Experiences of adult cancer survivors in transitions

The Partnership collaborated with ten provincial cancer agencies/programs in this study. Each agency/program appointed a primary investigator and research coordinator for provincial planning, survey dissemination, and national agency interaction. A national Expert Panel provided overall advice with short-term working groups formed as required. The Partnership hired a vendor to assist with survey design, distribution, and analysis.

The survey was designed to answer the following questions:

A literature review was conducted in 2015 to inform the conceptual framework for the survey [27, 28], to direct subsequent consultations and guide the development of survey items. Both peer-reviewed and gray literature were accessed to identify existing research on patient/survivor needs, patient/survivor experience, and relevant survey instruments. The databases included in the search were PubMed, PsychInfo, Medline, ProQuest Nursing and Allied Health, JSTOR, Web of Science, Science Direct, CINAHL, Google Scholar, JBI, and the Cochrane Library. Consultations were held with cancer survivors (11 adults, 4 AYA), clinicians (12), and system leaders (8) to gather feedback about the framework’s relevance (Fig. 1). The survey items were crafted based on the framework, consultations, review of existing surveys, and input from key stakeholder groups, through an iterative process. Once finalized, the survey was translated into French using a process that ensured content and semantic equivalence. An on-line survey version was designed in both languages.

Cognitive interviews (60–90 min) were completed with 15 different cancer survivors who met the eligibility criteria to evaluate the survey’s meaningfulness, clarity, understandability, and ease of completion. The survey underwent performance testing with 96 survivors, recruited to match the eligibility criteria. Only small adjustments to the survey were made following these evaluations.

The final version contained closed and open-ended items organized as about you, your health and well-being, about your history with cancer, health care providers who oversee your follow-up cancer care, overall experiences with follow-up, understanding changes in your life, access to follow-up cancer care plans/medical records, health insurance, socio-demographic questions, Internet use, and final comments. The paper survey took about 45 min to complete and the online version took 30 min. The ten provinces submitted to ethics and privacy approvals prior to data collection. A copy of the survey is available on the Canadian Partnership Against Cancer System Performance site http://​www.​systemperformanc​e.​ca/​transition-study/​

Provincial staff drew eligible patients from provincial cancer registries based on eligibility criteria and linking to treatment data to confirm that treatment had occurred and end of treatment dates (defined for each disease type). The number of surveys was calculated for the adult sample such that 95% confidence intervals, for a percentage assumed to be 50%, would have width no more than ± 5% by disease site and province and assumed a response rate of 30%. Estimates of the number of eligible survivors for each province were based on disease site prevalence at the national level and incidence by province. As smaller provinces were not likely to have enough survivors within disease sites to achieve desired confidence interval precision, all eligible survivors were surveyed. For larger provinces and disease sites where the number of eligible survivors was anticipated to be greater than the required number, a random sample within the cancer disease site was chosen. The sample would be sufficient to achieve precision at least ± 3% by disease site for all provinces combined. A total of 40,790 survey packages were mailed out across the 10 provinces.

The survey was disseminated through each provincial cancer agency/registry and customized as required. Each province mailed a survey package to the survivor’s residence to survivors drawn from the registry database. All recipients, except in Quebec, had the option of completing the survey online. One reminder letter was sent to those who had not responded approximately 4 weeks after the initial mailing. Quebec utilized telephone call reminders.

The survey package contained (1) a cover letter (customized to provincial requirements with brief study description, confidentiality explanations, URL link and PIN to the encrypted online survey, consent documents in Ontario and Quebec); (2) paper survey copy with pre-printed barcode and associated PIN (for those who preferred a paper version); and (3) pre-addressed, pre-paid return envelope. Ontario differed from all provinces by using a double consent process.

The survey was offered in English across all provinces except New Brunswick and Quebec. New Brunswick mailed English and French survey versions to all recipients. Quebec recorded language preferences in their sample pull and mailed roughly 25% in English. However, any recipient across the country could request a French survey version.

The Research Coordinators managed project-specific provincial phone lines to provide assistance to respondents. Data were collected in 2016 in parallel for 18–19 weeks in 7 provinces, 8 weeks in Quebec, 9 weeks in British Columbia, and 15 weeks in Ontario.

This manuscript is focused on the initial question regarding unmet needs for the adult respondents. Data were analyzed using SAS 9.4. Descriptive statistics were used to summarize data. The frequency of individual needs was calculated separately within each domain (physical, emotional, practical) and the corresponding level of concern and help-seeking for each need determined by crosstabs. Concerns identified by respondents in the ‘big’ category were treated as ‘severe’ and ‘difficulty getting help’ included responses ‘hard’, ‘very hard’, and ‘did not get help’. ‘Unmet need’ was defined as the percentages of respondents who did not receive help regardless of whether or not they sought help. Unmet needs were rank-ordered by the number who experienced a concern (magnitude of concern) and the percentages of those respondents who did not receive help. The frequency of response for each informational item was calculated. Because of the different format for these items, ‘unmet need’ included the negative responses (i.e., ‘disagree’, ‘strongly disagree’) and percentages of negative responses were rank-ordered.

Confidentiality issues limited information about characteristics of survivors that could be shared with the vendor. As a result, there was insufficient detail to allow weighting of surveys to make them representative of all Canadian survivors. Further, although the intention of sampling was to target five disease sites and survivors 1–3 years post-treatment, self-reported survey data revealed that just under 10% of survivors indicated they had a cancer site outside the five targeted, and only 48% reported being between 1 and 3 years post-treatment. Analysis of missing data patterns revealed that data were not missing completely at random, emphasizing that this sample should not be generalized to represent all survivors in Canada. Unweighted data from all survey respondents are presented.

A total of 40,790 survey packages were mailed out across the ten provinces and 12,929 surveys were completed by adults (age 30+ years), and 329 surveys were completed by adolescents and young adults (18 to 29 years) giving an overall response rate of 33%. The final sample includes all respondents who returned a paper copy by mail or accessed the survey on-line and completed the initial demographic information. Eighty-two percent (82%) of the respondents returned their survey by mail.

Of the adult sample, 51% were females and 60% were 65 years of age or older (see Table 1). Ninety-two percent reported that their diagnosis occurred between 2012 and 2014 and 77% indicated that they had not experienced metastatic disease. Breast cancer (29%) and prostate cancer (24%) survivors constituted the largest respondent groups. Of note, 14% of the respondents reported having more than one cancer and 65% reported experiencing co-morbid conditions (i.e., cardiovascular or hypertension = 30% and arthritis or rheumatic disease = 28%). The majority received some form of treatment (e.g., surgery, radiation, chemotherapy, hormonal therapy) with 4% indicating that they had not received cancer treatment. Approximately 72% indicated their last treatment occurred between 1 and 5 years ago. Overall, three-quarters of the respondents reported that their physical and emotional health was good/very good and 82% rated their quality of life as good/very good.

The majority of respondents (87%) experienced at least one physical symptom while 58% experienced 3 or more. On average, 3.8 physical symptoms were reported by those with at least one symptom. The most common symptoms across all cancer sites were fatigue/tiredness (67%), change in sexual function/activity (44%), and change in memory/concentration (39%), and nerve problems (36%) (see Table 2).

Of individuals who were concerned about a physical symptom, the highest percentage who expressed having a ‘big’ concern cited changes in sexual function/activity (45%), hormonal/menopause or fertility (37%), and fatigue/tiredness (33%). Gastrointestinal problems (63%) and pain (61%) were the symptoms for which respondents most frequently sought help. However, more than one-third of respondents who sought help indicated that it was difficult to obtain for most of their symptoms. Seeking help for changes in concentration and memory was particularly challenging (48% experienced difficulty).

Of those who did not seek help, 33% indicated that they did not seek help because someone had told them it was normal to expect and they did not think anything could be done. Ten percent said they did not want to ask for help.

The majority of respondents (78%) experienced at least one emotional issue with 42% experiencing 3 or more. On average, 3.3 emotional issues were reported by those with at least one concern (see Table 3). Many survivors (68%) reported suffering from anxiety and worry about cancer recurrence. Additionally, 42% experienced changes in sexual intimacy and 46% reported changes in depression, sadness, and loss of interest in daily activities.

Of those who experienced concerns, 37% identified changes in sexual intimacy of greatest concern. About a third of survivors sought help regarding sexual intimacy (31%), stress (31%), or depression (34%). Of those who did seek help, about 25% experienced difficulty in obtaining assistance or did not receive it.

Ninety-four percent of those with emotional concerns indicated the reason they did not ask for help; 22% indicated that someone had told them it was normal to experience emotional concerns, or they did not want to ask (18%).

Almost half of the respondents (44%) experienced at least one practical challenge with 13% experiencing 3 or more. One in five survivors (22%) reported challenges returning to work or school while 21% faced challenges getting to and from appointments and 20% paying for health care. On average, two practical concerns were reported by survivors with at least one concern (see Table 4).

Of those who faced practical challenges, returning to work (41%) and getting life insurance (36%) were common issues and about a third sought help. The largest proportion sought help for getting to and from appointments (43%). Of those who sought help, the largest percent who experienced difficulty was getting help obtaining insurance (67%) or paying for health care bills (53%).

Of those who had concerns, 94% indicated the reason they did not ask for help was because they did not want to ask (16%) or they did not know about services available to help them (18%).

The majority of survivors agreed/somewhat agreed that the information they needed was available to them (85%), the information they received was useful (85%), and information about side effects was available (81%). More than half found information about cancer recurrence (62%) and community resources (58%) was available. Overall, more survivors agreed that useful information about physical concerns (75%) was available to them than about emotional (54%) or practical (54%) concerns.

Table 5 presents the number of respondents concerned about a change and the percent of those individuals who did not receive help, regardless of whether they sought help or not. In total, 7717 individuals identified fatigue as a concern, while 7327 identified anxiety. Overall, more individuals expressed concern about physical changes than emotional and practical ones.

The proportion of individuals expressing concern but not receiving help was highest in both emotional and practical domains, ranging from a low of 59% (getting to and from appointments) to a high of 88% (relationships with friends and colleagues). Within the physical domain, across all changes, more than 40% of individuals did not receive help for the concerns they experienced.