Patient Experiences with Outpatient Cancer Care in British Columbia, 2012/13 - January 2014
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Patient Experiences with Outpatient Cancer Care in British Columbia, 2012/13 January 2014 Charlyn Black MD ScD Dawn Mooney MPH Sandra Peterson MSc
Patient Experiences with Outpatient Cancer Care in British Columbia, 2012/13 was produced by: Centre for Health Services and Policy Research University of British Columbia 201–2206 East Mall Vancouver, BC 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 BC 8 BC’s 2005/06 and 2012/13 outpatient cancer care surveys 10 The Canadian benchmarks 11 About this report 12 1. What did we learn? Findings from 2012/13 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 BC patients 30 1.5 Areas for improvement reported by BC patients 31 2. How have patient experiences changed since 2005/06? 31 2.1 Approaches to comparing 2005/06 and 2012/13 survey responses 32 2.2 Overall evaluations of care, 2012/13 vs. 2005/06 33 2.3 Overall evaluations based on combined dimensions of care, 2012/13 vs. 2005/06 34 2.4 Dimension scores 2012/13 vs. 2005/06 35 2.5 Areas of strength, 2012/13 vs. 2005/06 36 2.5 Areas for improvement, 2012/13 vs. 2005/06 37 Discussion and conclusions 41 References 42 Appendix 1: Participating facilities by 2012/13 peer group 1
Pat i e n t E x p e r i e n c e s w i t h o u t pat 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 BC, 2012/13, compared to Canadian benchmark 14 Figure 2: Emotional health among patients receiving outpatient cancer care in BC, 2012/13 15 Figure 3: Amount of pain among patients receiving outpatient cancer care in BC, 2012/13, compared to Canadian benchmark 16 Figure 4: Overall rating of outpatient cancer care in BC, 2012/13, compared to Canadian benchmark 16 Figure 5: Overall rating of outpatient cancer care in BC and health authorities, 2012/13, compared to Canadian benchmark 17 Figure 6: Overall rating of outpatient cancer care in BC, 2012/13, compared to Canadian benchmark 17 Figure 7: Overall rating of outpatient cancer care in BC and health authorities, 2012/13, compared to Canadian benchmark 18 Figure 8: Overall rating of outpatient cancer care in BC, 2012/13 18 Figure 9: Overall rating of outpatient cancer care in BC and health authorities, 2012/13 19 Figure 10: Overall rating of outpatient cancer care in BC and health authorities, 2012/13, compared to Canadian benchmark 20 Figure 11: Overall rating of outpatient cancer care in BC, 2012/13, compared to Canadian benchmark 21 Figure 12: Dimension scores in BC, 2012/13, compared to Canadian benchmark 22 Figure 13: Dimension scores in BC and health authorities, 2012/13, compared to Canadian benchmark 23 Figure 14: Respect for patient preferences dimension: Composite score and individual question scores in BC, 2012/13, compared to Canadian benchmark 24 Figure 15: Access to care dimension: Composite score and individual question scores in BC, 2012/13, compared to Canadian benchmark 25 Figure 16: Physical comfort dimension: Composite score and individual question scores in BC, 2012/13, compared to Canadian benchmark 26 Figure 17: Coordination and continuity dimension: Composite score and individual question scores in BC, 2012/13, compared to Canadian benchmark 27 Figure 18: Information, communication and education dimension: Composite score and individual question scores in BC, 2012/13, compared to Canadian benchmark 28 Figure 19: Emotional support dimension: Composite score and individual question scores in BC, 2012/13, compared to Canadian benchmark 29 Figure 20: Ten questions with highest ratings in BC, 2012/13, 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 BC, 2012/13, compared to Canadian benchmark 32 Figure 22: Overall rating of outpatient cancer care in BC, by health authority, 2012/13 replication group compared to 2005/06 33 Figure 23: Overall rating of outpatient cancer care in BC, by health authority, 2012/13 replication group compared to 2005/06 34 Figure 24: Dimension scores in BC, 2012/13 replication group compared to 2005/06 35 Figure 25: Ten questions with highest ratings in BC, 35 2012/13 replication group compared to 2005/06 36 Figure 26: Ten questions with highest ratings in BC, 2012/13 replication group compared to 2005/06 3
Pat i e n t E x p e r i e n c e s w i t h o u t pat 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 Canada’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, Canada, 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 contrib- uted to the development of this report. First and foremost, the responses of British Columbia (BC) 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 BC Patient Reported Experience Measures Steering Committee (PREMS Committee) has been the primary leader of work to understand the experiences of BC residents with their health care system. Under the direction of the Deputy Minister of Health and Chief Executive Officers of the health authorities of BC, this committee has undertaken numerous province-wide surveys to learn and share information about the health care experiences of BC residents. In 2005/06 and again in 2012/13, they undertook an Ambulatory Oncology Patient Satisfaction Survey to report on the experiences BC patients have with outpatient cancer care. In 2007, and again in 2013, the BC PREMS Steering Committee engaged the UBC 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 BC 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 BC 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 Canada (NRCC) collected survey data and generated reports, under contract with the BC 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 BC is intended or should be inferred. 5
Pat i e n t E x p e r i e n c e s w i t h o u t pat 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 Findings Columbians’ perceptions and reported experi- Findings from BC’s outpatient cancer survey suggest ences with outpatient cancer care, to compare their that BC cancer outpatients are highly satisfied with responses to those of other Canadians, and to deter- the care that they receive, and that there is a pattern of mine if there have been changes in patient experiences high, and increasingly positive ratings of patient satis- for comparable BC patients who were surveyed in faction over time. When the focus is shifted to aspects 2005/06. This is the second report to provide of care that more deeply reflect patient experiences, descriptive information about this sector of the health ratings of care are lower. Patients give reasonably high care system. The first, published in 2007, described the ratings to some aspects, including respect for patient results of the 2005/06 survey (6). preferences, access to care, and physical comfort. They give much lower ratings to aspects of care that About this survey reflect attention to their social and emotional needs; In BC, the Patient Reported Experience Measures these include ratings for coordination and continu- Steering Committee (PREMS Committee) has been ity; information, communication and education; tasked with developing a provincial approach to and emotional support. In 2012/13, only 46.7% of measure patient experience. The PREMS Commit- BC cancer outpatients gave positive ratings to the tee contracted the National Research Corporation emotional support dimension of their care; this was Canada (NRCC) to collect survey data and generate an improvement from 2005/06, when the score for reports that, in turn, form the basis of the informa- this dimension was 45.7%. The results of this survey tion presented in this report. Surveys of patients suggest patterns of overall stability, with improvement were conducted using a standardized instrument, the in several areas since 2005/06. While there have been Ambulatory Oncology Patient Satisfaction Survey. declines in some aspects, improvement has occurred This survey tool includes standard questions to in some of the areas of greatest weakness. evaluate care, plus scales that have been developed to measure six dimensions of patient-centred care: Results for the 2012/13 survey suggest that BC cancer respect for patient preferences; access to care; physical outpatients give slightly, but consistently, lower ratings comfort; coordination and continuity; informa- of their care in comparison to a Canadian benchmark tion, communication and education; and emotional that includes cancer patients in other provinces. These support. In addition to questions that are used in patterns may reflect slightly lower ratings among BC surveys in several Canadian provinces, the BC survey cancer outpatients. Alternatively, they may be related included additional questions that were developed to differences in the composition of respondents in specifically for use in this province. Two surveys of the BC survey, especially the inclusion of almost 70% outpatient oncology patients have been conducted in of patients who received only non-IV therapy during BC, the first in 2005/06 and a more recent 2012/13 the survey period. Further study to understand the survey, which is the focus of this report. 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 Approaches to understanding patient experience patient experience in BC In health care systems across the world, there is now Over the past two decades there has been growth in widespread understanding that patients’ views provide the development of rigorous approaches to under- essential information to guide us in achieving high standing patient experiences. Surveys of patient quality health care. Patients offer a complementary experience are becoming increasingly important perspective to that of clinicians, providing unique and are now widely used to ensure and encourage information and important insights into the human- improved health care delivery. Since 2003, province- ity of care (such as dignity and respect, emotional wide surveys have been conducted to understand the support, privacy, meeting information needs, waiting experiences of patients in six different sectors in BC’s and delays, and cleanliness of facilities). Measuring health care system. The results of these surveys are patient experience is important not only because it intended to provide information to improve the ability can facilitate care that improves clinical outcomes, but of health care providers, health authorities and the also because it represents an important outcome in its provincial government to understand and respond to own right (1). the needs of patients in BC. Perhaps more importantly, ‘embedding’ the patient These surveys have been led by the BC Patient perspective—building an understanding of patients’ Reported Experience Measures Steering Committee experiences into the care that we provide—is increas- (PREMS Committee), which has been tasked with ingly considered a hallmark of high quality cancer developing a provincial approach to measure patient care. It provides a mechanism to deliver care that is experience and overseeing the implementation of respectful of, and responsive to, individual patient’s surveys. The PREMS Committee work plan for 2012 preferences, needs and values (2). included the outpatient cancer care sector as one of the priorities for this work and the Committee initi- Most often, when patients encounter the health care ated the Ambulatory Oncology Patient Satisfaction system with a diagnosis of cancer, it is at a time when Survey (AOPSS) project to measure the experiences of they face fear or uncertainty—they are ill, or are patients receiving cancer care on an outpatient basis.* facing unknown recommendations (even for wellness The project strategy is designed to ensure that surveys surveillance) that will have unknown consequences are conducted in a scientifically rigorous, coordinated for their lives. The health care system can seem over- fashion across all six health authorities in BC. The whelming, daunting, impersonal, and foreign. And project is guided by the Joint Ministry of Health/ patients are often beginning an intensive regime of Health Authority PREMS Committee, which has interaction with the system. Understanding how the representation from each health authority, Providence health care system responds to their needs provides Health Care, and the BC Ministry of Health. critical information for health care managers and providers, governments and the public. * 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
Pat i e n t E x p e r i e n c e s w i t h o u t pat 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 community chemotherapy centres, together with the that does not require patients to stay Regional Cancer Centres, with facilitation by the BC overnight in a health care facility; for Cancer Agency, to support delivery of high quality cancer care, it includes treatments such as cancer care to patients and their families in the com- intravenous chemotherapy and radiation munities where they live. All those involved in cancer therapy that are provided by cancer facilities on an outpatient basis, as well as ‘non- care and treatment rely on provincial standards and intravenous’ therapy that patients use in guidelines established by the Agency. their homes (e.g. pills, capsules, liquids, creams and injections) or receive in their Given the enormous web of outpatient cancer care physician’s office (e.g. injections). services provided across Canada, the AOPSS was developed to understand outpatient cancer care BC health care facilities provide an enormous number through the eyes of patients. The survey is a standard and variety of cancer care services, both inpatient and patient survey that has been used internationally and outpatient, to cancer patients throughout the prov- elsewhere in Canada; it was developed by the Picker ince and beyond. In addition to interactions with care Institute and validated for use in Canada (including providers for diagnosis, therapy, and disease manage- BC) by the National Research Corporation Canada ment, these services include provision of radiation (NRCC). The tool and data extract methodology therapy and systemic (i.e. chemotherapy) treatments have been used since March 2004 in eight Canadian that can be delivered intravenously or in other forms provinces (Alberta, British Columbia, Saskatchewan, such as pills, capsules, liquids and injections. While Manitoba, Ontario, Nova Scotia, PEI, and Quebec). the BC Cancer Agency plays a primary role in the The survey has been conducted twice in BC, first in delivery and oversight of cancer services throughout 2005/06 and more recently in 2012/13. BC has used the province, outpatient cancer services are provided the same standardized survey tool in both cycles, by a large number of facilities and providers (see with some modifications and additional questions, Appendix 1). These include the BC Cancer Agency described below. Regional Cancer Centres, which provide a full range of radiation and systemic therapy (and are the only BC’s 2005/06 and 2012/13 outpatient locations where BC cancer patients can receive radia- cancer care surveys tion therapy); and community chemotherapy centres, For both surveys, adults who received outpatient which range from large full service hospital-based cancer care over a six month period from one of the centres that deliver outpatient oral and intravenous BC facilities that deliver cancer services* were eligible chemotherapy together with medical and nursing to participate. Both surveys were restricted to BC support, to small community chemotherapy ser- patients who were over 18 years of age, were alive, had vices that provide minimal services such as hospital a known address, and who received active treatment pharmacies that dispense drugs to treat cancer. The during a defined six month window (in 2005/06, from Communities Oncology Network is a collabora- November 15, 2005 to May 15, 2006; in 2012/13, from tive voluntary partnership that includes a range of June 15 to December 15, 2012). * The facilities included differ slightly between 2005/06 and 2012/13. 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 2005/06 and 2012/13, surveys were admin- in the paragraph above) and to denote this similarity, istered using a questionnaire that was mailed to the is sometimes referred to as the ‘replication group’. patient’s home address. Patients could respond using a paper and pencil, or a web-based version. Surveys In recent years approaches to treating cancer have were available in a number of different languages: shifted from a reliance on radiation therapy and/or English, French, Chinese and Punjabi in 2005/06; and IV chemotherapy (which must be administered in in 2012/13, in all of those languages plus German. specialized facilities), to a variety of other treatments While there was a major focus on making the two that include pills, capsules, liquids or creams, all of surveys comparable, a number of changes were made which can be taken at home or administered in a doc- to the 2012/13 survey. These are outlined below. tor’s office. Given the cancer care system’s increasing reliance on these additional approaches to treating The 2005/06 survey was offered only to patients with cancer, a sample of patients who were receiving this a primary diagnosis of cancer. In 2012/13, the survey type of outpatient treatment was added to the survey was expanded to include patients who had a myelo- in 2012/13. This additional group, referred to as proliferative blood disorder,* in addition to those those receiving only non-IV treatment modalities,† with a primary diagnosis of cancer. The two surveys is an important new group in the 2012/13 survey. therefore differ to some degree in terms of the types Treatment with non-IV chemotherapeutic agents of patients who were eligible to participate, with the represents a significant change in the delivery of care, 2012/13 survey including this additional group and this group of patients is a growing segment of the of patients. outpatient cancer treatment population. Given the fact that most of their care takes place away from cancer A second difference in 2012/13 involved the expan- treatment centres, it is important to understand their sion of the survey to include an even larger additional experiences with care. In summary, the 2012/13 group of patients, based on the type of cancer treat- survey therefore contains information for patients ment they received. In 2005/06, the survey was who received three major types of treatment: radiation restricted to the census of patients (i.e. all patients) therapy; IV chemotherapy; and non-IV therapy. who received intravenous (IV) chemotherapy and/ or radiation therapy. This approach was repeated in The 2012/13 survey instrument was itself modified 2012/13. Once again, all patients who received IV che- in several ways. As in 2005/06, the survey used the motherapy and/or radiation therapy during the time NRC Picker Canada AOPSS. Given earlier findings of the survey were invited to participate. This subset of poor patient experiences in the area of emotional of the 2012/13 survey respondents is comparable to support, newly developed ‘made-in-BC’ questions those surveyed in 2005/06 (with the exception noted related to this area were added to the 2012/13 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 BC 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
Pat i e n t E x p e r i e n c e s w i t h o u t pat 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 Canadian benchmarks the newly added sample of patients receiving non-IV Similar surveys were conducted in seven other therapy. Language related to blood disorders was Canadian provinces between January 2011 and added to relevant questions, and additional changes December 2012. To provide context for understand- were made to 2005/06 survey items to align with ing BC results, comparative national benchmark changes made in other provinces, and findings from scores (referred to as the Canadian benchmark) were validation studies. Where questions were added or developed for questions that were comparable across changed, we have included them in this report with surveys from these seven other provinces, and BC notes to interpret findings with caution, recognizing results were tested to see if they were statistically that they are not strictly comparable to the different from these benchmark scores. A general 2005/06 results. benchmark that included results for 19,333 patients was developed for provincial and health authority The BC survey involved a disproportional sampling comparisons (with the exception of the Provincial scheme, with questionnaires sent to all patients receiv- Health Services Authority, see below). These patients ing IV chemotherapy or radiation therapy, but to come from a range of settings: three Alberta hospitals, only a sample of patients receiving non-IV therapy. the Saskatchewan Cancer Agency, Cancer Care Mani- Overall, about 16% of all patients receiving non-IV toba, 21 Ontario hospitals, three Quebec hospitals, therapy were mailed questionnaires. These patients Cancer Care Nova Scotia, and the Prince Edward were sampled differentially, based on facility size, Island Cancer Treatment Center. In most cases, ques- resulting in large differences in sampling rates within tions were identical for all patients. However, for some this group. Sampling rates for the non-IV therapy areas, questions related to radiation therapy were not patients ranged from as low as two percent in the relevant for all patients. In this case, a benchmark largest regional cancer centre, to 100 percent in the based on a smaller number of patients was developed; 11 smallest facilities. This disproportional sampling where this occurred, footnotes are included. scheme resulted in the need to use weights when con- ducting any analyses involving the group of non-IV A second comparative benchmark, the ‘Canadian therapy patients, including analyses of the BC 2012/13 Regional Centres Average’, was developed to provide overall survey results.* Using these weights adjusts relevant comparisons for patients treated at more spe- the disproportional sample so that it ‘looks’ like the cialized facilities that provide a full range of radiation results came from a random sample of the BC overall and systemic therapy for cancer patients, such as the population of all outpatient cancer patients, regardless BC Cancer Agency Regional Cancer Centres; this was of patient subgroup (3). 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 BC survey. 10
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 orga- This report relies on documents that contain the nizations in two provinces: three Alberta hospitals and results of data analyses undertaken by the National 21 Ontario hospitals. Research Corporation Canada, which conducted the survey. While researchers at the UBC Centre for It should be noted that while the surveys conducted in Health Services and Policy Research ran some checks other provinces are comparable, they differ from the on the analyses, we have not conducted these analyses approach used in BC in a number of ways. Differ- ourselves and cannot attest to their validity. ences include the frequency of conducting surveys,* whether surveys are conducted at a single point in Presentation of results time or over a longer time period, the type of out- In presenting the results of this work, we rely on patient cancer patients that are included, and the graphical presentation of results accompanied by specific questions that are used. Of particular impor- explanatory text. In providing results for the 2012/13 tance for comparisons is the type of patients that survey, we typically present results for BC overall, but are included. Some provinces only survey patients in some cases we report results for subgroups, either seen at cancer centres, while others, like BC, survey to ensure comparability with the 2005/06 survey, or patients who receive services at local hospitals. BC is to focus on differences in patient experience across the only province to produce survey results that have health authorities. When comparisons are made (for been weighted to reflect the experiences of all cancer example when BC results are compared to those from patients receiving active treatment, including those the rest of Canada), we have provided information receiving non-IV therapy. Since the composition of that indicates whether there are statistically significant the Canadian benchmarks in relation to the types of differences at the 95 percent confidence level. Because care that have been included is not well understood, of the very large sample sizes that form the basis of and since non-IV therapy patients are less likely to be many comparisons in this report, some of represented in these benchmarks, comparisons to BC the results that are statistically significant involve results must be interpreted with caution. actual differences in results that are very small. On the other hand, some large actual differences in results About this report do not reach statistical significance; these in turn are The purpose of this report is to compile a snapshot related to somewhat smaller sample sizes involved in of what patients with cancer have to say about their some of the comparisons (for example those involv- experiences with outpatient cancer care in BC in ing special groups of patients and issues of interest). 2012/13. Where possible, we provide BC results These issues are noted in introductory text for each of (overall and for health authorities) in comparison the sections. In writing up results, we have focused on to the Canadian benchmarks, which are based on areas where we believe that there are important con- results from 2011 and 2012. We also include a special clusions to be considered, and areas of special interest section that reviews the extent to which there have and possible concern. been changes in reported patient experiences between 2005/06 and 2012/13. * Many other provinces survey more frequently than BC; some provinces conduct surveys in this area every one to two years. 11
Pat i e n t E x p e r i e n c e s w i t h o u t pat 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 2012/13 1.1 Characteristics of patients who Table 1: Number and percent of respondents or patients, by age, sex, ethnicity, and type of cancer responded to the survey # of % of cancer respondents outpatients* In total, over 13,000 patients were mailed the BC Outpatient Cancer Care survey. A total of 6,385 indi- All categories 6,385 100.0 viduals provided responses, for an overall response 18-34 years 44 0.6 rate of 48.7%. Response rates varied by the type 35-59 years 1,539 25.6 Age 60-75 years 3,191 45.6 of cancer treatment that patients received: for the 76+ years 1,611 28.2 combined radiation therapy and IV chemotherapy Female 3,628 63.8 group (i.e. the ‘replication group’), the response rate Sex Male 2,757 36.2 was 48.2%; and for the newly added non-IV therapy White 4,982 86.3 group, it was 50.0%. These response rates were compa- Chinese 311 5.6 rable to those from AOPSS surveys that took place in South Asian 78 1.8 Ethnicity, other Canadian provinces in 2011 and 2012, for which self-reported† Aboriginal Person 93 1.1 response rates ranged from 44.0% in Alberta, to 65.8% Other 310 5.2 in Nova Scotia. No response 611 -- Breast 1,614 42.5 Prostate 911 22.0 The results presented in this section focus on describ- Hematology (blood) 308 6.9 ing the experiences of all BC cancer patients who Lymphoma 463 4.3 received outpatient care, that is, the combined groups Lung 363 4.3 of patients receiving IV chemotherapy, radiation Colorectal 356 3.6 therapy, or both, together with the new sample of Primary Cervix/Uterus/Ovary 247 2.6 type of cancer, patients receiving non-IV therapy. self-reported‡ Brain 75 1.5 Bowel 105 1.3 Table 1 provides background information about the Bladder 95 1.2 Melanoma 93 1.0 survey respondents, with the first column presenting Neck 75 0.8 unweighted numbers of respondents, and the second Stomach 42 0.6 column presenting weighted percentages (i.e. they Head 40 0.3 have been weighted to reflect the population of outpa- Kidney 30 0.9 tient cancer patients in active treatment in 2012/13). Sarcoma 27 0.3 Over 99% of outpatient cancer patients were 35 years Testicular 3 0.0 of age or older, and over 73% were 60 years of age Other 380 5.9 or older. The highest percentage of patients fell into 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 BC cancer patients for 2012/13. † 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?” 12
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 Table 2: Number and percent of respondents or patients, by type and location of care percentages in age groups 35 to 59 years (25.6%) and # of % of cancer respondents outpatients* 76 years and older (28.2%). A much higher percentage of outpatient cancer patients were female than male All categories 6,385 100.0 (63.8% compared to 36.2%). Radiation therapy &/or IV chemo- Type of therapy (i.e. ‘repli- 4,694 30.8 cancer cation group’) When asked to identify their ethnicity, the largest therapy received percentage (86.3%) self-identified as ‘white’. The next Non-IV therapy 1,691 69.2 largest groups included: Chinese 5.6%, South Asian Interior Health 883 12.7 1.8%, and Aboriginal Person 1.1%. Smaller numbers Fraser Health 373 4.5 of other groups self-identified; they are included in the Health Vancouver Coastal 583 6.7 authority Health category ‘other’ and represent 5.2 percent of outpatient where cancer care received Island Health 608 8.6 cancer patients. Northern Health 390 3.5 PHSA 3,548 63.9 When results from respondents are weighted to reflect the results for BC cancer outpatients, breast (42.5%) and prostate cancer (22.0%) were reported as the most Across the province, the majority of BC cancer outpa- frequent types of cancer. Together these patients rep- tients received their care from PHSA facilities (63.9%), resent 64.5% of cancer outpatients. The new category reflecting services provided by the BC Cancer Agency of patients in the 2012/13 survey, those with myelo- through regional centres in Vancouver, Vancouver proliferative blood disorder, appear in the category Island, the Fraser Valley, Abbotsford, the Southern “Hematology (blood)”; they are the third largest group Interior, and the North. Interior Health provided care and represent 6.9% of BC cancer patients receiving to the next largest group (12.7%), while Northern outpatient care. Health provided cancer services to the smallest per- centage (3.5%) of BC cancer outpatients. 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 BC outpatient cancer population, they repre- sented 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 BC 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 BC cancer patients for 2012/13. 13
Pat i e n t E x p e r i e n c e s w i t h o u t pat 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 respon- or ‘poor’. Not surprisingly, cancer patients report lower dents, information about health status, emotional levels of health status in comparison to the general status, and the amount of pain that BC cancer patients Canadian population. In the 2012 CCHS, 59.9% of experience is presented below. These results are Canadians reported their health as ‘excellent’ or ‘very based on reports from respondents. They have been good’, in comparison to 36.5% of BC cancer patients weighted to reflect responses from the entire popula- and 38.0% of other Canadian cancer patients (4). tion of BC cancer patients, and where possible, are presented in comparison to Canadian benchmark In terms of self-reported emotional health (Figure 2), results. Because of the large sample sizes involved in when positive responses (i.e. ‘excellent’, ‘very good’ comparisons, small differences are likely to achieve or ‘good’) Health are among status combined, 86.5% patients of BC cancer receiving patients outpatient cancer Overall ratin care in BC, 2012/13, compared to Canadian benchmark compared to statistical significance and attention should be paid rated their emotional health in this category. No to the magnitude of differences. Results are also Canadian benchmark is available for this question. Individual quest Individual question score Overall quality compared to reports from all Canadians in the 2012 Rating of health status Canadian Community Health Survey (CCHS). AOPSS respondents were asked aboutBCthe amount of Canada 58.5* 61.0 pain they had in the last six months. In response, a Overall, BC cancer patients report better health in 42.4* high percentage of respondents 38.1 reported having no comparison to other Canadian outpatient cancer pain over this28.7 period 28.8 (Figure 3). This response was patients (Figure 1). They were more likely to report 16.9* 18.4 much higher for BC cancer outpatients than for those 7.8* 9.2 5.5 their health as falling into a positive category (i.e. in other Canadian provinces. Moreover, fewer4.2* BC ‘excellent’, ‘very good’ or ‘good’) (78.9%) compared cancer patients Excellent Veryhad goodpain that Goodwas mild, Fairmoderate or Poor Excellent to their Canadian counterparts (76.1%), even though severe in comparison to Canadian outpatient cancer Positive response Po they were less likely to rate their health status as ‘excel- patients. In comparison to the general Canadian pop- * Statistically signi lent’. They were less likely to report their health as ‘fair’ ulation, cancer patients report higher levels of pain. * Statistically significant difference from Canadian benchmark Overall ratin Health status Figure 1: among Health statuspatients among receiving outpatient cancer patients receiving Overall Figure 2: rating of among Emotionaloutpatient cancer healthpatients among care inreceiving patients BC, 2012/13, authorities, Emotional health receiving outpatient care in BC, cancer outpatient 2012/13, compared care to Canadian in BC, 2012/13, benchmark compared to compared outpatient to Canadian cancer care inbenchmark BC, cancer care in BC, 2012/13/13 2012/13 Individual quest Canadian benchmark Individual question score Overall quality Individual question score Overall quality Individual questionofscore care in past six months Rating of health status Rating of emotional health* BC Canada 58.5* 61.0 BC Canada Vancouv 42.4* 38.1 36.4* 28.7 28.8 29.6 28.7 31.2* 16.9* 18.4 18.9* 7.8* 9.2 9.4* 8.3 10.9* 4.2* 5.5 2.1* 1.6 0.4 2.5* 0.4 * Statistically signi † The PHSA score Excellent Very good Good Fair Poor Excellent Excellent Verygood Very good Good Good Fair Fair Poor Poor centres. This bench Positive response Positive response Positive response * Statistically significant difference from Canadian benchmark Overall ratin * * Statistically Statisticallysignificant difference significant from Canadian difference from thebenchmark Canadian benchmark. * * Statistically A Canadian significant difference benchmark from is not Canadian available asbenchmark this is a ‘made-in-BC’ question compared to added to the 2012/13 survey to better understand the area of emotional Overall support. rating of outpatient cancer care in BC and health Individual quest authorities, 2012/13, compared to Canadian benchmark Providers did Emotional health among patients receiving outpatient Amount of pain among patients receiving outpatient cancer 14 care in BC, 2012/13/13 cancer care Individual in BC, question 2012/13, compared to Canadian benchmark score Overall quality of care in past six months 8 85.0* Individual question score Individual question scoreBC * 97.5*
Interior 97.1 Fraser 94.9* Vancouver Coastal 97.8 U B C c e n t r e f o r h e a lt hIsland services and policy research 96.2* 36.4* Northern 95.5* 31.2* PHSA 98.0† 18.9* Canada 98.0 10.9* 2.5* * Statistically significant difference from Canadian benchmark † The PHSA score is better compared to a Canadian benchmark that includes only regional Excellent Very good Good Fair Poor centres. This benchmark is In the 2012 CCHS, 14.2% of Canadians reported pain specialist as the person most involved in treatment levels as ‘moderate’ or ‘severe’, in comparison to 28.6% Positive response planning (72.6% vs. 80.4%) and more likely to identify of BC cancer patients and 36.2% of other Canadian aOverall rating of family doctor outpatient (6.4% cancer vs. 2.5%) or a care in BC, surgeon 2012/13, (18.4% * Statistically significant difference from Canadian benchmark compared to Canadian benchmark cancer patients (4). vs. 15.1%) as playing that role. They were more likely Individual question score toProviders have seen only one to did everything doctor in the past disorder treat cancer/blood six months Amount Figure 3: of pain among Amount of painpatients among receiving outpatient patients receiving cancer carecancer in BC, care 2012/13, compared (39.2% vs. 26.4%) and less likely to have had one or outpatient in BC, 2012/13,tocompared Canadiantobenchmark Canadian benchmark more hospital 89.7stays (19.9% vs. 34.1%). 85.0* Individual question score BC Canada Amount of pain in last 6 months The remainder of this report will focus on provid- BC Canada ing results of the 2012/13 survey. Section 1 presents 51.5* findings for the entire set of 6,385 respondents and 37.4 therefore reports on the combined experiences of 26.4 19.9* 20.8* 24.8 those who received any of three types of cancer 13.5* 9.2 7.8* 11.4 treatment (radiation therapy, IV chemotherapy, 1.5* and 1.1 non-IV therapy) across Yes, completely all age and sex categories. Yes, somewhat No No pain in Mild Moderate Severe last 6 mos. Results are presented for the outpatient cancer popu- lation overall Positive and by the health authority from which response * Statistically significant difference from Canadian benchmark * Statistically significant difference from the Canadian benchmark. cancer care was received. Where relevant, compari- * Statistically significant difference from Canadian benchmark sons are made to the Canadian benchmark results. In summary, BC cancer outpatients report better Overall rating of outpatient cancer care in BC and health Section 2 focuses authorities, on comparing 2012/13, results compared to frombenchmark Canadian the health status and lower levels of pain when compared 2005/06 and 2012/13 surveys. It therefore includes to patients who responded to the outpatient cancer Individual question score only the ‘replication Providers did everythinggroup’ to treatfrom 2012/13disorder cancer/blood (i.e. only survey in other provinces. those respondentsBC who received IV chemotherapy 85.0* and/or radiation treatment). Interior 85.2* Responses to other survey questions also indicate Fraser 84.5* that BC patients differ from patients included in the Vancouver Coastal 92.9* An additional report, Island to follow, will focus on issues of 86.6* Canadian benchmark. For example, in comparison to Northern 86.4* special interest, including PHSA the experiences of non-IV 84.0† other Canadian respondents to the survey, BC cancer therapy patients and Aboriginal cancer patients, and 89.7 outpatients were more likely to have first been told of Canada understanding issues related to emotional support in their diagnosis one or more years ago (76.8% BC vs. * Statistically significant difference from Canadian benchmark greater depth. 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 Overall rating of outpatient cancer care in BC, 2012/13 likely to have been told of their diagnosis by a family Individual question score Would recommend hospital to family/friends doctor (41.5% vs. 30.1%) or cancer specialist (37.3% vs. 25.7%), and less likely to have heard this news from 81.6 a surgeon (15.7% vs. 31.2%). In terms of their care pat- terns, BC patients were less likely to identify a cancer 15 16.9 1.4
Pat i e n t E x p e r i e n c e s w i t h o u t pat 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 In comparison with the Canadian benchmark, there There are many ways to report patients’ overall evalu- were interesting differences in the manner in which ations of the care they receive. Several key approaches BC residents reported their care. In terms of positive are presented in this section, and the results are sum- responses, BC residents were slightly less likely to rate marized at the end of the section. their care as ‘excellent’ in comparison to other Cana- dians (58.5% vs. 61.0%), equally likely to rate their Overall evaluations of care based on ‘overall care as ‘very good’, and more likely to rate their care as rating’ question ‘good’ (9.4% vs. 8.3%). In terms of negative responses, The first approach used an ‘overall rating’ question to BC residents were more likely to assign a rating of ask patients to think about the outpatient care in the ‘fair’ (2.1% vs. 1.6%) and equally likely to assign a facilitystatus Health whereamong they received patientstreatment receiving in the preced- outpatient cancer rating Overallofrating ‘poor’of . outpatient cancer care in BC, 2012/13, care in BC, 2012/13, compared to Canadian ing six months, and to rate that care as falling benchmark into compared to Canadian benchmark one of five categories: ‘excellent’, ‘very good’, ‘good’, Figure Individual5question presentsscoreresponses to the ‘overall rating’ ques- Individual question score Overall quality of care in past six months ‘fair’ or Rating ‘poor’.status of health This question is regarded as a standard tion using a format that better facilitates comparisons approach to measuring patient satisfaction. Responses and reporting over multiple jurisdictions. For Canada this BC Canada 58.5* 61.0 BC from the 2012/13 survey’s 6,385 respondents are out- graph, overall percent positive scores were created by lined in Figure 4. 42.4* 38.1 summing ‘excellent’, ‘very good’, and ‘good’ categories. 28.7 28.8 Tests for statistical differences were conducted by 29.6 28.7 Just over 58% of BC patients rated16.9* their18.4 outpatient testing for differences from the Canadian benchmark. 7.8* 9.2 9.4* 8.3 care in the facility where they received treatment 4.2* as 5.5 As a reminder, this question asks patients 2.1* 1.6to think 0.4 0.4 ‘excellent’ Excellent (58.5%), Very good29.6%Good rated it as ‘very Fair good’,Poor and about the outpatient Excellent Very good care Good in the facility Fairwhere they Poor 9.4% as ‘good’. Two percent (2.1%) rated their care as received treatment in the preceding six months. It Positive response Positive response ‘fair’ and 0.4% as ‘poor’. reports results for all patients (including those who * Statistically significant difference from Canadian benchmark * Statistically significant difference from Canadian benchmark patient cancer Overall4:rating Figure ofrating Overall outpatient cancer care of outpatient in BC, cancer care2012/13, in BC, Figure 5: Overall rating of outpatient cancer care in BC benchmark compared to Canadian benchmark 2012/13, compared to Canadian benchmark Overall and rating health of outpatient authorities, cancer 2012/13, care in to compared BCCanadian and health authorities, 2012/13, compared to Canadian benchmark benchmark Emotional health Individual question among patients receiving outpatient score cancer Overall care inof quality BC, 2012/13/13 care in past six months Individual question score Overall quality of care in past six months Canada 58.5* 61.0 Individual question score BC Canada BC 97.5* Rating of emotional health* Interior 97.1 Fraser 94.9* 29.6 28.7 Vancouver Coastal 97.8 Island 96.2* 36.4* Northern 95.5* 31.2*8.3 9.4* PHSA 98.0† 4.2* 5.5 2.1* 1.6 0.4 0.4 18.9* Canada 98.0 Poor Excellent Very good Good Fair 10.9* Poor 2.5* * Statistically significant difference from Canadian benchmark † Positive response * The PHSA scoresignificant Statistically is better compared to afrom difference Canadian benchmark benchmark. the Canadian that includes only regional Excellent Very good Good Fair Poor †centres. The This PHSAbenchmark is score is compared to a Canadian benchmark that includes * Statistically significant difference from Canadian benchmark only regional cancer centres. This benchmark is 98.2%, and the compa- rision is not statistically significant. * Statistically significant difference from the Canadian benchmark. Positive response Overall rating of outpatient cancer care in BC and health Overall rating of outpatient cancer care in BC, 2012/13, * Statistically significant difference from Canadian benchmark authorities, 2012/13, compared to Canadian benchmark compared to Canadian benchmark outpatient Individual question score Individual question score 1Overall 6 quality of care in past six months Providers did everything to treat cancer/blood disorder Amount of pain among patients receiving outpatient cancer care in BC, 2012/13, compared to Canadian benchmark BC 97.5* 89.7
Island 96.2* Fraser 94.9* 36.4* Northern 95.5* 31.2* Vancouver Coastal 97.8† PHSA 98.0 Island 96.2* 18.9* 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 36.4* Northern Canada 95.5* 98.0 31.2* 10.9* PHSA 98.0† 2.5* * Statistically significant difference from Canadian benchmark 18.9* † Canada The PHSA score is better 98.0 compared to a Canadian benchmark that includes only regional Excellent Very good Good 10.9* Fair Poor centres. This benchmark is 2.5* * Statistically significant difference from Canadian benchmark † The PHSA score is better compared to a Canadian benchmark that includes only regional Excellent Positive Very response good Good Fair Poor centres. This benchmark is received radiation therapy, IV chemotherapy, and Overall Figure 6:rating of rating Overall outpatient cancer care of outpatient in BC, cancer care2012/13, in BC, * Statistically significant difference from Canadian benchmark compared to Canadian benchmark 2012/13, compared to Canadian benchmark Positive response non-IV therapy) who responded in 2012/13. Overall rating of outpatient cancer care in BC, 2012/13, Individual question score * Statistically significant difference from Canadian benchmark compared to Canadian benchmark Providers did everything to treat cancer/blood disorder Amount of pain among patients receiving outpatient Using a test of statistical significance, overall percent cancer care in BC, 2012/13, compared to Canadian benchmark Individual question score positiveof Amount scores pain were amonglower for BC patients patientsoutpatient receiving in com- Providers did everything to treat cancer/blood disorder 89.7 85.0* parison cancer to in care other BC, Canadians, but the to 2012/13, compared Individual question score actual magnitude Canadian benchmark BC Canada Amount of pain in last 6 months 89.7 of the difference was very small (97.5% vs. 98.0%). 85.0* Patients in three of BC’s health authorities Individual question score BC had Canada BC Canada Amount of pain in last 6 months 51.5* statistically significant lower ratings in comparison BC Canada to51.5* patients 37.4 responding to the survey in the rest of Canada, but again 19.9* the26.4 actual20.8* magnitudes 24.8 of the differ- 13.5* 37.4 9.2 ence were small (Fraser 26.4 Health 94.9%, Island Health 7.8* 11.4 1.5* 1.1 24.8 19.9* Health20.8* 96.2%, and Northern 95.5% vs. 98.0% for the 13.5* Yes, completely 9.2 Yes, somewhat No No pain in Mild Moderate 11.4 Severe Canadian last 6 mos. benchmark). 7.8* 1.5* 1.1 Yes, completely Positive response Yes, somewhat No No pain in Mild Moderate Severe * Statistically significant difference from Canadian benchmark * Statistically significant difference from Canadian benchmark last 6 mos. Overall evaluations of care based on ‘providers * Positive response Statistically significant difference from the Canadian benchmark. did everything’ question * Statistically significant difference from Canadian benchmark * Statistically significant difference from Canadian benchmark Other questions on the survey also provide additional Overall rating of outpatient cancer care in BC and health perspective on the overall experience of patients. authorities, 2012/13, compared to Canadian benchmark Figure 7: Overall rating of outpatient cancer care in BC Responses to a question asking patients to assess Overall and health rating of outpatient authorities, 2012/13,cancer care in BC compared and health to Canadian Individual question score whether providers did everything to treat their cancer/ authorities, benchmark Providers 2012/13, compared to Canadian benchmark did everything to treat cancer/blood disorder blood disorder show that 85.0% of respondents replied Individual question score BC 85.0* Providers did everything to treat cancer/blood disorder ‘yes, completely’, while 13.5% replied ‘yes, somewhat’ Interior 85.2* and only 1.5% replied ‘no’ (Figure 6). These responses Fraser BC 84.5* 85.0* Vancouver Coastal 92.9* Interior 85.2* were different from the Canadian benchmark, with Island 86.6* 84.5* Fraser Northern 86.4* the percent of BC patients answering ‘yes completely’ Vancouver Coastal 92.9* PHSA 84.0† Island 86.6* almost 5 percentage points lower. Northern 86.4* Canada 89.7 PHSA 84.0† * Statistically significant difference from Canadian benchmark When ‘completely’ positive responses are compared Canada 89.7 across BC and health authorities, important differ- * Statistically significant difference from Canadian benchmark * Statistically significant difference from the Canadian benchmark. ences are seen (Figure 7). Percent positive responses † The PHSA score is compared to a Canadian benchmark that includes Overall rating of outpatient cancer care in BC, 2012/13 only regional cancer centres. This benchmark is 89.8%, and the compa- range from 84.0% to 92.9% across health authorities, rision is statistically significant. Individual question score in comparison to the Canadian benchmark of 89.7%. Overall rating of outpatient cancer care in BC, 2012/13 Would recommend hospital to family/friends Most health authorities have responses that are low in Individual question score 81.6 comparison to the Canadian benchmark. The excep- Would recommend hospital to family/friends tion is Vancouver Coastal Health, with an extremely 81.6 high score of 92.9%. 16.9 1.4 17 16.9 Yes, Yes, No definitely probably 1.4
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