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Abstract
Purpose To understand reasons why adult cancer survivors do not seek assistance as they transition from the end of cancer treatment to follow-up care. Understanding these reasons should inform survivorship care, help reduce the burden of suffering and increase quality of life for survivors.
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 one and 3 years post-treatment. The survey included open-ended questions to allow respondents to add topics of importance and details that offered a deeper insight into their experiences. This publication presents the analysis of the quantitative data and open-ended responses regarding reasons why the adult cancer population does not seek help with their concerns.
Results In total, 13 319 respondents answered the question about seeking help. 87% had a physical concern of which 76% did not seek help; 77% had an emotional concern of which 82% did not seek help; and 45% had a practical concern of which 71% did not seek help. Frequently identified reasons for not seeking help included being told it was normal and not thinking anything could be done, not wanting to ask, not thinking services were available, handling it on their own and not thinking it was serious enough to seek help.
Conclusions Survivors have multiple reasons for not seeking help for their concerns. These findings can be useful to healthcare providers in proactively identifying and addressing the needs of these survivors.
- cancer
- psychological care
- quality of life
- survivorship
- supportive care
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Footnotes
Contributors MIF, IN and GL undertook the planning of this paper. MIF was engaged in data collection and management and reviewed by GL. Analysis was conducted by MIF and GL and reviewed by IN. The first manuscript draft was prepared by MIF and reviewed by IN and GL. All authors reviewed and edited subsequent versions of the manuscript and gave final approval of the version to be published.
Funding Financial support for this study was provided by the Canadian Partnership Against Canncer.
Competing interests MIF received remuneration as a consultant from the Canadian Partnership Against Cancer.
Patient consent for publication Not required.
Ethics approval Ethics approval was given by the respective ethics boards of the 10 provincial cancer agencies that participated in survey distribution. Participants provided consent prior to engaging in the survey. University of Saskatchewan Behavioral Research Ethics Board (12 April 2016; BEH # 16-79); Comité d’éthique de l’Institut de la statistique du Québec (4 March 2016; approved by title); PEI Research Ethics Board (17 March 2016; approved by title); Ontario—Hamilton Integrated Research Ethics Board (5 April 2016; #1528); Newfoundland and Labrador Health Research Ethics Board (24 March 2016; #20216.080); University of Manitoba—Health Research Ethics Board (21 March 2016; HS19571 (H2016.114)); Health Research Ethics Board of Alberta—Cancer Committee (1 April 2016; HREBA.CC-16-0025); Nova Scotia Health Authority Research Ethics Board (11 April 2016; #1021104); New Brunswick—Corporate Privacy Office—Department of Health (25 May 2016; approved by title); British Columbia—Provincial Research Ethics Board (May 2016; approved by title).
Provenance and peer review Not commissioned; externally peer reviewed.
Data availability statement Data are available in a public, open access repository. The Partnership has full control of primary unidentifiable record level data and agrees to review of data if requested.