Developing the CAHPS Survey for Cancer Care: Executive Summary: Preliminary Findings

Transcription

1 Developing the CAHPS Survey for Cancer Care: Executive Summary: Preliminary Findings October 8, 0 SUBMITTED TO: Christine Crofton, Ph.D. and Judith Sangl, Ph.D. Task Order Officers The Agency for Healthcare Research and Quality Neeraj Arora, Ph.D. Technical Advisor National Cancer Institute SUBMITTED BY: Steven Garfinkel, Ph.D. San Keller, Ph.D. Chris Evensen, M.S. Elizabeth Frentzel, M.P.H. Tamika Cowans, B.A. American Institutes for Research Kathleen Yost, Ph.D. Jason Egginton, M.P.H. Mayo Clinic

2 Developing the CAHPS Survey for Cancer Care: Executive Summary: Preliminary Findings Executive Summary The purpose of the Development of a CAHPS Survey for Cancer Care Cancer was to develop a measure of quality of cancer care for use in decision making by providers, patients, and their families, accreditation organizations, and payers. Although a number of commercial survey products are in use, there is currently no standard survey in the public domain that allows patients to compare cancer treatment centers and it is the goal that organizations concerned with cancer care will use this survey to standardize and ultimately improve cancer care. This report includes information on formative research, survey development, and preliminary findings from pilot testing the instrument. The project had two initial sponsors: the Agency for Healthcare Research and Quality s (AHRQ) Consumer Assessment of Healthcare Providers and Systems (CAHPS ) program, and the Patient-Centered Care Research Program of the Outcomes Research Branch of the National Cancer Institute (NCI). In addition, the California HealthCare Foundation (CHCF) provided seed funding to support developmental work in California. The American Institutes for Research (AIR) and Mayo Clinic designed and carried out the research and development for this survey between October 009 and August 0. As explained in the report, delays were caused by an unanticipated adverse event ultimately arising from the challenge of identifying an appropriate sampling frame for the accountable units. Institutional Review Board (IRB) actions, and the need to replace several cancer centers that dropped out of the study caused a significant delay in field test data collection. At the end of the contract, data collection had been completed for two of the six participating cancer centers. Thus, the results presented in this report are based on the 77 responses from Sites and and are preliminary, pending completion of data collection and further analysis of the complete data set. We expect to complete data collection at the other four sites, analyze the complete data set, and report a final set of recommended composites and items by the end of 0. This work will be supported with supplemental funding from CHCF and other sources, including AIR, Mayo Clinic, and a companion project underway at AIR and Mayo Clinic to develop complementary measures and procedures. Thus, although this report constitutes the final report under the AHRQ/NCI contract, the analyses and findings about response bias, mode effects, composites, and case mix adjustment are preliminary. This research will continue and the analyses and report will be completed under separate funding. Manuscripts integrating these preliminary results are also under preparation. They will be updated as new data become available and submitted following the final analysis revisions early in 0. Survey Development Process The following steps from the standard CAHPS development process were involved in the development of the preliminary cancer experience-of-care survey:. Conducting a literature review and creating a database of existing measures. We identified surveys and 0 study-specific measures with a total of,6 items in the original item library.. Publishing a call for measures in the Federal Register. AHRQ published a call for measures in the Federal Register requesting survey items or domains from other surveys on patient perspectives on cancer care on March, 00. measures were submitted.

3 Developing the CAHPS Survey for Cancer Care: Executive Summary: Preliminary Findings. Conducting focus groups. We conducted 6 focus groups that varied by stage of cancer, type of cancer, type of treatment facility, primary language, and whether they received cancer care or were a caregiver.. Developing a draft survey. We drafted the initial set of survey items between July 00 and January 0.. Convening a technical expert panel (TEP) to review candidate items and composites. The webinar with TEP members was held January 8, Cognitive testing the draft survey. We conducted two rounds of cognitive testing to assess the usability of the survey questions with consumers in June and August Refining the survey. We further reviewed, refined, and finalized the survey for the pilot test in March Field testing the survey with six sites. We conducted a field test at three academic facilities, one large community-based cancer center, one small community-based cancer center, and one health care system. Geographic regions included the West Coast, Midwest, South, rtheast, and Southeast. Our initial sample size was 70 cancer patients with any type or stage of cancer distributed equally among the three main cancer treatment modalities: medical, radiation, and surgical oncology. Our goal was a percent response rate or 00 completions per site. Data were collected by the Mayo Clinic Survey Research Center. 9. Analyzing the field test data. We analyzedthe pilot data using psychometric statistical techniques including factor analysis and multi-trait analysis. Discussions with the TEP and stakeholder communities helped define our approach to survey operations. The TEP consisted of patient representatives along with experts in cancer care, the assessment of quality of care and patient outcomes, and CAHPS methodology:members are shown in Exhibit ES. Exhibit ES. Description of Expert Panel Members Name Organization Type of Representation Ethan Basch, M.D. University of rth Carolina at Chapel Hill Quality Improvement/Oncologist Cynthia Chauhan rth Central Cancer Treatment Group Patient Advocate Waylan Eppard rth Central Cancer Treatment Group Patient Advocate Judy Hibbard, Dr.PH., M.P.H. Oregon Health & Science University Reporting Eugene Nelson, D.Sc., M.P.H. Dartmouth University Quality of Care 6 Ellen Stovall National Coalition on Cancer Survivorship Survivorship 7 Patricia Strusowski, R.N. Christiana Care Health System Oncology Nurse 8 Robert Volk, M.S., Ph.D. Eisenberg Center Shared Decision Making 9 Saul Weingart, M.P.H., Ph.D. Dana Farber Cancer Center Patient Safety/Clinician 0 Carla Zema, Ph.D. CAHPS Consortium CAHPS

4 Developing the CAHPS Survey for Cancer Care: Executive Summary: Preliminary Findings We also spoke with representatives of the cancer centers from five community hospitals and five professional organizations. The five professional organizations included: American Society of Clinical Oncology (ASCO), American Society for Therapeutic Radiation Oncology (ASTRO), Commission on Cancer (CoC), NCI Community Cancer Centers Program (NCCCP), and National Comprehensive Cancer Network (NCCN). The CAHPS Consortium provided interim review and comment on a draft questionnaire, Drs. Jack Fowler and Karen Sepulcha of the University of Massachusetts at Boston and the CAHPS Consortium provided advice on the shared decisionmaking composite, and Dr. Carla Zema of Westat and the CAHPS Consortium provided continuous advice throughout the project to ensure that the methods of item generation and question formulation were consistent with CAHPS survey methodology. The discussions with cancer center staff and professional associations led us to alter the survey reference period and accountable unit. We originally created a single questionnaire with a -month reference period. This was changed to an assessment of community and academic cancer centers using a -month reference period for most substantive items. Three parallel questionnaires were created to make reference to the three major treatment modalities, respectively: surgery, medical oncology, and radiation oncology. The cancer center was identified as the most promising unit of assessment, because there is a standard accreditation process, with specified criteria and a large and growing number of centers, which have become the dominant cancer treatment delivery system model in the U.S, accounting for about 7 percent of cancer care, according to the American College of Surgeon s Commission on Cancer, which accredits cancer centers. Composite Structure As part of the standard CAHPS survey development process, we developed composite measures from multiple items that measured the same aspect of care. We conceptually defined composites representing our hypothesis about the structure that the survey data would reflect. We then conducted a confirmatory factor analysis (CFA) using structural equation modeling (SEM) to determine whether the pilot data were consistent with the hypothesized structure. The CFA did not wholly support the structure we had hypothesized. Therefore, we conducted an exploratory factor analysis (EFA) to help us define reliable and valid composites and to help us identify items that should be revised or deleted. We determined the number of factors to extract based on parallel analysis (PA) and rotated these obliquely. We identified the questions in each composite based on describing the simple structure in the factor pattern. We then evaluated the fit of this structure using SEM and evaluated the unique relationship of each item to its composite. We evaluated the composite scores by calculating internal consistency reliability and determining their relationships to the patients global ratings of overall cancer care. For each of the

5 Developing the CAHPS Survey for Cancer Care: Executive Summary: Preliminary Findings composite, we determined the percentage of respondents with the highest and lowest composite scores to evaluate restriction in range for the composite scores. The four composites were: Shared Decisionmaking, Treatment Information Sharing, Affective Communication, and Enabling Patient Self-Management. The proposed composite structure along with abbreviated question content is listed in Exhibit ES. All composites refer to a different aspect of patient-centered communication between the patient and his or her doctor or therapy team. The full questionnaires are reproduced in Appendixes A C. Exhibit ES. Preliminary Composites with Paraphrased Question Content Q9 Q# Shared Decision Making Q0 Q Q How often your doctor or health care professional. explain advantages of each choice for cancer treatment explain disadvantages of each choice for cancer treatment ask your opinion about each choice of cancer treatment involve you in decisions about therapy Q# Communication About Therapy Q6 Q7 Q8 Q9 Q6 Q8 Q How often your treatment team encourages contact between visits tells you to call regarding certain symptoms or side-effects tells you how to contact them outside of regular hours explains how cancer and cancer treatment could affect your daily activities explains results in way you understand explain purpose of medicine prescribed for you in a way you understand helps you deal with therapy-related pain Q# Affective Communications Q Q Q Q6 Q7 Q8 How often your treatment team treats you with courtesy and respect shows respect for what you had to say really cares about you as a person listens carefully to you was straightforward when talking with you about your cancer or cancer therapy spends enough time with you Q# Enabling Patient Self-Management Decision Making Q Q Q7 Q8 Q Did your treatment team help you deal with changes in your energy talk to you about emotional problems related to your therapy help you deal with these emotional problems talk to you about additional services to manage your cancer care at home talk to you about things you can do to maintain your health during treatment

6 Developing the CAHPS Survey for Cancer Care: Executive Summary: Preliminary Findings 6 Psychometric Analysis The psychometric analysis supported the measurement properties of the four composites described above. The SEM demonstrated acceptable fit of the data to the four-composite model (RMSEA = 0.08; CFI/NNFI > 0.90). The individual questions were shown to be strongly and uniquely related to each respective composite (as indicated by the highly significant [p < 0.000] regression weights of questions on composites as well as the scaling success rates). The internal consistency reliability estimates were good and ranged from 0.77 to As with other CAHPS measures, most respondents reported the best experience on all questions about Affective Communication. These questions asked about the amount of consideration and respect shown to patients. The remaining composites showed more variation in scores (% to 7% of respondents had the highest score and 0% to 7% had the lowest score across the other composites). The intercorrelations of three of the composite scores (which ranged from 0. to 0.9) demonstrated that they measured distinct aspects of cancer care. The correlation between Affective Communication and Communication about Therapy was moderately high (r=0.60) but not so high as to suggest redundancy in measurement. The composites together explained nearly 0% of the variance in overall ratings of cancer care quality (F=6.; p < 0.000); moreover the Affective Communication, Treatment Information Sharing, and Enabling Patient Self-Management composites were significantly uniquely related to overall ratings of care. Exhibit ES lists all of the Cancer CAHPS pilot survey questions that were considered for inclusion in composites and summarizes the current state of our knowledge regarding them. Exhibit ES. Disposition of Questions from Field Test Survey Considered for Inclusion in Composites Q# Paraphrased Question Content Result Reason or Comments talk with you about not actively treating your TBD loadings above 0.9 per EFA cancer as an option? talk with you about your chosen therapy as an option to treat your cancer? TBD loadings above 0.9 per EFA; complicated factor structure 7 talk to you about an alternative therapeutic option A as a way to treat your cancer 8 talk to you about an alternative therapeutic option B as a way to treat your cancer 9 clearly explains advantages of each choice for cancer treatment? 0 clearly explains disadvantages of each choice for cancer treatment? ask your opinion about each choice of cancer treatment TBD TBD SDM SDM SDM Greatly compromised total score reliability; nature of content different from other questions in composite loadings above 0.9 per EFA te: results good without ; factor content was complicated when were included in EFA te: results good without ; factor content was complicated when were included in EFA te: results good without ; factor content was complicated when were included in EFA involve you in decisions about therapy SDM te: results good without ; factor content was complicated when were included in EFA talk with you about the reasons you might not want to have your chosen therapy? talk with you about the reasons you might want to have your chosen therapy? ask for your opinion about whether or not to have your chosen therapy? TBD TBD TBD Complicated factor structure when redundant questions (9 ) were not included in the analysis Complicated factor structure when redundant questions (9 ) were not included in the analysis Complicated factor structure when redundant questions (9 ) were not included in the analysis

7 Developing the CAHPS Survey for Cancer Care: Executive Summary: Preliminary Findings 7 Q# Paraphrased Question Content Result Reason or Comments 6 encourages contact between visits CATx All analyses support 7 tells you to call regarding certain symptoms or CATx All analyses support side-effects 8 your treatment team tells you how to contact them CATx All analyses support outside of regular hours 9 explains how cancer and cancer treatment could CATx All analyses support affect your daily activities (patient safety) your cancer center visits scheduled at times that TBD loadings above 0.9 per EFA were convenient for you? treats you with courtesy and respect AC All analyses support shows respect what you had to say AC All analyses support really cares about you as a person AC All analyses support 6 listens carefully to you AC All analyses support 7 straightforward when talking with you about your cancer or cancer therapy 8 did your treatment team spend enough time with you? 9 seem up-to-date about how to treat your type of cancer? 0 Did your treatment team delay treatment/decision due to missing test results/reports from others? Did you get conflicting information about your care from different members of your treatment team? tells you what the next steps in your therapy would be? were blood tests, x-rays, scans, etc. scheduled to be done as soon as you thought you needed? did you have to wait longer for your test results than you expected? AC AC TBD TBD TBD TBD TBD TBD All analyses support All analyses support loadings above 0.9 per EFA loadings above 0.9 per EFA loadings above 0.9 per EFA loadings above 0.9 per EFA loadings above 0.9 per EFA; complicated factor structure loadings above 0.9 per EFA; complicated factor structure 6 explains results in way you understand TBD loadings above 0.9 per EFA; complicated factor structure 8 explains purpose of medicine prescribed for you CATx All analyses support in a way you understand 9 Did you and your treatment team talk about pain related to your cancer or therapy Tx I All analyses support Did your treatment team help you deal with this pain Did you and your treatment team talk about changes in energy related to cancer or therapy Did your treatment team help you deal with changes in your energy 7 Did you and your treatment team talk about emotional problems related to your therapy 8 Did your treatment team help you deal with these emotional problems TBD E Pt TBD E Pt E Pt loadings above 0.9 per EFA; complicated factor structure All analyses support Complicated factor structure All but scaling success supports All analyses support

8 Developing the CAHPS Survey for Cancer Care: Executive Summary: Preliminary Findings 8 Q# Paraphrased Question Content Result Reason or Comments Did your treatment team arrange for these additional TBD Too few responses to include in EFA services Did you and your treatment team talk about things E Pt All analyses support you can do to maintain your health during treatment Did your treatment team involve your family SIM Only representation of important content members or close friends in discussions as much as you wanted 6 How often did your treatment team provide an interpreter SIM Only representation of important content SDM = Shared Decision Making; TBD = Psychometric analysis did not support inclusion of this question in one of the four composites, but the analyses will be repeated and the unit-level analyses will be conducted. These could support the inclusion of the question. CATx = Communication about Therapy; AC = Affective Communication; E Pt = Enabling Patient Self Management; SIM = Recommended to keep as a single item measure because content is unique and important to patients. Further analysis of the field test data awaits the receipt of data from four more cancer centers. At that point we will repeat the psychometric analyses to determine the stability of this composite structure as well as the psychometric properties of the scores. We will also consider alternative composites. Questions having to do with patient safety and care coordination contributed to the Communication about Therapy composite rather than forming separate distinct composites. However, many users of this survey might be interested in distinct measurement for these two aspects of care and we will explore this possibility with the complete data set. We will also conduct a mode effects study comparing mail and telephone administration. Finally, we will complete the determination of case mix adjusters which requires an evaluation of heterogeneity of adjusters across accountable units. The three goals of case-mix adjustment in the analysis of patient assessments of care are to help remove the effects of individual patient characteristics that can affect ratings, remove effects that might be considered spurious (i.e., that reflect something other than quality of care), and remove incentives for providers to avoid hard to treat patients. For example, age, education, and health status are standard CAHPS case-mix adjusters. The field-test version of this survey included nearly 0 variables to be evaluated as potential case-mix adjusters: Potential case mix adjusters will be factors beyond the control of the accountable unit, which are significantly related to the composite scores as well as differentially present among the accountable units. Here we summarize what was found regarding the variables that were related to the overall rating of quality of cancer care. We tested four models to evaluate the relative importance of different methods for measuring comorbidity which was a substudy embedded in the survey development task. Model : all potential adjusters except the comorbidity indices, on the full data set (n=77). Model : the same adjusters as Model, plus the first comorbidity index, run on Version data only (n=99)

9 Developing the CAHPS Survey for Cancer Care: Executive Summary: Preliminary Findings 9 Model : the same adjusters as Model, plus the second comorbidity index, run on Version data only (n=7) Model : the same adjusters as Model, plus the third comorbidity index, run on Version data only (n=7) Results for these analyses are presented in Exhibit ES. Exhibit ES. Results of Variable Selection Models Global Rating of Treatment Team (q7) Model Model Model Model N = 70 N = 7 N = N = Predictor Estimate # Selected? Estimate # Selected? Estimate # Selected? Estimate # Selected? Age ns no ns no ns no 0.* yes Education 0.08* yes 0.** yes ns no ns no Self-Rating of Mental 0.7*** yes 0.8*** yes 0.6** yes 0.9*** yes Health Race: Other 0.*** yes 0.** yes 0.6** yes 0.6** yes Treatment/ Services Received: 0.09** yes 0.* yes ns no ns no Surgery (Q8_) Treatment/ Services Received: ns no 0.* yes ns no ns no none/ w&w (Q8_6) Number Visits to Cancer 0.0** yes ns no ns no ns no Center for Appts (Q) How long have you been treated for cancer (Q) ns no ns no 0.6** yes 0.** yes * p < 0.0; ** p < 0.0; *** p < 0.00 n s not equal to full sample available due to deletion of cases with missing values reference category for race is White; dummy variable for Black/AA was not significant, and thus is not included here # parameter estimates are standardized; ns = not statistically significant Of the potential adjusters evaluated, only overall mental health status and race were significant in all four models. Age, education, services received (both surgery and no treatment/watching and waiting), number of visits to the cancer center for appointments with members of the treatment

10 Developing the CAHPS Survey for Cancer Care: Executive Summary: Preliminary Findings 0 team, and the length of time the patient had been treated for cancer were each selected in at least one of the four models. ne of the three alternative comorbidity indexes were statistically significant. Heterogeneity estimates are required for estimating the explanatory power and impact of each adjuster and we cannot produce valid results with data from only two cancer treatment centers. Thus, the case-mix analysis will be completed under separate funding when data from the additional sites are available. Finalization of Survey The final selection of the composite structure, individual substantive items, and case mix adjusters will be completed under separate funding from the California HealthCare Foundation, Mayo Clinic, and AIR, when the data are received from the four field test sites still collecting data. We expect to end data collection by mid-vember 0 and complete the analysis by the end of 0, at which time we will recommend a set of items for the final questionnaire and produce formatted versions ready for use. Next Steps The use of only six field test sites, although planned, represents a limitation on the generalizability of our findings and on our ability to evaluate the degree to which the survey discriminates among cancer centers. Even the 0 sites that we had originally considered would not have been sufficient to compare the performance of the survey in all types of hospital-based and free-standing cancer centers or to appreciably improve our ability to evaluate discrimination beyond the analysis to be concluded on the six sites by the end of 0. Therefore, the next step should be a much larger field test with a broader range of cancer centers. A substantially larger field test will also provide greater heterogeneity among cancer centers, which will enable us to better evaluate case mix adjusters. A larger field test would also support further investigation of sampling frames. Tumor registries, which are common to all accredited cancer centers, were not useful as sampling frames, because they are required to enroll only new analytic cases within six months of diagnosis. Based on stakeholder interviews, we decided to include episodes for recurring cancer and cancers diagnosed elsewhere in the patient population for which performance would be measured. Once we determined that it was important to sample and assess care by treatment modality, we also decided on a -month reference period for treatment items to minimize the frequency with which patients would have multiple treatment modalities during the reference period. Work is underway at the Commission on Cancer to evaluate the feasibility of rapid registration, which suggests that using tumor registries as the sampling frame might become feasible in the future. A substantially larger field test would enable further investigation of the use of tumor registries and other potential sources of sampling frames. We are currently working on plans to obtain support for a larger field test. Finally, although this survey is intended to become a CAHPS product, the CAHPS trademark has not been obtained. Our report on the analysis of data from all six sites will include an assessment of the extent to which the requirements for the CAHPS trademark have been satisfied and we will discuss the next steps needed to obtain the CAHPS trademark with AHRQ, NCI, and members of the CAHPS Consortium.

11 Developing the CAHPS Survey for Cancer Care: Executive Summary: Preliminary Findings For more information, please contact the following individuals: Judy Sangl, Sc.D. Agency for Healthcare Research and Quality Cancer CAHPS Project Officer (0) 7-08 Neeraj Arora, Ph.D. National Cancer Institute Cancer CAHPS Technical Advisor (0) 9-66 Steven Garfinkel, Ph.D. American Institutes for Research Cancer CAHPS Project Director (99) Elizabeth Frentzel, M.P.H. American Institutes for Research Cancer CAHPS Associate Project Director (99) 98-9

12 Form Approved OMB Exp. Date 0//0 CAHPS for Cancer Care Survey Public reporting burden for this collection of information is estimated to average 0 minutes per response, the estimated time required to complete the survey. An agency may not conduct or sponsor, and a person is not required to respond to, a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden, to: AHRQ Reports Clearance Officer Attention: PRA, Paperwork Reduction Project (09-0) AHRQ, 0 Gaither Road, Room # 06, Rockville, MD 080. Pending Approval by the Agency for Healthcare Research and Quality - -

13 Cancer Surgery - Version Survey Instructions Answer each question by marking the box to the left of your answer. You are sometimes told to skip over some questions in this survey. When this happens you will see an arrow with a note that tells you what question to answer next, like this: If, go to # on Page - -

14 Cancer Surgery - Version. Our records show that you received surgery to treat your cancer from [NAME OF CANCER CENTER] within the last months. Is that right? If, go to #8 on page 0. How long have you been treated at [NAME OF CANCER CENTER] for cancer? Less than months At least months but less than year At least year but less than years years or more. When were you first diagnosed with your cancer? Less than months ago to 6 months ago 7 months to months ago year to years ago More than years ago Care after Diagnosis: Choosing and Understanding Cancer Treatment. Since your cancer was diagnosed, how much did a doctor or other health care professional at [NAME OF CANCER CENTER] talk with you about not actively treating your cancer as an option? A lot Some A little t at all. Since your cancer was diagnosed, how much did a doctor or other health care professional at [NAME OF CANCER CENTER] talk with you about cancer surgery as an option to treat your cancer? A lot Some A little t at all 6. Since your cancer was diagnosed, how much did a doctor or other health care professional at [NAME OF CANCER CENTER] talk with you about other ways to treat your cancer? A lot Some A little t at all If t at all, go to # 7. Since your cancer was diagnosed, how much did a doctor or other health care professional at [NAME OF CANCER CENTER] talk with you about drug therapy as an option? Drug therapy uses medicine to treat cancer. Examples include chemotherapy, hormonal therapy, or immunotherapy. A lot Some A little t at all - -

15 Cancer Surgery - Version 8. Since your cancer was diagnosed, how much did a doctor or other health care professional at [NAME OF CANCER CENTER] talk with you about radiation therapy as an option? A lot Some A little t at all 9. Since your cancer was diagnosed, did a doctor or other health care professional at [NAME OF CANCER CENTER] clearly explain the advantages of each choice for cancer treatment, including the treatments you did not get? 0. Since your cancer was diagnosed, did a doctor or other health care professional at [NAME OF CANCER CENTER] clearly explain the disadvantages of each choice for cancer treatment, including the treatments you did not get?. Since your cancer was diagnosed, did a doctor or other health care professional at [NAME OF CANCER CENTER] ask for your opinion about each choice of cancer treatment, including the treatments you did not get?. Since your cancer was diagnosed, did a doctor or other health professional at [NAME OF CANCER CENTER] involve you in decisions about your cancer treatment as much as you wanted? Understanding Cancer Surgery and Contacting the Team As you answer the questions in this survey, think only about your experiences with your cancer surgery at [NAME OF CANCER CENTER].. Since your cancer was diagnosed, did a doctor or other health care professional at [NAME OF CANCER CENTER] talk with you about the reasons you might not want to have cancer surgery?. Since your cancer was diagnosed, did a doctor or other health care professional at [NAME OF CANCER CENTER] talk with you about the reasons you might want to have cancer surgery? - -

16 Cancer Surgery - Version. Since your cancer was diagnosed, did a doctor or other health care professional at [NAME OF CANCER CENTER] ask for your opinion about whether or not to have cancer surgery? 9. Since it was decided that you would have cancer surgery, did your cancer surgery team clearly explain how your cancer and cancer surgery could affect your normal daily activities? Cancer surgery team refers to the doctors, nurses, therapists, technicians, and their support staff involved with your cancer surgery through [NAME OF CANCER CENTER]. 6. Since it was decided that you would have cancer surgery, did your cancer surgery team encourage you to contact them with questions between visits? 7. Since it was decided that you would have cancer surgery, did your cancer surgery team tell you to call them immediately if you have certain symptoms or side effects? 8. Since it was decided that you would have cancer surgery, did your cancer surgery team give you clear instructions about how to contact them outside of regular office hours? Getting Cancer Surgery As you answer the questions in this survey, think only about the doctors, nurses, therapists, technicians, and their support staff who were involved with your cancer surgery through [NAME OF CANCER CENTER] during the last months. Together, these persons are called your cancer surgery team in the following questions. 0. In the last months did you have an overnight hospital stay for your cancer?. In the last months, how many times did you visit the cancer center in person for an appointment with members of your cancer surgery team? Do not include telephone calls, s, or overnight hospital stays for your cancer. 0 times to times 6 to 0 times or more times - -

17 Cancer Surgery - Version. In the last months, how often were your cancer center visits scheduled at times that were convenient for you? Your Cancer Surgery Team. In the last months, how often did your cancer surgery team treat you with courtesy and respect?. In the last months, how often did your cancer surgery team show respect for what you had to say?. In the last months, how often did you feel your cancer surgery team really cared about you as a person? 6. In the last months, how often did your cancer surgery team listen carefully to you? 7. In the last months, how often was your cancer surgery team direct and straightforward when talking with you about your cancer and cancer surgery? 8. In the last months, how often did your cancer surgery team spend enough time with you? 9. In the last months, did your cancer surgery team seem up-to-date about how to treat your type of cancer? 0. In the last months, did your cancer surgery team delay your cancer treatment or a decision about your cancer treatment because they were missing test results or reports from other health professionals? - 6 -

18 Cancer Surgery - Version. In the last months, did you get conflicting information about your care from different members of your cancer surgery team?. In the last months, did your cancer surgery team tell you what the next steps in your cancer surgery would be? Tests, Treatment, and Procedures. In the last months, did you have blood tests, x-rays, scans, or other procedures as part of your cancer treatment? Do not include cancer surgery. If, go to #6. How often were the blood tests, x-rays, scans, or other procedures scheduled to be done as soon as you thought you needed? Do not include cancer surgery.. In the last months, how often did you have to wait longer for your test results than you expected? 6. Cancer surgery team refers to the doctors, nurses, therapists, technicians, and their support staff involved with treating your cancer through [NAME OF CANCER CENTER]. In the last months, how often did your cancer surgery team explain test results in a way that was easy to understand? 7. In the last months, did your cancer surgery team prescribe medicine that you had not taken before? If, go to #9 8. In the last months, did your cancer surgery team explain what that medicine was for in a way that was easy to understand? 9. In the last months, did you and your cancer surgery team talk about pain related to your cancer or cancer surgery? 0. In the last months, were you bothered by pain from your cancer or cancer surgery? If, go to # - 7 -

19 Cancer Surgery - Version. In the last months, did your cancer surgery team advise you about or help you deal with this pain?. In the last months, did you and your cancer surgery team talk about any changes in your energy levels related to your cancer or cancer surgery?. In the last months, were you bothered by changes in your energy level related to your cancer or cancer surgery? If, go to #. In the last months, did your cancer surgery team advise you about or help you deal with these changes in your energy levels?. In the last months, did you and your cancer surgery team talk about any emotional problems, such as anxiety or depression, related to your cancer or cancer surgery? 6. In the last months, were you bothered by any emotional problems, such as anxiety or depression, related to your cancer or cancer surgery? If, go to #8 7. In the last months, did your cancer surgery team advise you about or help you deal with these emotional problems? 8. In the last months, did you and your cancer surgery team talk about additional services to manage your cancer care at home, such as home health care, special medical equipment, or special supplies? 9. In the last months, did you need additional services to manage your cancer care at home, such as home health care, special medical equipment, or special supplies? If, go to # 0. Did you need help arranging for these additional services? If, go to #. Did your cancer surgery team help arrange for these additional services? - 8 -

20 Cancer Surgery - Version. In the last months, did you and your cancer surgery team talk about things you can do to maintain your health during cancer treatment such as what to eat and what exercises to do? Family and Caregivers. In the last months, were any family members or close friends present during discussions with your cancer surgery team about your cancer or cancer care? If, go to #. In the last months, did your cancer surgery team involve your family members or close friends in discussions as much as you wanted? 6. In the last months, how often did your cancer surgery team provide an interpreter? Overall Rating 7. Using any number from 0 to 0, where 0 is the worst cancer surgery team possible and 0 is the best cancer surgery team possible, what number would you use to rate your cancer surgery team over the last months? 0 Worst cancer surgery team possible Best cancer surgery team possible Language Interpreter Services. An interpreter is a person who repeats what someone says in a language used by another person; for example Spanish, Russian, Chinese, or American Sign Language. In the last months, did you want your cancer surgery team to provide an interpreter to help you speak with your cancer surgery team? If, go to #7-9 -

21 Cancer Surgery - Version About You 8. What types of cancer treatments or services have you had from [NAME OF CANCER CENTER]? Diagnosis of your cancer, which involves determining if you have cancer. Planning of your treatment by surgeons, radiologists, or medical oncologists working together to review your case. Surgery to treat your cancer. Radiation therapy, which uses high-energy radiation like x-rays or radioactive implants to treat cancer and shrink tumors. Drug therapy, which uses medicine to treat cancer. Examples include chemotherapy, hormonal therapy, or immunotherapy. active treatment or waiting and watching to see if treatment for your cancer is needed. 9. How do you prefer to make decisions about your cancer treatment? You prefer to mainly make the decisions You prefer for you and your doctor to make the decisions together You prefer for your doctor to mainly make the decisions 60. In the last months, did you get health care or more times for a condition or problem? Do not include cancer, pregnancy, or menopause. If, go to #6 6. Is this a condition or problem that has lasted for at least months? 6. Do you now need or take medicine prescribed by a doctor? Do not include birth control or a medicine for cancer. If, go to #6 6. Is this medicine to treat a condition that has lasted for at least months? Do not include cancer, pregnancy, or menopause. 6. In general, how would you rate your overall health? Excellent Very good Good Fair Poor 6. In general, how would you rate your overall mental or emotional health? Excellent Very good Good Fair Poor - 0 -

22 Cancer Surgery - Version 66. What kind of health insurance or health care coverage do you have? Include those that pay for only one type of service (nursing home care, accidents, or dental care). Exclude private plans that only provide extra cash while hospitalized. 67. What is your age? Private health insurance, such as Kaiser Permanente or Blue Cross Blue Shield Medicare MediGap Medicaid CHIP, the Children's Health Insurance Program, or SCHIP Military health care, such as TRICARE, VA, or CHAMP-VA Indian Health Service State-sponsored health plan Other government program Single service plan, such as dental, vision, prescriptions coverage of any type Other, please specify 8 to 0 to to to to to 6 6 to 7 7 or older 68. Are you male or female? Male Female 69. What is the highest grade or level of school that you have completed? 6 8th grade or less Some high school, but did not graduate High school graduate or GED Some college or -year degree -year college graduate More than -year college degree 70. Are you of Hispanic or Latino origin or descent?, Hispanic or Latino, t Hispanic or Latino 7. What is your race? Please mark one or more. 6 White Black or African American Asian Native Hawaiian or Other Pacific Islander American Indian or Alaska Native Other 7. Did someone help you complete this survey? Thank you. Please return the completed survey in the postage-paid envelope. - -

23 Cancer Surgery - Version 7. How did that person help you? Mark all that apply. Read the questions to me Wrote down the answers I gave Answered the questions for me Translated the questions into my language Helped in some other way Please print: Thank you. Please return the completed survey in the postage-paid envelope. - -

24 Form Approved OMB Exp. Date 0//0 CAHPS for Cancer Care Survey Public reporting burden for this collection of information is estimated to average 0 minutes per response, the estimated time required to complete the survey. An agency may not conduct or sponsor, and a person is not required to respond to, a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden, to: AHRQ Reports Clearance Officer Attention: PRA, Paperwork Reduction Project (09-0) AHRQ, 0 Gaither Road, Room # 06, Rockville, MD 080. Pending Approval by the Agency for Healthcare Research and Quality - -

25 Drug Therapy - Version Survey Instructions Answer each question by marking the box to the left of your answer. You are sometimes told to skip over some questions in this survey. When this happens you will see an arrow with a note that tells you what question to answer next, like this: If, go to # on Page - -

26 Drug Therapy - Version. Drug therapy for cancer involves taking medicine to treat your cancer. Examples of drug therapy are chemotherapy, immunotherapy, and hormonal therapy. Drug therapy does not include radiation therapy or surgery. Our records show that you received drug therapy to treat your cancer from [NAME OF CANCER CENTER] within the last months. Is that right? If, go to #8 on page 0. How long have you been treated at [NAME OF CANCER CENTER] for cancer? Less than months At least months but less than year At least year but less than years years or more. When were you first diagnosed with your cancer? Less than months ago to 6 months ago 7 months to months ago year to years ago More than years ago Care after Diagnosis: Choosing and Understanding Cancer Treatment. Since your cancer was diagnosed, how much did a doctor or other health care professional at [NAME OF CANCER CENTER] talk with you about not actively treating your cancer as an option? A lot Some A little t at all. Since your cancer was diagnosed, how much did a doctor or other health care professional at [NAME OF CANCER CENTER] talk with you about drug therapy as an option to treat your cancer? A lot Some A little t at all 6. Since your cancer was diagnosed, how much did a doctor or other health care professional at [NAME OF CANCER CENTER] talk with you about other ways to treat your cancer? A lot Some A little t at all If t at all, go to # 7. Since your cancer was diagnosed, how much did a doctor or other health care professional at [NAME OF CANCER CENTER] talk with you about radiation therapy as an option? A lot Some A little t at all 8. Since your cancer was diagnosed, how much did a doctor or other health care professional at [NAME OF CANCER CENTER] talk with you about cancer surgery as an option? A lot Some A little t at all - -

27 Drug Therapy - Version 9. Since your cancer was diagnosed, did a doctor or other health care professional at [NAME OF CANCER CENTER] clearly explain the advantages of each choice for cancer treatment, including the treatments you did not get? 0. Since your cancer was diagnosed, did a doctor or other health care professional at [NAME OF CANCER CENTER] clearly explain the disadvantages of each choice for cancer treatment, including the treatments you did not get?. Since your cancer was diagnosed, did a doctor or other health care professional at [NAME OF CANCER CENTER] ask for your opinion about each choice of cancer treatment, including the treatments you did not get?. Since your cancer was diagnosed, did a doctor or other health professional at [NAME OF CANCER CENTER] involve you in decisions about your cancer treatment as much as you wanted? Understanding Drug Therapy and Contacting the Team As you answer the questions in this survey, think only about your experiences with your drug therapy at [NAME OF CANCER CENTER].. Since your cancer was diagnosed, did a doctor or other health care professional at [NAME OF CANCER CENTER] talk with you about the reasons you might not want to have drug therapy?. Since your cancer was diagnosed, did a doctor or other health care professional at [NAME OF CANCER CENTER] talk with you about the reasons you might want to have drug therapy?. Since your cancer was diagnosed, did a doctor or other health care professional at [NAME OF CANCER CENTER] ask for your opinion about whether or not to have drug therapy? - -

28 Drug Therapy - Version Drug therapy team refers to the doctors, nurses, therapists, technicians, and their support staff involved with your drug therapy through [NAME OF CANCER CENTER]. 6. Since it was decided that you would have drug therapy, did your drug therapy team encourage you to contact them with questions between visits? 7. Since it was decided that you would have drug therapy, did your drug therapy team tell you to call them immediately if you have certain symptoms or side effects? 8. Since it was decided that you would have drug therapy, did your drug therapy team give you clear instructions about how to contact them outside of regular office hours? 9. Since it was decided that you would have drug therapy, did your drug therapy team clearly explain how your cancer and drug therapy could affect your normal daily activities? Getting Drug Therapy As you answer the questions in this survey, think only about the doctors, nurses, therapists, technicians, and their support staff who were involved with your drug therapy through [NAME OF CANCER CENTER] during the last months. Together, these persons are called your drug therapy team in the following questions. 0. In the last months did you have an overnight hospital stay for your cancer?. In the last months, how many times did you visit the cancer center in person for an appointment with members of your drug therapy team? Do not include telephone calls, s, or overnight hospital stays for your cancer. 0 times to times 6 to 0 times or more times. In the last months, how often were your cancer center visits scheduled at times that were convenient for you? - -

29 Drug Therapy - Version Your Drug Therapy Team. In the last months, how often did your drug therapy team treat you with courtesy and respect?. In the last months, how often did your drug therapy team show respect for what you had to say?. In the last months, how often did you feel your drug therapy team really cared about you as a person? 6. In the last months, how often did your drug therapy team listen carefully to you? 7. In the last months, how often was your drug therapy team direct and straightforward when talking with you about your cancer and drug therapy? 8. In the last months, how often did your drug therapy team spend enough time with you? 9. In the last months, did your drug therapy team seem up-to-date about how to treat your type of cancer? 0. In the last months, did your drug therapy team delay your cancer treatment or a decision about your cancer treatment because they were missing test results or reports from other health professionals?. In the last months, did you get conflicting information about your care from different members of your drug therapy team? - 6 -

30 Drug Therapy - Version. In the last months, did your drug therapy team tell you what the next steps in your drug therapy would be? Tests, Treatment, and Procedures. In the last months, did you have blood tests, x-rays, scans, or other procedures as part of your cancer treatment? Do not include drug therapy. If, go to #6. How often were the blood tests, x-rays, scans, or other procedures scheduled to be done as soon as you thought you needed? Do not include drug therapy.. In the last months, how often did you have to wait longer for your test results than you expected? 6. Drug therapy team refers to the doctors, nurses, therapists, technicians, and their support staff involved with treating your cancer through [NAME OF CANCER CENTER]. In the last months, how often did your drug therapy team explain test results in a way that was easy to understand? 7. In the last months, did your drug therapy team prescribe medicine that you had not taken before? If, go to #9 8. In the last months, did your drug therapy team explain what that medicine was for in a way that was easy to understand? 9. In the last months, did you and your drug therapy team talk about pain related to your cancer or drug therapy? 0. In the last months, were you bothered by pain from your cancer or drug therapy? If, go to # - 7 -

31 Drug Therapy - Version. In the last months, did your drug therapy team advise you about or help you deal with this pain? 7. In the last months, did your drug therapy team advise you about or help you deal with these emotional problems?. In the last months, did you and your drug therapy team talk about any changes in your energy levels related to your cancer or drug therapy?. In the last months, were you bothered by changes in your energy level related to your cancer or drug therapy? If, go to #. In the last months, did your drug therapy team advise you about or help you deal with these changes in your energy levels?. In the last months, did you and your drug therapy team talk about any emotional problems, such as anxiety or depression, related to your cancer or drug therapy? 8. In the last months, did you and your drug therapy team talk about additional services to manage your cancer care at home, such as home health care, special medical equipment, or special supplies? 9. In the last months, did you need additional services to manage your cancer care at home, such as home health care, special medical equipment, or special supplies? If, go to # 0. Did you need help arranging for these additional services? If, go to #. Did your drug therapy team help arrange for these additional services? 6. In the last months, were you bothered by any emotional problems, such as anxiety or depression, related to your cancer or drug therapy? If, go to #8-8 -

32 Drug Therapy - Version. In the last months, did you and your drug therapy team talk about things you can do to maintain your health during cancer treatment such as what to eat and what exercises to do? Family and Caregivers. In the last months, were any family members or close friends present during discussions with your drug therapy team about your cancer or cancer care? If, go to #. In the last months, did your drug therapy team involve your family members or close friends in discussions as much as you wanted? 6. In the last months, how often did your drug therapy team provide an interpreter? Overall Rating 7. Using any number from 0 to 0, where 0 is the worst drug therapy team possible and 0 is the best drug therapy team possible, what number would you use to rate your drug therapy team over the last months? 0 Worst drug therapy team possible Best drug therapy team possible Language Interpreter Services. An interpreter is a person who repeats what someone says in a language used by another person; for example Spanish, Russian, Chinese, or American Sign Language. In the last months, did you want your drug therapy team to provide an interpreter to help you speak with your drug therapy team? If, go to #7-9 -

33 Drug Therapy - Version About You 8. What types of cancer treatments or services have you had from [NAME OF CANCER CENTER]? Diagnosis of your cancer, which involves determining if you have cancer. Planning of your treatment by surgeons, radiologists, or medical oncologists working together to review your case. Surgery to treat your cancer. Radiation therapy, which uses high-energy radiation like x- rays or radioactive implants to treat cancer and shrink tumors. Drug therapy, which uses medicine to treat cancer. Examples include chemotherapy, hormonal therapy, or immunotherapy. active treatment or waiting and watching to see if treatment for your cancer is needed. 9. How do you prefer to make decisions about your cancer treatment? You prefer to mainly make the decisions You prefer for you and your doctor to make the decisions together You prefer for your doctor to mainly make the decisions 60. In the last months, did you get health care or more times for a condition or problem? Do not include cancer, pregnancy, or menopause. If, go to #6 6. Is this a condition or problem that has lasted for at least months? 6. Do you now need or take medicine prescribed by a doctor? Do not include birth control or a medicine for cancer. If, go to #6 6. Is this medicine to treat a condition that has lasted for at least months? Do not include cancer, pregnancy, or menopause. 6. In general, how would you rate your overall health? Excellent Very good Good Fair Poor 6. In general, how would you rate your overall mental or emotional health? Excellent Very good Good Fair Poor - 0 -

34 Drug Therapy - Version 66. What kind of health insurance or health care coverage do you have? Include those that pay for only one type of service (nursing home care, accidents, or dental care). Exclude private plans that only provide extra cash while hospitalized. 67. What is your age? Private health insurance, such as Kaiser Permanente or Blue Cross Blue Shield Medicare MediGap Medicaid CHIP, the Children's Health Insurance Program, or SCHIP Military health care, such as TRICARE, VA, or CHAMP-VA Indian Health Service State-sponsored health plan Other government program Single service plan, such as dental, vision, prescriptions coverage of any type Other, please specify 8 to 0 to to to to to 6 6 to 7 7 or older 69. What is the highest grade or level of school that you have completed? 6 8th grade or less Some high school, but did not graduate High school graduate or GED Some college or -year degree -year college graduate More than -year college degree 70. Are you of Hispanic or Latino origin or descent?, Hispanic or Latino, t Hispanic or Latino 7. What is your race? Please mark one or more. 6 White Black or African American Asian Native Hawaiian or Other Pacific Islander American Indian or Alaska Native Other 7. Did someone help you complete this survey? Thank you. Please return the completed survey in the postage-paid envelope. 68. Are you male or female? Male Female - -

35 Drug Therapy - Version 7. How did that person help you? Mark all that apply. Read the questions to me Wrote down the answers I gave Answered the questions for me Translated the questions into my language Helped in some other way Please print: Thank you. Please return the completed survey in the postage-paid envelope. - -

36 Form Approved OMB Exp. Date 0//0 CAHPS for Cancer Care Survey Public reporting burden for this collection of information is estimated to average 0 minutes per response, the estimated time required to complete the survey. An agency may not conduct or sponsor, and a person is not required to respond to, a collection of information unless it displays a currently valid OMB control number. Send comments regarding this burden estimate or any other aspect of this collection of information, including suggestions for reducing this burden, to: AHRQ Reports Clearance Officer Attention: PRA, Paperwork Reduction Project (09-0) AHRQ, 0 Gaither Road, Room # 06, Rockville, MD 080. Pending Approval by the Agency for Healthcare Research and Quality - -