Patient Experiences with Outpatient Cancer Care in British Columbia, 2012/13

Patient Experiences with Outpatient Cancer Care in British Columbia, 2012/13

Patient Experiences with Outpatient Cancer Care in British Columbia, 2012/13

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

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

Patient Experiences with Outpatient Cancer Care in British Columbia, 2012/13

1 Contents U B C c e n t r e f o r h e a lt h s e rv i c e s a n d p o l i c y r e s e a r c h 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

Patient Experiences with Outpatient Cancer Care in British Columbia, 2012/13

Pa t i e n t E x p e r i e n c e s w i t h o u t pa 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 2 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

U B C c e n t r e f o r h e a lt h s e rv i c e s a n d p o l i c y r e s e a r c h 3 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

Pa t i e n t E x p e r i e n c e s w i t h o u t pa 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 4 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.

Acknowledgments U B C c e n t r e f o r h e a lt h s e rv i c e s a n d p o l i c y r e s e a r c h 5 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.

Pa t i e n t E x p e r i e n c e s w i t h o u t pa 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 6 Executive Summary The purpose of this report is to describe British Columbians’ perceptions and reported experi- ences with outpatient cancer care, to compare their responses to those of other Canadians, and to deter- mine if there have been changes in patient experiences for comparable BC patients who were surveyed in 2005/06. 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 2005/06 survey (6).

About this survey In BC, the Patient Reported Experience Measures Steering Committee (PREMS Committee) has been tasked with developing a provincial approach to measure patient experience. The PREMS Commit- tee contracted the National Research Corporation Canada (NRCC) to collect survey data and generate reports that, in turn, form the basis of the informa- tion 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; informa- tion, communication and education; and emotional support.

In addition to questions that are used in surveys in several Canadian provinces, the BC survey included additional questions that were developed specifically for use in this province. Two surveys of outpatient oncology patients have been conducted in BC, the first in 2005/06 and a more recent 2012/13 survey, which is the focus of this report. Findings Findings from BC’s outpatient cancer survey suggest that BC 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 satis- faction 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 continu- ity; information, communication and education; and emotional support. In 2012/13, only 46.7% of BC cancer outpatients gave positive ratings to the emotional support dimension of their care; this was an improvement from 2005/06, 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 2005/06.

While there have been declines in some aspects, improvement has occurred in some of the areas of greatest weakness. Results for the 2012/13 survey suggest that BC 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 BC cancer outpatients. Alternatively, they may be related to differences in the composition of respondents in the BC 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.

U B C c e n t r e f o r h e a lt h s e rv i c e s a n d p o l i c y r e s e a r c h 7 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 human- ity 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).

Perhaps more importantly, ‘embedding’ the patient perspective—building an understanding of patients’ experiences into the care that we provide—is increas- ingly 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 over- whelming, 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. Approaches to understanding patient experience in BC Over the past two decades there has been growth in the development of rigorous approaches to under- standing 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, province- wide surveys have been conducted to understand the experiences of patients in six different sectors in BC’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 BC.

These surveys have been led by the BC 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 initi- ated 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 BC.

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 BC Ministry of Health. Introduction * 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).

Pa t i e n t E x p e r i e n c e s w i t h o u t pa 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 8 BC health care facilities provide an enormous number and variety of cancer care services, both inpatient and outpatient, to cancer patients throughout the prov- ince and beyond. In addition to interactions with care providers for diagnosis, therapy, and disease manage- ment, 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 BC 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 BC Cancer Agency Regional Cancer Centres, which provide a full range of radiation and systemic therapy (and are the only locations where BC cancer patients can receive radia- tion 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 ser- vices that provide minimal services such as hospital pharmacies that dispense drugs to treat cancer.

The Communities Oncology Network is a collabora- tive voluntary partnership that includes a range of community chemotherapy centres, together with the Regional Cancer Centres, with facilitation by the BC Cancer Agency, to support delivery of high quality cancer care to patients and their families in the com- munities 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 Canada, 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 Canada; it was developed by the Picker Institute and validated for use in Canada (including BC) by the National Research Corporation Canada (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 BC, first in 2005/06 and more recently in 2012/13. BC has used the same standardized survey tool in both cycles, with some modifications and additional questions, described below.

BC’s 2005/06 and 2012/13 outpatient cancer care surveys For both surveys, adults who received outpatient cancer care over a six month period from one of the BC facilities that deliver cancer services* were eligible to participate. Both surveys were restricted to BC 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 2005/06, from November 15, 2005 to May 15, 2006; in 2012/13, from June 15 to December 15, 2012).

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 ‘non- intravenous’ 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). * The facilities included differ slightly between 2005/06 and 2012/13. See Appendix 1 for a list of facilities included in the surveys.

U B C c e n t r e f o r h e a lt h s e rv i c e s a n d p o l i c y r e s e a r c h 9 In both 2005/06 and 2012/13, surveys were admin- istered 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 2005/06; and in 2012/13, 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 2012/13 survey. These are outlined below. The 2005/06 survey was offered only to patients with a primary diagnosis of cancer.

In 2012/13, the survey was expanded to include patients who had a myelo- proliferative 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 2012/13 survey including this additional group of patients.

A second difference in 2012/13 involved the expan- sion of the survey to include an even larger additional group of patients, based on the type of cancer treat- ment they received. In 2005/06, 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 2012/13. Once again, all patients who received IV che- motherapy and/or radiation therapy during the time of the survey were invited to participate. This subset of the 2012/13 survey respondents is comparable to those surveyed in 2005/06 (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 doc- tor’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 2012/13. This additional group, referred to as those receiving only non-IV treatment modalities,† is an important new group in the 2012/13 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 2012/13 survey therefore contains information for patients who received three major types of treatment: radiation therapy; IV chemotherapy; and non-IV therapy. The 2012/13 survey instrument was itself modified in several ways. As in 2005/06, the survey used the NRC Picker Canada AOPSS.

Given earlier findings of poor patient experiences in the area of emotional support, newly developed ‘made-in-BC’ questions 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.

Pa t i e n t E x p e r i e n c e s w i t h o u t pa 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 0 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 2005/06 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 2005/06 results.

The BC survey involved a disproportional sampling scheme, with questionnaires sent to all patients receiv- ing 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 con- ducting any analyses involving the group of non-IV therapy patients, including analyses of the BC 2012/13 overall survey results.* Using these weights adjusts the disproportional sample so that it ‘looks’ like the results came from a random sample of the BC 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 understand- ing BC 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 BC 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 Mani- toba, 21 Ontario hospitals, three Quebec hospitals, Cancer Care Nova Scotia, and the Prince Edward Island Cancer Treatment Center. In most cases, ques- tions 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 spe- cialized facilities that provide a full range of radiation and systemic therapy for cancer patients, such as the BC 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 BC survey.

U B C c e n t r e f o r h e a lt h s e rv i c e s a n d p o l i c y r e s e a r c h 1 1 patients included in this benchmark come from orga- nizations 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 BC in a number of ways. Differ- ences 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 out- patient cancer patients that are included, and the specific questions that are used.

Of particular impor- tance for comparisons is the type of patients that are included. Some provinces only survey patients seen at cancer centres, while others, like BC, survey patients who receive services at local hospitals. BC 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 BC 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 BC in 2012/13. Where possible, we provide BC 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 2005/06 and 2012/13.

This report relies on documents that contain the results of data analyses undertaken by the National Research Corporation Canada, which conducted the survey. While researchers at the UBC 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 2012/13 survey, we typically present results for BC overall, but in some cases we report results for subgroups, either to ensure comparability with the 2005/06 survey, or to focus on differences in patient experience across health authorities.

When comparisons are made (for example when BC results are compared to those from the rest of Canada), 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 involv- ing 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 con- clusions to be considered, and areas of special interest and possible concern.

* Many other provinces survey more frequently than BC; some provinces conduct surveys in this area every one to two years.

Pa t i e n t E x p e r i e n c e s w i t h o u t pa 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 1. What did we learn? Findings from 2012/13 1.1 Characteristics of patients who responded to the survey In total, over 13,000 patients were mailed the BC Outpatient Cancer Care survey. A total of 6,385 indi- viduals 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 compa- rable 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.

The results presented in this section focus on describ- ing the experiences of all BC 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 outpa- tient cancer patients in active treatment in 2012/13).

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 Table 1: Number and percent of respondents or patients, by age, sex, ethnicity, and type of cancer # of respondents % of cancer outpatients* All categories 6,385 100.0 Age 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 Sex Female 3,628 63.8 Male 2,757 36.2 Ethnicity, self-reported† 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 -- Primary type of cancer, self-reported‡ Breast 1,614 42.5 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 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?”

U B C c e n t r e f o r h e a lt h s e rv i c e s a n d p o l i c y r e s e a r c h 1 3 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 BC cancer outpatients, breast (42.5%) and prostate cancer (22.0%) were reported as the most frequent types of cancer. Together these patients rep- resent 64.5% of cancer outpatients. The new category of patients in the 2012/13 survey, those with myelo- proliferative blood disorder, appear in the category “Hematology (blood)”; they are the third largest group and represent 6.9% of BC 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 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. Table 2: Number and percent of respondents or patients, by type and location of care # of respondents % of cancer outpatients* All categories 6,385 100.0 Type of cancer therapy received Radiation therapy &/or IV chemo- therapy (i.e. ‘repli- cation group’) 4,694 30.8 Non-IV therapy 1,691 69.2 Health authority where cancer care received 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 * 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. Across the province, the majority of BC cancer outpa- tients received their care from PHSA facilities (63.9%), reflecting services provided by the BC 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 per- centage (3.5%) of BC cancer outpatients.

Pa t i e n t E x p e r i e n c e s w i t h o u t pa 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 4 To describe other characteristics of survey respon- dents, information about health status, emotional status, and the amount of pain that BC cancer patients experience is presented below. These results are based on reports from respondents. They have been weighted to reflect responses from the entire popula- tion of BC 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, BC 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 ‘excel- lent’. They were less likely to report their health as ‘fair’ Figure 1: Health status among patients receiving outpatient cancer care in BC, 2012/13, compared to Canadian benchmark Figure 2: Emotional health among patients receiving outpatient cancer care in BC, 2012/13 * Statistically significant difference from Canadian benchmark Overall rating of outpatient cancer care in BC, 2012/13, compared to Canadian benchmark Individual question score Overall quality of care in past six months 58.5* 61.0 29.6 28.7 9.4* 8.3 2.1* 1.6 0.4 0.4 Canada BC Poor Fair Good Very good Positive response Excellent BC Overall rating of outpatient cancer care in BC and health authorities, 2012/13, compared to Canadian benchmark Individual question score Overall quality of care in past six months 97.5* Health status among patients receiving outpatient cancer care in BC, 2012/13, compared to Canadian benchmark Excellent 7.8* 9.2 * Statistically significant difference from Canadian benchmark Good Individual question score Rating of health status 42.4* 38.1 Canada BC Poor 4.2* 5.5 Fair 16.9* 18.4 Very good 28.7 28.8 Positive response Emotional health among patients receiving outpatient cancer care in BC, 2012/13/13 Individual question score * * Statistically signi Overall ratin compared to Individual quest Overall quality 58.5* 61.0 Po Excellent Overall ratin compared to Individual quest Providers did 85.0* 8 Overall ratin authorities, * Statistically signi † The PHSA score centres.

This bench Individual quest Overall quality Vancouv Amount of pain among patients receiving outpatient cancer care in BC, 2012/13, compared to Canadian benchmark Individual question score Health status among patients receiving outpatient cancer care in BC, 2012/13, compared to Canadian benchmark Excellent 7.8* 9.2 * Statistically significant difference from Canadian benchmark Good Individual question score Rating of health status 42.4* 38.1 Canada BC Poor 4.2* 5.5 Fair 16.9* 18.4 Very good 28.7 28.8 Positive response Emotional health among patients receiving outpatient cancer care in BC, 2012/13/13 Excellent 18.9* * Statistically significant difference from Canadian benchmark Good Individual question score Rating of emotional health* Poor 2.5* Fair 10.9* 31.2* Very good 36.4* Positive response * Statistically significant difference from the Canadian benchmark.

* A Canadian benchmark is not available as this is a ‘made-in-BC’ question added to the 2012/13 survey to better understand the area of emotional support.

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 BC 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 BC 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 BC cancer outpatients than for those in other Canadian provinces. Moreover, fewer BC cancer patients had pain that was mild, moderate or severe in comparison to Canadian outpatient cancer patients. In comparison to the general Canadian pop- ulation, cancer patients report higher levels of pain.

U B C c e n t r e f o r h e a lt h s e rv i c e s a n d p o l i c y r e s e a r c h 1 5 Figure 3: Amount of pain among patients receiving outpatient cancer care in BC, 2012/13, compared to Canadian benchmark Overall rating of outpatient cancer care in BC, 2012/13 Individual question score Would recommend hospital to family/friends 81.6 16.9 1.4 Overall rating of outpatient cancer care in BC, 2012/13, compared to Canadian benchmark Individual question score Providers did everything to treat cancer/blood disorder 85.0* 89.7 13.5* 9.2 1.5* 1.1 Canada BC * Statistically significant difference from Canadian benchmark Positive response No Yes, somewhat Yes, completely Canada * Statistically significant difference from Canadian benchmark † The PHSA score is better compared to a Canadian benchmark that includes only regional centres.

This benchmark is Interior Fraser Vancouver Coastal Island Northern PHSA 98.0 97.1 94.9* 97.8 96.2* 95.5* 98.0† BC Canada Overall rating of outpatient cancer care in BC and health authorities, 2012/13, compared to Canadian benchmark * Statistically significant difference from Canadian benchmark Individual question score Providers did everything to treat cancer/blood disorder Interior Fraser Vancouver Coastal Island Northern PHSA 85.0* 89.7 85.2* 84.5* 92.9* 86.6* 86.4* 84.0† 51.5* 37.4 7.8* 11.4 20.8* 24.8 19.9* 26.4 No pain in last 6 mos. * Statistically significant difference from Canadian benchmark Amount of pain among patients receiving outpatient cancer care in BC, 2012/13, compared to Canadian benchmark Individual question score Amount of pain in last 6 months Severe Moderate Mild Canada BC Excellent 18.9* * Statistically significant difference from Canadian benchmark Good Poor 2.5* Fair 10.9* 31.2* Very good 36.4* Positive response * Statistically significant difference from the Canadian benchmark.

In the 2012 CCHS, 14.2% of Canadians reported pain levels as ‘moderate’ or ‘severe’, in comparison to 28.6% of BC cancer patients and 36.2% of other Canadian cancer patients (4).

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 provid- ing results of the 2012/13 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 popu- lation overall and by the health authority from which cancer care was received. Where relevant, compari- sons are made to the Canadian benchmark results. Section 2 focuses on comparing results from the 2005/06 and 2012/13 surveys. It therefore includes only the ‘replication group’ from 2012/13 (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. In summary, BC 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 BC patients differ from patients included in the Canadian benchmark. For example, in comparison to other Canadian respondents to the survey, BC cancer outpatients were more likely to have first been told of their diagnosis one or more years ago (76.8% BC 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 pat- terns, BC patients were less likely to identify a cancer

Pa t i e n t E x p e r i e n c e s w i t h o u t pa 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 6 1.2 Overall evaluations of care There are many ways to report patients’ overall evalu- ations of the care they receive. Several key approaches are presented in this section, and the results are sum- marized 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 preced- ing 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 2012/13 survey’s 6,385 respondents are out- lined in Figure 4.

Just over 58% of BC 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 BC residents reported their care. In terms of positive responses, BC residents were slightly less likely to rate their care as ‘excellent’ in comparison to other Cana- dians (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, BC 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’ ques- tion 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 BC, 2012/13, compared to Canadian benchmark * Statistically significant difference from Canadian benchmark Overall rating of outpatient cancer care in BC, 2012/13, compared to Canadian benchmark Individual question score Overall quality of care in past six months 58.5* 61.0 29.6 28.7 9.4* 8.3 2.1* 1.6 0.4 0.4 Canada BC Poor Fair Good Very good Positive response Excellent BC Overall rating of outpatient cancer care in BC and health authorities, 2012/13, compared to Canadian benchmark Individual question score Overall quality of care in past six months 97.5* patient cancer benchmark Canada Poor 4.2* 5.5 outpatient * Statistically significant difference from the Canadian benchmark.

Figure 5: Overall rating of outpatient cancer care in BC and health authorities, 2012/13, compared to Canadian benchmark * Statistically significant difference from Canadian benchmark Overall rating of outpatient cancer care in BC, 2012/13, compared to Canadian benchmark Individual question score Overall quality of care in past six months 58.5* 61.0 29.6 28.7 9.4* 8.3 2.1* 1.6 0.4 0.4 Canada BC Poor Fair Good Very good Positive response Excellent Overall rating of outpatient cancer care in BC, 2012/13, compared to Canadian benchmark Individual question score Providers did everything to treat cancer/blood disorder 89.7 BC Canada Overall rating of outpatient cancer care in BC and health authorities, 2012/13, compared to Canadian benchmark * Statistically significant difference from Canadian benchmark † The PHSA score is better compared to a Canadian benchmark that includes only regional centres.

This benchmark is Individual question score Overall quality of care in past six months Interior Fraser Vancouver Coastal Island Northern PHSA 97.5* 98.0 97.1 94.9* 97.8 96.2* 95.5* 98.0† Amount of pain among patients receiving outpatient cancer care in BC, 2012/13, compared to Canadian benchmark Health status among patients receiving outpatient cancer care in BC, 2012/13, compared to Canadian benchmark Excellent 7.8* 9.2 * Statistically significant difference from Canadian benchmark Good Individual question score Rating of health status 42.4* 38.1 Canada BC Poor 4.2* 5.5 Fair 16.9* 18.4 Very good 28.7 28.8 Positive response Emotional health among patients receiving outpatient cancer care in BC, 2012/13/13 Excellent 18.9* * Statistically significant difference from Canadian benchmark Good Individual question score Rating of emotional health* Poor 2.5* Fair 10.9* 31.2* Very good 36.4* Positive response * 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 compa- rision is not statistically significant.

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