Distress is an unpleasant experience of an emotional,

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1 Featue Aticle Distess Assessment: Pactice Change Though Guideline Implementation Cayl D. Fulche, MSN, APRN, BC, and Tacy K. Gosselin-Acomb, RN, MSN, AOCN Most nuses agee that incopoating evidence into pactice is necessay to povide quality cae, but baies such as time, esouces, and knowledge often intefee with the actual implementation of pactice change. Published pactice guidelines ae one souce to diect pactice; this aticle focuses on the use of the National Compehensive Cance Netwok s Clinical Pactice Guidelines fo Oncology: Distess Management, which aticulate standads and demonstate assessment fo psychosocial distess. Planning fo the implementation of the guidelines in a feasibility pilot in a busy adiation oncology clinic is descibed. Results indicate that adding a distess assessment using the distess themomete and poblem checklist did not pesent substantial buden to nuses in the clinic o ovewhelm the mental health, pastoal cae, o oncology social wok efeal souces with moe patients. Undestanding distess scoes and poblems identified by patients helped the nuses diect education inteventions and efeals appopiately; impoved patient satisfaction scoes eflected this. Distess is an unpleasant expeience of an emotional, psychological, social, o spiitual natue that intefees with people s ability to cope (National Compehensive Cance Netwok [NCCN], 2007, p. DIS-2). Oncology nuses ae not supised that distess is a phenomenon common to patients with cance (Madden, 2006). An estimated 29.6% 43.4% of patients with cance expeience distess (Zaboa, Bintzenhofeszoc, Cubow, Hooke, & Piantadosi, 2001). As cance sevices move to a pedominately ambulatoy envionment, the need fo bette psychological assessment is citical, yet less than 5% of distessed patients in the ambulatoy setting eceive psychosocial teatment (Bultz & Holland, 2006). Sceening fo distess often may be ovelooked because healthcae pofessionals focus on physical symptoms; howeve, distess can impact the symptom expeience and compliance with pescibed teatment (Clak, 2001). Fo that eason, NCCN included a standad that [a]ll patients should be sceened fo distess at thei initial visit, at appopiate intevals, and as clinically indicated, especially with changes in disease status (p. DIS-3). This aticle will descibe the pocess used by one institution to implement NCCN s Clinical Pactice Guidelines fo Oncology: Distess Management in a clinic setting. Planning fo Implementation Nuses have joined othe pofessionals in the challenge to delive evidence-based pactice; one way to accomplish this is by using clinical pactice guidelines. Guidelines follow a eview of the evidence, ae ceated by expets, and seve to diect pactice. Howeve, even when guidelines have been widely publicized, they often ae not fully implemented in the clinical setting because existing baies impede the pocess. At a Glance Oncology nuses do not consistently use a standad when assessing fo psychosocial issues in patients with cance. The distess themomete and poblem checklist ae efficient assessment tools that can be incopoated into nomal pactice. Nuses in a busy oncology adiation clinic wee able to assess distess, povide educational and efeal esouces, and incease patient satisfaction though planned implementation of an assessment and intevention pocess. Key baies identified by nuses include the peception that nuses have insufficient authoity to instigate change in the pactice setting (Glacken & Chaney, 2004) and insufficient time to implement and ead eseach (Funk, Tonquist, & Champagne, 1995; Glacken & Chaney). Othe baies include a lack of esouces and awaeness. Afte deciding that the Clinical Pactice Guidelines in Oncology: Distess Management (NCCN, 2007) epesented a value consistent with the cente s mission, a multidisciplinay task foce set out to compae existing psychosocial sevices with those ecommended in the standads. Consistent Cayl D. Fulche, MSN, APRN, BC, is a clinical nuse specialist and Tacy K. Gosselin-Acomb, RN, MSN, AOCN, is the diecto of oncology sevices, both at Duke Univesity Hospital in Duham, NC. No financial elationships to disclose. (Submitted May Accepted fo publication July 14, 2007.) Digital Object Identifie: /07.CJON Clinical Jounal of Oncology Nusing Volume 11, Numbe 6 Distess Assessment 817

2 sceening of all patients with cance was an identified gap, so a pocess was initiated to implement the assessment standad. Accoding to Gol (2001), a diagnostic analysis that identifies stakeholdes and inteested paties as well as subgoups expeiencing the most poblems with pactice change must take place fo successful implementation to occu (see Figue 1). Similaly, Gillespie (2005) challenged nuses to build a toolkit to implement NCCN guidelines fo suppotive cae. See Figue 2 fo implementation stategies. Sticke and Sullivan (2003) emphasized the use of pinciplesof-change theoy to guide implementation effots. Along with identifying stakeholdes, expected outcomes, and elevance of the poposed change, they ecommended cost detemination fo implementation and maintenance of the change. Othe ecommendations included building the change into the nomal stuctue wheneve possible and pilot testing befoe widespead use (Gol, 2001). National Compehensive Cance Netwok Distess Themomete and Poblem Checklist In pepaing fo the pilot, a distess sceening tool had to be selected; benchmaking with othe institutions aided in the decision. Seveal tools wee consideed in tems of ease of patient and nuse use, cost, and length of tool. The distess themomete (DT) was selected fo the pilot because it is shot, simple to use, and easy and quick to assess. The DT is a self-epot measue using an 11-point scale fom 0 (no distess) to 10 (exteme distess). On the same page is an associated poblem checklist, which asks whethe the indicated level of distess is elated to pactical, family, emotional, spiitual o eligious, o physical concens (see Figue 3). Initially, the intevention fo scoes of 4 o less (i.e., mild o modeate distess) included offeing patients educational mateials. The intevention fo scoes of 5 o geate (i.e., modeate o sevee distess) included efeal to a mental health pofessional. Since the pilot, a multicente evaluation compaing DT with longe, established measues (e.g., Hospital Anxiety and Depession Scale, Bief Symptom Inventoy-18) showed that a scoe of 4 o geate is a moe sensitive detemination of distess (Jacobsen et al., 2005). Theefoe, scoes of 4 o geate now ae consideed modeate distess and efeal is offeed. Pilot Planning A feasibility pilot was equested by administation and designed by advanced pactice nuses in conjunction with the staff Who is inteested in implementation? Who is involved in implementation? Who ae the stakeholdes? Which aspects of cae should be addessed? Which ecommendations ae not followed? Which subgoups expeience poblems with changing pactice? Figue 1. Diagnostic Analysis fo Successful Implementation of Pactice Guidelines Note. Based on infomation fom Gol, Identify diving foces and oles in pactice. Assess cuent state of pactice, pattens of teatment, and specific outcomes that ae impotant to pactice. Based on assessment, make ecommendations fo an implementation plan. Obtain suppot fo the plan. Implement the plan o potions of the plan. Evaluate and measue outcomes (e.g., compliance with guidelines, cost, patient satisfaction). Figue 2. How to Implement National Compehensive Cance Netwok Guidelines fo Suppotive Cae Note. Fom Implementation of the NCCN Pactice Guidelines: Anemia and Neutopenia, by T.W. Gillespie, 2005, Advanced Studies in Nusing, 3, p Adapted with pemission. of the selected pactice setting. Planning fo the pilot was guided by Oncology Nusing Society (n.d.) application to pactice ecommendations, which include identifying the setting fo the pactice change to be implemented, identifying the pocess and any evisions needed, detemining whethe appoval is needed and by whom, identifying baies and bidges, and ceating a time fame fo staff education. Institutional eview boad appoval was not sought, as consultation with the hospital s compliance office detemined that the poject was consistent with the goal of pefomance impovement athe than eseach. The outcomes sought did not equie patient identifies. The adiation oncology clinic was selected fo the pilot fo seveal easons. The numbe of nuses involved was small enough to make communication manageable, the manage was enthusiastic and suppotive, and the staff had paticipated in eseach peviously and appeciated the impotance of the psychosocial aspects of thei patients cae. Still, adding anything new to the wokday of busy nuses necessitates caeful planning to achieve staff suppot. Selecting inteventions fo patients indicating distess o poblems was anothe task. Again, the eseaches wanted to povide infomation to educate patients and families about coping and symptom management but wee esticted to time constaints of busy clinic nuses and patients eage to get thei teatment and leave. A patient empowement model was selected in which a esouce booklet was ceated in a fomat consistent with the poblem checklist. Available educational mateials wee listed, including Web site addesses. A phone numbe fo the patient education depatment also was listed fo patients without compute access. Nuses then could take the poblem checklist and mak on the esouce diectoy the coesponding education mateials available; patients o family membes could access them at thei convenience. Suppot goup infomation also was included. Patients ating 5 o geate on the DT wee offeed a efeal to a mental health pofessional associated with the cance cente; eithe an oncology social woke o counselo was available by appointment. Pastoal cae was offeed fo patients epoting spiitual distess. Six months pio to implementing the pilot, a meeting was held with the staff and manage of the adiation oncology clinic. Advanced pactice nuses eviewed the pilot poject with the staff and facilitated a discussion about how the pilot would be 818 Decembe 2007 Volume 11, Numbe 6 Clinical Jounal of Oncology Nusing

3 Instuctions: Fist please cicle the numbe (0 10) that best descibes how much distess you have been expeiencing in the past week including today. Exteme distess No distess Second, please indicate if any of the following has been a poblem fo you in the past week including today. Be sue to check YES o NO fo each. YES NO Pactical Poblems Child cae Housing Insuance/financial Tanspotation Wok/school Family Poblems Dealing with childen Dealing with patne Emotional Poblems Depession Feas Nevousness Sadness Woy Loss of inteest in usual activities Spiitual/eligious concens YES NO Physical Poblems Appeaance Bathing/dessing Beathing Changes in uination Constipation Diahea Eating Fatigue Feeling swollen Feves Getting aound Indigestion Memoy/concentation Mouth soes Nausea Nose dy/congested Pain Sexual Skin dy/itchy Sleep Tingling in hands/feet Othe poblems: Figue 3. Distess Themomete and Poblem Checklist Note. Fom NCCN Pactice Guidelines in Oncology TM : Distess Management. v , The Complete Libay of NCCN Clinical Pactice Guidelines in Oncology [CD-ROM] (p. DIS-A). Jenkintown, PA: 2007 National Compehensive Cance Netwok (NCCN). Repinted with pemission. To view the most ecent and complete vesion of the guideline, go to These guidelines ae a wok in pogess that will be efined as often as new significant data become available. NCCN guideline is expected to use independent medical judgment in the context of individual clinical cicumstances to detemine any patient s cae o teatment. The National Compehensive Cance Netwok makes no waanties of any kind whatsoeve egading thei content, use, o application and disclaims any esponsibility fo thei application o use in any way. These guidelines ae copyighted by the National Compehensive Cance Netwok. All ights eseved. These guidelines and illustations heein may not be epoduced in any fom fo any pupose without the expess witten pemission of the NCCN. opeationalized in the clinic. The nuses poposed that the definition of distess appea on the tool itself and equested a space to document patient efeals and educational mateials povided; these changes wee added. The nuses also wanted the DT and poblem checklist to be completed duing the weekly teatment check so that patients would not have to wait an additional day to see a healthcae povide. The timing allowed the assessment to be built into the nomal clinical stuctue fo patients and nuses. A follow-up meeting was held one month pio to implementation, and the DT, poblem checklist, educational mateials, and pocess wee eviewed again. Duing the thee-month pilot, adult patients fom vaious diagnostic goups completed the DT and poblem checklist duing thei weekly teatment check with a pimay nuse. The nuse then eviewed the DT and intevened based on established guidelines. The nuse also shaed any concens checked fom the poblem checklist with the physician. Patients completed one to six weekly sceenings depending on the length of thei couse of teatment. Pilot planning also included a list of questions to be answeed though the poject (see Figue 4). Results A total of 57 adult patients completed the DT duing the pilot: 31 females and 26 males. Disease sites included bain, beast, head and neck, lung, gastointestinal, genitouinay, gynecologic, and lymphoma. A paaphase of NCCN s (2007) definition of distess, an unpleasant expeience of an emotional, psychological, social, o spiitual natue that intefees with the ability to cope with you teatment (p. DIS-2) was pinted on the tool to assist in distess ating. Based on the DT, initial distess scoes anged fom 0 10, with a mean scoe of 2.2. Eight patients had an incease in thei distess scoe ove the couse of Clinical Jounal of Oncology Nusing Volume 11, Numbe 6 Distess Assessment 819

4 Ae patients willing to complete the tool? How do patients ate thei distess? Does a elationship exist between distess scoe and week of adiation teatment? What ae nuses peceptions of the assessment and efeal pocess and ease of using the tool? Did the numbe of efeals to oncology social wokes o counselos change? Did esponses to the Pess Ganey patient satisfaction suvey question, How satisfied ae you with ou sensitivity to you needs change? Figue 4. Questions to Be Answeed in Pilot teatment and 11 patients had a decease; all othe patients with moe than one assessment emained the same. Of the potential 35 poblems listed, 14 patients identified pactical, family, emotional, o spiitual concens; in these 14 aeas, the mean scoe was 2. The emaining 21 aeas addessed physical poblems; in these concens the mean scoe was 4. The total numbe of poblems identified ove the couse of paticipation (see Table 1) indicates that insuance/financial leads pactical poblems, and woy leads emotional poblems. Fom a physical standpoint, fatigue and skin dy/itchy wee the two most commonly epoted symptoms, which would be expected in the adiation population. Oveall, patients wee eceptive to completing the tool and some noted that the expeience was the fist time they wee asked about a numbe of the issues. Social wok efeals duing the thee-month peiod inceased by nine, and efeals to suppot counselos fo patients with cance inceased minimally. No method existed to diffeentiate patients efeed fom the pilot vesus self- o othe efeal; howeve, a minimal incease in mental health efeals was clea, and counselos wokloads wee not stessed a concen that had been posed. Chaplain efeals duing the thee-month peiod inceased by one. In eviewing Pess Ganey patient satisfaction data, the question, How satisfied ae you with ou sensitivity to you needs inceased fom 88.1% the quate pio to implementation to 92.6% duing the quate the pilot was conducted. Patient satisfaction scoes have continued to be highe than peimplementation (see Figue 5). A follow-up meeting was held with the nusing staff afte the pilot concluded. At the meeting, staff wee thanked fo thei effots and the peliminay data, tool buden, and tool benefit wee eviewed. The staff confimed that the DT and poblem checklist wee easy to use, helpful in identifying concens, opened up dialogue egading issues that othewise may not be assessed, and had a well-defined efeal pocess. One nuse stated the following. I was caing fo a woman who eceived chemotheapy pio to adiation fo he beast cance, and she checked unde the physical section, sexual. When I spoke with he about this concen, she was complaining of vaginal dyness, and I was able to povide he with effective symptom management stategies. This symptom is not something I would have nomally assessed fo in this patient eceiving adiation. The nuses ageed that the benefit outweighed the buden of the assessment but felt that weekly use of the DT and poblem checklist was too fequent fo thei wokloads and sustained patient inteest. Postpilot Implementation Afte the data wee finalized and nusing input was gatheed, anothe staff meeting was held to discuss the next steps fo distess assessment. The nuses decided that they would like to continue to use the DT and poblem checklist in pactice with all patients. Thei pefeence was to implement them the fist week of teatment and then again duing the fifth week of teatment. The pactice has been successful fo 18 months following the pilot, although chat audits did demonstate inconsistent use of the DT. Futhe follow-up with the nuses evealed some discomfot discussing emotional concens, so educational sessions to assist nuses in discussing sexual and emotional issues ae ongoing. Recently, the Oncology Custome Satisfaction Committee divided into fou teams, with one of the teams focusing on distess assessment and management. In esponse to the successful implementation and outcomes in one clinic, the committee is chaged with assessing the cuent level of sceening in all the oncology clinics and developing a standadized pocess fo sceening and a consistent pocess fo efeal to oncology counselos and social wokes. Table 1. Poblems Noted on the National Compehensive Cance Netwok Poblem Checklist Poblem Pactical Insuance/financial Wok/school Tanspotation Housing Child cae Family Dealing with patne Dealing with childen Emotional Woy Nevousness Feas Loss of inteest in usual activities Sadness Depession Spiitual/eligious Physical Fatigue Skin dy/itchy Nausea Pain Sleep Tingling hands/feet Indigestion N = 57 a Based on 165 assessments _n a % Decembe 2007 Volume 11, Numbe 6 Clinical Jounal of Oncology Nusing

5 Satisfaction Scoes Conclusion 10/04 12/04 Pe 1/05 3/05 Duing 4/05 12/05 Post Implementation Peiod Note. Patients esponded to the question ating, How satisfied ae you with ou sensitivity to you needs? Figue 5. Patient Satisfaction Scoes 1/06 12/06 Post This is one of the fist pilot studies descibing implementation of the NCCN DT and poblem checklist in a adiation oncology clinic. The ease of use and efeal pocess make the tool highly successful in clinical pactice. Incopoating distess assessment into the existing pactice model and poviding education and suppot to staff egading potentially uncomfotable communication issues ae essential to successful implementation. Ongoing education and evaluation also ae citical to maintaining the success of the tool in pactice. Autho Contact: Cayl D. Fulche, MSN, APRN, BC, can be eached at cayl.fulche@duke.edu, with copy to edito at CJONEdito@ons.og. gess of the Oncology Nusing Society. Retieved Decembe 14, 2006, fom Funk, S.G., Tonquist, E.M., & Champagne, M.T. (1995). Baies and facilitatos of eseach utilization: An integative eview. Nusing Clinics of Noth Ameica, 30, Gillespie, T.W. (2005). Implementation of the NCCN pactice guidelines: Anemia and neutopenia. Advanced Studies in Nusing, 3, Glacken, M., & Chaney, D. (2004). Peceived baies and facilitatos to implementing eseach findings in the Iish pactice setting. Jounal of Clinical Nusing, 13, Gol, R. (2001). Successes and failues in the implementation of evidence-based guidelines fo clinical pactice. Medical Cae, 39(8, Suppl. 2), II-46 II-54. Jacobsen, P.B., Donovan, K.A., Task, P.C., Fleishman, S.B., Zaboa, J., Bake, F., et al. (2005). Sceening fo psychologic distess in ambulatoy cance patients. Cance, 103, Madden, J. (2006). The poblem of distess in patients with cance: Moe effective assessment. Clinical Jounal of Oncology Nusing, 10, National Compehensive Cance Netwok. (2007). Clinical pactice guidelines in oncology: Distess management (v ). Retieved Novembe 9, 2007, fom pofessionals/physician_gls/pdf/distess.pdf Oncology Nusing Society. (n.d.). EBP pocess: Application to pactice. Retieved Apil 15, 2006, fom Toolkits/Evidence/Pocess/application.shtml Sticke, C.T., & Sullivan, J. (2003). Evidence-based oncology oal cae clinical pactice guidelines: Development, implementation, and evaluation. Clinical Jounal of Oncology Nusing, 7, Zaboa, J., Bintzenhofeszoc, K., Cubow, B., Hooke, C., & Piantadosi, S. (2001). The pevalence of psychological distess by cance site. Psycho-Oncology, 10, Refeences Bultz, B.D., & Holland, J.C. (2006). Emotional distess in patients with cance: The sixth vital sign. Community Oncology, 3, Clak, P.M. (2001). Teating distess: Woking towad psychosocial standads fo oncology cae. Medscape coveage of the 26th Con- Receive continuing nusing education cedit fo eading this aticle and taking a bief quiz. See the Continuing Nusing Education in this issue fo moe infomation. Clinical Jounal of Oncology Nusing Volume 11, Numbe 6 Distess Assessment 821

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