Treating Small-Population Cancers in the Community Setting

Treating Small-Ppulatin Cancers in the Cmmunity Setting A survey f current practices in the treatment f chrnic myelid leukemia and a screening tl t identify effective practices July 2011 Assciatin f Cmmunity Cancer Centers 11600 Nebel St., Suite 201 Rckville, MD 20852 301.984.9496 www.accc-cancer.rg Page 1

Acknwledgments This prject and reprt were develped by the Assciatin f Cmmunity Cancer Centers in cllabratin with Health2 Resurces, a healthcare cnsulting cmpany. This prject is made pssible by an educatinal grant frm Nvartis Onclgy. We wuld like t acknwledge and thank the members f the ACCC Advisry Cmmittee, wh cntributed their valuable time and expertise t this prject: Kathy Allen, LSW, OSW-C, Yrk Cancer Center, Yrk, Pa. Edward Braud, MD, Springfield, Ill. Carl J. Bush, BS RN, Midwest Cancer Alliance, The University f Kansas Cancer Center, Wichita, Kans. Becky Dekay, MBA, Luisiana State University Health Sciences Center, Shreveprt, La. David S. DePrsper, MA, Flrida Hspital Waterman Cancer Institute, Taveres, Fla. Hildy Dilln, MPH, The Leukemia & Lymphma Sciety, White Plains, N.Y. Faye Flemming, RN, BSN, OCN, Suthside Reginal Medical Center Cancer Center, Petersburg, Va. Rhnda Griffin, RN, Center fr Cancer Care, Gshen Health System, Gshen, Ind. Maen Hussein, MD, Flrida Hspital Waterman Cancer Institute, Taveres, Fla. Elizabeth Kitlas, LMSW, The Leukemia & Lymphma Sciety, White Plains, N.Y. Francesc Turturr, MD, Luisiana State University Health Sciences Center, Shreveprt, La. Carl Westbrk, MD, Center fr Cancer Care, Gshen Health System, Gshen, Ind. ACCC prject staff Lu Anne Bankert Senir Directr, Prgrams and Meeting Kim LeMaitre, MS Directr, Educatinal Services Dn Jewler Directr, Crprate Cmmunicatins Amanda Pattn Assciate Editr Health2 Resurces staff Katherine H. Capps President Sandy Mau Vice President Jhn Harkey, PhD Lead Researcher Rxanna Guilfrd-Blake Directr, Strategic Cmmunicatins Assciatin f Cmmunity Cancer Centers 2011 All rights reserved. N part f this publicatin may be reprduced r transmitted in any frm r by any means withut the written permissin f the Assciatin f Cmmunity Cancer Centers Page 2

Treating Small-Ppulatin Cancers in the Cmmunity Setting Table f Cntents Intrductin and Key Findings... 4 Methds... 7 Survey Results... 11 Sectin 1. Infrmatin Needs. 11 Sectin 2. Resurce Adequacy.. 12 Sectin 3. Effective Prcesses..18 Sectin 4. Effective Perfrmance..27 Cnclusins and Next Steps..31 Identifying Exemplary Prgrams. 33 Thirteen dmains, r factrs, that may increase the likelihd that a cancer prgram is perfrming at a higher level than ther institutins Prfiles f Five Exemplary Prgrams... 38 Appendices Flrida Hspital Waterman Cancer Institute, Tavares, Flrida... 38 The Nebraska Medical Center, Omaha, Nebraska... 42 Sierra Nevada Memrial Hspital, Grass Valley, Califrnia... 45 Sutter Medical Center, Sacrament, Califrnia... 48 Lexingtn Medical Center, West Clumbia, Suth Carlina... 51 Appendix I: Pretest... 53 Appendix II a, b, c: Survey Instruments (available nline at http://www.accc-cancer.rg/educatin/educatin-cml-landing.asp) Appendix III: Results f Pretest (available nline at http://www.accc-cancer.rg/educatin/educatin-cml-landing.asp) Page 3

Intrductin and Key Findings The Assciatin f Cmmunity Cancer Centers (ACCC) launched a grund-breaking educatinal prgram in 2010 t prvide the cmmunity-based cancer care team the resurces they need t imprve the quality f care fr patients with small-ppulatin cancers. This educatinal prject, entitled Treating Small-Ppulatin Cancers in the Cmmunity Setting, was initiated with a fcus n chrnic myelid leukemia (CML). ACCC s bjectives were t: determine infrmatin and resurce needs f cancer prgrams that ACCC has the ability t address identify effective practices that prmte quality care in the management f CML patients determine which cancer prgrams had the mre effective practices assess current practices at cancer prgrams (ACCC members), and determine where current practices f cmmunity cancer prgrams differ frm practices determined t be mre effective. Many cmmunity-based cancer care prviders see a large number f patients with breast, lung, cln, r prstate cancers. Practice patterns are relatively well-established fr these cancers, and resurces are available fr bth prviders and patients. Many ther cancers, hwever, are seen less ften in the cmmunity setting. These lwincidence r small-ppulatin cancers present different challenges fr cmmunity-based cancer care prviders because 1) patients usually cme frm underserved r elderly ppulatins and d nt have the resurces r desire t be treated at large academic institutins; 2) physicians treating small-ppulatin cancers have limited time and resurces t incrprate emerging clinical data int practice; and 3) ther health prfessinals, including nurses, scial wrkers, and pharmacists, see these cancers less frequently and need infrmatin t better supprt their physicians and patients. What Are Small-Ppulatin Cancers? Smetimes referred t as lwincidence cancers r frgtten cancers Less than 20,000 cases/annually, althugh n single, widely accepted definitin exists Less frequently ccurring cancers: CML = 1-2 cases per 100,000 peple annually (NCI SEER, 2009) T assess current practices used in managing CML and ther small-ppulatin cancers and t identify thse cancer prgrams with mre effective practices, three surveys were develped that address the adequacy and effectiveness f 1) verall resurces and prcesses, 2) specific clinical prcesses, and 3) supprt services used in patients with CML and ther small-ppulatin cancers. The surveys were develped by ACCC and an advisry panel f nclgists, nurses, and scial wrkers, alng with Health2 Resurces, a healthcare cnsulting cmpany. The surveys were based n ne-hur interviews with an advisry panel f nclgists, nurses, and scial wrkers. The nline survey was administered during January and February 2011. Of 670 invitatins t take the Page 4

survey, 61 partial respnses and 27 cmplete respnses were received. The analysis was cnducted using the 27 cmpleted surveys. The sample f cancer prgrams cmpleting the three surveys is nt thught t be representative f all cancer prgrams, but is, instead, likely cmpsed f institutins that maintain a strnger fcus n CML and have intrduced mre effective prcesses fr managing CML. Key Findings Fr mst cancer prgrams, the experience with CML is limited and will remain s. Mre than 60 percent f the 27 respnding prgrams reprt fewer than 10 new CML patients annually, and even thse small numbers are likely divided amng several nclgists within the prgram. Even in cancer prgrams with a high vlume f CML cases (case lad abve 25), CML cases represent nly a small share f the cancers seen (less than 5 percent f the ttal). Because direct patient experience is mre limited fr small-ppulatin cancers, keeping current abut new treatments is particularly imprtant. Annual CML training fr clinical and supprt prfessinals keeps them up t date n new therapies and prcesses and up t speed n existing nes. Given that the financial implicatins f CML drug csts can be unique and smewhat daunting, the whle team, including financial cunselrs, wuld benefit frm training abut the needs f patients with CML. CML: Ready Reference Abut 5,050 new cases f CML are diagnsed yearly (2,930 in men and 2,120 in wmen) (2009). Abut 470 peple will die f CML (2009). CML accunts fr abut 10 t 15 percent f all leukemias. The average persn s lifetime risk f getting CML is abut 1 in 625. This disease is mre cmmn in men than in wmen. It is als mre cmmn in Whites than in African- Americans. The average age at diagnsis f CML is arund 66 years. Over half f cases are diagnsed in peple 65 and lder. This type f leukemia mainly affects adults, and is nly rarely seen in children. There has been dramatic prgress in treatment ver the past several years, s mst peple with CML are nw surviving at least 5 years after diagnsis. Statistics are frm The American Cancer Sciety s mst recent estimates fr CML in the United States, 2009. A high percentage f respndents indicated they wuld like t have resurces frm ACCC that address the needs f patients with CML and ther small-ppulatin cancers. Of the 27 respnding cancer prgrams, 87 percent indicated that patient educatin resurces wuld be helpful. Resurce lists, educatin prgrams fr prfessinals, and mdel plicies and checklists als were requested by mre than 60 percent f respndents. Clinical and supprt resurces used in managing CML patients Critical mass f clinicians available. Mre than tw-thirds f the 27 respnding cancer prgrams evidence at least a minimum critical mass f clinicians, including at least five bard-certified medical nclgists, at least tw hematlgists, and at least.5 nclgy-certified RNs fr every nclgist, including radiatin and surgical nclgists. In additin, mre than 80 percent f the respndents rate their nclgists training and experience as abve r well abve average. Mst advanced therapies available. Mst respnding prgrams ffer tyrsine kinase inhibitr therapies, and thus are ffering the mst advanced therapies, which have transfrmed survival rates. Hwever, electrnic health recrd (EHR) supprt fr CML treatments (EHR with flags, r integrated with cmputerized rder entry systems) remains limited t less than half f the respndents. Cmprehensive supprt services. Mst cancer prgrams ffer a brad array f supprt services in-huse and help patients and their families crdinate thse services. The supprt services, Page 5

hwever, are unlikely t be tailred t CML, and many cancer prgrams reprt that their supprt service prfessinals have little training r experience with CML. Management, clinical, and supprt services prcesses used in management f CML patients Mnitring prcess and utcmes. The cancer registry is used by all cancer prgrams; mst respndents (81 percent) indicate the registry data is shared with their executives, their clinicians, r bth. Amng the ne in fur respndents cnducting telephne surveys, almst all (84 percent) shared the data with executives r clinicians. Hwever, amng thse cnducting a mailed survey, nly 24 percent managed t share it with executives r clinicians, suggesting that the results f mailed surveys are perceived t be f nly limited value. Accreditatin. All but ne respndent indicated that their prgrams were accredited, and mst (85 percent) were accredited by the American Cllege f Surgens Cmmissin n Cancer. Clinical guidelines. All respnding cancer prgrams have access t natinal clinical guidelines. Hwever, in nly abut half the prgrams are guidelines incrprated int practice prtcls. In nly 15 percent are guidelines incrprated int prtcls thrugh an EHR cmpnent. Managing drug therapy. Mre than 80 percent f the prgrams schedule regular visits t check cmpliance with drug regimens and als check fr drug side effects. Hwever less than half fllw up between visits t check whether drug prescriptins have been filled (41 percent), and nly ne cancer prgram has specific plicies r guidelines cncerning actins t ensure drug cmpliance. Supprt staff training. Amng supprt staff, thse mst clsely invlved in direct clinical care (RNs, scial wrkers, and nutritinists) are als mst likely t have experienced CML-specific training (mre than half f the cancer prgrams prvide such training). Hwever, nly ne-third f the cancer prgrams had prvided training t ther key supprt prfessinals (e.g., mental health prfessinals r financial cunselrs). Mst (89 percent) respnding prgrams ffer at least sme types f supprt staff training abut CML. Perfrmance in managing clinical and supprt functins High ratings n clinical perfrmance. Mst respndents gave their cancer prgram a very high clinical perfrmance rating. Mre than half (56 percent) f the respndents rate their prgram abve r well abve average n all five perfrmance measures. Particularly imprtant amng the clinical ratings is that mst f the respndents assess their clinicians knwledge f the latest CML research and use f effective treatments t be abve r well abve average. Lwer ratings n supprt services perfrmance. Fewer respndents rate their prgram s perfrmance in prviding supprt services as highly (n average) as they rate clinical perfrmance. Since cmmunity cancer prgrams will see few cases f CML, mst prgrams will need cntinuing external supprt t help their clinicians remain current and t better target their supprt services t patients with CML. ACCC s newly established Cmmunity Resurce Centers, which can supply expertise and resurces, are expected t be well received by the Assciatin s membership. Because guidelines can help make up fr the lack f experience that many prgrams have in treating rare cancers, raising awareness arund the need fr clinical guidelines fr bth treatment and supprt services fr CML patients is imprtant. Equally imprtant is t encurage mre cancer prgrams t integrate their guidelines (and EHR sftware) int prtcls. The issue is particularly imprtant fr cancers that are rare and thus infrequently seen by clinicians and supprt staff. Page 6

Methds Advisry Panel ACCC established an advisry panel f fur physicians, an RN, and three scial wrkers (ne representing the Leukemia & Lymphma Sciety). All the physicians were bard-certified in hematlgy and nclgy. One nclgist practiced at a university medical center cancer prgram, and the ther three clinicians practiced in cmmunity cancer centers. Pretest Design and Administratin Members f the advisry panel, alng with Health2 Resurces, helped t design a test t evaluate general knwledge abut and treatment appraches fr CML. The test was designed t be administered twice: 1) as a pretest; 2) a year later t evaluate the effectiveness f educatinal prgrams. Between Sept. 16 and 27, 2010, 148 ACCC members tk the pretest n-line. At the ACCC annual meeting, 10 mre members cmpleted a hard-cpy versin. (See Appendix I fr the survey instrument.) All nine questins were multiple chice, with three t five pssible respnses plus a Dn t knw ptin. The questins were designed s that ne r mre chices culd be crrect. Fr sme questins, nly ne answer was crrect, but fr thers mre than ne answer was crrect. The verall average was 3.8 (f 9) questins crrectly answered. Physicians perfrmed the best (5.6 crrect), fllwed by pharmacists, nurses, and administratrs. Relatively few respnding physicians have significant gaps in knwledge; rather, any lack appears t be lack f cmplete knwledge abut an area f questining rather than lack f any knwledge. The mst ften missed treatment questins invlved when nt t prescribe imatinib and the clinical signs when imatinib is nt wrking. Pharmacists and nurses had fewer crrect answers than physicians; nurses scred well belw pharmacists. The knwledge gap fr nurses seems rather large acrss all clinical and almst all general questins. (See Appendix IV fr a mre detailed explanatin f the pretest results.) The fllw-up test will be administered in late 2011. Page 7

Survey Design and Administratin Advisry panel members were interviewed t dcument the imprtant elements in managing patients with CML, and the results f the interviews were used t cnstruct a screening survey questinnaire. Advisry panel members were asked t review a draft f the survey, and then, fllwing changes, tk the survey n behalf f their wn cancer centers in a trial run. The survey was undertaken in respnse t the availability f newer therapies that have greatly imprved utcmes fr CML, while intrducing new challenges t prviding lnger term mnitring and care. Mst individuals with a diagnsis f CML have been transfrmed frm patients facing almst-certain death within a few mnths r years t persns with a chrnic cnditin (analgus t diabetes) that can be managed, but nt cured, and wh can live a fairly nrmal life. The survey instrument was brken int three separate questinnaires, each fcusing n different aspects f caring fr patients with CML. Survey 1 (management) assessed verall resurces and prcesses used t manage care fr CML and ther small-ppulatin cancers. Survey 2 (clinical) assessed specific clinical prcesses used with CML and ther small-ppulatin cancers. Survey 3 (supprt) assessed supprt services used in care f patients with CML and ther smallppulatin cancers. All three surveys were designed n the SurveyMnkey web prtal. An email was sent t the 670 rganizatinal representatives f cancer prgrams with ACCC memberships n January 5, 2011. Each representative was sent a link t all three surveys and asked t distribute the three surveys t the individuals within the cancer prgram wh were mst likely t be able t cmplete the surveys. Each f the surveys tk less than 10 minutes t cmplete, althugh sme infrmatin (e.g., number f annual CML cases) may have required the respndent t reference dcuments cntaining statistical infrmatin abut case lads and persnnel t btain accurate infrmatin. Survey respnses were received between January 5 and February 17. Several prmpter emails were sent t encurage survey cmpletin, and a final effrt was made t get thse respndents wh had cmpleted ne r tw surveys t cmplete the remaining surveys. While mre than 100 rganizatins started at least ne f the three surveys, nly 61 cmpleted at least ne f the three surveys (including prviding name and address infrmatin), and 27 rganizatins cmpleted all three surveys. This level f full and partial respnse was less than anticipated, and may be due t several factrs, including 1) the survey asked fr sme infrmatin that may have been difficult t retrieve, leading sme cancer prgrams t start, but nt cmplete, the surveys; 2) CML is a rare cancer, and many cancer prgrams may have decided they didn t have enugh experience with the cancer t respnd; and 3) the target audience is bth busy and may receive frequent requests t cmplete surveys. As a result, respndents may have decided nt t cmplete a survey that targeted a cancer invlving such a small prtin f their clinical resurces, despite being members f ACCC and receiving the survey frm a trusted surce. A final factr that may accunt fr the lw respnse rate is that the survey was multidisciplinary, requiring input frm bth clinical and supprt staff and making it mre difficult t cmplete. Page 8

Respnding Cancer Prgrams Of the 670 cancer prgrams invited t cmplete the three surveys, apprximately 100 started a survey (cmpleted at least ne page f ne f the three surveys, each with tw r mre pages), 61 prgrams cmpleted at least ne survey, and 27 prgrams cmpleted all three surveys. We cmpared cancer prgrams that cmpleted ne r tw surveys with thse cmpleting all three surveys n case lad and determined little difference between the tw grups, althugh prgrams cmpleting nly ne r tw surveys were mre likely t have fewer new CML patients annually than prgrams cmpleting all three surveys. Hwever, in respnding t questins in the first survey in which the respndents rated their cancer prgram s services r resurces, the 15 prgrams that cmpleted that survey, but nt all three surveys, were less likely t rate their services and resurces as being abve r well abve average than prgrams cmpleting all three surveys. Results f that cmparisn are presented in Table 1. These differences between the tw grups suggest that cancer prgrams cmpleting all three surveys may have thught they were mre likely t be cnsidered as having effective practices in managing CML and thus had a strnger mtivatin t cmplete the survey. (Thse identified having mre effective practices knew they might be interviewed and pssibly highlighted in ACCC publicatins.) The remaining analysis was cnducted using the results frm the 27 cancer prgrams cmpleting all three surveys. We think these cancer prgrams are representative f prgrams with a strnger than average fcus n CML and that have intrduced mre effective practices t help manage CML patients. They are, then, nt taken t be representative f all cancer prgrams. Table 1. Percentage f Prgrams Rating Their Cancer Prgram Abve Average r Well Abve Average fr the Service Centers cmpleting Centers cmpleting ne r tw surveys all three surveys Financial services 50% 74% Clinical resurces 44 65 Written plicies 6 35 Tech supprt 19 48 Guidelines 50 70 Nte: N=15 fr centers cmpleting nly ne r tw surveys and N=26 fr centers cmpleting all three surveys. Our Apprach t the Analysis The gals f this study are: t determine infrmatin and resurce needs f cancer prgrams that ACCC has the ability t address t identify effective practices that prmte quality care in the management f CML patients t determine which cancer prgrams had the mre effective practices Page 9

t assess current practices at cancer prgrams (ACCC members), and determine where current practices f cmmunity cancer prgrams differ frm practices determined t be mre effective. T assess current practices used in managing CML and ther small-ppulatin cancers, and identify cancer prgrams evidencing mre effective practices (cmbined with adequate resurces), questins were asked and rating scales develped within the fllwing three brad categries: Clinical and supprt service resurces (Are they adequate?) Management, clinical, and supprt prcesses (Are they effective?) Clinical and supprt perfrmance (Is it effective?) Within each brad area, subscales were develped arund clinical services, supprt services, and prgram management. As a result, separate scale scres were develped in each f the fllwing areas: I. Resurce adequacy A. Vlume f CML cases B. Clinical resurces C. Supprt resurces II. III. Effective prcesses A. Management prcesses B. Clinical prcesses C. Supprt prcesses Effective perfrmance A. Clinical services B. Supprt services As part f the assessment, we scred respnses t survey items n the subscales abve and used the cmbined subscales as a screening tl t rank the cancer prgrams n their management f CML patients. The results and analysis are divided int fur majr sectins. The first sectin assesses infrmatin needs and is built arund a single questin asking respndents t indicate whether specific types f resurces wuld be helpful. The ther three sectins review ur findings in screening these 27 prgrams fr effective management f care fr CML patients, lking at resurce adequacy, effective prcesses, and effective perfrmance. CML is an ideal prxy fr the study f small-ppulatin cancers because f the number f patients diagnsed each year and the fact that there has been an increasing amunt f exciting, new clinical data and infrmatin abut mnitring and treating patients. Christian Dwns, JD, MHA ACCC Executive Directr Page 10

Results Sectin 1. Infrmatin Needs Respndents were asked t indicate what kinds f supprt, including patient educatin material and prfessinal educatin curses, wuld be helpful in managing CML patients (Table 2). The questin was asked n each f the three surveys (resurce adequacy, effective practices, effective perfrmance) and there were ften different individuals respnding fr each survey. Patient educatin material was selected as helpful by mst cancer prgrams (87 percent f respndents). Resurce lists were als selected by a large majrity f prgrams. Supprt grup infrmatin was selected by the least number f respndents. Resurces frm ACCC that are related t CML and ther small-ppulatin cancers will likely be well received by mst cancer prgrams. Table 2. Percentage f Respndents Indicating That Supprt Wuld Be Helpful, by Type f Supprt Patient educatin material 87% Supprt grup infrmatin 51 Resurce lists 74 Prfessinal educatin prgrams (CML) 62 Mdel plicies and checklists 69 N=27 Page 11

Results Sectin 2. Resurce Adequacy CML Case Lad Key Findings Fr mst cancer prgrams, the experience with CML is limited. Mst cancer prgrams reprt nly a small number f new CML cases each year (mre than 60 percent reprt fewer than 10 new CML patients annually), and even thse small numbers are likely divided amng several nclgists within the cancer prgram. Even in cancer prgrams with a high vlume f CML cases (abve 25), CML cases are typically less than 3-5 percent f the ttal cancer caselad. One f the key indicatrs f quality is sufficient vlume fr practitiners t maintain the experience needed t effectively prvide care. There are apprximately 5,000 new cases f CML diagnsed annually in the United States and, with increased survival fllwing the intrductin f mre effective treatments, the number f patients with CML is gradually rising. Nevertheless, the vlume f new and existing cases natinwide is small cmpared t the mre cmmn cancers such as prstate and breast, and the vlume at any particular cmmunity cancer prgram is likely t be very limited. Even the much higher vlume f CML cases at majr referral centers is likely t be a small fractin f ttal cancers seen at thse cancer prgrams. In Table 3, the vlume f CML cases (new cases and current caselad) is presented fr the 27 cancer prgrams participating fully in the survey. Thirty-ne percent f the cancer prgrams indicated they have fewer than five new cases f CML annually r that they have a current case lad f fewer than five. Fully 85 percent f respnding cancer prgrams indicate they have fewer than 25 new cases each year, and 57 percent indicate their existing case lad is less than 25. In cntrast, these same cancer prgrams reprt high vlumes f cancer cases verall (data nt shwn). Mre than half f these prgrams reprt that they see 1,000 r mre new cancer cases each year, and almst tw-thirds reprt a current case lad abve 1,000. In all but tw cancer prgrams, the percentage f CML cases is estimated t be less than 4 percent f all cancers seen at the prgram (data nt shwn), and in a third f the prgrams, it is less than r equal t abut 1 percent f all cancers under the institutin s care. Thus, CML is cnfirmed as a rare cancer that makes up a small prtin f the cancers seen at these prgrams, even thugh the 26 institutins respnding t this questin prbably treat abut 6-7 percent f the new cases natinwide. (Based n Page 12

survey results, we estimate that these 26 cancer prgrams treat between 300 and 400 new CML cases each year in the aggregate and have a current aggregate caselad f arund 500 CML patients.) In assessing cancer prgrams fr effective practices and in selecting ACCC cmmunity resurce centers (CRCs) fr CML, we limited final cnsideratin t cancer prgrams with a vlume f at least five new cases r an existing case lad f at least five. Seven prgrams did nt meet this minimum vlume requirement. Table 3. Vlume f New and Existing CML Patients Treated by the Respnding Cancer Prgram New cases Current active caselad Less than 5 31% 33% 5 t 9 31 14 10 t 24 23 10 25 t 99 12 33 100 r mre 4 10 N=26 fr new cases and N-21 fr current caselad Clinical Resurces Key Findings Mst respnding cancer prgrams (mre than tw-thirds) evidence at least a minimum critical mass f clinicians (bard-certified medical nclgists and hematlgists and nclgy certified RNs). Mst respnding prgrams ffer the tyrsine kinase inhibitr therapies (the therapies that have transfrmed survival rates). Mst respndents (mre than 80 percent) rate their nclgists training and experience as abve r well abve average. EHR supprts fr CML (EHR with flags, r integrated with CPOE systems) remain limited t less than half f the respnding cancer prgrams. In assessing clinical resurces fr treating patients with CML, we reviewed survey respnses fr the type and number f specialists available, their training and experience with CML, the therapies ffered by the cancer prgram, and clinical supprts available thrugh access t prficient labs and availability f EHR supprt. In Table 4, the number f clinicians (physicians and RNs) active n the cancer prgrams treatment teams and wh wuld be ptentially invlved with CML patients are presented by prfessinal psitin. Page 13

Table 4. Average Number f Clinicians Active in the Respnding Cancer Prgrams, by Type Medical nclgists 10.1 Bard-certified hematlgists 7.1 Onclgy certified RNs 15.7 N=27 Nte: Bard-certified hematlgists are a subset f the medical nclgists. A key element fr effective practice is having a critical mass f prfessinals wh interact with each ther n a regular basis. Based n input frm the advisry panel, we used the fllwing rules f thumb in estimating whether a cancer prgram had a critical mass f prfessinals: nclgists (five r mre), hematlgists (tw r mre), and nclgy-certified RNs (.5 RNs fr every nclgist, including radiatin and surgical nclgists). Amng the respnding cancer prgrams, 69 percent had five r mre active medical nclgists; 96 percent had tw r mre hematlgists; and 63 percent had at least.5 nclgy-certified RNs fr every nclgist. In Table 5, the range f therapies ffered by the cancer prgrams fr CML treatment is presented. Mst respndents (at least 75 percent) ffer chemtherapy, bilgic therapies, and tyrsine kinase inhibitr therapies, while nly abut ne in fur ffers stem cell transplants and dnr lymphcyte infusin therapies. Table 5. Percentage f Prgrams Offering CML Treatment, by Type f Treatment PO chemtherapy 84% IV chemtherapy 80 Bilgic therapies 76 Therapies with a tyrsine kinase inhibitr 88 Stem cell transplants 24 Dnr lymphcyte infusin 20 N=25 In determining scaling fr these therapies, we reasned that having a brader scpe f therapies wuld give the patient a fuller set f ptins. Accrdingly, in rating cancer prgrams fr therapies (as resurces), prgrams btained mre pints fr the brader range. In Table 6, the respnding cancer prgrams evaluate their clinical resurces using a 5-pint scale, ging frm 1 (well belw average) t 5 (well abve average). The percentage f cancer prgrams rating themselves as abve r well abve average fr the indicated metrics is prvided. A high percentage f the respndents (84 percent) rate their clinicians training and experience related t CML as strng (abve r well abve average). Page 14

Mst cancer prgrams rate their lab services as strng (abve r well abve average), but nly half f the prgrams indicated that their EHR systems deserved an abve r well abve average rating. Lab services, f curse, may be in-huse, but, if necessary, can be btained frm reginal r natinal labs. With the brader range (reginal r natinal) f chices, a strng clinical team can identify and use a lab that ffers the needed expertise. EHR systems, while nw widely used by nclgists, are nt as likely t be well targeted t smallppulatin cancers such as CML. Table 6. Percentage f Prgrams Reprting Abve Average r Well Abve Average Ratings n Clinical Resurces Metrics Related t CML Training and experience f nclgists 84% Adequate technlgy supprt (EMR/EHR with flags, integrated CPOE) 48 Diagnstic lab wrk meets quality standards 83 Adequacy f clinical resurces 65 Nte: Ratings were n a five-pint scale Clinical Resurces Scale Fllwing cnsultatin with the advisry panel, we cnstructed a clinical resurces scale by assigning pints fr each f the fllwing criteria. The percentage f cancer prgrams receiving a pint is given in parentheses. This percentage may differ frm thse in the tables since the percentage is taken f all 27 cancer prgrams rather than the number f prgrams answering a particular questin r prviding a specific rating. Tw r mre bard-certified hematlgists (85 percent) At least.5 nclgy certified RNs fr every nclgist (including medical, radiatin, and surgical) (63 percent) Five r mre medical nclgists (67 percent) Offer targeted therapies with a tyrsine kinase inhibitr (81 percent) Offer chemtherapies and bilgical therapies (up t 3 pints depending n the number f different therapies ffered) (89 percent ffer at least ne f three) Offer stem cell transplants r dnr lymphcyte therapies (1 pint if either ffered) (26 percent ffer at least ne) CML training and experience f nclgists (self rating) (abve average r well abve average=1 pint) (78 percent) Diagnstic lab wrk n CML meets quality standards (self rating) (abve average r well abve average=1 pint) (74 percent) Clinical resurces (self rating) (abve average r well abve average=1 pint) (63 percent) Technlgy supprt fr treatment (self rating) (abve average r well abve average=1 pint) (44 percent) Page 15

Table 7. Clinical Resurces Scale Scres (Available pints 12) Scale scre pints Number in categry 1-5 5 6-10 17 11-12 5 Average scre 8.1 Range 1-12 Supprt Services Key Findings Mst cancer prgrams ffer a brad array f supprt services in-huse and als prvide smene t help the patient and family crdinate thse services. Amng all the supprt services queried, nly hspice was mre likely t be ffered by external agencies than thrugh internal resurces. Mst f the supprt services queried were available either internally r externally at mre than 85 percent f the cancer prgrams. The exceptin was mentring services, available at nly 64 percent f the prgrams. Only a small number f cancer centers prvided supprt services with a specific fcus n CML. Supprt services are used t help patients and their families cpe with the illness and its cnsequences, including help determining which services are actually needed as well as arranging finances and grup sessins with ther cancer patients. Cancer prgrams were asked t indicate whether 10 specific supprt services were prvided, either inhuse r externally (Table 8). Als, they were asked t indicate whether the services included features that were targeted specifically t CML r were mre generally targeted. Given the brad range f supprt services that may be needed, crdinatin is critical. Almst all (93 percent) f the cancer prgrams d crdinate supprt services. Page 16

Table 8. Supprt Services Offered and the Percentage Offered Internally at the Cancer Prgram r Thrugh External Agencies Available Internal External internally & Nt nly nly externally available Crdinatin f services supprt 78% 7% 15% 0% Nutritin cunseling 89% 4% 7% 0% Symptm management services 81% 4% 11% 4% Financial cunseling 70% 19% 11% 0% Mental health services 59% 26% 11% 4% Cancer supprt (face-t-face) 59% 22% 15% 4% Cancer supprt (telephne) 56% 26% 4% 14% Educatinal sessins 52% 22% 15% 11% Mentring services 30% 30% 4% 36% Hspice services 26% 56% 15% 97% Nte: services ffered internally include the sum f clumn 1 (internal nly) and clumn 3 (available internally and externally). Table 8 indicates that nutritin cunseling (96 percent ffered internally) and symptm management (92 percent ffered internally) are mst ften ffered in-huse, and nly rarely thrugh external agencies alne. Hspice is far mre likely t be ffered thrugh external agencies (71 percent external versus 41 percent internal). Mst respnding cancer prgrams ffer a brad range f supprt services in-huse; when the prgrams d nt ffer a specific service, patients can be referred t services prvided externally, if necessary. Only a small number f cancer prgrams (4) prvided any f these supprt services with a specific fcus n CML. Fr mst prgrams, CML is t small a prtin f the case mix t secure dedicated resurces. Supprt Resurce Scale This scale was cnstructed by prviding ne pint fr each categry f supprt service ffered externally, tw pints fr each service ffered internally, and an extra pint if the service was specific t CML. A specific kind f service culd receive up t fur pints. Table 9. Supprt Resurce Scale Scres (Available pints: 40) Scale scre pints Number in categry 12-15 7 16-19 11 20-27 9 Average scre 17.8 Range 12 t 27 Page 17

Results Sectin 3. Effective Prcesses The survey examined specific prcesses that wuld lead t mre effective management f CML patients. Prcesses were differentiated, again, by whether they fcused n clinical r supprt services, r verall management issues. Management Prcesses Key Findings The cancer registry is used by all cancer prgrams and mst (81 percent) share the registry data with their executives, their clinicians, r bth. All cancer prgrams except ne reprted that they were accredited, mst (85 percent) by ACOS. Amng the ne in fur cancer prgrams cnducting telephne surveys, almst all (84 percent) shared the data with executives r clinicians. Hwever, amng the larger number cnducting mailed surveys, nly 24 percent shared data with executives r clinicians. T examine verall management f the cancer prgram we asked whether the institutin was accredited and whether the institutin systematically fllwed up n patient perceptins f quality f care (satisfactin) and n utcmes (survival, quality f life). All except ne f the respndents indicated that their cancer prgram is accredited. Mst (85 percent) f respndents indicated that their cancer prgram had received accreditatin frm the American Cllege f Surgens (ACOS), but a significant minrity (33 percent) had received accreditatin frm the American Sciety f Clinical Onclgy (ASCO) Quality Onclgy Practice Initiative (QOPI). A few cancer prgrams had received ther accreditatins. Table 10. Percentage f Cancer Centers Using Specific Methds fr Assessing Patient Care and Outcmes and Sharing Data with Executives and Clinicians % using % sharing data with executives/clinicians Cancer registry 100% 81% Natinal QA guidelines 89% 85% Mailed survey 93% 22% Telephne survey 26% 22% Page 18

All cancer prgrams use the cancer registry, and mst (81 percent) share the registry data with either their executives r their clinicians, r bth. Mst als have implemented natinal quality assurance guidelines and als share that data. The mailed survey is easy and ppular, but the results are rarely shared with executives r clinicians, suggesting they are nt viewed as prviding useful data. The telephne survey, hwever, thugh rarely used is almst always shared with clinicians and executives. The telephne survey is mre expensive t administer, but typically btains a mre representative sample f patients, and can ptentially include mre clinically imprtant data. Management Prcesses Scale The management prcesses scale was cnstructed by giving a pint fr accreditatin, and pints fr each type f mnitring activity used. Additinal pints (up t 2) were added fr sharing the results with executives (1 pint) and clinicians (1 pint). Table 11. Management Prcesses Scale Scres (Available pints: 13) Scale scre pints Number in categry 1 t 5 5 6 r 7 16 8 t 13 6 Average scre 7.3 Range 1 t 13 Clinical Prcesses Key Findings Eighty percent f cancer prgrams participate in clinical trials f sme type, but nly ne-third f the prgrams participate in clinical trials invlving CML. All cancer prgrams have access t natinal clinical guidelines. Hwever, fr half f the prgrams, guidelines use varies by nclgist practice patterns, and fr half the prgrams guidelines are incrprated int practice prtcls. In nly 15 percent f cancer prgrams are guidelines incrprated int an EHR. A large majrity f cancer prgrams (80 percent plus) schedule regular visits t check cmpliance with drug regimens and als check fr drug side effects. Hwever very few fllw up between visits abut whether drug prescriptins have been filled (41 percent), and nly ne prgram has specific plicies r guidelines cncerning actins t ensure cmpliance. A number f questins were asked abut clinical prcesses t assess indicatrs f quality, including questins abut whether the cancer prgrams cnducted clinical trials, used clinical guidelines, r used prcesses t imprve drug regimen cmpliance. Page 19

Participating in clinical trials is seen as an indicatr f quality because f the rigrus apprval prcess required t cnduct trials and the versight during trials. In Table 12, the percentage f cancer prgrams participating in clinical trials is presented. The table indicates that just ver ne-third f the cancer prgrams participate directly in CML clinical trials. A larger share, mre than half, participated in clinical trials with ther small-ppulatin cancers. Anther third f the cancer prgrams participate in clinical trials thrugh partnerships with ther centers r facilities. Only ne in five cancer prgrams des nt participate in clinical trials at all. Table 12. Percentage f Cancer Prgrams Cnducting Clinical Trials, by Type f Clinical Trial CML trials 36% Other small-ppulatin trials 52 Clinical trials thrugh partnerships 32 Other clinical trials 24 N clinical trials 16 Nt apprved fr clinical trials 4 N=25 Anther indicatr f higher quality is the rutine use f clinical guidelines. Tw questin sets were asked abut clinical guidelines: first, whether guidelines are used fr managing CML, and the secnd asking hw guidelines are incrprated int clinical practice. In Table 13, the percentage f cancer prgrams using natinal guidelines, r that have adapted (mdified) guidelines fr their wn use, r that have develped their wn guidelines is given. Table 13. Percentage f Cancer Prgrams Using Clinical Guidelines Have access t and use natinal guidelines 93% Have mdified natinal guidelines fr wn use 52 Have develped wn guidelines 15 Almst all cancer prgrams have access t and use natinal guidelines (such as thse frm NCCN) fr treatment f CML and ther small-ppulatin cancers, and almst half f thse have als adapted (mdified) thse guidelines t sme extent t fit their particular situatins. A few cancer prgrams with access t natinal guidelines have develped their wn guidelines, althugh they have access t natinal guidelines. Only ne respndent indicated that his r her cancer prgram develped its wn guidelines and that clinicians at the prgram dn t have access t natinal guidelines. Page 20

In Table 14, infrmatin is presented n hw thse guidelines are incrprated int the practice pattern f the nclgists. Table 14. Percentage f Cancer Prgrams Incrprating CML Guidelines int the Practice Pattern f the Onclgists, by Hw Incrprated Guidelines incrprated int EHR 15% Guidelines incrprated int practice prtcls 54 Guidelines part f QA plicies 31 Guidelines use varies by nclgist 50 N=26 CML-related guidelines are nly rarely incrprated int EHRs. Hwever, in abut half the cancer prgrams guidelines are part f practice prtcls, while in anther half guidelines use is said t vary, depending n the practice pattern f the nclgist. While all cancer prgrams have access t clinical guidelines, it appears that nly half f the prgrams have fully integrated the guidelines int the physician s practice. In the treatment f CML, new therapies have rendered the disease chrnic rather than rapidly fatal. As a result, much f the effrt that fcused n acute care has nw been extended int a chrnic care envirnment. Since the therapies are nt curative, they must be cntinued indefinitely, r else the cnditin may reassert itself. As a result, a key element in effective treatment is ensuring that the patient acquires the drugs and cntinues t take the drugs thrugh his r her life. The drugs are expensive and can have side effects. As a result f the new therapies, effective treatment means cntinuus management f the drug regimen. Specific appraches taken by cancer prgrams t ensure drug cmpliance are presented belw in Table 15. Table 15. Percentage f Cancer Prgrams with Indicated Prcesses in Place t Ensure Patient Cmpliance with Cancer Drug Regimen and Treatment Prtcls Regular nclgy visits scheduled 85% Drug side effects assessed at visits 81 Phne fllw-up fr missed appintments 78 Supprt service needs assessed at visits 70 Phne fllw-up if prescriptins nt btained 41 Specific plicies r guidelines fr nn-cmpliance 4 Mst prgrams nclgists schedule regular nclgy visits fr CML patients, assess drug side effects, and initiate phne fllw-ups fr missed appintments. Als, mst prgrams assess supprt service needs at each visit. Page 21

Less than half f the cancer prgrams fllw up with the patient if a prescriptin is nt btained, in large part because thse prgrams dn t knw whether a prescriptin was btained until the patient s next visit. Very few prgrams nly ne have a specific plicy ensuring drug cmpliance fr CML patients. Clinical Prcesses Scale If the cancer prgram was invlved in cnducting clinical trials fr CML, r ther small-ppulatin cancers, ne pint was assigned. All prgrams were fund t have access t clinical guidelines, s access did nt differentiate the prgrams. If clinical guidelines were incrprated int practice thrugh prtcls, electrnic medical recrds, r as a cnsistent part f QA standards, the cancer prgram received ne pint. If respndents rated their prgram abve average r well abve average n use f tumr bards and n use f hematlgy cnferences, they received a pint fr each. Finally, prgrams received a pint each (up t 5 pints) fr specific drug regimen cmpliance activities. The scale items and percentages f cancer prgrams receiving pints are given belw: Cnduct clinical trials (56 percent) Use f tumr bards (abve average r well abve average) (67 percent) Use f hematlgy cnferences (abve average r well abve average) (56 percent) Incrprate clinical guidelines int standard practice (56 percent) Use specific practices t ensure cmpliance with therapeutic drug regimens: Scheduled regular nclgy visits (85 percent) Visits include assessment f supprt service needs (70 percent) Visits include assessment f drug side effects (81 percent) Phne fllw-up fr missed appintment (78 percent) Phne fllw-up if patient fails t btain prescriptins (41 percent) Have a plicy regarding patient nn-cmpliance (4 percent) Table 16. Clinical Prcesses Scale Scres (Available pints: 10) Scale scre pints Number in categry 1 t 5 7 6 r 7 13 8 t 10 7 Average scre 5.9 Range 1 t 10 Page 22

Supprt Prcesses Key Findings Amng supprt staff, thse mst clsely invlved in direct clinical care (RNs, scial wrkers, and nutritinists) are mst likely t have participated in CML-specific training. EHRs have becme widespread in cancer prgrams, but tailring t CML has ccurred nly in a minrity f prgrams. Mst (89 percent) f respnding cancer prgrams ffer at least sme frm f supprt staff training abut CML. Supprt prcesses are practices and prcedures designed t imprve the prvisin f supprt services fr CML patients. A series f questins was asked cncerned with the fllwing: Are there plicies and related checklists and frms t help assess the CML patient s supprt needs? What CML-specific training and experience d supprt staff have? What prcedures and activities are there t ensure effective cmmunicatin f supprt staff with each ther, with physicians, and with patients? What educatin pprtunities are supprt staff affrded annually t maintain their currency with CML and ther small-ppulatin cancers? In Table 17, the percentage f cancer prgrams that use plicies, checklists, frms r guidelines fr the assessment f CML patients supprt needs is indicated. Table 17. Percentage f Cancer Prgrams that Have Plicies, Checklists r Frms, r Guidelines fr the Assessment f CML Supprt Needs Plicies 57% Checklists/frms 50 Guidelines 67 N=27 Tw-thirds f the cancer prgrams fllw guidelines fr making needs assessments fr patient supprt services, and mre than half f respndents have develped plicies abut assessments, with mst f thse develping plicies als develping checklists r frms t help implement the plicies. Page 23

A key element in the ACCC initiative is t prvide educatin and educatinal resurces t clinical and supprt prfessinals cncerning effective management f CML. In Table 18, the percentage f cancer prgrams with supprt staff having CML-specific training r experience is prvided. Table 18. Percentage f Cancer Prgrams Prviding CML-specific Training t Supprt Staff, by Type f Supprt Staff Onclgy RNs 78% Scial wrkers 56 Nutritinists 48 Mental health cunselrs 33 Patient navigatrs 26 Financial cunselrs 22 Administrative supprt staff 22 N=27 The results indicate that as the supprt functin mves away frm mre direct care twards administrative r financial supprt, the supprt staff is less likely t have any CML-specific training. Given that the financial implicatins f CML drug csts can be unique and smewhat daunting, even financial cunselrs wuld benefit frm training abut CML and its csts, including the cst f supprt services. An imprtant cmpnent f supprt services is crdinatin amng supprt and clinical team members. Fr example, effective crdinatin requires cmmunicatin amng the different prviders with the patient and family. In Table 19, the percentage f cancer prgrams using different techniques t prmte effective cmmunicatin is indicated. Table 19. Percentage f Cancer Prgrams Using Indicated Methd f Cmmunicatin Amng Clinical and Supprt Prfessinals Infrmal cnversatins 69% Supprt prfessinals attend tumr bards 62 Autmatic ntificatin f missed appintments 42 Supprt team meets fllwing initial visits 23 EHR flags imprtant infrmatin 19 Only limited cmmunicatin 12 N=26 Only 12 percent f cancer prgrams indicate that cmmunicatin with and amng supprt prfessinals is limited. Hwever, fr mst prgrams the pprtunities fr cmmunicatin seem t rest mstly n infrmal cnversatins. In less than half f the prgrams is there autmatic ntificatin f supprt staff if an appintment is missed, and the supprt team meets after the initial patient visit in less than 25 Page 24

percent f respndents. EHRs are becming fairly cmmn in nclgy practices, but the EHR is nt yet in widespread use fr supprt services arund CML and ther small-ppulatin cancers. Table 20 shws the percentage f cancer prgrams ffering a brad array f appraches t educating supprt staff abut CML. Table 20. Percentage f Cancer Prgrams Offering the Fllwing Appraches fr Supprt Staff Training Abut CML Invited speakers 67% Vendr spnsred sessins 56 In-huse training sessins 48 Peridic tumr bards 44 Cntinuing educatin requirements 30 Individual initiative nly 30 N=27 Table 20 indicates that many cancer prgrams have ffered a variety f educatin sessins fr supprt during the past year that include infrmatin n CML. All tld, 89 percent f the cancer prgrams ffer sme frm f supprt staff educatin (ther than the individual initiative respnse) fcused n the specifics f CML and ther small-ppulatin cancers. Hwever, nly abut ne-third f the prgrams have built CML and ther small-ppulatin cancer training int CEU requirements. Supprt Prcesses Scale T cnstruct the supprt prcesses scale scre, the fllwing items were assigned a pint each and aggregated: Plicies/checklists regarding supprt assessment (almst always required r used) (56%) Use f guidelines in supprt assessment (almst always required r used) (67%) CML-specific training f supprt staff (percent with mderate training/experience r mre) Onclgy RNs (78%) Scial wrkers (56%) Mental health cunselrs (33%) Patient navigatrs (26%) Financial cunselrs (22%) Nutritinists (48%) Fertility cunselrs (15%) Physical/ccupatinal therapists (19%) Spiritual cunselrs (11%) Administrative supprt staff (22%) Effective cmmunicatin amng clinical and supprt persnnel and patients Autmatic ntificatin f missed appintments (41%) EHR/EMR flags imprtant infrmatin (19%) Supprt persnnel attend tumr/hematlgy bards (59%) Supprt team meets fllwing initial visit (22%) Page 25

Infrmal cnversatins amng clinical/supprt persnnel (67%) Educatin pprtunities CEU requirements (30%) In-huse training (48%) Vendr-spnsred infrmatin sessins (56%) Peridic tumr bards (44%) Peridic hematlgy bards (26%) Grand runds (22%) Invited speakers (67%) Table 21. Supprt Prcesses Scale Scres (Available pints: 24) Scale scre pints Number in categry 1 t 5 5 6 t 9 11 10 t 21 11 Average scre 9.2 Range 1 t 21 Page 26

Results Sectin 4. Effective Perfrmance Respndents were asked t rate the clinical and supprt perfrmance f their cancer prgrams n a wide range f parameters. The ratings used a 5-pint scale (well belw average, belw average, average, abve average, and well abve average). The results f these assessments are given belw. Clinical perfrmance Key Findings Mst respndents gave their cancer prgrams a very high clinical perfrmance rating (56 percent f the respndents gave their prgram an abve r well abve average rating n all five measures). A particularly imprtant finding is that mst (85 percent r mre) f respndents assess their clinicians knwledge f latest CML research and use f effective treatments t be abve r well abve average. Clinical perfrmance was measured by whether the cancer prgrams treatments were effective and nclgists were up t date, whether the prgrams managed patient transitins (t ther centers r practices) well, and whether patients were satisfied with care and experiencing gd utcmes. The clinical perfrmance (self-rating) results are presented in Table 22. The Table depicts the percentage f respndents giving their prgrams the highest rating f well abve average n each f five scales. Table 22. Percentage f Cancer Prgrams Rating Their Perfrmance as Well Abve Average n the Fllwing Scales Onclgists abreast f CML research 52% (N=25) Onclgists use mst effective CML therapies 43 (N=23) Transitins and referrals t and frm ther 35 (N=23) majr cancer centers CML patients satisfactin with care 52 (N=23) CML patient utcmes (survival, quality f life) 26 (N=23) Nte: Perfrmance scale is a five-pint scale frm 1 (well belw average) t 5 (well abve average). Page 27

The respndents give their cancer prgrams very high ratings n the clinical perfrmance measures. The mst likely explanatin is that these prgrams respnded fully t the survey because they are mre fcused n these cnditins than cancer prgrams that did nt respnd. In ther wrds, there is likely a respnse bias encuraging the respnse f prgrams that have mre effective prcesses in place t manage CML effectively. If abve average is cmbined with well abve average (data nt shwn), then mre than 80 percent f the respndents give their cancer prgram the abve r well abve average rating n fur f the five scales. Fr example, 87 percent f the respndents rate their prgram abve r well abve average n the utcmes measure (quality f life, survival). On the questins invlving nclgists abreast f CML research and nclgist use mst effective CML therapies, mre than 40 percent f the respndents rate their prgram well abve average, and mre than 85 percent f the prgrams rate their clinicians abve r well abve average. Mst f the respndents, then, view their prgram as effective in their clinical perfrmance (n the chsen measures). Clinical Perfrmance Scale The clinical perfrmance scale was cnstructed frm the questin asking respndents t rate their prgram n eight clinical parameters. The scale assigned a pint fr each parameter that was rated abve average r well abve average n five f the eight items (shwn in Table 23), fr a ttal f five pssible pints. Onclgists abreast f latest CML research (88%) Onclgists use mst effective therapies (87%) Transitins and referrals (74%) Satisfactin with care (91%) CML utcmes (survival, quality f life) (87%) Table 23. Clinical Perfrmance Scale Scres (Available pints: 5) Scale scre pints Number in categry 0 t 3 5 4 6 5 14 Average scre 4.0 Range 0 t 5 Page 28

Supprt Services Perfrmance Key Findings Quality and effectiveness f supprt services are rated lwer than clinical perfrmance. On ne critical item, respnsive t patients, 85 percent f respndents rated the effectiveness f supprt services as abve average r well abve average. Cancer prgrams were asked t rate their prgrams perfrmance n seven parameters indicative f quality f supprt services. The parameters were rated n a 5-pint scale running frm 1 (well belw average) t 5 (well abve average). The results are presented in Table 24. A smaller percentage f the respndents rated their supprt services perfrmance as highly as their clinical perfrmance, with ne exceptin. The percentage f respndents ranking their prgram s perfrmance as abve r well abve average was well belw 50 percent n three items and in the 50 percent range fr tw ther items (use guidelines and mnitring drug cmpliance). Hwever, n a very critical item, respnsive t patients, 85 percent f the cancer prgrams rated their perfrmance as abve average r well abve average. Table 24. Percentage f Cancer Prgrams Rating Quality and Effectiveness f Supprt Services fr CML as Abve Average r Well Abve Average Respnsive t patients 85% Cmprehensive services 63 Mnitring drug cmpliance 52 Use f clinical guidelines 48 Educatin n drug interactins 37 Current n CML research 33 Prtcls 30 N=27 The three items with the lwest percentage f abve average ratings invlved educatin abut drug interactins, being current n CML research, and the use/availability f effective prtcls fr supprt services. A smewhat higher percentage (apprximately 50 percent) rated themselves abve average n use f clinical guidelines in supprt services and n mnitring drug cmpliance. Supprt Perfrmance Scale This scale was cnstructed frm the questin asking respndents t rate the perfrmance f the supprt staff at their cancer prgram n seven parameters. Again, a prgram was given a pint fr each Page 29

item in which an abve average r well abve average rating was given, fr a maximum scale scre f seven. Specific items in the rating were as fllws: Cmprehensiveness f supprt services (63%) Use f clinical guidelines (48%) Supprt staff abreast f CML research (33%) Mnitring f patient cmpliance with drug therapy (52%) Effective prtcls fr supprt services (30%) Educatin n drug interactins (37%) Respnsiveness t patient cncerns and questins (85%) Table 25. Supprt Perfrmance Scale Scres (Available pints: 7) Scale scre pints Number in categry 0 t 2 9 3 t 5 12 6 t 7 6 Average scre 3.5 Range 0 t 7 Summary f Scale Scres The ttal effective practices scre is the weighted sum f the seven individual scale scres. The subscales were weighted by dividing each actual scale scre by the average scre fr that scale and then summing acrss all the scales t cmpute an verall scre with each individual scale receiving equal weight. The ttal scale scre averaged 7.0 (the subscales were nrmalized and the ttal represented the sum f the seven subscales). The scale scres f individual cancer prgrams ranged frm 2.8 t 11.1. Table 26. Summary f Scale Scres Available Average Pints Scre Clinical resurces 12 8.1 Supprt resurces 40 17.8 Management prcesses 13 7.3 Clinical prcesses 10 5.9 Supprt prcesses 24 9.2 Clinical perfrmance 5 4.0 Supprt perfrmance 7 3.5 Page 30

Cnclusins and Next Steps The Need fr Resurces and Educatin Because CML and ther small-ppulatin cancers are rare, cmmunity cancer prgrams will see few cases. As a result, direct daily experience (which will be lacking) will have t be supplemented r replaced by easily accessible third-party infrmatin, including guidelines, educatinal prgrams, and expert cnsults prvided by third parties such as NCCN, ACCC, the Leukemia & Lymphma Sciety, r ACCC-rganized Cmmunity Resurce Centers (CRCs). ACCC s CRCs will specialize in a particular small-ppulatin cancer (such as CML) and, with supprt frm ACCC, share their expertise and resurces with ther cmmunity cancer prgrams. These Cmmunity Resurce Centers, which will be rganized by ACCC, shuld prvide a useful advance twards mre effective management f CML and ther small-ppulatin cancers thrughut the natin. Identified thrugh the survey prcess and in-depth fllw-up interviews, ACCC s advisry panel selected fur cancer prgrams t serve as ACCC s CML CRCs: Flrida Hspital Waterman Cancer Institute, Tavares, Fla. Harbin Clinic, Rme, Ga. Sierra Nevada Memrial Hspital, Cmprehensive Cmmunity Cancer Center, Grass Valley, Calif. The Nebraska Medical Center, Omaha, Nebr. Prviders acrss the cuntry can cntact the CRCs, whse members will act as mentrs and facilitatrs t assist ACCC-member prgrams by prviding timely infrmatin, advice, and respnses t questins abut care fr patients with CML. Fr supprt staff, especially thse wh are nt directly tied in t clinical care, educatin may be the mre imprtant effectiveness factr, by raising awareness f the special needs f patients with CML r ther small-ppulatin cancers. Fr example, with CML, lng-term survival means that a new set f financial, drug cmpliance, and scial issues cme int play. Supprt staff can play a big rle in helping patients successfully cpe with the new set f issues arising with a chrnic cnditin. Educatin abut treatment csts, drug side effects, drug cmpliance, and patient prspects need t be part f the supprt staff s annual training. The Need t Incrprate Guidelines Clinical guidelines fr treatment f CML and ther cancers were fund t be generally available (purchased by the grup r the cancer center) t clinicians at cancer centers, but thse guidelines are nt yet universally incrprated int prtcls. Only abut half f the cancer prgrams have incrprated clinical guidelines int prtcls, and nly 15 percent have guidelines incrprated int their EHR. ACCC can supprt the intrductin f prtcls and f EHR-based prtcls in particular by highlighting thse cancer prgrams with effective prtcls and EHR applicatins, and pinting ut hw prcesses Page 31

and utcmes have been affected at thse institutins. This fcus n effectiveness shuld raise the awareness levels f thse prgrams withut guideline-supprted prtcls. Fr supprt staff, abut tw-thirds have access t guidelines, and abut half f the cancer prgrams have incrprated guidelines int the supprt staff s daily rund by having plicies, r by having frms r checklists t help implement the plicies. The Need fr Mre Effective Use f Health Infrmatin Technlgy Even the mst effective prgrams face challenges with health infrmatin technlgy. Often, there are multiple EHR systems with little interperability. The Need fr Mre Sphisticated Ways t Mnitr Medicatin Cmpliance Cancer prgrams d manage side effects, educate patients abut drug therapy, and address many medicatin-management issues. But the ne exceptin reveals a larger challenge: mnitring cmpliance. There appears t be a marked lack f tls t determine if a prescriptin was filled and whether a patient is adhering t therapy. That said, amng mst f the centers interviewed, the supprt ffered by staff (ranging frm the familiarity with patients t nutritinal cnsults) appears t prmte cmpliance/adherence with regimens. The patient-centered, team-based, supprtive apprach t care appears t create an envirnment in which patients will discuss their side effects r ther issues rather than simply ceasing therapy. Mving frward, the prject will address all these needs, especially as they relate t lng-term survivrship. As we wrap up the first year f the prject, the need fr ACCC t develp resurces is clear. A high percentage f survey respndents indicated they wuld like t see ACCC develp resurces that target CML and ther small-ppulatin cancers. In particular, respndents indicated they wuld like t see patient educatin resurces, educatinal prgrams fr prfessinals, and mdel plicies and checklists. Mst cancer prgrams will need cntinuing external supprt t help their clinicians remain current and their supprt services t be well targeted. ACCC has already initiated a number f new resurces in additin t its CML Cmmunity Resurce Center: ASK - Answers, Slutins, and Knwledge is an active nline discussin cmmunity dedicated t CML and is facilitated by CRC members. ACCC s CML web prtal features patient educatin resurces, prfessinal resurces, and news, as well as peer-reviewed articles. Six pdcasts are nline, hsted by Dr. Stuart Gldberg and Dr. Terrance Cescn, abut issues assciated with drug resistance, tyrsine kinase inhibitrs, and apprpriate use f the PCR test. The Effective Practices in CML webinar is psted n ACCC s website. A number f pstings abut CML have appeared n ACCC s blg, ACCCbuzz, and n ACCC s members-nly nline cmmunity. As the prject cntinues int the secnd year, ACCC will cntinue t ffer expertise, resurces, and guidance t the ACCC membership abut caring fr patients with CML as well as addressing the gaps in knwledge and needs identified during year ne. Page 32

Identifying Exemplary Prgrams The survey results allwed ACCC, in cnsultatin with the advisry bard and the H2R team, t identify cancer prgrams that ffer exemplary services fr managing and treating CML patients. Five were selected, based n survey respnses and gegraphy: Sutter Medical Center, Sacrament, Calif.; Flrida Hspital Waterman Cancer Institute, Tavares, Fla.; Sierra Nevada Memrial Hspital, Cmprehensive Cmmunity Cancer Center, Grass Valley, Calif.; The Nebraska Medical Center, Omaha, Neb.; and Lexingtn Medical Center in West Clumbia, S.C. Their survey respnses suggested effective strategies and innvative tls fr management f patients with CML. In-depth interviews were cnducted with each f these centers, which yielded deeper insights int effective practices. ACCC als invited fur f these cancer prgrams Flrida Hspital Waterman Cancer Institute, Sutter Medical Center, Sierra Nevada Memrial Hspital, Cmprehensive Cmmunity Cancer Center, and The Nebraska Medical Center t becme ACCC Cmmunity Resurce Centers. Detailed interviews with specific cancer centers whse survey respnses suggested patterns f effective strategies and innvative tls fr management f patients with CML prvided greater insights int effective practices. The interviews als yielded specific examples sme f which can be embraced by ther cmmunity cancer centers. Frm these interviews, discussins with the advisry panel and the analysis f the surveys, we identified 13 dmains, r factrs, that may increase the likelihd that a cancer prgram is perfrming at a higher level than ther institutins. The 13 Dmains 1. Accreditatin. Effective prgrams are accredited. Mst respnding cancer prgrams received accreditatin thrugh the American Cllege f Surgens Cmmissin n Cancer r the American Sciety f Clinical Onclgy Quality Onclgy Practice Initiative. 2. Clinical guidelines. Mst cancer prgram nclgists and supprt staff have access t a set f clinical guidelines fr CML (such as thse ffered by the Natinal Cmprehensive Cancer Netwrk). Many effective prgrams incrprate the guidelines int prtcls (in sme cases, int the electrnic health recrd) r have them integrated int quality assurance plicies. 3. Managing drug therapies. Tyrsine kinase inhibitr therapies, r TKIs, have transfrmed the treatment f CML. Effective use f thse therapies includes nt nly clinical diligence in assessing drug side effects and mnitring the prgress f the disease, but als managing the financial issues facing the patient. The drugs are very expensive, and many f the centers surveyed wrk t ensure that uninsured r underinsured patients have access t them. The mre effective prgrams assess drug side effects during visits and make sure patients purchase their drugs and use them apprpriately between visits. Flrida Hspital Waterman Cancer Page 33

Institute prescribes medicine ne mnth at a time t mnitr cmpliance. Nurses discuss medicatin and side effects, prvide extensive educatin in persn and via handuts abut the therapy and side effects, and mnitr lab wrk. If necessary, smene frm Flrida Hspital Waterman Cancer Institute will check n the hme situatin t identify challenges t adherence. At Sutter Medical Center, and at Sierra Nevada s Cmprehensive Cmmunity Cancer Center, patients bring in their medicatins and nurses cunt pills. Nutritin cnsults, timely lab tests and easy access t the physician and scial wrker are three effective ways Sierra Nevada Memrial Hspital, Cmprehensive Cmmunity Cancer Center, helps address side effects; Sutter Medical Center cites educatin, care crdinatin, dietitians, and pharmacy supprt (including access t an infusin center). At The Nebraska Medical Center, the physician r utpatient midlevel can assess a patient same day. Mrever, because the prviders have such fcused areas f expertise (and extensive experience) they knw, fr instance, that a rash may nt be just a rash; it culd be a sign f smething serius. This, f curse, is true f ther cancer prgrams, t; nurses can assess the side-effect symptms and respnd accrdingly. 4. Immediate and lng-term patient mnitring. Effective management includes care mnitring thrugh fllw-up physician visits at apprpriate intervals. In additin t clinical mnitring (physical exam, bld cunts, metablic panel), effective prgrams als include mnitring fr supprt service needs. Clsely fllwing guidelines allws patients t get the ptimal treatment when they need it. At the Nebraska Medical Center, adherence t guidelines allws fr early referral (t trials r transplantatin) f patients nt respnding t therapy. Lng-term mnitring is required since the patient is nt cured by the therapies, but instead is stabilized with an nging need fr the drug therapies t be cntinued and mnitred. 5. Team-based, crdinated care. Many successful prgrams take a team-based apprach, deplying case managers/navigatrs t crdinate care. At Sierra Nevada s Cmprehensive Cmmunity Cancer Center, a relatively small cancer center, everyne is part f the team. Patient familiarity with the staff and staff familiarity with the patient ensure cntinuity f care. Vlunteers are trained t watch fr signs f distress and infrm a staff member. The nutritinist and scial wrker are n site, s the nurse can just walk smene dwn the hall t get the services they need. During chart runds, the entire staff cmes tgether t discuss a patient, cmpare ntes and discuss issues that have arisen. Sierra Nevada als ffers a painmanagement team, including palliative care physician. At The Nebraska Medical Center, each physician is paired with an RN case manager wh crdinates the patient s care. Generally, the team fcuses n a particular type f cancer. Sutter Medical Center has a separate hematlgy/pathlgy tumr bard that includes physicians including a pathlgist pharmacists, and nurses. It als includes supprt staff scial wrker, nutritinist, care crdinatr, financial crdinatr, and smetimes the nutritinist. They wrk tgether t frmulate a best-practice treatment plan. In additin, Sutter has a weekly steering cmmittee meeting t discuss patients, regardless f disease, wh are getting ready fr transplant. Flrida Hspital Waterman Cancer Institute takes a multidisciplinary team apprach t care: Clinical and nn-clinical staff sit in n the cancer cnference, which smetimes includes physicians frm ther practices. The specialists crdinate clsely with the primary care physicians (althugh they dn t generally attend the cancer cnference). Infrmal meetings n patient care keep the entire team apprised. The center has lw turnver nne in the last tw years s patients and staff bnd. As with Sierra Nevada, anther smaller center, patient familiarity helps ensure cntinuity f care. Page 34

6. Supprt services. Mst cancer prgrams prvide access t a brad array f supprt services, including financial supprt, emtinal r mental health supprt, and patient educatin. A key t effective prvisin f supprt services is a staff prfessinal (RN, scial wrker) t help the patient r family navigate amng the needed clinical and supprt services, sme f which may be prvided by external rganizatins. Immediately upn diagnsis, Sutter Medical Center will cnduct a psych-scial assessment and identify any needs, including financial, caregiver and transprtatin cncerns. The scial wrker meets with each patient in persn. It ffers music therapy, art therapy, pet therapy, dance therapy, massage therapy, etc. (These therapists must be certified in their fields and trained by Sutter Medical Center). It als ffers a variety f n-site supprt grups, including ne fr children f cancer patients. Fr inpatients, music therapists g int patient rms and take requests. It has an integrative medicine prgram that includes yga, nutritinal supplements and acupuncture (the latter is ffered ffsite). The Nebraska Medical Center prvides sme supprt services n site and wrks clsely with the Leukemia & Lymphma Sciety fr thers. At Sierra Nevada Memrial Hspital, Cmprehensive Cmmunity Cancer Center, the scial wrker and nutritinist are bth n site and in the same building, s patients can receive the supprt services they need right away. The center uses a distress scale (mdified frm ne prvided by the American Cancer Sciety) t assess a patient s supprt needs. Vlunteers are trained t mnitr fr signs f depressin r distress and reprt them t the staff. It prvides an array f supprt services, including patient navigatin, cllabratin with majr medical centers and free psychlgical and nutritinal supprt. It als ffers 19 supprt grups. Sme f these are disease fcused, but thers, such as thse devted t writing and art, are nt. Flrida Hspital Waterman Cancer Institute als uses the ACS distress scale. The scial wrker s ffice is in the waiting area, and patients are welcme t call r drp in. A mnthly Leukemia & Lymphma Sciety meeting (run by a nurse) is cnducted nsite. Waterman ffers a general cancer supprt grup as well as ne fr lymphma and leukemia. Other supprt services include pet therapy ( puppy day ), twice-weekly high teas (which creates bnding and scializatin in the waiting area), and pastral care. 7. Financial guidance/assistance. Mst centers prvide in-huse financial supprt services. Sutter Medical Center, fr example, helps patients cmplete paperwrk fr disability, Family & Medical Leave Act, schlarships, etc. It cnnects patients with prgrams, such as thse thrugh pharmaceutical cmpanies, transprtatin ptins thrugh the American Cancer Sciety and assistance thrugh the Leukemia & Lymphma Sciety. At Flrida Hspital Waterman Cancer Institute, the scial wrker and financial cunselr have a rbust and ever-grwing list f resurces fr patients wh need assistance. They can be referred t the apprpriate cmmunity agencies and/r t the Leukemia & Lymphma Sciety. The team actively gathers infrmatin n assistance resurces frm natinal meetings, netwrking, pharmaceutical reps and prfessinal rganizatins, such as the Lake Cunty Onclgy Nursing Sciety. 8. Mnitring f prcesses and utcmes. Systematic mnitring f patient utcmes (and patient satisfactin) prvides a gauge f hw well a prgram and its clinical staff are ding. An effective prgram will systematically mnitr perfrmance t target imprvements. Sierra Nevada Memrial Hspital, Cmprehensive Cmmunity Cancer Center, uses a cancer registry t mnitr patient utcmes; it has fllwed each f its cancer patients since 1995. In additin, the weekly tumr bard is rutinely attended by 50 healthcare prfessinals (25 physicians, 25 allied health prfessinals), including the nn-nclgy physician. At The Nebraska Medical Center, the tumr bard (r bne marrw cnference ) is a multidisciplinary cnference that includes the nurse case manager, the scial wrker and ther nn-md team members. Many successful centers als assess patient experience, using the feedback t drive quality imprvement. The Nebraska Medical Center, amng thers, uses Press Ganey t send surveys t Page 35

nclgy patients; the respnses can be brken dwn by diagnses s each prvider team can review its results. Certain metrics can be targeted fr imprvement. One recent target: management f and educatin abut side effects. The Nebraska Medical Center began updating its printed infrmatin, determining the best time t prvide such infrmatin, and crdinating with the case manager. The center nw prvides written infrmatin in a nice packet fr patients t review at their leisure, and the prvider team ffers nging reinfrcement. As a result, the satisfactin scres have imprved. Sutter Medical Center and Flrida Hspital Waterman Cancer Institute als share Press Ganey results with the entire team. At Sutter Medical Center, all managers and directrs review the scres during a weekly meeting, results are published in a weekly internal newsletter. On the inpatient side, each flr psts its results. 9. Meaningful use f health IT. Frm integrating guidelines int the EHR t the use f registries, many successful prgrams use health infrmatin technlgy t imprve prcesses and prcedures. At Sierra Nevada Memrial Hspital, Cmprehensive Cmmunity Cancer Center, the entire prvider team can access the hspital medical recrd system, including supprt staff. Clinicians enter ntes, as d the nutritinist and the scial wrker. All lab and radilgy reprts are available; s are ER visits. The center was able t increase the number f patients wh visited with the nutritinist by flagging the recrds fr the receptinist. The receptinist wuld remind the patients. Nutritin cnsults increased 15 percent (the target) almst immediately. 10. Annual CML training fr staff prfessinals. Annual CML training fr clinical and supprt prfessinals keeps them up-t-date n new therapies and prcesses and up-t-speed n existing nes. Direct patient experience is mre limited fr small-ppulatin cancers, making training an imprtant cmpnent f remaining current. At Sierra Nevada Memrial Hspital, Cmprehensive Cmmunity Cancer Center, sme f the training is handled by physicians: The scial wrker meets with the physician t discuss each CML patient and identify what the specific needs and/r challenges may be. At Flrida Hspital Waterman Cancer Institute, staff can attend LLS prgrams n site. Mst f the nurses als get nging educatin thrugh the Lake Cunty Onclgy Nursing Sciety. 11. Patient educatin. Effective prgrams prvide systematic patient educatin abut CML and abut hw t effectively manage bth the cnditin and ne s life, given the illness. Patient educatin can take many frms, including brchures, grup r individual educatinal sessins, mentring relatinships and supprt grups. At Sutter Medical Center, the physician explains the diagnsis; the RN then cnfirms the patient understands, and addresses the patient s cncerns. The patient receives a bklet available in English and Spanish abut leukemia, and the caregiver receives a similar ne targeted at caregivers. Sierra Nevada Memrial Hspital, Cmprehensive Cmmunity Cancer Center, makes extensive use f the free resurces frm NCI and is wrking n updating its webpage s patients will have a single prtal t access a range f educatinal materials. Specifically mentined as a gd resurce: Jhns Hpkins Medicine: Patients' Guide t Leukemia. Flrida Hspital Waterman Cancer Institute prvides extensive handuts t patients much f it frm ACS r LLS. It has a dedicated library and patients can access infrmatin frm hme thrugh the center s website. 12. Access. Many effective prgrams prvide patient access t services beynd traditinal schedules. Fr instance, The Nebraska Medical Center staffs its infusin center 24/7; it functins as an emergency department fr cancer patients, including thse with CML. Patients wh have issues after hurs can g t the center and be seen by a resident immediately. At several f the centers interviewed, labwrk desn t necessarily need t be scheduled in advance; it is available n site n an as-needed basis. Fr example, at Flrida Hspital Waterman Cancer Institute, if a Page 36

patient is wrried, he r she can cme in and have bld wrk dne. (It s cheaper than having the anxiety fester; that culd lead t a cstly ER visit.) Flrida Waterman desn t have 24-hur access t the clinic, but patients have 24-hur access t a staff member wh can either meet them at the ER r pen the clinic and meet them there. Many patients als have their dctr s persnal cell number. 13. Outreach and early interventin. Sutter Medical Center prides itself n early interventin. It actively markets t area emergency departments and lets them knw that it has an acute leukemia prgram. Sutter is a transplant center, and it prmtes its prgram actively in the cmmunity. As a result, it is able t achieve earlier diagnsis and treatment. Opprtunities fr Educatin and Supprt The surveys, the interviews, and subsequent discussins with Advisry Bard members revealed several deficiencies in these 13 dmains, especially in the use f health infrmatin technlgy and in sme aspects f medicatin management and cmpliance. Effective use f health IT: Even the best practices face challenges here. Often, there are multiple EHR systems fr example, ne fr the hspital, ne fr the private practice, and smetimes a different ne fr the cancer center and ften, there is little interperability. One f the centers surveyed (Flrida Hspital Waterman Cancer Institute) explained that it is wrking tward health IT interperability, but there are challenges. It has three different HIT systems at play: the hspital s EMR system (Cerner); the cancer center s (Alexis Msaic) and Lake Cunty Onclgy s (Onc EMR). The cancer registry is ppulated by the hspital s EHR; the practices data need t be scanned in. Medicatin management/cmpliance. Mst f the cancer prgrams surveyed have prcedures in place t manage side effects, educate patients abut drug therapy, and address many medicatinmanagement issues. But ne exceptin reveals a larger challenge: mnitring cmpliance. Pill cunting is the mst cmmn apprach t mnitring cmpliance; there appears t be a marked lack f tls t determine if a prescriptin was filled and whether a patient is adhering t therapy. That said, amng the cancer prgrams interviewed, the supprt ffered by staff (ranging frm the familiarity with patients t nutritinal cnsults) appears t prmte cmpliance/adherence with regimens. The patient-centered, team-based, supprtive apprach t care appears t create an envirnment in which patients will discuss their side effects r ther issue rather than simply ceasing therapy. Page 37

Prfiles f Five Centers Site 1: Flrida Hspital Waterman Cancer Institute Flrida Hspital Waterman Cancer Institute (FHWCI), Tavares, Fla., has a case lad f 500-799 cancer patients, 25-99 have CML. The prgram takes a cllabrative, multidisciplinary team apprach t care. The hspital is a 204-bed acute care facility. Fr CML patients, the scial wrker handles care crdinatin. Clinical and nn-clinical staff sit in n the cancer cnference, which smetimes include physicians frm ther practices. The specialists crdinate clsely with the primary care physicians, althugh they dn t generally attend the cancer cnference. It s all abut cmmunicatin, says David S. DePrsper, MA, FHWCI s directr. Physicians talk t each ther and t the staff; there are nt many egs in the prgram, he says. In additin t regularly scheduled meetings, physicians and staff have infrmal discussins abut patients clinical, psychlgical, and financial cncerns. Barbara Jean Lane, RN, BSN, MS, OCN, CCRC, CCRP, the clinical research crdinatr, adds that the physicians make detailed ntes abut the care plan fr each patient, which als enhances care crdinatin. The center has lw turnver nne in the last tw years s patients and staff bnd. Such familiarity helps ensure cntinuity f care, Lane says. It als leads t mre crdinated care. Key Cntacts and Stats David S. DePrsper, MA Directr, FHW Cancer Institute 4000 Waterman Way Tavares, Flrida 32778 352-253-3636 David.DePrsper@ahss.rg Barbara Jean Lane, RN, BSN, MS, OCN, CCRC, CCRP Clinical Research Crdinatr Flrida Hspital Waterman Cancer Institute 4000 Waterman Way Tavares, Flrida 32778 352-253-3082 Maen Hussein, MD Lake Cunty Onclgy & Hematlgy Bard Certified: Onclgy, Hematlgy, Internal Medicine 1400 Nrth US Highway 441, Suite 526 Lady Lake, Flrida 32159 352-753-9777 maenh@htmail.cm Accreditatin: American Cllege f Surgens Cmmissin n Cancer (medical center) Medical nclgists 4 Radiatin nclgists 2 Surgical nclgists 1 General surgens 4 Other physician specialties 1 Nurse practitiners 3 ---------- Bard-certified in hematlgy 4 Onclgy-certified RNs 3 Cnnecting Patients t Resurces At FHWCI, the scial wrker and financial cunselr chse frm rbust and ever-grwing in numbers resurces fr patients. They can be referred t the apprpriate cmmunity agencies and/r t The Leukemia & Lymphma Sciety. The scial wrker can als help patients apply fr Medicare r Medicaid and if need be, put them in tuch with the lcal Medicare advcate. The team actively gathers infrmatin n assistance resurces frm natinal meetings, netwrking, pharmaceutical reps, and prfessinal rganizatins, such as the Lake Cunty Onclgy Nursing Sciety. FHWCI s cancer center ffers a range f ther supprt services, and the scial wrker (wh crdinates care fr the CML patients) is always available t chat. Her ffice is in the waiting area; patients are welcme t call r drp in. Patients ften talk t a scial wrker abut cncerns mre readily than they wuld speak with a clinical staff, Lane says. Page 38

The Institute uses the American Cancer Sciety distress scale t assess a patient s supprt needs. A mnthly Leukemia & Lymphma Sciety meeting (run by a nurse) is cnducted nsite. Waterman ffers a general cancer supprt grup as well as ne fr lymphma and leukemia. Supprt grups are f particular help t newly diagnsed patients wh are ging thrugh a tugh time, says Maen Hussein, MD, f Lake Cunty Onclgy & Hematlgy. Other supprt services include pet therapy ( puppy day ), twice-weekly high teas in the waiting area, which creates bnding and scializatin, and pastral care. Because mst supprt services are ffered nsite, care is crdinated and patients dn t have t travel t get what they need. DePrsper adds that the campus itself cntributes t patient well-being. The facility was named ne f the 20 prettiest in the cuntry; patients are reassured by its beauty. FHWCI als ffers free valet parking. Access and Educatin Anther way FHWCI supprts patients is by prviding access. If a patient is wrried abut her white cell cunt, she can cme in and have bld wrk dne. The hspital desn t ffer 24-hur clinic access, but patients have 24-hur access t a staff member wh can meet them either at the ER r the clinic. Many patients als have their dctr s persnal cell number. (One physician, n a missin in Haiti, nnetheless cntinued t speak with his patients by phne.) Lane sees educatin as a way t relieve anxiety. FHWCI prvides extensive handuts t patients much f it frm the American Cancer Sciety r The Leukemia & Lymphma Sciety. It has a dedicated library and patients can access infrmatin frm hme thrugh the Institute s website. Patients may nt read the infrmatin right away, but when they wake at 2 am, anxius abut their CML, they have access t many f the answers they need, either thrugh the Internet r in the handuts, Lane says. It prvides reassurance. Patients als have access t educatin nsite, such as during the mnthly Leukemia & Lymphma Sciety meetings. The staff is very pen t answering questins abut the infrmatin a patient finds, even if it appears questinable. Patients can bring in infrmatin they find nline and, We ll fllw up and give them an answer. It may be hey, but if it is, we ll tell them it s hey. If the infrmatin is imprtant enugh fr them t bring in, it merits a respnse, she says. It may be time-cnsuming t fllw-up, but that srt f attentin pays ff in the lng term. Lane tells a stry frm her days as a hme health nurse; the situatin isn t related t CML, but it captures her apprach t the value f patient-centered care. During ne hme visit, she spent 45 minutes trying t talk t an lder wman. The wman was distracted and wasn t prviding the infrmatin Lane needed. Finally, I asked, what d yu need me t d? The wman was wrried her dgs hadn t had been taken utside r fed. It tk 10 minutes t take care f them. In 10 mre minutes, Lane had all the infrmatin she needed. S smetimes, it may seem like it takes yu a lt f time, but really, it can cut dwn a lt f time. Translating the anecdte t CML is easy, she says. If, n a Friday mrning, a CML patient is anxius, wrried whether her white cunt is up, Wuldn t it be easier t cme in, have a CBC dne and find ut? Nt ding s may mean the patient presents at the ER n Saturday. Ding the lab wrk saves time and mney in the lng run and reassures the patient, Lane explains. Page 39

Educatin and Training Staff can attend the Leukemia & Lymphma Sciety prgrams nsite. Mst nurses als get nging educatin thrugh the Lake Cunty Onclgy Nursing Sciety. The nutritinist specializes in nclgy and has attended several CML educatin prgrams. She wrks with patients t identify their needs. Clinicians attend meetings and invited speakers have cme t speak n CML advances. Medicatin Management Flrida Hspital Waterman Cancer Institute prescribes medicine ne mnth at a time t mnitr cmpliance. When they dn t request a refill, we knw there s smething wrng, says Lane. Nurses discuss medicatin and side effects, prvide extensive educatin in persn and via handuts abut the therapy and side effects, and mnitr labwrk. If necessary, smene frm FHWCI will check n the hme situatin t identify challenges t adherence. There s n generic apprach; it depends n the care plan fr each patient. A 30-year ld may frget t take his pills. A 90-year ld may be playing checkers with them, says Lane. Nurses are trained t deal with treatment side effects and understand the side-effect prfile f each drug. They get first call; if they can t manage the prblem they have the patient cme in t be evaluated. Only nurses r physicians deal with side-effect issues, because it s a medical issue, Hussein explains. Pharmaceutical cmpanies prvide abundant resurces, including printed material and in-service presentatins, t help clinicians manage side effects, Adherence One f the things FHWCI indicates that it des exceptinally well is prmte adherence t treatment and appintments. Part f that is attributable t educatin and cmmunicatin, Hussein says: explaining t patients the imprtance f clse fllw-up t avid delaying the discvery f resistance r prgressin. Adherence als invlves fllw-up. Patients are called the day befre their appintment, they are called immediately when they miss an appintment and, if there s n answer, they get anther call the fllwing day. If that s unsuccessful, the staff sends ut a letter. In additin, clinical and supprt prfessinals are autmatically ntified f missed appintments. Althugh there is a prtcl in place, nncmpliance isn t a prblem, says Lane. She attributes that largely t the sense f cmmunity. DePrsper says it relates t their verarching philsphy a patient-centered apprach t care. Guidelines, Prtcls, and Surveys Clinicians fllw ASCO and NCCN guidelines in general but tailr therapy t each patient s needs. Guidelines are t guide us, nt t dictate t us, Hussein said, adding FHWCI is in the prcess f incrprating guidelines int its prtcls and EMR, but nne f them are specific t CML. (Guidelines n addressing side effects f CML therapy are incrprated int the wrkflws.) The rganizatin is wrking tward health IT interperability, but there are challenges. One f them is that there are three different HIT systems at play: the hspital s EMR system (Cerner); the cancer center s (Alexis Msaic) and Lake Cunty Onclgy s (Onc EMR). The registry is ppulated by the hspital s EHR; the practices data need t be scanned in. Page 40

FHWCI uses Press Ganey t assess patient satisfactin, but the results are nt brken dwn by type f cancer. Unlimited by Size If Lane has a message fr ther smaller centers, it s this: Smaller centers such as FHWCI may nt have the resurces, but we knw where t find the resurces. That may mean Internet research r a call t a larger center, wherever we need t find the answer, she says. FHWCI will als refer t larger centers, if it s necessary. But patients appreciate the envirnment, say Hussein, Lane, and DePrsper. The advantage f its size is that it s very persnal; it s like a family, Lane says. The center is grwing, but it strives t keep that sense f cmmunity. All f us live and wrk here in the area. These peple are ur friends and neighbrs, Lane says. I hear frm patients wh have gne t larger centers that they feel like a number. Here, they dn t, says Hussein. Page 41

Site 2: The Nebraska Medical Center Cancer Center What sets the Cancer Center at The Nebraska Medical Center apart, says Ann Yager, cancer center directr, is access and the expertise it ffers as a majr academic cancer prgram. Nebraska Medical Center, the teaching hspital fr the University f Nebraska Medical Center, is a 624-bed acute-care bed facility. The cancer center has a case lad f mre than 1,000 cancer patients; hwever, it has fewer than five active CML cases. It generally sees five t nine new cases a year. The Nebraska Medical Center Cancer Center ffers same-day access even after hurs. It staffs its infusin center 24/7; it functins as an emergency department fr cancer patients, including thse with CML. Patients can g t the center any time and be seen by a resident, NP r PA smene wh can handle their issues immediately. If a patient s cnditin changes, the staff respnd very quickly which, Yager explains, is essential t CML. Lab wrk is als dne nsite. Teamwrk and Crdinatin At The Nebraska Medical Center Cancer Center each physician is paired with an RN case manager wh crdinates the patient s care. The team als includes NPs and PAs. Generally, the team fcuses n a particular type f cancer. As an added advantage t patient and prvider, the apprach allws each nurse case manager t develp a real specializatin in a type f cancer. The case manager and the physician are the primary crdinatrs f care. The Nebraska Medical Center Cancer Center has inpatient and utpatient case managers that cmmunicate patient status and needs. A CML flw sheet helps case managers keep track f the patients labs and treatment plan. The nurse case manager wrks clsely with the patient, family and prviders, making sure the patient gets t appintments and is getting prescriptins filled. The tumr bard (r bne marrw cnference ) is a multidisciplinary cnference that includes the nurse case manager, the scial wrker, and ther nn-md team members. Guidelines and Prtcls The Nebraska Medical Center Cancer Center uses NCCN guidelines. They are very straightfrward, says Yager. The clinicians understand and fllw them, althugh at present, they are nt specifically written int any cncrete pathways. Nt nly is The Nebraska Medical Center Cancer Center a member f NCCN, but ne f its physician experts is the NCCN CML panel rep. Being part f develping the guidelines means utilizatin f thse guidelines is a pretty natural transitin. Page 42 Key Cntacts and Stats Ann Yager The Nebraska Medical Center Directr, Cancer Center 402-596-3110 AYager@nebraskamed.cm In cnsultatin with Edward Faber, DO University f Nebraska Medical Center Assciate Prfessr, Internal Medicine, Onclgy/Hematlgy Caralee Detwiler, RN, BSN (case management) 402-559-6465 CDetwiler@nebraskamed.cm Accreditatin American Cllege f Surgens Cmmissin n Cancer (medical center); American Sciety f Clinical Onclgy; Quality Onclgy Practice Initiative (QOPI) (nclgy grup); FACT; NCI; Funding member f NCCN Medical nclgists 26 Radiatin nclgists 5 Surgical nclgists 17 Nurse practitiners 3 Physician assistants 10 Bard certified in hematlgy 5 Bard-certified in hspice and palliative medicine 1 Onclgy-certified RNs 29

At The Nebraska Medical Center Cancer Center, adherence t guidelines allws fr early referral (t trials r transplantatin) f patients nt respnding t therapy. Health Infrmatin Technlgy The Nebraska Medical Center Cancer Center has a largely paper-based recrds system, which is underging verhaul. We are in the prcess f replacing ur verall electrnic health recrd acrss the rganizatin, says Yager. It s mving frm GE Centricity t EPIC. (The EPIC nclgy mdule is called Beacn.) The registries are separate frm the EHR. They have tw: The hspital-based tumr registry abstracts cases that are diagnsed r have first line f therapy at Nebraska. It lets them lk at survival rates, etc. The Nebraska Medical Center Cancer Center als has a CML transplant registry. The tw are nt cnnected. The website is als a wrk in prgress, Yager says. Once the new system is in place, she hpes t have a prtal that allws patients t nt nly access educatinal infrmatin, but als their persnal health recrds. Assessing Satisfactin The Nebraska Medical Center Cancer Center uses Press Ganey t send surveys t nclgy patients; the respnses can be brken dwn by diagnsis s each prvider team can review its results. The results as well as the cmments are reviewed by everyne invlved. We use thse results t chse things t wrk n, she explains. The center uses a balanced screcard apprach that requires each area t chse specific metrics t track and then develp apprpriate perfrmance imprvement activities, she says. Medicatin Management One recent target fr imprvement: management f and patient educatin abut side effects. The Nebraska Medical Center Cancer Center began updating its printed infrmatin, determining the best time t prvide such infrmatin, and crdinating with the case manager. The center nw prvides written infrmatin in a nice packet fr patients t review at their leisure, and the prvider team ffers nging reinfrcement. The packet includes educatinal sheets the center has develped, as well as cntact numbers fr the staff. As a result, the satisfactin scres have imprved. Same-day access als helps enhance medicatin management. Mrever, because the prviders have such fcused areas f expertise they knw, fr instance, that a rash may nt be just a rash it culd signal smething serius, Yager says. Frequent evaluatin f patients, especially at initiatin f a drug, helps increase adherence and decrease the incidence f side effects. When patients are first started n a therapy, the case manager will call the patient t verify they were able t pick up the medicatin. At each dctr s visit the case manager fllws up with the patient t see if they need any refills r are having any difficulties taking their medicatin. Mrever, many f the specialty pharmacies make fllw up calls with the patients and relay any variances t the case manager. Lng-term mnitring is required since the patient is nt cured by the therapies, but instead is stabilized with an nging need fr mnitred drug therapies. Page 43

Ultimately, gd medicatin management means sticking t guidelines fr milestnes (e.g., genetic testing). Yager says the philsphy is this: Stick t the guidelines--dn t jump t the latest and the greatest, because that limits ptins later n. Dn t change medicatins t sn. Supprt grups als help a patient deal with side effects. Sme f thse are nsite; sme are in the cmmunity. Unlike intravenus medicatins, the staff cannt dcument that the patient is actually taking the medicatin. We can nly trust their verbal affirmatin when we ask them. Having a single nurse case manager t cmmunicate the patients needs and difficulties helps keep that pen cmmunicatin with the dctr, explains Caralee Detwiler, RN, BSN, a case manager in the prgram. The patients seem t trust the case manager since they knw them by name and see them n a regular basis with the dctr. Therefre, the patients are mre apt t disclse prblems and/r difficulties that they experience with the medicatin that wuld prevent them frm taking it cnsistently. Patient Supprt Services The Nebraska Medical Center Cancer Center ffers an array f standard supprt services, and it wrks clsely with The Leukemia & Lymphma Sciety. The Leukemia & Lymphma Sciety als prvides patient-educatin resurces. The center als ffers an innvative in-patient ptin mstly fr transplant patients called cperative care. Mst f the care is prvided by a care partner (a family member r friend) wh stays with the patient. It s a mix between a htel rm and a hspital rm, says Yager. Educatin and Training Many supprt staff receive nging educatin arund leukemia/lymphmas. In additin, there is cnstant dialgue amng members f care teams. Finally, many f the residents and fellws wh trained at Nebraska end up wrking there. Page 44

Site 3: Sierra Nevada Cmprehensive Cmmunity Cancer Center Sierra Nevada Memrial Hspital is a 121-bed acute hspital. Sierra Nevada Cmprehensive Cmmunity Cancer Center (SNCCCC) serves a small rural area in nrthern Califrnia. The nearest majr cancer centers, UC Davis and Stanfrd, are abut tw and fur hurs away, respectively. SNCCCC has a caselad f 300-499 cancer patients, f which 10-24 are CML patients. The center s cancer registry fllws 2,000 patients. It received American Cllege f Surgens Cmmissin n Cancer apprval as a cmmunity hspital cmprehensive cancer prgram in 1998. Persnal Attentin Asked what ne thing sets Sierra Nevada Cmprehensive Cmmunity Cancer Center apart, Ayse Turkseven, MA, CTR, SNCCCC s directr, didn t hesitate: I think it's the attentin the persn gets. Patient familiarity with the staff and staff familiarity with the patient ensure cntinuity f care, she says. Yu can see if smene is pale, sweating, nt walking well." In a larger rganizatin, the physician r staff may nt ntice changes, she says. In fact, in ther, larger centers, the patient may see a prvider wh is a virtual stranger. Nt s at Sierra Nevada. Key Cntacts and Stats Ayse Turkseven, MA, CTR Directr, Sierra Nevada Cmprehensive Cmmunity Cancer Center Ayse.Turkseven@snmh.chw.edu 155 Glassn Way Grass Valley, CA 95945-1029 530-274-6644 Accreditatin: American Cllege f Surgens Cmmissin n Cancer (medical center) Medical nclgists 2 Radiatin nclgists 2 Surgical nclgists 0 General surgens 3 Other physician specialties 5 Nurse practitiners 0 Physician assistants 0 Bard certified in hematlgy 2 Bard certified in hspice and palliative medicine 1 Onclgy-certified RNs 2 Even the vlunteers wh cme in t play music fr patients are trained t watch fr signs f distress and depressin and t let a staff member knw. It's very much like a family, Turkseven says. Patients visit her in her ffice; she als runs int them at parties and while she s shpping. There s a supprt system fr patients. If smething s ging wrng, they aren t just sitting in waiting rm. They knw the nurses, dctrs, and supprt staff including the nutritinist and scial wrker, wh are hused n site. It s a gd safety net fr ur patients. Supprt and Educatin The center ffers an array f supprt services; this fits int its apprach t care. The disease is just ne part f the whle persn, and Sierra Nevada Cmprehensive Cmmunity Cancer Center treats the whle persn, says Turkseven. Free psychlgical and nutritinal supprt are available nsite fr all patients. The center has develped a distress scale questinnaire t assess the patient s need fr supprt. (Staff fllw up with thse wh dn t cmplete it.) It als ffers sme 19 supprt grups; sme are disease fcused, but thers are centered n activities such as writing and art. (She pints ut that sme patients want t take their minds ff their cnditin.) Sierra Nevada Cmprehensive Cmmunity Cancer Center spnsrs newsletters, picnics, pen-mike sessins, and similar activities. It s very much a family envirnment, Turkseven says. Page 45

I ve had dzens and dzens f patients tell me they are sad t leave ur center. They are glad t be cured r at least able t stp treatment but they miss care they gt. She tells f a patient s widw wh started a fd prgram fr cancer patients and families: It prvides cmfrt fd that s prepared in a cmmercial kitchen. Sierra Nevada Cmprehensive Cmmunity Cancer Center makes extensive use f the free resurces (handuts, bklets, etc.) frm several surces, including NCI, the NIH and the American Cancer Sciety. (Specifically mentined as a gd resurce: Jhns Hpkins Medicine: Patients' Guide t Leukemia.) It is wrking n updating its website s patients will have a single prtal t access a range f educatinal materials. Access t the Lab If the patient cmes in lking pale r if smething just desn t seem right, he r she can have lab wrk dne right away and get immediate results. It culd be a lifesaving interventin. At Sierra Nevada Cmprehensive Cmmunity Cancer Center, all the patient has t d is walk dwn the hall t the lab. This is by design, she explains: It arse ut f cancer cmmittee discussins. The lab directr cmmitted t ding whatever needed t be dne t get the lab wrk cmpleted quickly. Cllabrative, Crdinated Team-based Care It s a cllabrative, team-based, patient-centered apprach that cntributes t cntinuity f care. The scial wrker serves as a patient navigatr, keeping track f when patient are cming in, helping them crdinate financial issues, answering questins, and meeting with them as many times as necessary. The patient knws the entire team, s care is crdinated. And because Sierra Nevada Cmprehensive Cmmunity Cancer Center is relatively small, everyne is part f that team. It even includes a painmanagement team, including a palliative care physician. There is excellent cmmunicatin amng departments, says Turkseven. One way the center fsters that cmmunicatin and cntinuity is thrugh chart runds. The entire staff cmes tgether t discuss a patient, cmpare ntes, and lk at issues that have arisen, clinical r therwise. Fr instance, a patient cming in alne withut a friend r family member culd be a sign that he r she lacks an adequate supprt system. These meetings are in additin t the weekly tumr bard, which is rutinely attended by 50 healthcare prfessinals (25 physicians, 25 allied health prfessinals). SNCCCC als cultivates cllabratin with majr cancer centers, especially Stanfrd and UC Davis. The Rle f Health IT Health IT helps prmte care crdinatin: The entire team, including supprt staff, can access the hspital medical recrd system. Clinicians enter ntes, as d the nutritinist and the scial wrker. All lab and radilgy reprts are available. S are ER visits. The center was able t increase the number f patients wh visited with the nutritinist by flagging the recrds fr the receptinist, wh reminded the patients. Nutritin cnsults increased 15 percent (the target) almst immediately. Nevertheless, there are challenges, including different systems in different areas. The registry, CNExT, desn t wrk with Sierra Nevada s EHR, but it has allwed the center t fllw every patient since 1995. Page 46

Guidelines Sierra Nevada Cmprehensive Cmmunity Cancer Center uses NCCN and ASCO guidelines, which are incrprated int wrkflws. With a small staff and lw turnver and a small patient ppulatin there haven t been any challenges t fllwing the guidelines. Dctrs are very well aware f what wrks, and they ve had the same staff in sme cases fr decades. Guidelines are discussed at the tumr bard. Our team is very experienced s it s secnd nature. Staff Educatin and Training Sme f the staff training ccurs in-huse. Fr instance, fr each CML patient, the scial wrker meets with the MD t discuss the patient and what their needs r challenges may be. Physicians read cnstantly and attend ASCO meetings. There s als a lt f infrmatin sharing inhuse. They may be in a remte lcatin, she says, but we are cnstantly teaching urselves and learning frm clleagues. The ACCC discussin bard prvides an educatinal resurce, t. Turkseven frwards it t clleagues. I lve that thing, she says. A recent pst dealt with what clrs are sthing fr cancer patients. (It was particularly helpful when smene in the C-suite wanted t decrate the hspital bright range and green.) Medicatin Management and Cmpliance Patients bring in their medicatins and nurses cunt pills. Nutritin cnsults, timely lab tests, and easy access t the physician and scial wrker help the center address side effects and keep the patient adherent. Medicine can be prvided by physicians themselves, lcal pharmacies, r an nsite pharmacy. (A cmpunding pharmacy half a blck away wrks with dctrs.) The hspital pharmacist is a member f the cancer cmmittee. Nursing staff makes fllw-up phne calls and fllws up n cancelled appintments. The staff desn t have t dig deeply t find ut if a patient isn t adhering t therapy: Patients ften acknwledge they aren t taking their medicatin, says Turkseven. It s an ld fashined, intimate envirnment, she says. And that s intentinal. The center wrks t create an pen, safe envirnment where patients feel cmfrtable speaking up if they want t stp taking their medicatin. The physician and staff understand that keeping the dialgue ging keeping the patient engaged makes it easy fr him r her t return t therapy. Staffing Matters Having the right staff has been crucial t Sierra Nevada s success. Team members are carefully selected fr their patient-fcused rientatin, Turkseven says. Yu can d all the behaviral interviewing yu want, but seeing peple in the trenches is the best way t assess staff. She has n qualms abut letting g f peple wh are nt well suited t Sierra Nevada s culture. But, she adds, mst f the staff has been n bard fr years. Turkseven has wrked in varius facilities but never befre has she experienced the same level f teamwrk. I ve never seen quite as chesive a grup as we have here. Page 47

Site 4: Sutter Medical Center, Sacrament, Califrnia Sutter Medical Center includes 29 acute care hspitals. The cancer center has an active caselad f mre than 1,000 patients, f which five t nine are CML patients. The dwntwn Sacrament medical center is made up f several facilities including Sutter General Hspital, a 306-bed specialty medical center and Sutter Memrial Hspital, a 46-bed specialty medical center. Early interventin and a whle-persn rientatin characterize Sacrament s Sutter Medical Center s apprach t CML management. It s imperative t get patients int the system as quickly as pssible, says Mary Swimley, cancer center services develpment manager at Sutter. That means educating referring dctrs. What we d best is early interventin, says Linda Lambert, RN, Sutter s prgram manager, bld and marrw transplant. She and her team accmplish this by raising awareness abut Sutter s acute leukemia prgram, bth in the cmmunity and amng ther prviders in particular, emergency department physicians and referring nclgists. Quite a few cme t the center via referrals frm the ER, she says. As a transplant center, Sutter has a high prfile in the cmmunity at large, which helps increase awareness and drive early referrals. Key Cntacts and Stats Linda Lambert, RN Prgram Manager Bld and Marrw Transplant Sutter Medical Center, Sacrament 916-606-9291 LamberML@sutterhealth.rg Mary Swimley Cancer Center Services Develpment Manager Sutter Medical Center, Sacrament 916-453-5916 swimlem@sutterhealth.rg Accreditatin: American Cllege f Surgens (ACS) Cmmissin n Cancer FACT accredited fr Autlgus and Allgeneic Transplant Accreditatin Medical nclgists 9 Radiatin nclgists 15 Surgical nclgists 3 General surgens 3 Other physician specialties 9 Nurse practitiners 2 Physician assistants 0 Bard-certified in hematlgy 4 Onclgy-certified RNs 11 Once the patient cmes t the center, the team fcuses n making sure he r she has the resurces t begin and successfully cntinue therapy. Lessening the Burden f Wrry Educatinal, financial, and scial services are integrated int the care plan fr Sutter patients. At diagnsis, the patient is prbably wrrying abut hw t affrd treatment, says Lambert. The staff wants t put the patient at ease as early as pssible. Psychscial needs are addressed immediately upn diagnsis. Bth Swimley and Lambert emphasize: The supprt cannt be divrced frm the clinical. Many times, the reasn these patients dn t survive is because they lack access t knwledge, infrmatin, and resurces. Financial, psychlgical, and scial issues must be managed alng with their disease, Lambert says. Treat the whle persn, nt the disease. Financial crdinatin is an integral part f the intake prcess; addressing financial cncerns is essential t ensuring lng-term survivrship. Sutter Medical Center has a dedicated financial crdinatr as well as an nclgy scial wrker in its clinic. When a patient receives a diagnsis, the scial wrker immediately cnducts a psychscial Page 48

assessment and identifies his r her needs and cncerns financial, caregiver, transprtatin. Sn althugh nt necessarily that day, since the patient is already verwhelmed the financial crdinatr helps the patient cmplete paperwrk fr disability, Family & Medical Leave Act, schlarships, etc. Sutter cnnects patients with prgrams such as thse ffered thrugh pharmaceutical cmpanies, transprtatin ptins thrugh the American Cancer Sciety, and assistance thrugh the Leukemia and Lymphma Sciety. We truly d prvide a well-runded apprach t care fr the patient s psychscial needs, she says. Educatin, t, begins early. When the physician finishes talking t the patient and explaining the diagnsis ( and ur physician wh treats CML is a master educatr ), the nurse talks t the patient, reviews what the physician has said and tries t address questins. She als prvides bklets n AML/CML/MM frm The Leukemia &Lymphma Sciety ne fr patients, ne fr caregivers. (Bth are available in Spanish and English.) Patients have access t a library and the Sutter system has a patient prtal s the patient can access its site frm hme. Patient-Supprt Services If yu are ging t have a CML prgram, it is imperative t have the supprt staff t care fr that patient ppulatin, Lambert says. Sutter Medical Center ffers a brad array f nging supprt services fr all its cancer patients: music therapy, art therapy, pet therapy, dance therapy, massage therapy. These therapists must be certified in their field and trained by Sutter. It als ffers varius supprt grups, including ne fr children f patients with cancer. The apprach is practive. We dn t wait fr patients t schedule supprt services, Lambert explains. Fr instance, musicians g int the hspital rms, play and take requests. Sutter als ffers an integrative medicine prgram that includes yga, nutritinal supplements, and acupuncture. Acupuncture is ff site. Care Crdinatin With such tight integratin f supprt clinical services, care is crdinated. (Hwever, the nly written care crdinatin prgram applies t transplant patients.) All patients are assigned crdinatrs as they cme int the prgram, and a given crdinatr fllws each patient. There s als an inpatient care crdinatr wh makes daily visits t patients wh are nsite, be they in the hspital r the infusin center. That crdinatr sees 8 t 28 patients a day. Transplant patients are als fllwed by the bne marrw transplant patient crdinatr. The utpatient crdinatr has a lad f up t 60 patients; if the lad exceeds 60, Sutter will hire anther crdinatr. Sutter Medical Center has a separate hem/path tumr bard that includes physicians (including a pathlgist), pharmacists and nurses. It als includes supprt staff--scial wrker, care crdinatr, financial crdinatr, and smetimes the nutritinist. This apprach prmtes care crdinatin, Swimley says. All the different treatment mdalities are at the table and wrk tgether t frmulate a best-practice treatment plan. In additin, Sutter has a weekly steering cmmittee meeting t discuss patients, regardless f disease, wh are getting ready fr transplant; that cmmittee includes, amng thers, physicians, the scial wrker, nutritinist, financial crdinatr and nursing staff. Page 49

Technlgy EHRs are supprted nly in the utpatient setting; the individual practices use the same system and are able t cmmunicate with each ther. The registry has access t infrmatin it needs thrugh Sutter s EHR. In the inpatient setting, the nly autmated system is what Lambert and Swimley call an antiquated, but rbust patient database. Charts and prgress ntes are still n paper. Access Sutter Medical Center maintains an n-call persn wh can cunsel and advise patients 24/7 and if need be, direct them t the ER. Lab draws can be dne nsite as needed. Tracking Patient Satisfactin Sutter Medical Center uses Press Ganey t assess patient satisfactin. Everyne n the team reviews the surveys and reprts n hw t address changes, Swimley says. All managers and directrs review the scres during a weekly meeting; results are published in a weekly internal newsletter and, n the inpatient side, each flr psts its results, prmting ttal transparency. Understanding patient cncerns can drive quality imprvement. Fr example, knwing that call-light issues are a cmmn challenge, Sutter address that during the hurly runds by asking, Is there anything yu might need befre I cme back the next hur? If yu let them knw when yu are ging t return, they are less inclined t use the call buttn in the interim. Medicatin Management Sutter Medical Center refers patients t nearby specialty pharmacies fr medicatin. The chice is up t the patient. The pharmacists have access t schlarships, grants, and ther prgrams. Wherever they pick them up, patients are tld t bring their medicatins with them n their visits. Nurses review the meds with patients t make sure they knw hw t take them and why they are taking each. The nurse als reviews adherence thrugh pill cunting; if the patient brings a full bttle and they shuld nly have 15 pills left, the nurse will address the reasns fr nt taking the medicatin, Lambert explains. We have a very rbust effrt arund medicatin cmpliance. Finances can be an issue, but the financial cunselr and the scial wrker help find financial resurces t prmte adherence t therapy. Because side effects are such a significant issue with CML medicatin, Sutter Medical Center has resurces in place t help patients deal with them. Nt nly des it ffer educatin and meetings with the nutritinist, but nsite access t the infusin center is available if a patient is dehydrated. Survivrship: An Increasingly Imprtant Issue Mre peple are being identified with CML and require treatment. If dne successfully, we can have a larger grup f peple wh will becme survivrs than we have seen in years past, Lambert says. That creates different challenges, she says. Supprt and medicatin management becme increasingly imprtant and require centers t fcus n quality-f-life issues. If we can help them have a better quality f life then, in my pinin, we have a successful prgram. It s nt the number f peple wh live t be 90; it s the number wh have a better quality f life until the age f 90. Page 50

Site 5: Lexingtn Medical Center Lexingtn Medical Center is a 414-bed medical cmplex in West Clumbia, Suth Carlina, that anchrs a cmprehensive netwrk f 600-plus affiliated physicians. The center sees abut 10-20 CML patients. It has an active cancer caselad f mre than 1,000 patients. Diagnstically, we have a gd prgram fr CML, says Steven Madden, MD, f Lexingtn Onclgy Assciates. The center als ffers strng bld bank supprt, he says; it has tw, sn t be three, hemapathlgists and is develping a flw cytmetry service. Cllabratin Cases are presented at a multidisciplinary treatment cnference, but management is generally limited t the physician and the NP r the PA. There are tw nurse navigatrs at the cancer center; ne is devted t breast cancer, the ther handles everyne else. Lexingtn hpes t add anther navigatr sn. In the interim, CML patients may nt see a nurse navigatr. Althugh Lexingtn has n active trials, the center is explring an affiliatin with Duke University. That affiliatin wuld nt be CML-specific, Madden ntes. Key Cntacts and Stats Stacey W. Bannister Directr, Physician Netwrk Lexingtn Medical Center 103 West Hspital Drive West Clumbia, SC 29169 803-936-8098 swbannister@lexhealth.rg Steven Madden, MD 728 Sunset Bulevard, Suite 402 West Clumbia, SC 29169 803-794-7511 Lexingtn Onclgy Assciates Accreditatins: American Cllege f Surgens Cmmissin n Cancer (medical center) Medical nclgists 7 Radiatin nclgists 1 Surgical nclgists 0 General surgens 12 Other physician specialties 15 Nurse practitiners 4 Physician assistants 4 Guidelines and Prtcls The center uses NCCN guidelines; patients get a cpy f them. The center identified the use f/cmpliance with natinal treatment guidelines as ne f the things it des best. The guidelines are nt a cre part f the EMR yet, but that may happen dwn the rad. Stacey W. Bannister, directr f the center s physician netwrk, says the center will sn be launching Varian's ARIA EHR system. Lexingtn Medical Center als has a basic tumr registry that can glean frm the EHR. Madden identified n significant barriers t incrprating guidelines int the wrkflw. Bard certified in hematlgy 7 Bard-certified in hspice and palliative medicine 1 Onclgy-certified RNs 16 Medicatin Management Clinicians cunt pills t make sure patients are adhering t therapy, and mnitr lab studies t ascertain respnse t therapy. The center fllws standard guidelines fr mlecular studies. In additin, sme f the area specialty pharmacies ffer assistance in mnitring patient cmpliance. Medicatin adherence is an area that needs imprvement, Madden acknwledges. We dn t have a gd mechanism in place t ensure medicatin cmpliance. he says. Sn, hwever, the center will be hiring several new RNs, which will help with thse issues. The ideal situatin, he says, is t dedicate an FTE t that functin. Frequent appintments and educatin als help address side effects and the attendant cmpliance issues. Lab wrk desn t have t be scheduled; it can be dne nsite immediately. Page 51

Patient Experience/Satisfactin The hspital uses Press Ganey. The physician grup t which Lexingtn Onclgy Assciates belngs mails surveys; the results are shared and can be used fr quality imprvement. Hwever, the hspital plicy is nt t send ut surveys n newly acquired practices, s nne has been send ut n Lexingtn Onclgy Assciates, which was acquired last year. Patient-Supprt Services Amng Lexingtn s strngest supprt services is financial cunseling. The scial wrker helps identify surces f funding fr patients wh cannt affrd medicatin. There s als a strng cmmunity utreach fcus. The center ffers a library fr patients where there is free material frm the American Cancer Sciety, amng ther surces. It prvides handuts and directs patients t apprpriate websites. Educatin and Training Clinician educatin cmes thrugh CME, self-educatin, and pharmaceutical reps. There is n direct CML educatin fr supprt staff. Page 52

Appendix I: Pretest Treating Small-Ppulatin Cancers in the Cmmunity Setting Thank yu fr taking the chrnic myelid leukemia (CML) self-test. Here are the answers. Hw Much D Yu Knw Abut CML in General? 1. CML is a likely example f a small-ppulatin cancer because it best represents the challenges faced with all small-ppulatin cancers. These include (select all that apply): a. It is seen mainly in rural cmmunities. b. Patient prgnsis has nt substantially imprved with advent f tyrsine kinase inhibitrs (TKIs). c. It falls utside the categry f mre prevalent cancers, such as lung, breast, r prstate cancers, but is still seen with mderate frequency by cancer care prviders. d. Current quality f CML patient care depends n the number f nclgists in a practice. The crrect answer is c. Fr mre infrmatin, see accc-cancer.rg/educatin/educatin-cml.asp. 2. Small-ppulatin cancers present different challenges fr cmmunity-based cancer care prviders fr several reasns. These challenges include (select all that apply): a. Limited physician and cancer team knwledge f emerging clinical data b. Difficulties in incrprating new clinical infrmatin int practice c. Cmplex managerial and administrative prcesses Page 53