ACCESS. Assessment of Cancer Care and Satisfaction

Transcription

1 ACCESS Assessment of Cancer Care and Satisfaction Wisconsin s Survey of Cancer Treatment, Barriers to Care, and Patient Satisfaction Summary of Results October 2008

2 Summary Results October 2008 ACCESS: Assessment of Cancer Care and Satisfaction Summary of Results This publication was prepared by: Amy Trentham-Dietz, PhD Matthew C. Walsh, MPH Paul P. Carbone Comprehensive Cancer Center University of Wisconsin 610 Walnut St, WARF Building Room 307 Madison, WI Fax: Suggested citation for this report: Trentham-Dietz A, Walsh MC. ACCESS: Assessment of Cancer Care and Satisfaction. Summary of Results. Madison, WI: University of Wisconsin Paul P. Carbone Comprehensive Cancer Center, Copyright information: All material in this report is in the public domain and may be reproduced or copied without permission; citation as to source, however, is appreciated. 3

3 ACCESS: Assessment of Cancer Care and Satisfaction Acknowledgements The ACCESS study was supported through funds provided by the UW Paul P. Carbone Comprehensive Cancer Center, the Wisconsin Division of Public Health, and the Wisconsin Partnership Fund for a Healthy Future. This study was designed by a multidisciplinary group of health care providers, researchers, advocates, and public health practitioners committed to reducing the burden of cancer in Wisconsin. We are grateful for the contributions of the following individuals and institutions: Affinity Health System Morgan Barrett, MD Gundersen Lutheran Hospitals & Clinics Kurt Oettel, MD Marshfield Clinic Douglas Reding, MD, FACP, MPH Medical College of Wisconsin Bruce Campbell, MD, FACS B. Alex Matthews, PhD Patient Advocate Sue Joy-Sobota St. Joseph s Regional Medical Center Ione Miedema, RN University of Wisconsin Paul P. Carbone Comprehensive Cancer Center Mary Baliker James Cleary, MD Amy Conlon, MPH Nancy Freeman, CHES Martha Gaines, JD, LLM John Hampton, MS Sara Karon, PhD Stephanie Kaufman, MS Julie McGregor Patrick Remington, MD, MPH Jeanne Strickland, MA Amy Trentham-Dietz, PhD Matthew Walsh, MPH Wheaton Franciscan Healthcare Cathy Pawlak Wisconsin Department of Health Services Mary Foote, MS Laura Stephenson Mark Wegner, MD, MPH 4

4 Summary Results October 2008 Table of Contents Acknowledgements Table of Contents Executive Summary Tables Figures Introduction and Background Primary Objectives Methods Case Identification Data Collection Project Timeline Chapter One Treatment Options and Barriers to Care Chapter Two Patient Satisfaction with Cancer Care Chapter Three otal Symptom Management T and Quality of Life References

5 ACCESS: Assessment of Cancer Care and Satisfaction Executive Summary The Assessment of Cancer Care and Satisfaction (ACCESS) study was initiated to address the priorities identified in Wisconsin s Comprehensive Cancer Control Plan for A total of 1,839 cancer patients participated in the ACCESS study during All study participants were Wisconsin residents diagnosed with breast, colorectal, lung or prostate cancer in Results addressing the primary study objectives are summarized here: About 8% of study participants reported receiving cancer treatment as part of a clinical trial. Most participants (64%) reported that they were not told about clinical trials as an option to receive treatment for their cancer. Progress towards developing improved cancer therapies could likely accelerate if cancer patients could be more effectively recruited to participate in cancer clinical trials. About 4% of participants reported difficulties with health insurance for cancer treatment, including a lack of adequate insurance or refusal by an insurance company to provide coverage. This percentage varied greatly between cancer patients with greater education or income (<1%) compared to patients with less education or income (5-9%). Health literacy barriers were reported by substantial proportions of cancer patients 2 to 47% depending on socioeconomic status and call for innovative solutions, such as patient navigator programs, to address these disparities. The majority of study participants reported their satisfaction with cancer care as good or excellent. Satisfaction was greatest among patients: who participated in shared treatment decisions with the medical staff; whose family was included in treatment decision making; who encountered fewer travel, insurance, and literacy barriers to receiving cancer care; who did not experience unexpected side effects of treatment; and whose worries and fears were addressed by the treatment staff. Most factors related to lower satisfaction with cancer care identified by study participants are modifiable, offering several avenues to improve the cancer treatment experience. Even though side effects of cancer therapy were commonly reported by study participants, less than half of participants were able to obtain adequate relief. Two aspects of symptom management coordinating care and addressing patient worries and fears were more likely to occur if the patient did not experience difficulties related to health insurance, literacy, and shared decision making. Patients with lower household income, less education, non-white race, and older age were less likely to report that their worries and fears were addressed by the treatment staff. Both mental health and physical health are impacted by a cancer diagnosis, so high quality care must treat the complete patient. This report provides a provocative but initial summary of the ACCESS study data. More in-depth analyses will be forthcoming. For more information, please contact Amy Trentham-Dietz, PhD, at 610 Walnut St, WARF Room 307, Madison, WI 53726; tel ; trentham@wisc.edu. 6

6 Summary Results October 2008 Tables Table 1: ACCESS Study Participation Table 2: Prevalence of self-reported cancer treatments for breast, colorectal, lung and prostate cancer patients, Wisconsin, Table 3: Top 12 types of complementary and alternative therapies reported by cancer patients, Wisconsin, Table 4: Distribution of physician specialties that were primarily responsible for cancer patient care, Wisconsin, Table 5: Self-reported barriers to treatment for combined breast, colorectal, lung and prostate cancer patients by education, Wisconsin, Table 6: Self-reported barriers to treatment for combined breast, colorectal, lung and prostate cancer patients by annual household income, Wisconsin, Table 7: Self-reported barriers to treatment for breast, colorectal, lung and prostate cancer patients by cancer site, Wisconsin, Table 8: Decision-making process by geographical location of cancer patients, Wisconsin, Table 9: Health literacy for combined breast, colorectal, lung and prostate cancer patients by education, Wisconsin, Table 10: Health literacy for combined breast, colorectal, lung and prostate cancer patients by annual household income, Wisconsin, Table 11: Health literacy for combined breast, colorectal, lung and prostate cancer patients by cancer site, Wisconsin, Table 12: Average number of information sources used to obtain information by education, income, and type of cancer, Wisconsin, Table 13: Satisfaction with care for cancer patients by cancer type, Wisconsin, Table 14: Satisfaction with care according to the decision-making process for most cancer treatments, Wisconsin, Table 15: Percent of cancer patients indicating low satisfaction with care for the 29 FACIT-TS-PS questions, Wisconsin, Table 16: Satisfaction with care according to treatment barriers, care received, and self-reported health, Wisconsin, Table 17: Percent of respondents who reported that the treatment staff coordinated care to manage symptoms according to other treatment-related characteristics, Wisconsin, Table 18: Percent of respondents who reported that the treatment staff addressed their worries and fears according to other treatment-related characteristics, Wisconsin,

7 ACCESS: Assessment of Cancer Care and Satisfaction Figures Figure 1: Estimated percentage and number of new cancer cases in Wisconsin, Figure 2: Specialties of physicians consulted for cancer-related issues including treatment, relief of symptoms, and follow-up by cancer site, Wisconsin, Figure 3: Percent of patients involved in clinical trials by cancer type, Wisconsin, Figure 4: Reasons given for not receiving treatment in a clinical trial (CT), Wisconsin, Figure 5: Variations in treatments and transportation barriers by geographic location in Wisconsin, Figure 6: Top eight sources used to obtain information and influence treatment decisions, Wisconsin, Figure 7: Reported symptoms by the top three reported treatment modalities for breast cancer, Wisconsin, Figure 8: Reported symptoms by the top three reported treatment modalities for colorectal cancer, Wisconsin, Figure 9: Reported symptoms by the top three reported treatment modalities for lung cancer, Wisconsin, Figure 10: Reported symptoms by the top three reported treatment modalities for prostate cancer, Wisconsin, Figure 11: Symptom management: Among those that reported having symptoms, the percent of patients that informed their treatment staff, got help from their treatment staff, and got adequate relief of symptoms, Wisconsin, Figure 12: Percent of respondents reporting that their worries and fears were addressed by the treatment staff according to income, educational attainment, race, and age, Wisconsin,

8 Summary Results October 2008 Introduction and Background Attention is increasingly being paid to the assessment of patient satisfaction with medical care. Satisfaction with care has been shown to be associated with health-related quality of life and psychosocial function among cancer patients.[1, 2] According to one study, a minority of cancer patients are satisfied with the provision of information concerning their disease, treatment, and symptom control.[2] Health care providers face considerable challenges to address the complex issues surrounding cancer patients. Relatively little information is available to indicate the extent to which cancer patients are satisfied with the quality of care they receive. In 2005, a steering committee of 37 individuals representing over 100 public, private, for- and non-profit, local and statewide organizations jointly developed the Wisconsin Comprehensive Cancer Control Plan [3] This five-year plan describes integrated and coordinated approaches to reducing cancer incidence, morbidity and mortality through prevention, early detection, treatment, and palliation. The plan highlights the need to assemble data on the economic, geographic, and cultural barriers in accessing treatment as well as the information concerning quality of life. The plan also identified as a priority the need to increase participation in cancer clinical trials. The Assessment of Cancer CarE and SatiSfaction (ACCESS) study formed one activity of the implementation of the Wisconsin Comprehensive Cancer Control Plan. The ACCESS study was jointly supported by the UW Paul P Carbone Comprehensive Cancer Center, the Wisconsin Division of Public Health, and the Wisconsin Partnership Fund for a Healthy Future. The overall purpose of this study was to assess cancer patients experiences of their care, particularly with regard to satisfaction with care. Participants in the ACCESS study were Wisconsin residents diagnosed with breast, colorectal, lung, and prostate cancer in These four cancer types constitute 55% of all cancers that are diagnosed in Wisconsin each year (figure 1). One purpose of the ACCESS study was to develop long-term data measurement parameters for the comprehensive cancer control planning efforts and to ultimately support improvements in the cancer care patients receive in Wisconsin. The ACCESS study results will serve as pilot data for future research into the determinants of quality of cancer care. Female Breast 15% (n=4,000) Prostate 17% (n=4,460) Lung and Bronchus 12% (n=3,040) Colon and Rectum 10% (n=2,770) Other 27% (n=7,010) Melanoma 5% (n=1,270) Urinary Bladder 5% (n=1,270) Non-Hodgkin Lymphoma 3% (n=870) Source: American Cancer Society, Inc., Surveillance Research 2006 Uterine Cervix 0.4% (n=100) Leukemia 3% (n=770) Uterine Corpus 3% (n=840) Figure 1: Estimated percentage and number of new cancer cases in Wisconsin,

9 ACCESS: Assessment of Cancer Care and Satisfaction Primary Objectives Using the Wisconsin Comprehensive Cancer Control Plan as a guide, an ACCESS planning committee designed the ACCESS study to address the following objectives: 1. Determine the treatment options that were recommended to and used by cancer patients as well as barriers to receiving treatments. A Determine whether patients were offered participation in clinical trials. B Determine whether patients encountered barriers (age, race, cost, insurance, and distance) to treatment. 2. Measure patient satisfaction regarding: A the cancer care they received, and B the decision-making process surrounding cancer treatment. 3. Assess patient quality of life. A Determine whether total symptom management was addressed during the course of care. B Determine whether patients encountered barriers to achieving total symptom management. Methods Case Identification Wisconsin residents aged years, newly diagnosed in 2004 with invasive breast, colorectal, prostate, or lung cancers, and reported to the Wisconsin Cancer Reporting System were eligible for the ACCESS study. The Wisconsin Cancer Reporting System (WCRS) is housed in the Bureau of Health Information and Policy, Division of Public Health, Department of Health Services. The WCRS was established in 1976 to collect cancer incidence data on Wisconsin residents as mandated by chapter , Wisconsin Statutes. Eligibility was limited to case subjects with valid addresses who were living at the time of first contact. Lung cancer case eligibility required a publicly available telephone number in addition to a valid address. To increase minority representation in the sample, all non-white and/or Hispanic cancer patients diagnosed during the study s eligibility timeframe were approached for participation. A random sample of non-hispanic white patients was selected from the WCRS database for the study based on cancer-specific survival rates and the target sample size. A total of 2,715 patients were selected for the study and 1,839 (67.7%) completed the survey. Participation varied slightly across case groups (table 1). Breast, prostate, and colorectal cancer respondents received the study survey by mail on average 21.4 months (range ) after their cancer diagnosis. Lung cancer respondents received the study survey on average 26.4 months (range ) after their cancer diagnosis. Family members of deceased lung cancer patients were asked to complete an alternate questionnaire regarding the impact of the lung cancer patient s diagnosis and death; results of this parallel study will be described in a separate report. Table 1: ACCESS Study Participation Breast Prostate Colorectal Lung Total Selected for participation ,940 Deceased Ineligible Total eligible ,715 Completed by mail (%) 561 (93%) 512 (92%) 500 (94%) 113 (73%) 1,685 (92%) Completed by phone (%) 41 (7%) 43 (8%) 30 (6%) 41 (27%) 155 (8%) Completed total ,841 Response rate 72.5% 70.5% 62.4% 61.8% 67.8% 10

10 Summary Results October 2008 Data Collection Subjects were approached for participation between May 2006 and April Mailed packets included a survey with a cover letter, a study participant information sheet, and a book of U.S. postage stamps that served as an incentive (value: $7.80). The cover letter and information sheet described the purpose of the study using language approved by the Health Sciences Institutional Review Board of the University of Wisconsin-Madison. Mailings followed Dillman s total design method.[4] One week following the initial mailing, a postcard reminder was mailed to all subjects. At three weeks, a cover letter, a second (identical) questionnaire, and study information sheet were sent to non-respondents and, at five weeks, telephone calls were made to the remaining potential study participants. Trained interviewers offered non-responders the opportunity to complete the survey over the telephone. Due to the poor prognosis after a cancer diagnosis, lung cancer patients were approached with modified methods. Lung cancer patients were first mailed an introductory letter without the survey. After one week, an interviewer called the patient to verify that the letter was received. Upon verification that the patient was living, the survey and other study materials were mailed to the lung cancer patients as described above. Of the 159 lung cancer patients that consented over the telephone to receive the survey, 154 (97%) participated. The study survey included questions regarding cancer treatments, perceived symptom management and coordination of care, barriers to receiving care, comorbid health conditions, and demographic factors. The study survey also included questions from the Functional Assessment of Cancer Therapy (FACT) quality of life measurement tool and the Functional Assessment of Chronic Illness Therapy - Treatment Satisfaction - Patient Satisfaction (FACIT-TS-PS) instrument.[5] The FACT quality of life measurement system contains a core set of 27 general health questions called FACT-G.[6] Subscales for the FACT-G include a physical well-being scale, a social well-being scale, and a functional well-being scale, each consisting of 7 questions, and an emotional well-being scale consisting of 6 questions. Each survey also included a one-page set of cancer site-specific quality of life questions.[6-10] The FACIT-TS-PS includes a total of 32 questions and 7 subscales addressing explanations (4 questions), interpersonal experiences (3 questions), comprehensive care (7 questions), technical quality of care (3 questions), decision making (5 questions), nursing care (3 questions), and trust (4 questions).[5] The FACIT-TS-PS ended with 3 questions regarding overall satisfaction. The ACCESS survey instrument required minutes to complete. Treatment staff was defined in the survey to include doctors, nurses, medical assistants, and social workers. Cancer treatment was defined for the respondents to include follow-up visits and conversations with medical staff even if no therapy such as medication was prescribed. Project Timeline April 2005 Completion and publication of the Wisconsin Comprehensive Cancer Control Plan July 2005 February 2006 March 2006 May 2006 August 2006 December 2006 April 2007 July 2007 Draft protocol and study survey distributed to the planning team Institutional Review Board approval obtained Planning team conference call to discuss and approve the final survey instrument First wave of surveys mailed to breast, colorectal, and prostate cancer patients Final wave of surveys mailed to breast, colorectal, and prostate cancer patient First wave of lung cancer case surveys mailed Final wave of lung cancer case surveys mailed Survey data entry completed 11

11 ACCESS: Assessment of Cancer Care and Satisfaction Chapter One Treatment Options and Barriers to Care OBJECTIVE #1 Determine the treatment options that were recommended to and used by cancer patients as well as barriers to receiving treatments. A. Determine whether patients were offered participation in clinical trials. B. Determine whether patients encountered barriers (age, race, cost, insurance, and distance) to treatment. Summary According to Wisconsin s Department of Health Services, almost 500,000 Wisconsin residents lack health insurance.[11] Researchers across the United States have found that individuals without insurance receive fewer inpatient and outpatient services and are less likely to receive treatment consistent with national guidelines.[12-14] To focus on potential insurance difficulties in receiving adequate cancer care, respondents were asked if they had health insurance. Respondents also recorded the types of insurance they had, if they encountered problems due to insufficient insurance, and if an insurance company stopped providing coverage or refused to provide coverage after they were diagnosed with cancer. In addition to a lack of adequate insurance as a major barrier to receiving medical care, travel issues may also affect cancer care. Over 30% of Wisconsin residents live in rural areas and often experience restricted access to cancer care services. Lack of transportation can affect a patient s ability to obtain the proper treatment. Several questions were included in the ACCESS survey to determine if respondents encountered barriers due to transportation difficulties. To evaluate the extent to which Wisconsin patients encountered additional barriers to treatment, questions to assess literacy difficulties, educational and income barriers, and age and race discrimination were included in the ACCESS survey. Respondents were asked whether they felt that age or race restricted the treatment choices offered to them. Urbanicity was defined using the 2006 NCHS urban-rural classification scheme for counties.[15] In addition to the standard treatments (surgery, radiation, and chemotherapy), the survey requested information regarding complementary and alternative medicines, the types of physicians consulted during cancer treatment, and information sources used by patients to make medical decisions. ACCESS study results suggested that many cancer patients undergo treatments in addition to surgery, radiation, and chemotherapy. These include complementary or alternative therapies as well as treatments to prevent the recurrence of cancer. Data also indicate the importance of coordination of care as most cancer patients reported seeing multiple physicians and specialists during the course of their cancer care. An additional objective of the ACCESS study was to survey cancer patients regarding their participation in clinical trials. According to the National Cancer Institute, only 3% of U.S. adults with cancer participate in clinical trials.[16] It is estimated that 85% of cancer patients are unaware that treatment may be available through clinical trials. One study by the National Cancer Cooperative Groups reported that among clinical trial participants, 77% said they would recommend clinical trial participation to someone else with cancer. In the ACCESS survey, after a short paragraph describing clinical trials, study participants were asked if they received treatments offered through a clinical trial. Additional questions were used to explore the reasons why participants were unaware of clinical trials. Patients involved with clinical trials were asked to identify who initiated their involvement. 12

12 Summary Results October 2008 With a large number of respondents unaware of the potential to be involved with a clinical trial, more communication between patients and their treatment staff is needed to inform cancer patients of additional treatment options. These results also indicate that greater attention should be paid to patient health literacy and how health literacy affects a patient s ability to obtain information to inform decision making. Focusing on geographic location, study results suggest that the percent of respondents reporting transportation difficulties, involvement with randomized clinical trials, shared decision-making, and patients receiving chemotherapy and radiation as part of their treatment differ by region. Finally, while ACCESS participants did not report high levels of barriers to cancer care, these levels did vary by patient education and income categories. Table 2: Prevalence of self-reported cancer treatments for breast, colorectal, lung and prostate cancer patients, Wisconsin, 2004 Treatment Totals N=1839 Breast N=602 Colorectal N=529 Lung N=153 Prostate N=555 Surgery 82.9% 98.8% 93.7% 59.5% 61.9% Radiation 47.3% 72.3% 23.2% 53.0% 41.5% Chemotherapy 39.8% 50.3% 54.8% 63.6% 7.6% Complementary or Alternative Therapies 10.3% 16.7% 6.6% 8.0% 7.2% Currently Receiving Treatment 34.4% 65.4% 19.5% 29.3% 16.5% Table 3: Top 12 types of complementary and alternative therapies reported by cancer patients, Wisconsin, 2004 Type of Therapy Number (N=183) Percent Spiritual Healing/Prayer % Vitamins/Supplements % Massage % Imagery/Visualization % Relaxation/Positive Thinking % Diet and Exercise % Acupuncture % Chiropractic % Yoga % Meditation % Homeopathy 7 3.9% Stress Reduction/Reiki 6 3.3% Cancer Treatments The prevalence of self-reported cancer treatments for breast, colorectal, lung and prostate cancer patients is displayed in table 2. Over 10% of respondents reported using complementary or alternative therapies and 35% reported actively receiving treatment for cancer or for prevention of recurrence at the time of the survey. Complementary and Alternative Therapies Of patients reporting the use of complementary or alternative therapies (N=183), 130 (71%) spoke with a member of their treatment staff about the use of these alternative therapies. A summary of the top 12 reported types of complementary and alternative therapies is provided in table 3. Over 25% of cancer patients integrated spiritual healing/prayer and over 20% reported incorporating dietary supplements into their cancer treatment. Most users of complementary or alternative therapies reported more than one type of such therapy. 13

13 ACCESS: Assessment of Cancer Care and Satisfaction Cancer Care Providers Physician specialties consulted for cancer-related issues by cancer site are displayed in figure 2. Breast cancer patients reported consulting the greatest number of physician specialties (4), on average, than the other case groups. On average, lung cancer patients consulted 3 physician specialties, colorectal cancer patients reported 2 specialties, and prostate cancer patients reported 1 type of doctor. Approximately 90% of all cancer patients reported having one doctor responsible for his/her cancer care (table 4). For breast, colorectal, and lung cancer patients, this was most often a medical oncologist. Among prostate patients, 24% (n=133) indicated that an urologist was primarily responsible for his care. 100% 75% 50% 25% 0% 95% 79% 88% 57% 78% 68% 53% 28% 58% 54% 54% 52% Oncologist Surgeon Primary care doctor 32% 23% Breast 35% 14% Anesthesiologist Colorectal Lung Prostate 11% 7% 12% Other Figure 2: Specialties of physicians consulted for cancer-related issues including treatment, relief of symptoms, and follow-up by cancer site, Wisconsin, % Table 4: Distribution of physician specialties that were primarily responsible for cancer patient care, Wisconsin, 2004 Responsible Doctor Breast N=602 Colorectal N=529 Lung N=153 Prostate N=555 One doctor responsible for cancer care 91.4% 89.8% 86.3% 90.1% Medical oncologist 49.3% 42.8% 56.1% 6.2% Surgeon 13.9% 18.5% 9.9% 13.6% Surgical oncologist 9.2% 3.7% 7.6% 23.8% Radiation oncologist 7.0% 5.2% 7.6% 7.6% Primary care doctor, internist or family practice 2.6% 5.2% 9.1% 7.4% Other or not specified 15.4% 20.8% 9.9% 39.5% 14

14 Summary Results October % 80% 60% 40% 20% 0% 9% 10% 10% Breast Colorectal Lung Prostate Figure 3: Percent of patients involved in clinical trials by cancer type, Wisconsin, % 80% 60% 40% 54% 62% 66% 64% Breast 2% Colorectal Lung Prostate Clinical Trial Participation A total of 126 patients (7.5%) reported involvement with a clinical trial (figure 3). Among the cancer patients that reported no participation in clinical trials, 219 (16%) reported that they were not eligible for any clinical trials, 890 (64%) reported that they were not told about any clinical trials, 38 (3%) reported that they did not have insurance coverage for a clinical trial, and 202 (15%) reported deciding against involvement (figure 4). The top five reasons cited for choosing not to participate in a trial included feeling comfortable with standard procedures (32%), being afraid of the unknown (15%), worrying about potential side effects (13%), barriers such as travel distance and cost (12%), and confusion due to a rush to obtain treatment (7%). 20% 0% 18% 16% 13% 12% Not eligible for any CTs Not told about any CTs 3% 3% 1% 3% Insurance would not cover any CTs 18% 17% 10% 12% I chose not to particpate in any CTs Among the patients that reported involvement with clinical trials, 112 (89%) were asked by the treatment staff to participate. This varied little by cancer site. Figure 4: Reasons given for not receiving treatment in a clinical trial (CT), Wisconsin,

15 ACCESS: Assessment of Cancer Care and Satisfaction Barriers to Care Barriers to treatment for cancer were not widely reported. Lack of health insurance at the time of diagnosis was the most frequently reported barrier. While the overall percentage of patients that encountered barriers to care was low, patients with lower levels of education and income were more likely to report barriers to cancer care (tables 5-6). Age as a barrier was reported most often by lung and prostate cancer patients while not having health insurance was reported most often by colorectal cancer patients (table 7). The average travel time (one way) reported by cancer patients to the facility where most care was received was 35 minutes with a median travel time of 25 minutes. Most patients (75%) reported traveling less than 45 minutes. A travel time over 90 minutes was reported by 5% of respondents. Table 5: Self-reported barriers to treatment for combined breast, colorectal, lung and prostate cancer patients by education, Wisconsin, 2004 Barrier to cancer treatment Less than 12 Years N=212 High School N=770 Some College N=401 College Degree or More N=416 No insurance 6.2% 4.6% 1.8% 0.4% Insurance difficulties 3.4% 2.3% 0.9% 0.8% Age 5.9% 1.3% 0.9% 0.5% Travel issues 1.5% 1.8% 2.8% 0.7% Race 0.5% 0.3% 0.3% 0.2% Table 6: Self-reported barriers to treatment for combined breast, colorectal, lung and prostate cancer patients by annual household income, Wisconsin, 2004 $15K - $29K N=386 $30K - $49K N=424 $50K - $99K N=425 Barrier to cancer < $15K >$100K treatment N=206 N=170 No insurance 8.9% 5.0% 1.2% 1.4% 2.4% Insurance difficulties 3.4% 2.3% 0.9% 0.8% 0.9% Age 5.6% 4.8% 1.9% 3.3% 1.8% Travel issues 4.6% 2.7% 1.0% 0.7% 1.8% Race 0.5% 0.3% 0.5% 0.0% 0.0% * 228 patients (12%) did not self-report income Table 7: Self-reported barriers to treatment for breast, colorectal, lung and prostate cancer patients by cancer site, Wisconsin, 2004 Barrier to cancer treatment All Patients N=1839 Breast N=602 Colorectal N=529 Lung N=153 Prostate N=555 No insurance 4.0% 2.5% 5.5% 3.3% 4.2% Insurance difficulties 3.1% 5.2% 2.0% 1.3% 2.4% Age 3.6% 2.7% 2.2% 6.1% 5.1% Travel issues 1.7% 2.2% 1.6% 2.7% 1.1% Race 0.3% 0.2% 0.6% 0.7% 0.0% 16

16 Summary Results October % 40.0% 20.0% Milwaukee County Suburban or Urban County Mixed Urban/Rural County Rural County 45.4% 40.8% 38.6% 35.9% 52.8% 50.7% 45.8% 38.9% Urbanicity Overall, 1.7% of cancer patients reported transportation difficulties in accessing cancer care, but this varied by county. Higher percentages of patients from Milwaukee and rural counties reported transportation difficulties than patients from other types of counties (figure 5). 0.0% 4.0% 3.2% 0.6% 1.1% % Reporting Transportation Difficulties 3.8% 9.2% 8.1% 7.9% % Reporting Involvement with Clinical Trials % Reporting Chemotherapy as a Treatment % Reporting Radiation as a Treatment Figure 5: Variations in treatments and transportation barriers by geographic location in Wisconsin, 2004 Table 8: Decision-making process by geographical location of cancer patients, Wisconsin, 2004 Location Patient s treatment staff made most of the decisions N=312 Patient made most of the decisions N=194 Patient made most of the decisions with his/her treatment staff N=1,250 Milwaukee County 23% 15% 62% Suburban or Urban County 18% 11% 72% Mixed County 16% 10% 75% Rural County 18% 13% 69% Respondents from Milwaukee County also reported a lower percentage of involvement with clinical trials compared to respondents from the rest of the state (3.8% vs. 8.2%). However, Milwaukee respondents were most likely to report treatment with chemotherapy and radiation compared to patients in urban, mixed, and rural counties (figure 5). Shared-decision making was reported less often in rural counties (69%) and Milwaukee County (62%) compared to suburban/urban counties (72%) and mixed urban/rural counties (75%) (table 8). 17

17 ACCESS: Assessment of Cancer Care and Satisfaction Health Literacy About one-fifth of respondents reported having difficulties reading hospital materials and filling out medical forms by themselves. Many respondents also reported having problems learning about their cancer because of difficulty understanding written information and taking medications properly (table 9). Literacy difficulties appeared strongly related to socio-economic status (table 10). Over 40% of respondents with less than a high school diploma and 30% of respondents in the lowest income group reported difficulties. Even 12% of the highest socioeconomic group reported difficulties with reading hospital materials. In general, breast and prostate cancer patients reported fewer literacy difficulties than lung and colorectal cancer patients (table 11). Table 9: Health literacy for combined breast, colorectal, lung and prostate cancer patients by education, Wisconsin, 2004 Literacy Difficulty < 12 Years N=212 High School N=770 Some College N=401 College Degree or More N=416 Reading hospital materials 41.9% 25.0% 17.4% 9.9% Filling out medical forms 47.2% 21.7% 12.9% 7.2% Understanding medical condition 30.5% 13.9% 7.2% 1.7% Taking medications properly 14.3% 5.6% 5.4% 2.2% Table 10: Health literacy for combined breast, colorectal, lung and prostate cancer patients by annual household income*, Wisconsin, 2004 Literacy Difficulty Reading hospital materials Filling out medical forms Understanding medical condition Taking medications properly < $15K N=206 $15K - $29K N=386 * 228 patients (12%) did not self-report income $30K - $49K N=424 $50K - $99K N=425 > $100K N= % 26.2% 19.1% 14.9% 11.9% 35.9% 28.0% 16.1% 10.1% 5.4% 11.3% 8.0% 3.9% 2.9% 4.2% 25.4% 18.1% 9.0% 4.3% 3.0% Table 11: Health literacy for combined breast, colorectal, lung and prostate cancer patients by cancer site, Wisconsin, 2004 Literacy Difficulty Reading hospital materials Filling out medical forms Understanding medical condition Taking medications properly All Patients N=1,839 Breast N=602 Colorectal N=529 Lung N=153 Prostate N= % 17.4% 26.8% 30.1% 19.5% 19.2% 14.0% 23.1% 25.3% 19.8% 11.4% 7.7% 12.4% 19.3% 12.6% 5.9% 4.6% 6.8% 10.3% 5.4% 18

18 Summary Results October % 80% 60% 40% 20% 0% 88% 85% Treatment Staff 39% 41% Family Members Obtained information from source Information obtained from source influenced treatment decisions 30% 12% 28% 12% 23% 14% The Internet Books Friends & Coworkers 14% 8% Support Groups 13% 10% Scientific Research Reports Figure 6: Top eight sources used to obtain information and influence treatment decisions, Wisconsin, 2004 Table 12: Average number of information sources used to obtain information by education, income, and type of cancer, Wisconsin, 2004 Demographic subgroup Breast N=602 Colorectal N=529 Lung N=153 11% 3% Foundations Prostate N=555 All patients Income <$15, $15,000-$29, $30,000-$49, $50,000-$99, >$100, Education Less than High School High School Some College College Degree or More Choices for sources of information: family member, friends/co-workers, books, support groups or other people with my type of cancer, foundations or non-profit organizations, insurance companies, doctors and the rest of the treatment staff, scientific research reports, the internet, or other. Information Sources Respondents were asked to indicate the information sources they used to make decisions about their cancer treatment. Over 85% of patients indicated that the treatment staff influenced treatment decisions, and 41% of respondents indicated that family members influenced treatment decisions. Whereas approximately 30% of patients indicated that they obtained information from the internet and books, only 12% indicated that those sources influenced decisions about treatment (figure 6). Breast and prostate cancer patients reported that more information sources influenced treatment decisions than colorectal and lung cancer patients. Patients with higher education and income used more sources of information to inform treatment than patients with lower education and income (table 12). 19

19 ACCESS: Assessment of Cancer Care and Satisfaction Chapter Two Patient Satisfaction with Cancer Care OBJECTIVE #2 Measure patient satisfaction regarding: A. The cancer care they received B. The decision-making process surrounding cancer treatment Summary Receiving the best possible medical care is the hope for the estimated 28,000 Wisconsin residents who will be diagnosed with cancer this year. Defining and accessing optimal cancer care requires an evaluation of more than survival rates. Numerous outcomes and indicators are used to measure the quality of cancer care. The ratio of nurses to patients, the availability of clinical trials, and patient satisfaction are all potential measures of quality. Considerable demands are placed on health care providers to address the complex issues that are faced by cancer patients. However, relatively little information is available to indicate the extent to which cancer patients are satisfied with the quality of care they receive. Patient satisfaction refers to a patient s feelings about the care he or she receives and is generally measured by patient surveys. Patients are the best source to evaluate their interactions with medical personnel. Although satisfaction ratings cannot always gauge whether the care received was appropriate or technically sound, these ratings assist health systems administrators to measure the impact of new procedures and guide policy decisions. In the ACCESS survey, satisfaction was measured by the Functional Assessment for Chronic Illness Therapy Treatment Satisfaction Patients Satisfaction survey (FACIT-TS-PS). The FACIT-TS-PS includes 29 questions divided into seven subscales. Respondents rated the quality of health care services they received including follow-up visits and conversations with medical staff, even when no therapy was prescribed. Questionnaire items were combined into an overall measure of satisfaction expressed as a percentage (range, 0-100%), and categorized into four categories. Excellent satisfaction was defined by respondents awarding the highest level of satisfaction for all subscales. Good satisfaction required 90%, and fair required 50% of the potential maximum score. Poor was defined as a satisfaction rating under 50%. 20

20 Summary Results October 2008 To evaluate the decision-making process surrounding cancer treatment and how this process might relate to patient satisfaction, two questions were included in the ACCESS survey. One question asked the respondents to describe the decision-making process used for most of their cancer treatments, and the other question asked if members of the treatment staff made an effort to include the respondents families in important decisions. The following results suggest that quality of life and many aspects of cancer care amenable to intervention are associated with satisfaction with cancer care, including shared decision-making, anticipation of side effects, addressing the worries and fears of the patients, increased coordination of care and elimination of barriers to care. Table 13: Satisfaction with care for cancer patients by cancer type, Wisconsin, 2004 Satisfaction Totals N=1653 Breast N=568 Colorectal N=448 Lung N=139 Prostate N=498 Poor 3% 3% 4% 3% 3% Fair 27% 29% 25% 35% 23% Good 41% 42% 44% 44% 35% Excellent 30% 27% 26% 19% 40% Table 14: Satisfaction with care according to the decisionmaking process for most cancer treatments, Wisconsin, 2004 Satisfaction Treatment staff made most of the decisions N=287 Patient made most of the decisions N=167 Patient made most of the decisions with treatment staff N=1,186 Poor 12% 3% 1% Fair 40% 29% 23% Good 34% 39% 42% Excellent 14% 29% 34% Overall Patient Satisfaction Satisfaction with cancer care was evaluated for explanations by doctors, personal interactions with doctors, comprehensive care by the treatment staff, technical quality of the cancer care, decision making, satisfaction with nursing care, and trust of the treatment staff. Questionnaire items were combined into an overall measure of satisfaction and stratified into four categories (table 13). The majority of respondents described satisfaction with cancer care as excellent (30%) or good (41%) rather than fair (27%) or poor (3%). Although few cancer patients rated their satisfaction with medical care as poor, this varied by the decision-making process. Only 1% of respondents who reported they shared the decision-making with the treatment staff rated satisfaction as poor compared with 12% who reported that the treatment staff made most of the decisions (table 14). Respondents tended to report greatest satisfaction with aspects of care concerning trust and technical quality, and to report greater dissatisfaction with issues related to comprehensive care and decision making (table 15). 21

21 ACCESS: Assessment of Cancer Care and Satisfaction Table 15: Percent of cancer patients indicating low satisfaction with care for the 29 FACIT-TS-PS questions, Wisconsin, 2004 Question Area of Care % Reporting Low Satisfaction* 1. Did your doctor(s) discuss other treatments, for example, alternative medicine or new treatments? Decision-Making 28.4% 2. Did the treatment staff discuss how your health and treatment may affect you emotionally? Comprehensive Care 27.8% 3. Did the treatment staff discuss how your health and treatment may affect your personal relationships? Comprehensive Care 25.4% 4. Did the treatment staff discuss how your health and treatment may affect your normal work (including housework)? Comprehensive Care 14.0% 5. Did the treatment staff discuss how your health and treatment may affect your normal daily activities? Comprehensive Care 13.9% 6. Did your doctor(s) explain the possible side effects or risks of your treatment? Explanations 12.4% 7. Were you encouraged to participate in decisions about your health care? Decision-Making 11.5% 8. Did you have enough information to make decisions about your health care? Decision-Making 10.1% 9. Did you have enough time to make decisions about your health care? Decision-Making 8.5% 10. Were you able to talk to your doctor(s) when you needed to? Comprehensive Care 8.1% 11. Did your doctor(s) seem to understand what was important to you? Interpersonal Care 7.9% 12. Did your doctor(s) seem to respect your opinions? Decision-Making 7.6% 13. Did your doctor(s) seem to understand your needs? Comprehensive Care 6.7% 14. Did your nurse(s) give explanations that you could understand? Nursing Care 6.5% 15. Did your doctors(s) give explanations that you could understand? Explanations 6.5% 16. Did you get to say the things that were important to you? Interpersonal Care 6.3% 17. Did your nurse(s) seem to understand your needs? Nursing Care 5.9% 18. Did your doctor(s) explain the possible benefits of your treatment? Explanations 5.8% 19. Did your nurse(s) show genuine concern for you? Nursing Care 5.5% 20. Did you feel that the treatment staff answered your questions honestly? Trust 5.3% 21. Did your doctor(s) show genuine concern for you? Interpersonal Care 5.3% 22. Did you feel that the treatment staff worked together towards the same goal? Comprehensive Care 4.8% 23. Did you have an opportunity to ask questions? Explanations 4.7% 24. Did you trust your doctor s suggestions for treatment? Trust 4.4% 25. Did you have confidence in your doctor(s)? Trust 4.3% 26. Did you feel your doctor(s) knew about the latest medical developments for your illness? Technical Quality 4.3% 27. Was the treatment staff thorough in examining and treating you? Technical Quality 3.8% 28. Did you feel your doctor(s) had experience treating your illness? Technical Quality 3.1% 29. Did the treatment staff respect your privacy? Trust 2.6% * Low satisfaction reflected respondents answering either No, not at all or Yes, but not as much as I wanted ; remaining answer options included Yes, almost as much as I wanted and Yes, as much as I wanted. 22

22 Summary Results October 2008 Table 16: Satisfaction with care according to treatment barriers, care received, and self-reported health, Wisconsin, 2004* COMPREHENSIVE CARE Was an effort made to include the patient's family in important decisions? Did the patient feel that his/her worries and fears were addressed by the treatment staff? Did the patient feel that the treatment staff coordinated care in an attempt to manage all of his/her symptoms? Did the patient experience any side effects that were not expected? Barriers Did the patient report travel issues receiving cancer treatments? Did the patient report that he/she felt age restricted the choices that were offered? Did the patient report difficulties due to a lack of insurance? Overall Measure of Satisfaction Poor or Fair Good or Excellent No 58.7% 41.3% Yes 24.2% 75.8% No 51.4% 48.6% Yes 23.1% 76.9% No 68.4% 31.6% Yes 25.1% 74.9% No 23.6% 76.4% Yes 41.6% 58.4% No 29.4% 70.6% Yes 51.7% 48.3% No 28.2% 71.8% Yes 71.9% 28.1% No 29.0% 71.0% Yes 50.0% 50.0% Did the patient report problems learning about No 27.0% 73.0% his/her medical condition because of difficulty understanding written information? Yes 48.3% 51.7% Self-Rated Overall Health Self-reported current health Excellent 13.3% 86.7% Very Good 24.1% 75.9% Good 34.3% 65.7% Fair 44.5% 55.5% Poor 45.0% 55.0% * Note: Percentages in each row add to 100%. Comprehensive Care Among the patients who reported that the treatment staff made an effort to include family members in important decisions, 76% reported good or excellent satisfaction with their care. Among the patients that reported the treatment staff did not make an effort to include family members, 41% reported good or excellent satisfaction with care. Satisfaction with care was also correlated with anticipation of side effects, coordination of care, and consideration of the patient s worries and fears (table 16). Barriers Travel difficulties, age, lack of insurance, and problems understanding written medical information were correlated with patient satisfaction. For example 52% of patients who reported problems understanding written materials about their medical condition reported good or excellent satisfaction, compared to 73% of patients who do not report these problems. Self-Rated Overall Health Satisfaction with care was strongly associated with self-reported current health. Respondents who rated their health as excellent were much more likely to report good or excellent satisfaction with care (87%) than respondents who reported poor current health (55%). 23

23 ACCESS: Assessment of Cancer Care and Satisfaction Chapter Three Total Symptom Management and Quality of Life OBJECTIVE #3 Assess patient quality of life A. Determine whether total symptom management was addressed during the course of care B. Determine whether patients encountered barriers to achieving total symptom management Summary Impediments to effective symptom management can arise from different sources. Lack of insurance not only makes it difficult to obtain treatment, but to obtain services related to quality of life. Additional barriers such as lack of transportation and literacy barriers also affect a cancer patient s ability to obtain services related to quality of life. The ACCESS study surveyed cancer patients about the following symptoms: pain, shortness of breath or a bad cough, nausea or vomiting, severe tiredness or fatigue, and depression and/or anxiety. Respondents were first asked if they experienced a specific symptom during or after any of their cancer treatments. If the respondents experienced the symptom, they were then asked if they told the treatment staff about this symptom. If the respondents informed the treatment staff, they reported whether the treatment staff helped them feel better with medication or any other approach. Respondents answered additional questions about memory or concentration problems, unexpected side effects, emotional concerns, and quality of life. As an overall measure of the coordination of care, respondents were asked if their treatment staff coordinated care in an attempt to manage all of their symptoms. While the importance placed on specific quality of life indicators often varies between individuals, this study indicates a need for a better understanding of why some patients do not experience total symptom management. Results also indicate respondents are more likely to report that the treatment staff did not coordinate care in an attempt to manage all symptoms if they experienced barriers to cancer care, unexpected side effects, or low satisfaction with care. Communication problems appear to correlate with poor symptom management. Finally, respondents were more likely to report that the treatment staff addressed their worries and fears if they were younger, more educated, had a higher income, felt they were involved with the decision-making process, had health insurance, were satisfied with the health care they received, and reported higher quality of life. 24