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Experiences of adult cancer survivors in transitions

Experiences of adult cancer survivors in transitions Purpose To understand the experiences of adult cancer survivors as they transition from the end of cancer treatment to follow-up care as a basis for developing actionable recommendations to integrate cancer care delivery and survivorship care. Methods A national survey was conducted in collaboration with ten Canadian provinces to identify unmet needs and experiences with follow-up for cancer survivors between 1 and 3 years post-treatment. Surveys were available in English and French and completed either on paper or on-line. Samples were drawn from provincial cancer registries and packages distributed by mail. Results 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 (age 18 to 29 years) giving an overall response rate of 33.3%. For the purposes of this publication, the focus will be on the adult sample. In the adult cohort (age 30+ years), 51% of the sample were females, 60% were 65 years of age or older, and 77% had not experienced metastatic spread. Three-quarters reported their health as good/very good and 82% that their quality of life was good/very good. Overall, 87% experienced at least one physical concern, 78% experienced at least one emotional concern, and 44% experienced at least one practical concern. The average number of concerns reported for each domain ranged from 2.0 to 3.8. For those who sought help, a third experienced difficulty obtaining assistance or did not receive it. The most frequently cited reasons for not seeking help was that someone had told them what they were experiencing was normal. Conclusions The results indicate that many adult survivors have concerns about physical, emotional, and practical issues but are not receiving help to reduce their suffering. It is imperative we take action to correct this current reality. . . . . Keywords Cancer survivors Transitions in care Integrated care Survivorship care Follow-up care Introduction/purpose uncertainty, finding a ‘new normal’, returning to work or school, and fear of recurrence [10–14]. Many face significant Improved outcomes of cancer treatment have resulted in an financial challenges [15] and are more vulnerable to health- ever-growing number of individuals who are living with and related concerns than their healthy counterparts [16]. beyond cancer. There are more than 1.6 million Canadians Relatively little research has been conducted to understand who have had a cancer diagnosis and are living after treatment the experiences of survivors in accessing care following the [1]. completion of treatment [17] although several recent studies Cancer survivors experience varied and substantial impacts have moved in this direction in Australia [18], United on their quality of life [2–6]. Fatigue, cognitive changes, Kingdom [19], United States [3, 20], Denmark [21], and the lymphedema, and pain are frequently reported [7–9]. Asia Pacific Region [22]. These studies described significant Additionally, emotional distress emerges from living with survivor concerns, many of which remained unaddressed, and difficulties regarding access, professional responsiveness, co- ordination, communication, and involvement in care. To date, one Canadian study explored cancer survivors’ * Raquel Shaw Moxam Raquel.ShawMoxam@partnershipagainstcancer.ca needs [23] but experiences were not investigated and the sam- ple was small (n = 550). The growing cadre of cancer survi- vors has stimulated interest in finding care models whereby Bloomberg Faculty of Nursing, University of Toronto, the responsibility for survivorship care/follow-up care is Toronto, Canada 2 transitioned from specialist to primary care providers [24]. Canadian Partnership Against Cancer, Toronto, Canada 2978 Support Care Cancer (2019) 27:2977–2986 However, concerns have been voiced that this trend could & What are the needs of cancer survivors 1–3 years after increase gaps in survivorship care [25, 26]. treatment (physical, emotional, practical, and information- The Canadian Partnership Against Cancer (the Partnership) al)? What are the biggest unmet needs? held consultations in 2014 with over 75 experts on survivor- & Who are the most vulnerable cancer survivors? What per- ship, measurement, and cancer system planning. Participants sonal characteristics are associated with unmet needs/poor identified transitions, integration, and communication as key outcomes? areas for survivorship improvements but limited data on & What factors/system resources are correlated with needs follow-up and transitions between care providers was a sig- being met? Enablers/predictors of needs being met/ nificant gap. Given these observations, the Partnership under- positive outcomes achieved? took a national survey to understand the experiences of cancer survivors as they transition from cancer treatment to survivor- A literature review was conducted in 2015 to inform the ship care/follow-up care. Survivorship care or follow-up care conceptual framework for the survey [27, 28], to direct sub- is defined as care given to a patient after finishing cancer sequent consultations and guide the development of survey treatment and prior to identification of recurrent disease. The items. Both peer-reviewed and gray literature were accessed findings would be a basis for developing actionable recom- to identify existing research on patient/survivor needs, patient/ mendations on integrating cancer and survivorship care, ulti- survivor experience, and relevant survey instruments. The da- mately improving the experience of survivors. tabases 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 can- Methods cer survivors (11 adults, 4 AYA), clinicians (12), and system leaders (8) to gather feedback about the framework’s rele- Study design and participant eligibility criteria vance (Fig. 1). The survey items were crafted based on the framework, consultations, review of existing surveys, and in- A survey, Experience of Cancer Patients in Transition Study put from key stakeholder groups, through an iterative process. (‘Transitions Study’), was administered across ten Canadian Once finalized, the survey was translated into French using a Provinces. The survey focused on cancer survivors between 1 process that ensured content and semantic equivalence. An and 3 years following cancer treatment. The population and on-line survey version was designed in both languages. eligibility criteria included adult survivors (age 30+ years) of Cognitive interviews (60–90 min) were completed with 15 breast, prostate, colorectal, and melanoma diseases with no different cancer survivors who met the eligibility criteria to metastatic spread, and selected hematological (e.g., Hodgkin’s evaluate the survey’s meaningfulness, clarity, understandabil- lymphoma, diffuse B cell lymphoma, acute myelogenous leu- ity, and ease of completion. The survey underwent perfor- kemia, acute lymphocytic lymphocyte leukemia) cancers; and mance testing with 96 survivors, recruited to match the eligi- adolescents and young adults (AYA, 18 to 29 years) with all bility criteria. Only small adjustments to the survey were made non-metastatic cancer types except testes, where metastatic dis- following these evaluations. ease was included. For the purposes of this first paper from the The final version contained closed and open-ended items Transitions Study, and due to the magnitude of the dataset, the organized as about you, your health and well-being, about your focus will be on the adult population. history with cancer, health care providers who oversee your follow-up cancer care, overall experiences with follow-up, un- Governance structure derstanding changes in your life, access to follow-up cancer care plans/medical records, health insurance, socio- The Partnership collaborated with ten provincial cancer demographic questions, Internet use, and final comments. agencies/programs in this study. Each agency/program The paper survey took about 45 min to complete and the online appointed a primary investigator and research coordinator version took 30 min. The ten provinces submitted to ethics and for provincial planning, survey dissemination, and national privacy approvals prior to data collection. A copy of the survey agency interaction. A national Expert Panel provided overall is available on the Canadian Partnership Against Cancer advice with short-term working groups formed as required. System Performance site http://www.systemperformance.ca/ The Partnership hired a vendor to assist with survey design, transition-study/ distribution, and analysis. Sample selection Survey development Provincial staff drew eligible patients from provincial cancer The survey was designed to answer the following questions: registries based on eligibility criteria and linking to treatment Support Care Cancer (2019) 27:2977–2986 2979 Fig. 1 Conceptual framework for transitions study data to confirm that treatment had occurred and end of treat- survivors drawn from the registry database. All recipients, ment dates (defined for each disease type). The number of except in Quebec, had the option of completing the survey surveys was calculated for the adult sample such that 95% online. One reminder letter was sent to those who had not confidence intervals, for a percentage assumed to be 50%, responded approximately 4 weeks after the initial mailing. would have width no more than ± 5% by disease site and Quebec utilized telephone call reminders. province and assumed a response rate of 30%. Estimates of The survey package contained (1) a cover letter (custom- the number of eligible survivors for each province were based ized to provincial requirements with brief study description, on disease site prevalence at the national level and incidence confidentiality explanations, URL link and PIN to the by province. As smaller provinces were not likely to have encrypted online survey, consent documents in Ontario and enough survivors within disease sites to achieve desired con- Quebec); (2) paper survey copy with pre-printed barcode and fidence interval precision, all eligible survivors were sur- associated PIN (for those who preferred a paper version); and veyed. For larger provinces and disease sites where the num- (3) pre-addressed, pre-paid return envelope. Ontario differed ber of eligible survivors was anticipated to be greater than the from all provinces by using a double consent process. required number, a random sample within the cancer disease The survey was offered in English across all provinces site was chosen. The sample would be sufficient to achieve except New Brunswick and Quebec. New Brunswick mailed precision at least ± 3% by disease site for all provinces com- English and French survey versions to all recipients. Quebec bined. A total of 40,790 survey packages were mailed out recorded language preferences in their sample pull and mailed across the 10 provinces. roughly 25% in English. However, any recipient across the country could request a French survey version. Survey dissemination The Research Coordinators managed project-specific pro- vincial phone lines to provide assistance to respondents. Data The survey was disseminated through each provincial cancer were collected in 2016 in parallel for 18–19 weeks in 7 prov- agency/registry and customized as required. Each province inces, 8 weeks in Quebec, 9 weeks in British Columbia, and 15 weeks in Ontario. mailed a survey package to the survivor’s residence to 2980 Support Care Cancer (2019) 27:2977–2986 Analysis Of the adult sample, 51% were females and 60% were 65 years of age or older (see Table 1). Ninety-two percent This manuscript is focused on the initial question regarding reported that their diagnosis occurred between 2012 and unmet needs for the adult respondents. Data were analyzed 2014 and 77% indicated that they had not experienced meta- using SAS 9.4. Descriptive statistics were used to summarize static disease. Breast cancer (29%) and prostate cancer (24%) data. The frequency of individual needs was calculated sepa- survivors constituted the largest respondent groups. Of note, rately within each domain (physical, emotional, practical) and 14% of the respondents reported having more than one cancer the corresponding level of concern and help-seeking for each and 65% reported experiencing co-morbid conditions (i.e., need determined by crosstabs. Concerns identified by respon- cardiovascular or hypertension = 30% and arthritis or rheu- dents in the ‘big’ category were treated as ‘severe’ and ‘diffi- matic disease = 28%). The majority received some form of culty getting help’ included responses ‘hard’, ‘very hard’,and treatment (e.g., surgery, radiation, chemotherapy, hormonal ‘did not get help’. ‘Unmet need’ was defined as the percent- therapy) with 4% indicating that they had not received cancer ages of respondents who did not receive help regardless of treatment. Approximately 72% indicated their last treatment whether or not they sought help. Unmet needs were rank- occurred between 1 and 5 years ago. Overall, three-quarters of ordered by the number who experienced a concern (magni- the respondents reported that their physical and emotional tude of concern) and the percentages of those respondents health was good/very good and 82% rated their quality of life who did not receive help. The frequency of response for each as good/very good. informational item was calculated. Because of the different format for these items, ‘unmet need’ included the negative Physical changes responses (i.e., ‘disagree’, ‘strongly disagree’) and percent- ages of negative responses were rank-ordered. The majority of respondents (87%) experienced at least one physical symptom while 58% experienced 3 or more. On av- Sample limitations erage, 3.8 physical symptoms were reported by those with at least one symptom. The most common symptoms across all Confidentiality issues limited information about characteris- cancer sites were fatigue/tiredness (67%), change in sexual tics of survivors that could be shared with the vendor. As a function/activity (44%), and change in memory/concentration result, there was insufficient detail to allow weighting of sur- (39%), and nerve problems (36%) (see Table 2). veys to make them representative of all Canadian survivors. Of individuals who were concerned about a physical symp- Further, although the intention of sampling was to target five tom, the highest percentage who expressed having a ‘big’ disease sites and survivors 1–3 years post-treatment, self- concern cited changes in sexual function/activity (45%), reported survey data revealed that just under 10% of survivors hormonal/menopause or fertility (37%), and fatigue/tiredness indicated they had a cancer site outside the five targeted, and (33%). Gastrointestinal problems (63%) and pain (61%) were only 48% reported being between 1 and 3 years post-treat- the symptoms for which respondents most frequently sought ment. Analysis of missing data patterns revealed that data help. However, more than one-third of respondents who were not missing completely at random, emphasizing that this sought help indicated that it was difficult to obtain for most sample should not be generalized to represent all survivors in of their symptoms. Seeking help for changes in concentration Canada. Unweighted data from all survey respondents are and memory was particularly challenging (48% experienced presented. 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 Results expect and they did not think anything could be done. Ten percent said they did not want to ask for help. Sample-selected demographics Emotional changes A total of 40,790 survey packages were mailed out across the ten provinces and 12,929 surveys were completed by adults The majority of respondents (78%) experienced at least one (age 30+ years), and 329 surveys were completed by adoles- emotional issue with 42% experiencing 3 or more. On aver- cents and young adults (18 to 29 years) giving an overall age, 3.3 emotional issues were reported by those with at least response rate of 33%. The final sample includes all respon- one concern (see Table 3). Many survivors (68%) reported dents who returned a paper copy by mail or accessed the suffering from anxiety and worry about cancer recurrence. survey on-line and completed the initial demographic infor- Additionally, 42% experienced changes in sexual intimacy mation. Eighty-two percent (82%) of the respondents returned and 46% reported changes in depression, sadness, and loss their survey by mail. of interest in daily activities. Support Care Cancer (2019) 27:2977–2986 2981 Table 1 Description of the adult survey sample (N = 12,929) Table 1 (continued) Characteristic N % Characteristic N % Sex Time since treatment - < 1 year 1483 11.5 - Male 6272 48.5 - Female 6614 51.2 - 1 year to < 3 years 5960 46.1 - Prefer not to answer 43 0.3 - 3 years or more 3127 24.2 Age - Did not receive treatment 1851 14.3 - 30-54 1802 13.9 - Missing 508 3.9 - 55-74 7853 60.7 Type of treatment received - 75 and over 3274 25.3 - Surgery only 3602 27.9 Marital status - Drug therapy only (chemo/non-chemo) 968 7.5 - Single 765 5.9 - Radiation therapy only 1321 10.2 - Married/partnered 9570 74.0 - Combination therapy/other 5957 46.1 - No treatment/no plan for tx/active 548 4.2 - Separated/divorced/widowed 2487 19.2 surveillance - Prefer not to answer 107 0.8 - Missing 533 4.1 Education Comorbidities (4 most common) - High school or less 7358 56.9 - Cardiovascular or heart condition; 3863 29.9 - Post-secondary degree (college/university) 3959 30.6 hypertension or high blood pressure - University graduate degree 1097 8.5 - Arthritis, osteoarthritis, or other 3569 27.6 rheumatic disease - Missing 515 4.0 - Diabetes 1539 11.9 Income - Mental health issues 1232 9.5 -< $25,000 1643 12.7 General physical health - $25,000 to < $50,000 3019 23.4 - Very poor/poor 488 3.8 - $50,000 to < $75,000 2094 16.2 - Fair 2841 22.0 - $75,000 or more 3126 24.2 - Good/very good 9539 73.8 - Prefer not to answer 2567 19.9 - Missing 61 0.5 - Missing 480 3.7 General emotional health Employment - Very poor/poor 452 3.5 - Employed (full time, part time, paid leave) 4010 31.0 - Fair 2256 17.5 - Not in paid employment (homemaker, 8148 63.0 - Good/very good 9617 74.4 student, retired) - Unemployed 296 2.3 - Missing 604 4.7 - Missing 475 3.7 Overall quality of life Place of residence - Very poor/poor 268 2.1 - Rural (community < 10,000) 4564 35.3 - Fair 2007 15.5 - Urban (community ≥ 10,000) 7965 61.6 - Good/very good 10,619 82.1 - Missing 400 3.1 - Missing 35 0.3 Disease site Percentages add up to more than 100% because patient/survivors can be - Breast 3751 29.0 included in more than one site if they chose two or more. The Other - Prostate 3064 23.7 category contains those who chose a site (one or multiple) that was not - CRC 2576 19.9 one of the five shown here - Hematological 1077 8.3 - Melanoma 1494 11.6 -Other 464 3.6 Of those who experienced concerns, 37% identified chang- - Missing 777 6.0 es in sexual intimacy of greatest concern. About a third of Metastases survivors sought help regarding sexual intimacy (31%), stress - No metastases 9906 76.6 (31%), or depression (34%). Of those who did seek help, - Living with metastases 1175 9.1 about 25% experienced difficulty in obtaining assistance or -Unsure 1098 8.5 did not receive it. - Missing 750 5.8 Ninety-four percent of those with emotional concerns indi- cated the reason they did not ask for help; 22% indicated that 2982 Support Care Cancer (2019) 27:2977–2986 Table 2 Prevalence of physical symptoms and access to help in adult survey sample Physical Symptoms Number of Number of %of those %of those %ofthose with % of those who respondents respondents experiencing experiencing a concern about a sought help for who answered indicating a aconcern concern about physical symptom their concern question concern about about a physical a physical who sought help that experienced aphysical symptom whose symptom difficulty (hard symptom (mild, concern was ‘big’ whose concern or very hard to moderate, or big) was ‘moderate’ find help/no help obtained) Fatigue or tiredness 12,021 8102 (67%) 2678 (33%) 3231 (40%) 2975 (38%) 1093 (37%) N =7748 N =2944 Changes in sexual 11,967 5321 (44%) 2375 (45%) 1653 (31%) 2042 (40%) 740 (36%) activity or function N =5124 N =2028 Changes to concentration 11,877 4593 (39%) 970 (21%) 1627 (35%) 1188 (27%) 564 (48%) or memory N =4369 N = 1175 Nerve problems 11,868 4326 (36%) 1087 (25%) 1481 (34%) 2230 (54%) 877 (40%) N =4168 N =2211 Gastrointestinal 11,889 4292 (36%) 1242 (29%) 1556 (36%) 2617 (63%) 699 (27%) problems N =4131 N =2596 Bladder or urinary 11,935 4156 (35%) 1140 (27%) 1486 (36%) 2334 (58%) 505 (22%) problems N =3991 N =2314 Chronic pain or long 11,819 4014 (34%) 1046 (26%) 1442 (36%) 2363 (61%) 829 (35%) term pain N =3867 N =2341 Hormonal, menopause 11,632 2947 (25%) 1102 (37%) 1009 (34%) 1466 (51%) 505 (35)% or fertility N =2847 N =1453 Lymphedema 11,771 2699 (23%) 696 (26%) 936 (35%) 1671 (63%) 397 (24%) N =2636 N =1659 Note that only those who answered relevant question(s) were included. N refers to the denominator for each concern someone had told them it was normal to experience emotional Information availability concerns, or they did not want to ask (18%). The majority of survivors agreed/somewhat agreed that the information they needed was available to them (85%), the Practical challenges information they received was useful (85%), and information about side effects was available (81%). More than half found Almost half of the respondents (44%) experienced at least one information about cancer recurrence (62%) and community practical challenge with 13% experiencing 3 or more. One in resources (58%) was available. Overall, more survivors five survivors (22%) reported challenges returning to work or agreed that useful information about physical concerns school while 21% faced challenges getting to and from ap- (75%) was available to them than about emotional (54%) or pointments and 20% paying for health care. On average, two practical (54%) concerns. practical concerns were reported by survivors with at least one concern (see Table 4). Unmet need Of those who faced practical challenges, returning to work (41%) and getting life insurance (36%) were common issues Table 5 presents the number of respondents concerned about a and about a third sought help. The largest proportion sought change and the percent of those individuals who did not re- help for getting to and from appointments (43%). Of those ceive help, regardless of whether they sought help or not. In who sought help, the largest percent who experienced diffi- total, 7717 individuals identified fatigue as a concern, while culty was getting help obtaining insurance (67%) or paying 7327 identified anxiety. Overall, more individuals expressed for health care bills (53%). concern about physical changes than emotional and practical Of those who had concerns, 94% indicated the reason they ones. did not ask for help was because they did not want to ask The proportion of individuals expressing concern but not (16%) or they did not know about services available to help receiving help was highest in both emotional and practical them (18%). domains, ranging from a low of 59% (getting to and from Support Care Cancer (2019) 27:2977–2986 2983 Table 3 Prevalence of emotional issues and access to help in adult survey sample Emotional issues Number of Number of % of those %of those %of those with %of those who respondents respondents experiencing experiencing a concern about sought help for who answered indicating a a concern about concern about an an emotional their concern that question concern about an emotional emotional issue issue who experienced an emotional issue whose whose concern sought help difficulty (hard issue (mild, concern was was ‘moderate’ or very hard to moderate or big) ‘big’ find help/no help obtained) Anxiety, stress, worry about 11,309 7657 (68%) 1825 (24%) 2663 (35%) 2278 (31%) 509 (22%) cancer returning N =7341 N =2264 Depression, sadness, loss 11,038 5106 (46%) 1093 (21%) 1865 (37%) 1677 (34%) 405 (24%) of interest in everyday things N =4964 N =1666 Changes in sexual intimacy 12,043 5025 (42%) 1879 (37%) 1571 (31%) 1468 (31%) 544 (37%) N =4786 N =1452 Changes in body image (i.e., 12,093 4670 (39%) 1111 (24%) 1459 (31%) 979 (22%) 369 (38%) confidence in appearance, etc.) N =4385 N =971 Changes in relationship with 12,141 3879 (32%) 840 (22%) 1319 (34%) 784 (21%) 277 (36%) family, partners N =3715 N =775 Changes in relationship with 12,082 2523 (21%) 353 (14%) 777 (31%) 338 (14%) 139 (41%) friends or co-workers N =2372 N =337 Note that only those who answered relevant question(s) were included. N refers to the denominator for each concern appointments) to a high of 88% (relationships with friends and Canadian cancer survivors and a foundation for future pro- colleagues). Within the physical domain, across all changes, gram development/policy action. Response rates varied from more than 40% of individuals did not receive help for the province to province and provided an opportunity for insight concerns they experienced. into on-line versus paper-based dissemination, and the use of reminder letters versus telephone calls for future surveys. The final adult sample has a balance of men and women with Discussion varied demographic characteristics and provided perspectives on the survivor experience. Overall, respondents rated them- The Transitions Study is the first time a national survey was selves as experiencing fairly high physical and emotional conducted. The results provide insight into the experiences of health as well as experiencing good quality of life. However, Table 4 Prevalence of practical challenges and access to help in adult survey sample Practical challenges Number of Number of % of those %of those %of those % of those who respondents respondents experiencing experiencing with a concern sought help for who answered indicating a a concern concern about about a practical their concern question concern about about a practical a practical challenge who that experienced apractical challenge whose challenge sought help difficulty (hard challenge they concern was ‘big’ whose concern or very hard to experience (mild, was ‘moderate’ find help/no help moderate, or big) obtained Returning to work or school, 11,877 2636 (22%) 1076 (41%) 790 (30%) 841 (33%) 299 (36%) now or in the future N =2574 N =836 Getting to and from appointments 12,019 2558 (21%) 476 (19%) 874 (34%) 1031 (43%) 262 (26%) N =2388 N =1020 Paying for health care bills 11,958 2402 (20%) 587 (24%) 792 (33%) 818 (37%) 430 (53%) N =2227 N =809 Difficulty getting health or 11,838 1859 (16%) 671 (36%) 529 (28%) 536 (31%) 355 (67%) life insurance N =1750 N =532 Taking care of children, elders 11,877 1529 (13%) 364 (24%) 496 (32%) 419 (29%) 163 (39%) or other family members N =1443 N =414 Note that only those who answered relevant question(s) were included. N refers to the denominator for each concern 2984 Support Care Cancer (2019) 27:2977–2986 Table 5 Summary of unmet needs in adult survey sample Number of respondents Of those who were concerned who were concerned about who did not get help, regardless this need (mild, moderate or big) of whether they sought help Changes in relationships with friends and colleagues (E) 2371 2081 (88%) Changes to body image (i.e., confidence in appearance, etc.) (E) 4377 3529 (81%) Changes in relationships with family, partners (E) 3706 3010 (81%) Changes to concentration, memory (Ph) 4356 3435 (79%) Difficulty getting health or life insurance (Pr) 1746 1338 (77%) Changes in sexual intimacy (E) 4770 3523 (74%) Taking care of children, elders or other family members (Pr) 1438 1050 (73%) Anxiety, stress, worry about cancer returning (E) 7327 5216 (71%) Returning to work or school,, now or in the future (Pr) 2569 1791 (70%) Paying health care bills (Pr) 2218 1548 (70%) Fatigue/tiredness (Ph) 7717 5270 (68%) Depression, sadness, loss of interest in everyday things (E) 4953 3388 (68%) Changes in sexual activity or function (Ph) 5110 3371 (66%) Getting to and from appointments (Pr) 2377 1404 (59%) Nerve problems (Ph) 4149 2327 (56%) Hormonal, menopause or fertility (Ph) 2834 1552 (55%) Bladder or urinary problems (Ph) 3971 1819 (46%) Chronic pain or long term pain (Ph) 3845 1731 (45%) Lymphedema (Ph) 2624 1091 (42%) Gastrointestinal problems (Ph) 4110 1689 (41%) Ph physical symptom, E emotional issue, Pr practical challenge there was clear indication that large numbers of individuals The challenge is how to identify these changes early and be expressed physical, emotional, and practical changes that prepared to assess and intervene before the changes become were concerning yet they could not get help. Additionally, insurmountable issues. percentages of physical and emotional symptoms were higher Similarly, the emotional changes reported mirror other than reported for the general Canadian population [29]. needs-based studies [3, 13, 18, 20]. The reported levels of There was a significant proportion of older adults living anxiety and depression emphasize the magnitude of emotional with other disease conditions that may include symptoms such turmoil that may continue following treatment. The emotional as pain, mobility limitations, fatigue, and emotional distress impact of changes in sexual intimacy, body image, and rela- [29]. Isolating symptoms related to cancer may not have been tionships was described less frequently in other studies. It has easy for respondents and may have led to over-reporting in been argued that these changes emerge more clearly for cancer some cases. Nonetheless, living with co-morbidities is a real- survivors after treatment is over and efforts are made to return ity for these survivors and add to the complexities of recovery to a ‘normal’ pattern of living. To improve survivor experi- and coping with the aftermath of cancer. It implies the need for ences, it may be useful to alert cancer patients to these realities collaboration between medical specialties. and identify those with concerns as early as possible. The types of physical changes respondents reported are A number of practical issues were identified in previous mirrored in other needs-based surveys [2, 9, 18–20, 22]and studies (e.g., travel for appointments, out-of-pockets costs, reflect a cross-sectional sample of cancer types, stages, and insurance difficulties, assistance with daily chores) [11, 15, treatment modalities. Fatigue, cognitive effects, and pain have 20]. Return to work or school for cancer survivors has seen been reported frequently; however, changes in sexuality and an increasing amount of attention in recent years and is a neuropathy are emerging and require attention. Understanding significant challenge for survivors [3, 14, 20]. Given the pro- the level of the person’s concern (small, moderate, or big) portion of older and retired adults in this sample, return to regarding physical changes offers insight into potential impact work issues may be under-reported in this study. on daily life. Survivors become acutely aware of what func- The results regarding difficulty in seeking and finding help, tions may no longer be possible following the completion of and the proportion of individuals who did not receive help (whether they asked or not), revealed that many survivors treatment and the reality of physical and emotional changes. Support Care Cancer (2019) 27:2977–2986 2985 Funding information The study was funded by the Canadian Partnership are not receiving the kind of help that would ease their transi- Against Cancer. Each of the provincial sites received proportional tion and recovery after cancer treatment. Strategies to identify funding to send out the surveys. The Canadian Partnership Against those at risk for experiencing difficulties, if implemented prior Cancer is an independent organization funded by the federal government to the time of transition, could offset or mitigate challenges or to accelerate action on cancer control for all Canadians. prevent them from emerging later. The reasons survivors cited not asking for help were Compliance with ethical standards concerning and have implications for practice. Health care Conflict of interest The Canadian Partnership Against Cancer has full providers need to be knowledgeable about the potential for control of the primary unidentifiable record level data and agree to allow issues to arise and what can be done about them. the journal to review the data if requested. The issues that survivors identified and their experience in getting help highlights how survivorship care is organized Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http:// within cancer programs and in primary care settings. Various creativecommons.org/licenses/by/4.0/), which permits unrestricted use, models of survivorship care have been developed and evi- distribution, and reproduction in any medium, provided you give appro- dence about their success is emerging, but uptake and imple- priate credit to the original author(s) and the source, provide a link to the mentation has been slow [24]. Creative Commons license, and indicate if changes were made. This study generated a wealth of data and future steps can include analysis of various subgroups such as age, sex, spe- Publisher’snote Springer Nature remains neutral with regard to jurisdic- cific disease site, treatment modality, time since diagnosis, and tional claims in published maps and institutional affiliations. comorbidity. Additionally, analysis could be completed for each province to inform provincial level policy. References 1. Canadian Cancer Society (2017) Canadian Cancer statistics 2017. Study limitations Canadian Cancer Society, Toronto 2. Armes J, Crowe M, Colbourne L, Morgan H, Murrels T, Oakley C Several limitations exist. The survey was provided in English et al (2009) Patient’s supportive care needs beyond the end of can- and French only and was not offered in a format accessible for cer treatment: a prospective longitudinal study. J Clin Oncol 27: those with certain disabilities. The survey was relatively long 6172–6179. https://doi.org/10.1200/JCO.2009.22.5151 3. Burg MA, Adorno G, Lopez ED et al (2015) Current unmet needs and likely led to missing data. The results included some data of cancer survivors: analysis of open-ended responses to the from participants that cannot be validated (i.e., disease status, American Cancer Society study of Cancer survivors II. Cancer treatment received). Some respondents did not interpret ques- 121:623–630 tions as the research was intended. For example, a proportion 4. Ferrel B, Smith SL, Cullinane CA, Melanson C (2003) of respondents may have misinterpreted Btreatment^ without Psychologcial wellbeing and quality of life in ovarian cancer sur- vivors. Cancer 98:1061–1071 considering Bsurgery^ as treatment, or misinterpreted Bactive 5. Kent EE, Arora NK, Rowland JH, Bellizzi KM, Forsythe LP, surveillance^ as follow-up care. Finally, some respondents Hamilton AS, Oakley-Girvan I, Beckjord EB, Aziz NM (2012) provided answers that seemed to reflect acute treatment rather Health information needs and health related quality of life in a than the period following treatment. Future surveys will need diverse population of long-term cancer survivors. Patient Educ Couns 89:345–352 to isolate time periods and cancer types. 6. Hewitt M, Greenfield S, Stovall E (eds) (2006) From cancer patient to cancer survivor: lost in transition. Institute of Medicine Washington, DC: The National Academies Press 7. Brennan ME, Butow P, Spillane AJ, Bolye FM (2010) Survivorship Concluding remarks care after breast cancer: follow-up practices of Australian health professionals’ and attitudes to a survivorship care plan. Asia Pac J This study was undertaken to provide a foundation for action. Clin Oncol 6:116–125 The perspectives of cancer survivors are needed to create ser- 8. Pauwels EE, Charlier C, de Bourdeaudhuij I et al (2013) Care needs vices that meet their needs. These general results indicate that after primary breast cancer treatment. Survivors’ associated sociodemographic and medical characteristics. Psychooncology many survivors have concerns about physical, emotional, and 22:125–132 practical issues yet are not receiving the help to reduce the 9. Gosain R, Miller K (2013) Symptoms and symptom management suffering from their concerns. It is imperative we take action in long-term cancer survivors. Cancer 19:405–409 to address this reality. 10. Caroll-Johnson RM, Gorman LM, Bush (eds) (2006) Psychosocial nd nursing care among the cancer continuum (2 Ed). Oncology Nursing Press Inc, Pittsburgh Acknowledgements The authors acknowledge the teams (investigators, coordinators, registry) in each province who worked with us on the 11. Butow PN, Phillips SF, Schweder J, White K, Underhill C, Transition study and all the respondents who shared their experiences Goldstein D (2012) Psycho-social well-being and supportive care by completing the mailed or on-line survey. needs of cancer patients living in urban and rural/regional areas: a 2986 Support Care Cancer (2019) 27:2977–2986 systematic review. Support Care Cancer 20:1–22. https://doi.org/ cloudfornt.net/sites/default/files/waht-we:do/reports/ LSSurvivorSurveyReport.final.pdf 10.1007/s00520-011-1270-1 12. Bernat JK, Wittman DA, Hawley ST, Hamstra DA, Helfand AM, 21. Santager et al Cognition Tech Work 2015. Retrieved from Http:// Haggstrom DA, Darwish-Yassine M, Skolarus TA (2016) link.springer.com/article/10.1007/s10111-014-0301-3 Symptom burden and information needs in prostate cancer survi- 22. Molassiotis A, Yates P, Li Q et al Mapping unmet supportive care vors: a case for tailored long-term survivorship care. BJU Int 118: needs, quality of life perceptions and current symptoms in cancer 372–378 survivors across the Asia-Pacific region: results from the interna- 13. Mikkelsen TH, Soundergaard J, Jensen AB, Olesen F (2008) tional STEP study. Ann Oncol:2017 Cancer rehabilitation: psychosocial rehabilitation needs after dis- 23. Campbell HS, Sanson-Fisher R, Turner D, Hayward L, Wang XS, charge from hospital. Scand J Prim Health Care 26:216–221 Taylor-Brown J (2010) Psychometric properties of cancer survi- 14. Nieuwenhuijsen K, Bos-Ransdorp B, Utterhoeve LL, Sprangers vors’ unmet needs survey. Support Care Cancer 19:221–230 MA, Verbeek JH (2006) Enhanced provider communication and 24. Rosenzweig MQ, Kota K, van Londen G (2017) Interprofessional patient education regarding return to work in cancer survivors fol- management of cancer survivorship: new models of care. Semin lowing curative treatment: a pilot study. J Occup Rehabil 16:647– Oncol Nurs 33:449–458 25. Brandenbarg D, Berendsen AJ, de Bock GH (2017) Patients’ ex- 15. Longo CJ, Fitch MI, Girgnon M, McAndrew A (2016) pectations and preferences regarding cancer follow-up care. Understanding the full breadth of cancer related patient costs in Maturitas 105:58–63 Ontario: a qualitative exploration. Support Care Cancer 24:4541– 26. Huibertse LJ, van Eenbergen M, de Rooij BH, Bastiaens MT, 4548. https://doi.org/10.1007/s00520-016-3293-0 Fossion LMCL, de la Fuente RB, Kil PJM, Koldewijn EL, Meier 16. Earle CC, Neville BA (2004) Under use of necessary care among AHP, Mommers RJM, Niemer AQ, Oddens JR, Oomens EHGM, cancer survivors. Cancer 101:1712–1719 Retrieved from http:// Prins M, de Roos KP, Thissen MRTM, Timmermans MWH, www3.interscience.willey.com/cgi-bin/fulltext/109609136/ Wijsman BP, van de Poll-Franse LV, Ezendam NPM (2017) PDFSTART Cancer survivors’ preference for follow-up care providers: a 17. Lerro CC, Stein KD, Smith T, Virgo KS (2012) A systematic review cross-sectional study from the population-based PROFILES-regis- of large scale surveys of cancer survivors conducted in North try. Acta Oncol 56:278–287 America, 2000-2011. J Cancer Survivorship 6:115–145. https:// 27. Fitch MI (2008) Supportive care framework. Can Oncol Nurs J 18: doi.org/10.1007/s11764-012-0214-1 6–14. https://doi.org/10.5737/1181912x181614 18. Cancer Control Queensland (2016) Retrieved from http://cancerqld. 28. Fitch MI, Ristovski-Slijepcevic S, Scalzo K, Bennie F, Nicoll I, org.au/research/viertel.cancer:research:centre/community: Doll R (2009) Cancer survivorship: creating a national agenda. engagement/survivor:study/ CanOncol NursJ19:55–59 19. NHS (2015) National Cancer Patient Experience Survey:2015 29. Health Status of Canadians 2016:Report of the chief public health Retrieved from http://www.ncpes.co.uk/Index.php/reports officer. Accessed at https://www.canada.ca/en/public-health/ 20. Livestrong Organization 2010) Challenges reported by post treat- corporate/publications/chief-public-health-officer-reports-state- ment cancer survivors in the LIVESTRONG surveys – a public-health-canada/2016-health-status-canadians.html LIVESTRONG report. Retrieved from https://dIunInybg8gi3x. http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png Supportive Care in Cancer Springer Journals

Experiences of adult cancer survivors in transitions

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References (30)

Publisher
Springer Journals
Copyright
Copyright © 2018 by The Author(s)
Subject
Medicine & Public Health; Oncology; Nursing; Nursing Research; Pain Medicine; Rehabilitation Medicine
ISSN
0941-4355
eISSN
1433-7339
DOI
10.1007/s00520-018-4605-3
Publisher site
See Article on Publisher Site

Abstract

Purpose To understand the experiences of adult cancer survivors as they transition from the end of cancer treatment to follow-up care as a basis for developing actionable recommendations to integrate cancer care delivery and survivorship care. Methods A national survey was conducted in collaboration with ten Canadian provinces to identify unmet needs and experiences with follow-up for cancer survivors between 1 and 3 years post-treatment. Surveys were available in English and French and completed either on paper or on-line. Samples were drawn from provincial cancer registries and packages distributed by mail. Results 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 (age 18 to 29 years) giving an overall response rate of 33.3%. For the purposes of this publication, the focus will be on the adult sample. In the adult cohort (age 30+ years), 51% of the sample were females, 60% were 65 years of age or older, and 77% had not experienced metastatic spread. Three-quarters reported their health as good/very good and 82% that their quality of life was good/very good. Overall, 87% experienced at least one physical concern, 78% experienced at least one emotional concern, and 44% experienced at least one practical concern. The average number of concerns reported for each domain ranged from 2.0 to 3.8. For those who sought help, a third experienced difficulty obtaining assistance or did not receive it. The most frequently cited reasons for not seeking help was that someone had told them what they were experiencing was normal. Conclusions The results indicate that many adult survivors have concerns about physical, emotional, and practical issues but are not receiving help to reduce their suffering. It is imperative we take action to correct this current reality. . . . . Keywords Cancer survivors Transitions in care Integrated care Survivorship care Follow-up care Introduction/purpose uncertainty, finding a ‘new normal’, returning to work or school, and fear of recurrence [10–14]. Many face significant Improved outcomes of cancer treatment have resulted in an financial challenges [15] and are more vulnerable to health- ever-growing number of individuals who are living with and related concerns than their healthy counterparts [16]. beyond cancer. There are more than 1.6 million Canadians Relatively little research has been conducted to understand who have had a cancer diagnosis and are living after treatment the experiences of survivors in accessing care following the [1]. completion of treatment [17] although several recent studies Cancer survivors experience varied and substantial impacts have moved in this direction in Australia [18], United on their quality of life [2–6]. Fatigue, cognitive changes, Kingdom [19], United States [3, 20], Denmark [21], and the lymphedema, and pain are frequently reported [7–9]. Asia Pacific Region [22]. These studies described significant Additionally, emotional distress emerges from living with survivor concerns, many of which remained unaddressed, and difficulties regarding access, professional responsiveness, co- ordination, communication, and involvement in care. To date, one Canadian study explored cancer survivors’ * Raquel Shaw Moxam Raquel.ShawMoxam@partnershipagainstcancer.ca needs [23] but experiences were not investigated and the sam- ple was small (n = 550). The growing cadre of cancer survi- vors has stimulated interest in finding care models whereby Bloomberg Faculty of Nursing, University of Toronto, the responsibility for survivorship care/follow-up care is Toronto, Canada 2 transitioned from specialist to primary care providers [24]. Canadian Partnership Against Cancer, Toronto, Canada 2978 Support Care Cancer (2019) 27:2977–2986 However, concerns have been voiced that this trend could & What are the needs of cancer survivors 1–3 years after increase gaps in survivorship care [25, 26]. treatment (physical, emotional, practical, and information- The Canadian Partnership Against Cancer (the Partnership) al)? What are the biggest unmet needs? held consultations in 2014 with over 75 experts on survivor- & Who are the most vulnerable cancer survivors? What per- ship, measurement, and cancer system planning. Participants sonal characteristics are associated with unmet needs/poor identified transitions, integration, and communication as key outcomes? areas for survivorship improvements but limited data on & What factors/system resources are correlated with needs follow-up and transitions between care providers was a sig- being met? Enablers/predictors of needs being met/ nificant gap. Given these observations, the Partnership under- positive outcomes achieved? took a national survey to understand the experiences of cancer survivors as they transition from cancer treatment to survivor- A literature review was conducted in 2015 to inform the ship care/follow-up care. Survivorship care or follow-up care conceptual framework for the survey [27, 28], to direct sub- is defined as care given to a patient after finishing cancer sequent consultations and guide the development of survey treatment and prior to identification of recurrent disease. The items. Both peer-reviewed and gray literature were accessed findings would be a basis for developing actionable recom- to identify existing research on patient/survivor needs, patient/ mendations on integrating cancer and survivorship care, ulti- survivor experience, and relevant survey instruments. The da- mately improving the experience of survivors. tabases 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 can- Methods cer survivors (11 adults, 4 AYA), clinicians (12), and system leaders (8) to gather feedback about the framework’s rele- Study design and participant eligibility criteria vance (Fig. 1). The survey items were crafted based on the framework, consultations, review of existing surveys, and in- A survey, Experience of Cancer Patients in Transition Study put from key stakeholder groups, through an iterative process. (‘Transitions Study’), was administered across ten Canadian Once finalized, the survey was translated into French using a Provinces. The survey focused on cancer survivors between 1 process that ensured content and semantic equivalence. An and 3 years following cancer treatment. The population and on-line survey version was designed in both languages. eligibility criteria included adult survivors (age 30+ years) of Cognitive interviews (60–90 min) were completed with 15 breast, prostate, colorectal, and melanoma diseases with no different cancer survivors who met the eligibility criteria to metastatic spread, and selected hematological (e.g., Hodgkin’s evaluate the survey’s meaningfulness, clarity, understandabil- lymphoma, diffuse B cell lymphoma, acute myelogenous leu- ity, and ease of completion. The survey underwent perfor- kemia, acute lymphocytic lymphocyte leukemia) cancers; and mance testing with 96 survivors, recruited to match the eligi- adolescents and young adults (AYA, 18 to 29 years) with all bility criteria. Only small adjustments to the survey were made non-metastatic cancer types except testes, where metastatic dis- following these evaluations. ease was included. For the purposes of this first paper from the The final version contained closed and open-ended items Transitions Study, and due to the magnitude of the dataset, the organized as about you, your health and well-being, about your focus will be on the adult population. history with cancer, health care providers who oversee your follow-up cancer care, overall experiences with follow-up, un- Governance structure derstanding changes in your life, access to follow-up cancer care plans/medical records, health insurance, socio- The Partnership collaborated with ten provincial cancer demographic questions, Internet use, and final comments. agencies/programs in this study. Each agency/program The paper survey took about 45 min to complete and the online appointed a primary investigator and research coordinator version took 30 min. The ten provinces submitted to ethics and for provincial planning, survey dissemination, and national privacy approvals prior to data collection. A copy of the survey agency interaction. A national Expert Panel provided overall is available on the Canadian Partnership Against Cancer advice with short-term working groups formed as required. System Performance site http://www.systemperformance.ca/ The Partnership hired a vendor to assist with survey design, transition-study/ distribution, and analysis. Sample selection Survey development Provincial staff drew eligible patients from provincial cancer The survey was designed to answer the following questions: registries based on eligibility criteria and linking to treatment Support Care Cancer (2019) 27:2977–2986 2979 Fig. 1 Conceptual framework for transitions study data to confirm that treatment had occurred and end of treat- survivors drawn from the registry database. All recipients, ment dates (defined for each disease type). The number of except in Quebec, had the option of completing the survey surveys was calculated for the adult sample such that 95% online. One reminder letter was sent to those who had not confidence intervals, for a percentage assumed to be 50%, responded approximately 4 weeks after the initial mailing. would have width no more than ± 5% by disease site and Quebec utilized telephone call reminders. province and assumed a response rate of 30%. Estimates of The survey package contained (1) a cover letter (custom- the number of eligible survivors for each province were based ized to provincial requirements with brief study description, on disease site prevalence at the national level and incidence confidentiality explanations, URL link and PIN to the by province. As smaller provinces were not likely to have encrypted online survey, consent documents in Ontario and enough survivors within disease sites to achieve desired con- Quebec); (2) paper survey copy with pre-printed barcode and fidence interval precision, all eligible survivors were sur- associated PIN (for those who preferred a paper version); and veyed. For larger provinces and disease sites where the num- (3) pre-addressed, pre-paid return envelope. Ontario differed ber of eligible survivors was anticipated to be greater than the from all provinces by using a double consent process. required number, a random sample within the cancer disease The survey was offered in English across all provinces site was chosen. The sample would be sufficient to achieve except New Brunswick and Quebec. New Brunswick mailed precision at least ± 3% by disease site for all provinces com- English and French survey versions to all recipients. Quebec bined. A total of 40,790 survey packages were mailed out recorded language preferences in their sample pull and mailed across the 10 provinces. roughly 25% in English. However, any recipient across the country could request a French survey version. Survey dissemination The Research Coordinators managed project-specific pro- vincial phone lines to provide assistance to respondents. Data The survey was disseminated through each provincial cancer were collected in 2016 in parallel for 18–19 weeks in 7 prov- agency/registry and customized as required. Each province inces, 8 weeks in Quebec, 9 weeks in British Columbia, and 15 weeks in Ontario. mailed a survey package to the survivor’s residence to 2980 Support Care Cancer (2019) 27:2977–2986 Analysis Of the adult sample, 51% were females and 60% were 65 years of age or older (see Table 1). Ninety-two percent This manuscript is focused on the initial question regarding reported that their diagnosis occurred between 2012 and unmet needs for the adult respondents. Data were analyzed 2014 and 77% indicated that they had not experienced meta- using SAS 9.4. Descriptive statistics were used to summarize static disease. Breast cancer (29%) and prostate cancer (24%) data. The frequency of individual needs was calculated sepa- survivors constituted the largest respondent groups. Of note, rately within each domain (physical, emotional, practical) and 14% of the respondents reported having more than one cancer the corresponding level of concern and help-seeking for each and 65% reported experiencing co-morbid conditions (i.e., need determined by crosstabs. Concerns identified by respon- cardiovascular or hypertension = 30% and arthritis or rheu- dents in the ‘big’ category were treated as ‘severe’ and ‘diffi- matic disease = 28%). The majority received some form of culty getting help’ included responses ‘hard’, ‘very hard’,and treatment (e.g., surgery, radiation, chemotherapy, hormonal ‘did not get help’. ‘Unmet need’ was defined as the percent- therapy) with 4% indicating that they had not received cancer ages of respondents who did not receive help regardless of treatment. Approximately 72% indicated their last treatment whether or not they sought help. Unmet needs were rank- occurred between 1 and 5 years ago. Overall, three-quarters of ordered by the number who experienced a concern (magni- the respondents reported that their physical and emotional tude of concern) and the percentages of those respondents health was good/very good and 82% rated their quality of life who did not receive help. The frequency of response for each as good/very good. informational item was calculated. Because of the different format for these items, ‘unmet need’ included the negative Physical changes responses (i.e., ‘disagree’, ‘strongly disagree’) and percent- ages of negative responses were rank-ordered. The majority of respondents (87%) experienced at least one physical symptom while 58% experienced 3 or more. On av- Sample limitations erage, 3.8 physical symptoms were reported by those with at least one symptom. The most common symptoms across all Confidentiality issues limited information about characteris- cancer sites were fatigue/tiredness (67%), change in sexual tics of survivors that could be shared with the vendor. As a function/activity (44%), and change in memory/concentration result, there was insufficient detail to allow weighting of sur- (39%), and nerve problems (36%) (see Table 2). veys to make them representative of all Canadian survivors. Of individuals who were concerned about a physical symp- Further, although the intention of sampling was to target five tom, the highest percentage who expressed having a ‘big’ disease sites and survivors 1–3 years post-treatment, self- concern cited changes in sexual function/activity (45%), reported survey data revealed that just under 10% of survivors hormonal/menopause or fertility (37%), and fatigue/tiredness indicated they had a cancer site outside the five targeted, and (33%). Gastrointestinal problems (63%) and pain (61%) were only 48% reported being between 1 and 3 years post-treat- the symptoms for which respondents most frequently sought ment. Analysis of missing data patterns revealed that data help. However, more than one-third of respondents who were not missing completely at random, emphasizing that this sought help indicated that it was difficult to obtain for most sample should not be generalized to represent all survivors in of their symptoms. Seeking help for changes in concentration Canada. Unweighted data from all survey respondents are and memory was particularly challenging (48% experienced presented. 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 Results expect and they did not think anything could be done. Ten percent said they did not want to ask for help. Sample-selected demographics Emotional changes A total of 40,790 survey packages were mailed out across the ten provinces and 12,929 surveys were completed by adults The majority of respondents (78%) experienced at least one (age 30+ years), and 329 surveys were completed by adoles- emotional issue with 42% experiencing 3 or more. On aver- cents and young adults (18 to 29 years) giving an overall age, 3.3 emotional issues were reported by those with at least response rate of 33%. The final sample includes all respon- one concern (see Table 3). Many survivors (68%) reported dents who returned a paper copy by mail or accessed the suffering from anxiety and worry about cancer recurrence. survey on-line and completed the initial demographic infor- Additionally, 42% experienced changes in sexual intimacy mation. Eighty-two percent (82%) of the respondents returned and 46% reported changes in depression, sadness, and loss their survey by mail. of interest in daily activities. Support Care Cancer (2019) 27:2977–2986 2981 Table 1 Description of the adult survey sample (N = 12,929) Table 1 (continued) Characteristic N % Characteristic N % Sex Time since treatment - < 1 year 1483 11.5 - Male 6272 48.5 - Female 6614 51.2 - 1 year to < 3 years 5960 46.1 - Prefer not to answer 43 0.3 - 3 years or more 3127 24.2 Age - Did not receive treatment 1851 14.3 - 30-54 1802 13.9 - Missing 508 3.9 - 55-74 7853 60.7 Type of treatment received - 75 and over 3274 25.3 - Surgery only 3602 27.9 Marital status - Drug therapy only (chemo/non-chemo) 968 7.5 - Single 765 5.9 - Radiation therapy only 1321 10.2 - Married/partnered 9570 74.0 - Combination therapy/other 5957 46.1 - No treatment/no plan for tx/active 548 4.2 - Separated/divorced/widowed 2487 19.2 surveillance - Prefer not to answer 107 0.8 - Missing 533 4.1 Education Comorbidities (4 most common) - High school or less 7358 56.9 - Cardiovascular or heart condition; 3863 29.9 - Post-secondary degree (college/university) 3959 30.6 hypertension or high blood pressure - University graduate degree 1097 8.5 - Arthritis, osteoarthritis, or other 3569 27.6 rheumatic disease - Missing 515 4.0 - Diabetes 1539 11.9 Income - Mental health issues 1232 9.5 -< $25,000 1643 12.7 General physical health - $25,000 to < $50,000 3019 23.4 - Very poor/poor 488 3.8 - $50,000 to < $75,000 2094 16.2 - Fair 2841 22.0 - $75,000 or more 3126 24.2 - Good/very good 9539 73.8 - Prefer not to answer 2567 19.9 - Missing 61 0.5 - Missing 480 3.7 General emotional health Employment - Very poor/poor 452 3.5 - Employed (full time, part time, paid leave) 4010 31.0 - Fair 2256 17.5 - Not in paid employment (homemaker, 8148 63.0 - Good/very good 9617 74.4 student, retired) - Unemployed 296 2.3 - Missing 604 4.7 - Missing 475 3.7 Overall quality of life Place of residence - Very poor/poor 268 2.1 - Rural (community < 10,000) 4564 35.3 - Fair 2007 15.5 - Urban (community ≥ 10,000) 7965 61.6 - Good/very good 10,619 82.1 - Missing 400 3.1 - Missing 35 0.3 Disease site Percentages add up to more than 100% because patient/survivors can be - Breast 3751 29.0 included in more than one site if they chose two or more. The Other - Prostate 3064 23.7 category contains those who chose a site (one or multiple) that was not - CRC 2576 19.9 one of the five shown here - Hematological 1077 8.3 - Melanoma 1494 11.6 -Other 464 3.6 Of those who experienced concerns, 37% identified chang- - Missing 777 6.0 es in sexual intimacy of greatest concern. About a third of Metastases survivors sought help regarding sexual intimacy (31%), stress - No metastases 9906 76.6 (31%), or depression (34%). Of those who did seek help, - Living with metastases 1175 9.1 about 25% experienced difficulty in obtaining assistance or -Unsure 1098 8.5 did not receive it. - Missing 750 5.8 Ninety-four percent of those with emotional concerns indi- cated the reason they did not ask for help; 22% indicated that 2982 Support Care Cancer (2019) 27:2977–2986 Table 2 Prevalence of physical symptoms and access to help in adult survey sample Physical Symptoms Number of Number of %of those %of those %ofthose with % of those who respondents respondents experiencing experiencing a concern about a sought help for who answered indicating a aconcern concern about physical symptom their concern question concern about about a physical a physical who sought help that experienced aphysical symptom whose symptom difficulty (hard symptom (mild, concern was ‘big’ whose concern or very hard to moderate, or big) was ‘moderate’ find help/no help obtained) Fatigue or tiredness 12,021 8102 (67%) 2678 (33%) 3231 (40%) 2975 (38%) 1093 (37%) N =7748 N =2944 Changes in sexual 11,967 5321 (44%) 2375 (45%) 1653 (31%) 2042 (40%) 740 (36%) activity or function N =5124 N =2028 Changes to concentration 11,877 4593 (39%) 970 (21%) 1627 (35%) 1188 (27%) 564 (48%) or memory N =4369 N = 1175 Nerve problems 11,868 4326 (36%) 1087 (25%) 1481 (34%) 2230 (54%) 877 (40%) N =4168 N =2211 Gastrointestinal 11,889 4292 (36%) 1242 (29%) 1556 (36%) 2617 (63%) 699 (27%) problems N =4131 N =2596 Bladder or urinary 11,935 4156 (35%) 1140 (27%) 1486 (36%) 2334 (58%) 505 (22%) problems N =3991 N =2314 Chronic pain or long 11,819 4014 (34%) 1046 (26%) 1442 (36%) 2363 (61%) 829 (35%) term pain N =3867 N =2341 Hormonal, menopause 11,632 2947 (25%) 1102 (37%) 1009 (34%) 1466 (51%) 505 (35)% or fertility N =2847 N =1453 Lymphedema 11,771 2699 (23%) 696 (26%) 936 (35%) 1671 (63%) 397 (24%) N =2636 N =1659 Note that only those who answered relevant question(s) were included. N refers to the denominator for each concern someone had told them it was normal to experience emotional Information availability concerns, or they did not want to ask (18%). The majority of survivors agreed/somewhat agreed that the information they needed was available to them (85%), the Practical challenges information they received was useful (85%), and information about side effects was available (81%). More than half found Almost half of the respondents (44%) experienced at least one information about cancer recurrence (62%) and community practical challenge with 13% experiencing 3 or more. One in resources (58%) was available. Overall, more survivors five survivors (22%) reported challenges returning to work or agreed that useful information about physical concerns school while 21% faced challenges getting to and from ap- (75%) was available to them than about emotional (54%) or pointments and 20% paying for health care. On average, two practical (54%) concerns. practical concerns were reported by survivors with at least one concern (see Table 4). Unmet need Of those who faced practical challenges, returning to work (41%) and getting life insurance (36%) were common issues Table 5 presents the number of respondents concerned about a and about a third sought help. The largest proportion sought change and the percent of those individuals who did not re- help for getting to and from appointments (43%). Of those ceive help, regardless of whether they sought help or not. In who sought help, the largest percent who experienced diffi- total, 7717 individuals identified fatigue as a concern, while culty was getting help obtaining insurance (67%) or paying 7327 identified anxiety. Overall, more individuals expressed for health care bills (53%). concern about physical changes than emotional and practical Of those who had concerns, 94% indicated the reason they ones. did not ask for help was because they did not want to ask The proportion of individuals expressing concern but not (16%) or they did not know about services available to help receiving help was highest in both emotional and practical them (18%). domains, ranging from a low of 59% (getting to and from Support Care Cancer (2019) 27:2977–2986 2983 Table 3 Prevalence of emotional issues and access to help in adult survey sample Emotional issues Number of Number of % of those %of those %of those with %of those who respondents respondents experiencing experiencing a concern about sought help for who answered indicating a a concern about concern about an an emotional their concern that question concern about an emotional emotional issue issue who experienced an emotional issue whose whose concern sought help difficulty (hard issue (mild, concern was was ‘moderate’ or very hard to moderate or big) ‘big’ find help/no help obtained) Anxiety, stress, worry about 11,309 7657 (68%) 1825 (24%) 2663 (35%) 2278 (31%) 509 (22%) cancer returning N =7341 N =2264 Depression, sadness, loss 11,038 5106 (46%) 1093 (21%) 1865 (37%) 1677 (34%) 405 (24%) of interest in everyday things N =4964 N =1666 Changes in sexual intimacy 12,043 5025 (42%) 1879 (37%) 1571 (31%) 1468 (31%) 544 (37%) N =4786 N =1452 Changes in body image (i.e., 12,093 4670 (39%) 1111 (24%) 1459 (31%) 979 (22%) 369 (38%) confidence in appearance, etc.) N =4385 N =971 Changes in relationship with 12,141 3879 (32%) 840 (22%) 1319 (34%) 784 (21%) 277 (36%) family, partners N =3715 N =775 Changes in relationship with 12,082 2523 (21%) 353 (14%) 777 (31%) 338 (14%) 139 (41%) friends or co-workers N =2372 N =337 Note that only those who answered relevant question(s) were included. N refers to the denominator for each concern appointments) to a high of 88% (relationships with friends and Canadian cancer survivors and a foundation for future pro- colleagues). Within the physical domain, across all changes, gram development/policy action. Response rates varied from more than 40% of individuals did not receive help for the province to province and provided an opportunity for insight concerns they experienced. into on-line versus paper-based dissemination, and the use of reminder letters versus telephone calls for future surveys. The final adult sample has a balance of men and women with Discussion varied demographic characteristics and provided perspectives on the survivor experience. Overall, respondents rated them- The Transitions Study is the first time a national survey was selves as experiencing fairly high physical and emotional conducted. The results provide insight into the experiences of health as well as experiencing good quality of life. However, Table 4 Prevalence of practical challenges and access to help in adult survey sample Practical challenges Number of Number of % of those %of those %of those % of those who respondents respondents experiencing experiencing with a concern sought help for who answered indicating a a concern concern about about a practical their concern question concern about about a practical a practical challenge who that experienced apractical challenge whose challenge sought help difficulty (hard challenge they concern was ‘big’ whose concern or very hard to experience (mild, was ‘moderate’ find help/no help moderate, or big) obtained Returning to work or school, 11,877 2636 (22%) 1076 (41%) 790 (30%) 841 (33%) 299 (36%) now or in the future N =2574 N =836 Getting to and from appointments 12,019 2558 (21%) 476 (19%) 874 (34%) 1031 (43%) 262 (26%) N =2388 N =1020 Paying for health care bills 11,958 2402 (20%) 587 (24%) 792 (33%) 818 (37%) 430 (53%) N =2227 N =809 Difficulty getting health or 11,838 1859 (16%) 671 (36%) 529 (28%) 536 (31%) 355 (67%) life insurance N =1750 N =532 Taking care of children, elders 11,877 1529 (13%) 364 (24%) 496 (32%) 419 (29%) 163 (39%) or other family members N =1443 N =414 Note that only those who answered relevant question(s) were included. N refers to the denominator for each concern 2984 Support Care Cancer (2019) 27:2977–2986 Table 5 Summary of unmet needs in adult survey sample Number of respondents Of those who were concerned who were concerned about who did not get help, regardless this need (mild, moderate or big) of whether they sought help Changes in relationships with friends and colleagues (E) 2371 2081 (88%) Changes to body image (i.e., confidence in appearance, etc.) (E) 4377 3529 (81%) Changes in relationships with family, partners (E) 3706 3010 (81%) Changes to concentration, memory (Ph) 4356 3435 (79%) Difficulty getting health or life insurance (Pr) 1746 1338 (77%) Changes in sexual intimacy (E) 4770 3523 (74%) Taking care of children, elders or other family members (Pr) 1438 1050 (73%) Anxiety, stress, worry about cancer returning (E) 7327 5216 (71%) Returning to work or school,, now or in the future (Pr) 2569 1791 (70%) Paying health care bills (Pr) 2218 1548 (70%) Fatigue/tiredness (Ph) 7717 5270 (68%) Depression, sadness, loss of interest in everyday things (E) 4953 3388 (68%) Changes in sexual activity or function (Ph) 5110 3371 (66%) Getting to and from appointments (Pr) 2377 1404 (59%) Nerve problems (Ph) 4149 2327 (56%) Hormonal, menopause or fertility (Ph) 2834 1552 (55%) Bladder or urinary problems (Ph) 3971 1819 (46%) Chronic pain or long term pain (Ph) 3845 1731 (45%) Lymphedema (Ph) 2624 1091 (42%) Gastrointestinal problems (Ph) 4110 1689 (41%) Ph physical symptom, E emotional issue, Pr practical challenge there was clear indication that large numbers of individuals The challenge is how to identify these changes early and be expressed physical, emotional, and practical changes that prepared to assess and intervene before the changes become were concerning yet they could not get help. Additionally, insurmountable issues. percentages of physical and emotional symptoms were higher Similarly, the emotional changes reported mirror other than reported for the general Canadian population [29]. needs-based studies [3, 13, 18, 20]. The reported levels of There was a significant proportion of older adults living anxiety and depression emphasize the magnitude of emotional with other disease conditions that may include symptoms such turmoil that may continue following treatment. The emotional as pain, mobility limitations, fatigue, and emotional distress impact of changes in sexual intimacy, body image, and rela- [29]. Isolating symptoms related to cancer may not have been tionships was described less frequently in other studies. It has easy for respondents and may have led to over-reporting in been argued that these changes emerge more clearly for cancer some cases. Nonetheless, living with co-morbidities is a real- survivors after treatment is over and efforts are made to return ity for these survivors and add to the complexities of recovery to a ‘normal’ pattern of living. To improve survivor experi- and coping with the aftermath of cancer. It implies the need for ences, it may be useful to alert cancer patients to these realities collaboration between medical specialties. and identify those with concerns as early as possible. The types of physical changes respondents reported are A number of practical issues were identified in previous mirrored in other needs-based surveys [2, 9, 18–20, 22]and studies (e.g., travel for appointments, out-of-pockets costs, reflect a cross-sectional sample of cancer types, stages, and insurance difficulties, assistance with daily chores) [11, 15, treatment modalities. Fatigue, cognitive effects, and pain have 20]. Return to work or school for cancer survivors has seen been reported frequently; however, changes in sexuality and an increasing amount of attention in recent years and is a neuropathy are emerging and require attention. Understanding significant challenge for survivors [3, 14, 20]. Given the pro- the level of the person’s concern (small, moderate, or big) portion of older and retired adults in this sample, return to regarding physical changes offers insight into potential impact work issues may be under-reported in this study. on daily life. Survivors become acutely aware of what func- The results regarding difficulty in seeking and finding help, tions may no longer be possible following the completion of and the proportion of individuals who did not receive help (whether they asked or not), revealed that many survivors treatment and the reality of physical and emotional changes. Support Care Cancer (2019) 27:2977–2986 2985 Funding information The study was funded by the Canadian Partnership are not receiving the kind of help that would ease their transi- Against Cancer. Each of the provincial sites received proportional tion and recovery after cancer treatment. Strategies to identify funding to send out the surveys. The Canadian Partnership Against those at risk for experiencing difficulties, if implemented prior Cancer is an independent organization funded by the federal government to the time of transition, could offset or mitigate challenges or to accelerate action on cancer control for all Canadians. prevent them from emerging later. The reasons survivors cited not asking for help were Compliance with ethical standards concerning and have implications for practice. Health care Conflict of interest The Canadian Partnership Against Cancer has full providers need to be knowledgeable about the potential for control of the primary unidentifiable record level data and agree to allow issues to arise and what can be done about them. the journal to review the data if requested. The issues that survivors identified and their experience in getting help highlights how survivorship care is organized Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0 International License (http:// within cancer programs and in primary care settings. Various creativecommons.org/licenses/by/4.0/), which permits unrestricted use, models of survivorship care have been developed and evi- distribution, and reproduction in any medium, provided you give appro- dence about their success is emerging, but uptake and imple- priate credit to the original author(s) and the source, provide a link to the mentation has been slow [24]. Creative Commons license, and indicate if changes were made. This study generated a wealth of data and future steps can include analysis of various subgroups such as age, sex, spe- Publisher’snote Springer Nature remains neutral with regard to jurisdic- cific disease site, treatment modality, time since diagnosis, and tional claims in published maps and institutional affiliations. comorbidity. Additionally, analysis could be completed for each province to inform provincial level policy. References 1. Canadian Cancer Society (2017) Canadian Cancer statistics 2017. Study limitations Canadian Cancer Society, Toronto 2. Armes J, Crowe M, Colbourne L, Morgan H, Murrels T, Oakley C Several limitations exist. The survey was provided in English et al (2009) Patient’s supportive care needs beyond the end of can- and French only and was not offered in a format accessible for cer treatment: a prospective longitudinal study. J Clin Oncol 27: those with certain disabilities. 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Supportive Care in CancerSpringer Journals

Published: Dec 26, 2018

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