Patient Experiences with Outpatient Cancer Care in British Columbia, January 2014 Charlyn Black MD ScD Dawn Mooney MPH Sandra Peterson MSc
Patient Experiences with Outpatient Cancer Care in British Columbia, was produced by: Centre for Health Services and Policy Research University of British Columbia 201 2206 East Mall Vancouver, V6T 1Z3 Phone: 604-822-4969 Email: enquire@chspr.ubc.ca You can download this publication from www.chspr.ubc.ca
U B C c e n t r e f o r h e a lt h s e r v i c e s a n d p o l i c y r e s e a r c h Contents 2 List of tables and figures 4 About CHSPR 5 Acknowledgments 6 Executive Summary 6 About this survey 6 Findings 7 Introduction 7 The importance of understanding patient experience 7 Approaches to understanding patient experience in 8 s and outpatient cancer care surveys 10 The Canadian benchmarks 11 About this report 12 1. What did we learn? Findings from 12 1.1 Characteristics of patients who responded to the survey 16 1.2 Overall evaluations of care 21 1.3 Evaluations of individual patient-centred dimensions of care 29 1.4 Areas of strength reported by patients 30 1.5 Areas for improvement reported by patients 31 2. How have patient experiences changed since? 31 2.1 Approaches to comparing and survey responses 32 2.2 Overall evaluations of care, vs. 33 2.3 Overall evaluations based on combined dimensions of care, vs. 34 2.4 Dimension scores vs. 35 2.5 Areas of strength, vs. 36 2.5 Areas for improvement, vs. 37 Discussion and conclusions 41 References 42 Appendix 1: Participating facilities by peer group 1
P a t i e n t E x p e r i e n c e s w i t h o u t p a t i e n t c a n c e r c a r e i n b r i t i s h c o l u m b i a, 2 0 1 2 / 1 3 List of tables and figures 12 Table 1: Number and percent of respondents or patients, by age, sex, ethnicity, and type of cancer 13 Table 2: Number and percent of respondents or patients, by type and location of care 14 Figure 1: Health status among patients receiving outpatient cancer care in,, compared to Canadian benchmark 14 Figure 2: Emotional health among patients receiving outpatient cancer care in, 15 Figure 3: Amount of pain among patients receiving outpatient cancer care in,, compared to Canadian benchmark 16 Figure 4: Overall rating of outpatient cancer care in,, compared to Canadian benchmark 16 Figure 5: Overall rating of outpatient cancer care in and health authorities,, compared to Canadian benchmark 17 Figure 6: Overall rating of outpatient cancer care in,, compared to Canadian benchmark 17 Figure 7: Overall rating of outpatient cancer care in and health authorities,, compared to Canadian benchmark 18 Figure 8: Overall rating of outpatient cancer care in, 18 Figure 9: Overall rating of outpatient cancer care in and health authorities, 19 Figure 10: Overall rating of outpatient cancer care in and health authorities,, compared to Canadian benchmark 20 Figure 11: Overall rating of outpatient cancer care in,, compared to Canadian benchmark 21 Figure 12: Dimension scores in,, compared to Canadian benchmark 22 Figure 13: Dimension scores in and health authorities,, compared to Canadian benchmark 23 Figure 14: Respect for patient preferences dimension: Composite score and individual question scores in,, compared to Canadian benchmark 24 Figure 15: Access to care dimension: Composite score and individual question scores in,, compared to Canadian benchmark 25 Figure 16: Physical comfort dimension: Composite score and individual question scores in,, compared to Canadian benchmark 26 Figure 17: Coordination and continuity dimension: Composite score and individual question scores in,, compared to Canadian benchmark 27 Figure 18: Information, communication and education dimension: Composite score and individual question scores in,, compared to Canadian benchmark 28 Figure 19: Emotional support dimension: Composite score and individual question scores in,, compared to Canadian benchmark 29 Figure 20: Ten questions with highest ratings in,, compared to Canadian benchmark 2
U B C c e n t r e f o r h e a lt h s e r v i c e s a n d p o l i c y r e s e a r c h 30 Figure 21: Ten questions with lowest ratings in,, compared to Canadian benchmark 32 Figure 22: Overall rating of outpatient cancer care in, by health authority, replication group compared to 33 Figure 23: Overall rating of outpatient cancer care in, by health authority, replication group compared to 34 Figure 24: Dimension scores in, replication group compared to 35 Figure 25: Ten questions with highest ratings in, 35 replication group compared to 36 Figure 26: Ten questions with highest ratings in, replication group compared to 3
P a t i e n t E x p e r i e n c e s w i t h o u t p a t i e n t c a n c e r c a r e i n b r i t i s h c o l u m b i a, 2 0 1 2 / 1 3 About CHSPR The Centre for Health Services and Policy Research (CHSPR) is an independent research centre based in the School of Population and Public Health of the University of British Columbia. Our mission is to stimulate scientific enquiry into health system performance, equity and sustainability. Our faculty are among s leading experts in primary health care, health care funding, variations in health services utilization, health human resources, and pharmaceutical policy. We promote interdisciplinarity in our research, training, and knowledge translation activities because contemporary problems in health care systems transcend traditional academic boundaries. We are active participants in various policy-making forums and are regularly called upon to provide policy advice in British Columbia,, and abroad. We receive core funding from University of British Columbia. Our research is primarily funded through competitive, peer-reviewed grants obtained from Canadian and international funding agencies. For more information about CHSPR, please visit www.chspr.ubc.ca. 4
U B C c e n t r e f o r h e a lt h s e r v i c e s a n d p o l i c y r e s e a r c h Acknowledgments We would like to acknowledge the work of the many people and organizations that have contributed to the development of this report. First and foremost, the responses of British Columbia () residents to questionnaires asking them about their experiences in receiving outpatient care for treatment of cancer have made this report possible. This includes the more than 13,000 cancer patients who completed surveys: over 6,900 between November 2005 and May 2006, and approximately 6,300 between October 2012 and June 2013. Their contributions of time and perspective made this report possible. The Patient Reported Experience Measures Steering Committee (PREMS Committee) has been the primary leader of work to understand the experiences of residents with their health care system. Under the direction of the Deputy Minister of Health and Chief Executive Officers of the health authorities of, this committee has undertaken numerous province-wide surveys to learn and share information about the health care experiences of residents. In and again in, they undertook an Ambulatory Oncology Patient Satisfaction Survey to report on the experiences patients have with outpatient cancer care. In 2007, and again in 2013, the PREMS Steering Committee engaged the U Centre for Health Services and Policy Research to assist them in portraying the results of the two surveys. The project has benefitted from the contributions and advice of many individuals. In particular, Lena Cuthbertson, Provincial Director and Co-Chair, and Jennifer May, Project Manager, both with the PREMS Committee, provided invaluable insight and direction. Michael A. Murray PhD, an independent health services consultant, researcher, and educator, designed the sampling strategy for the survey and provided valuable input into the interpretation of results. Sandra Broughton, Regional Administrator Cancer Agency Sindi Ahluwalia Hawkins Centre for the Southern Interior, contributeded helpful comments and clarification in response to an earlier version of the report. The National Research Corporation (NRCC) collected survey data and generated reports, under contract with the PREMS Steering Committee, that form the basis of the information presented in this report. This report is intended to summarize the results of provincial and health authority reports for this sector, and is therefore descriptive in nature. It relies primarily on documents containing the results of analyses conducted by researchers and analysts at NRCC. Errors or omissions in this report may therefore reflect errors in the original collection or analysis of data. Any conclusions are those of the authors and no official endorsement by the Government of is intended or should be inferred. 5
P a t i e n t E x p e r i e n c e s w i t h o u t p a t i e n t c a n c e r c a r e i n b r i t i s h c o l u m b i a, 2 0 1 2 / 1 3 Executive Summary The purpose of this report is to describe British Columbians perceptions and reported experiences with outpatient cancer care, to compare their responses to those of other Canadians, and to determine if there have been changes in patient experiences for comparable patients who were surveyed in. This is the second report to provide descriptive information about this sector of the health care system. The first, published in 2007, described the results of the survey (6). About this survey In, the Patient Reported Experience Measures Steering Committee (PREMS Committee) has been tasked with developing a provincial approach to measure patient experience. The PREMS Committee contracted the National Research Corporation (NRCC) to collect survey data and generate reports that, in turn, form the basis of the information presented in this report. Surveys of patients were conducted using a standardized instrument, the Ambulatory Oncology Patient Satisfaction Survey. This survey tool includes standard questions to evaluate care, plus scales that have been developed to measure six dimensions of patient-centred care: respect for patient preferences; access to care; physical comfort; coordination and continuity; information, communication and education; and emotional support. In addition to questions that are used in surveys in several Canadian provinces, the survey included additional questions that were developed specifically for use in this province. Two surveys of outpatient oncology patients have been conducted in, the first in and a more recent survey, which is the focus of this report. Findings Findings from s outpatient cancer survey suggest that cancer outpatients are highly satisfied with the care that they receive, and that there is a pattern of high, and increasingly positive ratings of patient satisfaction over time. When the focus is shifted to aspects of care that more deeply reflect patient experiences, ratings of care are lower. Patients give reasonably high ratings to some aspects, including respect for patient preferences, access to care, and physical comfort. They give much lower ratings to aspects of care that reflect attention to their social and emotional needs; these include ratings for coordination and continuity; information, communication and education; and emotional support. In, only 46.7% of cancer outpatients gave positive ratings to the emotional support dimension of their care; this was an improvement from, when the score for this dimension was 45.7%. The results of this survey suggest patterns of overall stability, with improvement in several areas since. While there have been declines in some aspects, improvement has occurred in some of the areas of greatest weakness. Results for the survey suggest that cancer outpatients give slightly, but consistently, lower ratings of their care in comparison to a Canadian benchmark that includes cancer patients in other provinces. These patterns may reflect slightly lower ratings among cancer outpatients. Alternatively, they may be related to differences in the composition of respondents in the survey, especially the inclusion of almost 70% of patients who received only non-iv therapy during the survey period. Further study to understand the experiences of the non-iv therapy group, as compared to other groups, would provide additional information about this issue. 6
U B C c e n t r e f o r h e a lt h s e r v i c e s a n d p o l i c y r e s e a r c h Introduction The importance of understanding patient experience In health care systems across the world, there is now widespread understanding that patients views provide essential information to guide us in achieving high quality health care. Patients offer a complementary perspective to that of clinicians, providing unique information and important insights into the humanity of care (such as dignity and respect, emotional support, privacy, meeting information needs, waiting and delays, and cleanliness of facilities). Measuring patient experience is important not only because it can facilitate care that improves clinical outcomes, but also because it represents an important outcome in its own right (1). Approaches to understanding patient experience in Over the past two decades there has been growth in the development of rigorous approaches to understanding patient experiences. Surveys of patient experience are becoming increasingly important and are now widely used to ensure and encourage improved health care delivery. Since 2003, provincewide surveys have been conducted to understand the experiences of patients in six different sectors in s health care system. The results of these surveys are intended to provide information to improve the ability of health care providers, health authorities and the provincial government to understand and respond to the needs of patients in. Perhaps more importantly, embedding the patient perspective building an understanding of patients experiences into the care that we provide is increasingly considered a hallmark of high quality cancer care. It provides a mechanism to deliver care that is respectful of, and responsive to, individual patient s preferences, needs and values (2). Most often, when patients encounter the health care system with a diagnosis of cancer, it is at a time when they face fear or uncertainty they are ill, or are facing unknown recommendations (even for wellness surveillance) that will have unknown consequences for their lives. The health care system can seem overwhelming, daunting, impersonal, and foreign. And patients are often beginning an intensive regime of interaction with the system. Understanding how the health care system responds to their needs provides critical information for health care managers and providers, governments and the public. These surveys have been led by the Patient Reported Experience Measures Steering Committee (PREMS Committee), which has been tasked with developing a provincial approach to measure patient experience and overseeing the implementation of surveys. The PREMS Committee work plan for 2012 included the outpatient cancer care sector as one of the priorities for this work and the Committee initiated the Ambulatory Oncology Patient Satisfaction Survey (AOPSS) project to measure the experiences of patients receiving cancer care on an outpatient basis.* The project strategy is designed to ensure that surveys are conducted in a scientifically rigorous, coordinated fashion across all six health authorities in. The project is guided by the Joint Ministry of Health/ Health Authority PREMS Committee, which has representation from each health authority, Providence Health Care, and the Ministry of Health. * We have chosen to refer to the set of services that do not require patients to stay overnight in a health care facility as outpatient care in this report. The Canadian survey used to assess patient experiences with outpatient cancer care is entitled the Ambulatory Oncology Patient Satisfaction Survey (AOPSS). 7
P a t i e n t E x p e r i e n c e s w i t h o u t p a t i e n t c a n c e r c a r e i n b r i t i s h c o l u m b i a, 2 0 1 2 / 1 3 Outpatient cancer care refers to care that does not require patients to stay overnight in a health care facility; for cancer care, it includes treatments such as intravenous chemotherapy and radiation therapy that are provided by cancer facilities on an outpatient basis, as well as nonintravenous therapy that patients use in their homes (e.g. pills, capsules, liquids, creams and injections) or receive in their physician s office (e.g. injections). health care facilities provide an enormous number and variety of cancer care services, both inpatient and outpatient, to cancer patients throughout the province and beyond. In addition to interactions with care providers for diagnosis, therapy, and disease management, these services include provision of radiation therapy and systemic (i.e. chemotherapy) treatments that can be delivered intravenously or in other forms such as pills, capsules, liquids and injections. While the Cancer Agency plays a primary role in the delivery and oversight of cancer services throughout the province, outpatient cancer services are provided by a large number of facilities and providers (see Appendix 1). These include the Cancer Agency Regional Cancer Centres, which provide a full range of radiation and systemic therapy (and are the only locations where cancer patients can receive radiation therapy); and community chemotherapy centres, which range from large full service hospital-based centres that deliver outpatient oral and intravenous chemotherapy together with medical and nursing support, to small community chemotherapy services that provide minimal services such as hospital pharmacies that dispense drugs to treat cancer. The Communities Oncology Network is a collaborative voluntary partnership that includes a range of community chemotherapy centres, together with the Regional Cancer Centres, with facilitation by the Cancer Agency, to support delivery of high quality cancer care to patients and their families in the communities where they live. All those involved in cancer care and treatment rely on provincial standards and guidelines established by the Agency. Given the enormous web of outpatient cancer care services provided across, the AOPSS was developed to understand outpatient cancer care through the eyes of patients. The survey is a standard patient survey that has been used internationally and elsewhere in ; it was developed by the Picker Institute and validated for use in (including ) by the National Research Corporation (NRCC). The tool and data extract methodology have been used since March 2004 in eight Canadian provinces (Alberta, British Columbia, Saskatchewan, Manitoba, Ontario, Nova Scotia, PEI, and Quebec). The survey has been conducted twice in, first in and more recently in. has used the same standardized survey tool in both cycles, with some modifications and additional questions, described below. s and outpatient cancer care surveys For both surveys, adults who received outpatient cancer care over a six month period from one of the facilities that deliver cancer services* were eligible to participate. Both surveys were restricted to patients who were over 18 years of age, were alive, had a known address, and who received active treatment during a defined six month window (in, from November 15, 2005 to May 15, 2006; in, from June 15 to December 15, 2012). * The facilities included differ slightly between and. See Appendix 1 for a list of facilities included in the surveys. 8
U B C c e n t r e f o r h e a lt h s e r v i c e s a n d p o l i c y r e s e a r c h In both and, surveys were administered using a questionnaire that was mailed to the patient s home address. Patients could respond using a paper and pencil, or a web-based version. Surveys were available in a number of different languages: English, French, Chinese and Punjabi in ; and in, in all of those languages plus German. While there was a major focus on making the two surveys comparable, a number of changes were made to the survey. These are outlined below. The survey was offered only to patients with a primary diagnosis of cancer. In, the survey was expanded to include patients who had a myeloproliferative blood disorder,* in addition to those with a primary diagnosis of cancer. The two surveys therefore differ to some degree in terms of the types of patients who were eligible to participate, with the survey including this additional group of patients. A second difference in involved the expansion of the survey to include an even larger additional group of patients, based on the type of cancer treatment they received. In, the survey was restricted to the census of patients (i.e. all patients) who received intravenous (IV) chemotherapy and/ or radiation therapy. This approach was repeated in. Once again, all patients who received IV chemotherapy and/or radiation therapy during the time of the survey were invited to participate. This subset of the survey respondents is comparable to those surveyed in (with the exception noted in the paragraph above) and to denote this similarity, is sometimes referred to as the replication group. In recent years approaches to treating cancer have shifted from a reliance on radiation therapy and/or IV chemotherapy (which must be administered in specialized facilities), to a variety of other treatments that include pills, capsules, liquids or creams, all of which can be taken at home or administered in a doctor s office. Given the cancer care system s increasing reliance on these additional approaches to treating cancer, a sample of patients who were receiving this type of outpatient treatment was added to the survey in. This additional group, referred to as those receiving only non-iv treatment modalities, is an important new group in the survey. Treatment with non-iv chemotherapeutic agents represents a significant change in the delivery of care, and this group of patients is a growing segment of the outpatient cancer treatment population. Given the fact that most of their care takes place away from cancer treatment centres, it is important to understand their experiences with care. In summary, the survey therefore contains information for patients who received three major types of treatment: radiation therapy; IV chemotherapy; and non-iv therapy. The survey instrument was itself modified in several ways. As in, the survey used the NRC Picker AOPSS. Given earlier findings of poor patient experiences in the area of emotional support, newly developed made-in- questions related to this area were added to the survey. * Myeloproliferative blood disorders, a form of cancer of the blood, are sometimes treated by an oncologist, but more often treated by a hematologist. Patients with this condition are not always told they have a cancer, in spite of the fact that they receive intravenous chemotherapy drugs dispensed by the Cancer Agency. Non-intravenous treatment refers to a variety of treatments that patients may receive for cancer, including pills, capsules, liquids or creams used at home, injections at a doctor s office, and injections that were administered by the patient or someone else in their home. 9
P a t i e n t E x p e r i e n c e s w i t h o u t p a t i e n t c a n c e r c a r e i n b r i t i s h c o l u m b i a, 2 0 1 2 / 1 3 In addition, new questions were also included for the newly added sample of patients receiving non-iv therapy. Language related to blood disorders was added to relevant questions, and additional changes were made to survey items to align with changes made in other provinces, and findings from validation studies. Where questions were added or changed, we have included them in this report with notes to interpret findings with caution, recognizing that they are not strictly comparable to the results. The survey involved a disproportional sampling scheme, with questionnaires sent to all patients receiving IV chemotherapy or radiation therapy, but to only a sample of patients receiving non-iv therapy. Overall, about 16% of all patients receiving non-iv therapy were mailed questionnaires. These patients were sampled differentially, based on facility size, resulting in large differences in sampling rates within this group. Sampling rates for the non-iv therapy patients ranged from as low as two percent in the largest regional cancer centre, to 100 percent in the 11 smallest facilities. This disproportional sampling scheme resulted in the need to use weights when conducting any analyses involving the group of non-iv therapy patients, including analyses of the overall survey results.* Using these weights adjusts the disproportional sample so that it looks like the results came from a random sample of the overall population of all outpatient cancer patients, regardless of patient subgroup (3). The Canadian benchmarks Similar surveys were conducted in seven other Canadian provinces between January 2011 and December 2012. To provide context for understanding results, comparative national benchmark scores (referred to as the Canadian benchmark) were developed for questions that were comparable across surveys from these seven other provinces, and results were tested to see if they were statistically different from these benchmark scores. A general benchmark that included results for 19,333 patients was developed for provincial and health authority comparisons (with the exception of the Provincial Health Services Authority, see below). These patients come from a range of settings: three Alberta hospitals, the Saskatchewan Cancer Agency, Cancer Care Manitoba, 21 Ontario hospitals, three Quebec hospitals, Cancer Care Nova Scotia, and the Prince Edward Island Cancer Treatment Center. In most cases, questions were identical for all patients. However, for some areas, questions related to radiation therapy were not relevant for all patients. In this case, a benchmark based on a smaller number of patients was developed; where this occurred, footnotes are included. A second comparative benchmark, the Canadian Regional Centres Average, was developed to provide relevant comparisons for patients treated at more specialized facilities that provide a full range of radiation and systemic therapy for cancer patients, such as the Cancer Agency Regional Cancer Centres; this was used to provide a comparable benchmark for patients receiving care from the Provincial Health Services Authority (PHSA), which is the health authority that runs these Regional Cancer Centres. The 11,972 * Michael A. Murray PhD developed the sampling strategy and weighting scheme for the survey. 1 0
U B C c e n t r e f o r h e a lt h s e r v i c e s a n d p o l i c y r e s e a r c h patients included in this benchmark come from organizations in two provinces: three Alberta hospitals and 21 Ontario hospitals. It should be noted that while the surveys conducted in other provinces are comparable, they differ from the approach used in in a number of ways. Differences include the frequency of conducting surveys,* whether surveys are conducted at a single point in time or over a longer time period, the type of outpatient cancer patients that are included, and the specific questions that are used. Of particular importance for comparisons is the type of patients that are included. Some provinces only survey patients seen at cancer centres, while others, like, survey patients who receive services at local hospitals. is the only province to produce survey results that have been weighted to reflect the experiences of all cancer patients receiving active treatment, including those receiving non-iv therapy. Since the composition of the Canadian benchmarks in relation to the types of care that have been included is not well understood, and since non-iv therapy patients are less likely to be represented in these benchmarks, comparisons to results must be interpreted with caution. About this report The purpose of this report is to compile a snapshot of what patients with cancer have to say about their experiences with outpatient cancer care in in. Where possible, we provide results (overall and for health authorities) in comparison to the Canadian benchmarks, which are based on results from 2011 and 2012. We also include a special section that reviews the extent to which there have been changes in reported patient experiences between and. This report relies on documents that contain the results of data analyses undertaken by the National Research Corporation, which conducted the survey. While researchers at the U Centre for Health Services and Policy Research ran some checks on the analyses, we have not conducted these analyses ourselves and cannot attest to their validity. Presentation of results In presenting the results of this work, we rely on graphical presentation of results accompanied by explanatory text. In providing results for the survey, we typically present results for overall, but in some cases we report results for subgroups, either to ensure comparability with the survey, or to focus on differences in patient experience across health authorities. When comparisons are made (for example when results are compared to those from the rest of ), we have provided information that indicates whether there are statistically significant differences at the 95 percent confidence level. Because of the very large sample sizes that form the basis of many comparisons in this report, some of the results that are statistically significant involve actual differences in results that are very small. On the other hand, some large actual differences in results do not reach statistical significance; these in turn are related to somewhat smaller sample sizes involved in some of the comparisons (for example those involving special groups of patients and issues of interest). These issues are noted in introductory text for each of the sections. In writing up results, we have focused on areas where we believe that there are important conclusions to be considered, and areas of special interest and possible concern. * Many other provinces survey more frequently than ; some provinces conduct surveys in this area every one to two years. 1 1
P a t i e n t E x p e r i e n c e s w i t h o u t p a t i e n t c a n c e r c a r e i n b r i t i s h c o l u m b i a, 2 0 1 2 / 1 3 1. What did we learn? Findings from 1.1 Characteristics of patients who responded to the survey In total, over 13,000 patients were mailed the Outpatient Cancer Care survey. A total of 6,385 individuals provided responses, for an overall response rate of 48.7%. Response rates varied by the type of cancer treatment that patients received: for the combined radiation therapy and IV chemotherapy group (i.e. the replication group ), the response rate was 48.2%; and for the newly added non-iv therapy group, it was 50.0%. These response rates were comparable to those from AOPSS surveys that took place in other Canadian provinces in 2011 and 2012, for which response rates ranged from 44.0% in Alberta, to 65.8% in Nova Scotia. Table 1: Number and percent of respondents or patients, by age, sex, ethnicity, and type of cancer # of % of cancer respondents outpatients* All categories 6,385 100.0 Age Sex Ethnicity, self-reported 18-34 years 44 0.6 35-59 years 1,539 25.6 60-75 years 3,191 45.6 76+ years 1,611 28.2 Female 3,628 63.8 Male 2,757 36.2 White 4,982 86.3 Chinese 311 5.6 South Asian 78 1.8 Aboriginal Person 93 1.1 Other 310 5.2 No response 611 -- Breast 1,614 42.5 The results presented in this section focus on describing the experiences of all cancer patients who received outpatient care, that is, the combined groups of patients receiving IV chemotherapy, radiation therapy, or both, together with the new sample of patients receiving non-iv therapy. Table 1 provides background information about the survey respondents, with the first column presenting unweighted numbers of respondents, and the second column presenting weighted percentages (i.e. they have been weighted to reflect the population of outpatient cancer patients in active treatment in ). Over 99% of outpatient cancer patients were 35 years of age or older, and over 73% were 60 years of age or older. The highest percentage of patients fell into Primary type of cancer, self-reported Prostate 911 22.0 Hematology (blood) 308 6.9 Lymphoma 463 4.3 Lung 363 4.3 Colorectal 356 3.6 Cervix/Uterus/Ovary 247 2.6 Brain 75 1.5 Bowel 105 1.3 Bladder 95 1.2 Melanoma 93 1.0 Neck 75 0.8 Stomach 42 0.6 Head 40 0.3 Kidney 30 0.9 Sarcoma 27 0.3 Testicular 3 0.0 Other 380 5.9 Don t Know 21 0.2 No response 1,137 -- * Percentages are calculated using total number of respondents to each question (i.e. non-responders have been excluded from numerator and denominator), and have been weighted to represent the entire outpatient population of cancer patients for. These results were provided in response to the question The following question will help us better understand the communities we serve. Do you consider yourself to be? Aboriginal Person (e.g., North American Indian, Metis, Inuit (Eskimo)); White; Chinese; South Asian (e.g., East Indian, Pakistani, Sri Lankan, etc.); Black; Filipino; Latin American; Southeast Asian (e.g., Vietnamese, Cambodian, Malaysian, Laotian, etc.); Arab; West Asian (e.g., Iranian, Afghan, etc.); Korean; Japanese; or Other. These results were provided in response to the question What was the primary type of cancer or blood disorder you were being treated for in the past 6 months? 1 2
U B C c e n t r e f o r h e a lt h s e r v i c e s a n d p o l i c y r e s e a r c h the age range of 60 to 75 years (45.6%), with smaller percentages in age groups 35 to 59 years (25.6%) and 76 years and older (28.2%). A much higher percentage of outpatient cancer patients were female than male (63.8% compared to 36.2%). When asked to identify their ethnicity, the largest percentage (86.3%) self-identified as white. The next largest groups included: Chinese 5.6%, South Asian 1.8%, and Aboriginal Person 1.1%. Smaller numbers of other groups self-identified; they are included in the category other and represent 5.2 percent of outpatient cancer patients. When results from respondents are weighted to reflect the results for cancer outpatients, breast (42.5%) and prostate cancer (22.0%) were reported as the most frequent types of cancer. Together these patients represent 64.5% of cancer outpatients. The new category of patients in the survey, those with myeloproliferative blood disorder, appear in the category Hematology (blood) ; they are the third largest group and represent 6.9% of cancer patients receiving outpatient care. In terms of the type of cancer therapy received (Table 2), while the vast majority of respondents (4,694) received radiation therapy and/or IV chemotherapy, when their numbers were weighted to reflect the overall outpatient cancer population, they represented only 30.8% of cancer outpatients. In contrast, when weights are applied to the 1,691 respondents who received only non-iv therapy, they represented the vast majority (69.2%) of cancer outpatients. Table 2: Number and percent of respondents or patients, by type and location of care # of % of cancer respondents outpatients* All categories 6,385 100.0 Type of cancer therapy received Health authority where cancer care received Radiation therapy &/or IV chemotherapy (i.e. replication group ) 4,694 30.8 Non-IV therapy 1,691 69.2 Interior Health 883 12.7 Fraser Health 373 4.5 Vancouver Coastal Health 583 6.7 Island Health 608 8.6 Northern Health 390 3.5 PHSA 3,548 63.9 Across the province, the majority of cancer outpatients received their care from PHSA facilities (63.9%), reflecting services provided by the Cancer Agency through regional centres in Vancouver, Vancouver Island, the Fraser Valley, Abbotsford, the Southern Interior, and the North. Interior Health provided care to the next largest group (12.7%), while Northern Health provided cancer services to the smallest percentage (3.5%) of cancer outpatients. * Percentages are calculated using total number of respondents to each question (i.e. non-responders have been excluded from numerator and denominator), and have been weighted to represent the entire outpatient population of cancer patients for. 1 3
P a t i e n t E x p e r i e n c e s w i t h o u t p a t i e n t c a n c e r c a r e i n b r i t i s h c o l u m b i a, 2 0 1 2 / 1 3 To describe other characteristics of survey respondents, information about health status, emotional status, and the amount of pain that cancer patients experience is presented below. These results are based on reports from respondents. They have been weighted to reflect responses from the entire population of cancer patients, and where possible, are presented in comparison to Canadian benchmark results. Because of the large sample sizes involved in comparisons, small differences are likely to achieve statistical significance and attention should be paid to the magnitude of differences. Results are also compared to reports from all Canadians in the 2012 Canadian Community Health Survey (CCHS). Overall, cancer patients report better health in comparison to other Canadian outpatient cancer patients (Figure 1). They were more likely to report their health as falling into a positive category (i.e. excellent, very good or good ) (78.9%) compared to their Canadian counterparts (76.1%), even though they were less likely to rate their health status as excellent. They were less likely to report their health as fair or poor. Not surprisingly, cancer patients report lower levels of health status in comparison to the general Canadian population. In the 2012 CCHS, 59.9% of Canadians reported their health as excellent or very good, in comparison to 36.5% of cancer patients and 38.0% of other Canadian cancer patients (4). In terms of self-reported emotional health (Figure 2), when positive responses (i.e. excellent, very good or good ) are combined, 86.5% of cancer patients rated their emotional health in this category. No Canadian benchmark is available for this question. AOPSS respondents were asked about the amount of pain they had in the last six months. In response, a high percentage of respondents reported having no pain over this period (Figure 3). This response was much higher for cancer outpatients than for those in other Canadian provinces. Moreover, fewer cancer patients had pain that was mild, moderate or severe in comparison to Canadian outpatient cancer patients. In comparison to the general Canadian population, cancer patients report higher levels of pain. Figure 1: Health status among patients receiving outpatient cancer care in,, compared to Canadian benchmark Figure 2: Emotional health among patients receiving outpatient cancer care in, Individual question score Rating of health status Individual question score Rating of emotional health * 28.7 28.8 42.4* 38.1 36.4* 31.2* 7.8* 9.2 16.9* 18.4 4.2* 5.5 18.9* 10.9* 2.5* Excellent Very good Good Fair Poor Excellent Very good Good Fair Poor Positive response Positive response * Statistically significant difference from the Canadian benchmark. * A Canadian benchmark is not available as this is a made-in- question added to the survey to better understand the area of emotional support. 1 4
U B C c e n t r e f o r h e a lt h s e r v i c e s a n d p o l i c y r e s e a r c h In the 2012 CCHS, 14.2% of Canadians reported pain levels as moderate or severe, in comparison to 28.6% of cancer patients and 36.2% of other Canadian cancer patients (4). Figure 3: Amount of pain among patients receiving outpatient cancer care in,, compared to Canadian benchmark Individual question score Amount of pain in last 6 months 51.5* 37.4 No pain in last 6 mos. 19.9* Mild 26.4 20.8* 24.8 Moderate 7.8* Severe * Statistically significant difference from the Canadian benchmark. 11.4 In summary, cancer outpatients report better health status and lower levels of pain when compared to patients who responded to the outpatient cancer survey in other provinces. Responses to other survey questions also indicate that patients differ from patients included in the Canadian benchmark. For example, in comparison to other Canadian respondents to the survey, cancer outpatients were more likely to have first been told of their diagnosis one or more years ago (76.8% vs. 43.3% Canadian benchmark) that is, they had been living with a cancer diagnosis for a longer period of time before responding to the survey. They were more likely to have been told of their diagnosis by a family doctor (41.5% vs. 30.1%) or cancer specialist (37.3% vs. 25.7%), and less likely to have heard this news from a surgeon (15.7% vs. 31.2%). In terms of their care patterns, patients were less likely to identify a cancer specialist as the person most involved in treatment planning (72.6% vs. 80.4%) and more likely to identify a family doctor (6.4% vs. 2.5%) or a surgeon (18.4% vs. 15.1%) as playing that role. They were more likely to have seen only one doctor in the past six months (39.2% vs. 26.4%) and less likely to have had one or more hospital stays (19.9% vs. 34.1%). The remainder of this report will focus on providing results of the survey. Section 1 presents findings for the entire set of 6,385 respondents and therefore reports on the combined experiences of those who received any of three types of cancer treatment (radiation therapy, IV chemotherapy, and non-iv therapy) across all age and sex categories. Results are presented for the outpatient cancer population overall and by the health authority from which cancer care was received. Where relevant, comparisons are made to the Canadian benchmark results. Section 2 focuses on comparing results from the and surveys. It therefore includes only the replication group from (i.e. only those respondents who received IV chemotherapy and/or radiation treatment). An additional report, to follow, will focus on issues of special interest, including the experiences of non-iv therapy patients and Aboriginal cancer patients, and understanding issues related to emotional support in greater depth. 1 5
P a t i e n t E x p e r i e n c e s w i t h o u t p a t i e n t c a n c e r c a r e i n b r i t i s h c o l u m b i a, 2 0 1 2 / 1 3 1.2 Overall evaluations of care There are many ways to report patients overall evaluations of the care they receive. Several key approaches are presented in this section, and the results are summarized at the end of the section. Overall evaluations of care based on overall rating question The first approach used an overall rating question to ask patients to think about the outpatient care in the facility where they received treatment in the preceding six months, and to rate that care as falling into one of five categories: excellent, very good, good, fair or poor. This question is regarded as a standard approach to measuring patient satisfaction. Responses from the survey s 6,385 respondents are outlined in Figure 4. Just over 58% of patients rated their outpatient care in the facility where they received treatment as excellent (58.5%), 29.6% rated it as very good, and 9.4% as good. Two percent (2.1%) rated their care as fair and 0.4% as poor. In comparison with the Canadian benchmark, there were interesting differences in the manner in which residents reported their care. In terms of positive responses, residents were slightly less likely to rate their care as excellent in comparison to other Canadians (58.5% vs. 61.0%), equally likely to rate their care as very good, and more likely to rate their care as good (9.4% vs. 8.3%). In terms of negative responses, residents were more likely to assign a rating of fair (2.1% vs. 1.6%) and equally likely to assign a rating of poor. Figure 5 presents responses to the overall rating question using a format that better facilitates comparisons and reporting over multiple jurisdictions. For this graph, overall percent positive scores were created by summing excellent, very good, and good categories. Tests for statistical differences were conducted by testing for differences from the Canadian benchmark. As a reminder, this question asks patients to think about the outpatient care in the facility where they received treatment in the preceding six months. It reports results for all patients (including those who Figure 4: Overall rating of outpatient cancer care in,, compared to Canadian benchmark Individual question score Overall quality of care in past six months Figure 5: Overall rating of outpatient cancer care in and health authorities,, compared to Canadian benchmark Individual question score Overall quality of care in past six months 58.5* 61.0 97.5* Excellent 29.6 28.7 Very good 9.4* 8.3 Good 2.1* 1.6 0.4 0.4 Fair Poor Interior Fraser Vancouver Coastal Island Northern PHSA 97.1 94.9* 97.8 96.2* 95.5* 98.0 98.0 Positive response * Statistically significant difference from the Canadian benchmark. * Statistically significant difference from the Canadian benchmark. The PHSA score is compared to a Canadian benchmark that includes only regional cancer centres. This benchmark is 98.2%, and the comparision is not statistically significant. 1 6
U B C c e n t r e f o r h e a lt h s e r v i c e s a n d p o l i c y r e s e a r c h received radiation therapy, IV chemotherapy, and non-iv therapy) who responded in. Using a test of statistical significance, overall percent positive scores were lower for patients in comparison to other Canadians, but the actual magnitude of the difference was very small (97.5% vs. 98.0%). Patients in three of s health authorities had statistically significant lower ratings in comparison to patients responding to the survey in the rest of, but again the actual magnitudes of the difference were small (Fraser Health 94.9%, Island Health 96.2%, and Northern Health 95.5% vs. 98.0% for the Canadian benchmark). Overall evaluations of care based on providers did everything question Other questions on the survey also provide additional perspective on the overall experience of patients. Responses to a question asking patients to assess whether providers did everything to treat their cancer/ blood disorder show that 85.0% of respondents replied yes, completely, while 13.5% replied yes, somewhat and only 1.5% replied no (Figure 6). These responses were different from the Canadian benchmark, with the percent of patients answering yes completely almost 5 percentage points lower. When completely positive responses are compared across and health authorities, important differences are seen (Figure 7). Percent positive responses range from 84.0% to 92.9% across health authorities, in comparison to the Canadian benchmark of 89.7%. Most health authorities have responses that are low in comparison to the Canadian benchmark. The exception is Vancouver Coastal Health, with an extremely high score of 92.9%. Figure 6: Overall rating of outpatient cancer care in,, compared to Canadian benchmark Individual question score Providers did everything to treat cancer/blood disorder 85.0* 89.7 Yes, completely Positive response 13.5* 9.2 Yes, somewhat 1.5* 1.1 * Statistically significant difference from the Canadian benchmark. Figure 7: Overall rating of outpatient cancer care in and health authorities,, compared to Canadian benchmark Individual question score Providers did everything to treat cancer/blood disorder Interior Fraser Vancouver Coastal Island Northern PHSA No 85.0* 85.2* 84.5* 92.9* 86.6* 86.4* 84.0 89.7 * Statistically significant difference from the Canadian benchmark. The PHSA score is compared to a Canadian benchmark that includes only regional cancer centres. This benchmark is 89.8%, and the comparision is statistically significant. 1 7
P a t i e n t E x p e r i e n c e s w i t h o u t p a t i e n t c a n c e r c a r e i n b r i t i s h c o l u m b i a, 2 0 1 2 / 1 3 Overall evaluations of care based on would recommend to family and friends question An additional question asked patients whether they would recommend the facility where they received care to family and friends. Note that a Canadian benchmark is not available for this question.* Responses to this question indicate that 81.6% of respondents replied yes, definitely (reported as percent positive in Figure 8), while 16.9% replied yes, probably and only 1.4% replied no. Figure 8: Overall rating of outpatient cancer care in, Individual question score Would recommend hospital to family/friends 81.6 Yes, definitely Positive response 16.9 Yes, probably When definitely positive responses are compared across and health authorities, important differences are seen (Figure 9). Percent positive responses range from 66.2% for patients in Island Health, to 87.0% for PHSA patients. There is no Canadian benchmark for comparison and statistical testing for differences has not been conducted. 1.4 No Figure 9: Overall rating of outpatient cancer care in and health authorities, Individual question score Would recommend hospital to family/friends Interior Fraser Vancouver Coastal Island Northern PHSA 81.6 69.6 67.0 80.9 66.2 75.8 87.0 Overall evaluations based on combining patient-centred dimensions of care Another way to assess patients overall views of their care is to focus on measures that have been developed to assess specific aspects of their experiences. The Picker Institute is credited with identifying dimensions of patient-centred care in a 1993 book entitled Through the Patient s Eyes: Understanding and Promoting Patient-Centered Care (5). These dimensions reflect aspects of care that are important to patients as they journey through the health care system. They bring a fundamentally different perspective than those that have been traditionally used to measure satisfaction with care, and quality of care. Over time, these aspects of care have come to be understood as critical to ensuring that health care is patient-centred, and increasingly they are becoming recognized as important aspects of quality of care in their own right. * The question in the AOPSS asks about likelihood to recommend staff at the facility where a patient received treatment in the preceding six months. In the version of the survey, the question was modified to mirror the question used in all other sector surveys, asking patients to focus on the facility where they received most of their care. Accordingly, there is not a Canadian benchmark for this question. 1 8