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Young Adult Cancer Survivors' Experience with Cancer Treatment and Follow-Up Care and Perceptions of Barriers to Engaging in Recommended Care.

ABSTRACT: We examined correlates of low engagement in the healthcare system, experiences with survivorship care, barriers to follow-up care, and potential resources for promoting follow-up care among young adult survivors of childhood cancers. We conducted a mixed-method study involving surveys of 106 survivors of childhood cancer aged 18-34 recruited from a university-affiliated children's hospital and an NCI-designated cancer center in the Southeastern USA. Phone-based semistructured interviews were then conducted in a subset of 26. Assessments included health factors, psychosocial factors, healthcare system interaction, and interest in resources to promote engagement in healthcare. Survey participants were on average 22.14?(SD?=?3.16) years old, 50.0 % female, and 77.4 % White. Overall, 46.0 % had attended survivorship clinic, 47.2 % reported receiving a treatment summary, 68.9 % had a primary care provider, and 17.0 % reported no interaction with healthcare in the past 2 years. Correlates of less than annual healthcare provider visits included being older (p?=?0.003), being male (p?

SUBMITTER: Berg CJ

PROVIDER: S-EPMC4712118 | biostudies-literature | 2016 Sep

REPOSITORIES: biostudies-literature

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Young Adult Cancer Survivors' Experience with Cancer Treatment and Follow-Up Care and Perceptions of Barriers to Engaging in Recommended Care.

Berg Carla J CJ Stratton Erin E Esiashvili Natia N Mertens Ann A

Journal of cancer education : the official journal of the American Association for Cancer Education 20160901 3

We examined correlates of low engagement in the healthcare system, experiences with survivorship care, barriers to follow-up care, and potential resources for promoting follow-up care among young adult survivors of childhood cancers. We conducted a mixed-method study involving surveys of 106 survivors of childhood cancer aged 18-34 recruited from a university-affiliated children's hospital and an NCI-designated cancer center in the Southeastern USA. Phone-based semistructured interviews were the ...[more]

PMID: 25948413

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Project description:IntroductionAfter finishing cancer treatment, breast cancer survivors often experience both physical and psychosocial symptoms such as pain. In some, pain can persist for months or even years. Pain is a complex experience. Its occurrence and maintenance are explained through interactions between multiple factors, which are biological/physiological, psychological, and social in nature. Unaddressed needs related to this problem - such as insufficient pain relief, limited validation of the problem, and minimal physical and psychological support - may cause severe disability and negatively impact well-being and quality of life. This study investigated how breast cancer survivors perceive their (chronic) pain complaints to be addressed during follow-up care. Furthermore, we explored how they coped with the way their trajectories happened to unfold.MethodsWe conducted four focus groups with a total of thirty-one breast cancer survivors. Each focus group consisted of an asynchronous part with an online discussion platform and a synchronous part through video calls. Data analysis was guided by the Qualitative Analysis Guide of Leuven.ResultsNarratives revealed the unmet needs of survivors and showed variability in the lived experiences of having to deal with pain. Some survivors tend to ignore the pain, while others look for solutions to reduce pain. A third coping pattern is accepting pain and its impact. Furthermore, how survivors cope with pain is influenced by intrapersonal, interpersonal, and societal processes. For example, pain-related beliefs and prejudices among healthcare providers, family, friends, colleagues, other cancer survivors, and society could possibly steer a survivor towards a certain way of coping. In these processes, the role of healthcare providers seems pivotal. For instance, when survivors do not feel heard or taken seriously by healthcare providers, their acceptance of pain can be impeded.DiscussionTo conclude, a person's way of coping with pain and the associated needs is dynamic and influenced by factors at multiple levels such as the intrapersonal, interpersonal and societal level. To sufficiently address the problem of pain among cancer survivors, we therefore also need actions that tackle the health care system and its stakeholders, as well as the public debate concerning cancer follow-up care.

Project description:ImportanceHealth care systems focus on delivering routine cancer screening to eligible individuals, yet little is known about the perceptions of primary care practitioners (PCPs) about barriers to timely follow-up of abnormal results.ObjectiveTo describe PCP perceptions about factors associated with the follow-up of abnormal breast, cervical, colorectal, and lung cancer screening test results.Design, setting, and participantsSurvey study of PCPs from 3 primary care practice networks in New England between February and October 2020, prior to participating in a randomized clinical trial to improve follow-up of abnormal cancer screening test results. Participants were physicians and advanced practice clinicians from participating practices.Main outcomes and measuresSelf-reported process, attitudes, knowledge, and satisfaction about the follow-up of abnormal cancer screening test results.ResultsOverall, 275 (56.7%) PCPs completed the survey (range by site, 34.9%-71.9%) with more female PCPs (61.8% [170 of 275]) and general internists (73.1% [201 of 275]); overall, 28,7% (79 of 275) were aged 40 to 49 years. Most PCPs felt responsible for managing abnormal cancer screening test results with the specific cancer type being the best factor (range, 63.6% [175 of 275] for breast to 81.1% [223 of 275] for lung; P < .001). The PCPs reported limited support for following up on overdue abnormal cancer screening test results. Standard processes such as automated reports, reminder letters, or outreach workers were infrequently reported. Major barriers to follow-up of abnormal cancer screening test results across all cancer types included limited electronic health record tools (range, 28.5% [75 of 263]-36.5%[96 of 263]), whereas 50% of PCPs felt that there were major social barriers to receiving care for abnormal cancer screening test results for colorectal cancer. Fewer than half reported being very satisfied with the process of managing abnormal cancer screening test results, with satisfaction being greatest for breast cancer (46.9% [127 of 271]) and lowest for cervical (21.8% [59 of 271]) and lung cancer (22.4% [60 of 268]).Conclusions and relevanceIn this survey study of PCPs, important deficiencies in systems for managing abnormal cancer screening test results were reported. These findings suggest a need for comprehensive organ-agnostic systems to promote timely follow-up of abnormal cancer screening results using a primary care-focused approach across the range of cancer screening tests.

Dataset Information

Young Adult Cancer Survivors' Experience with Cancer Treatment and Follow-Up Care and Perceptions of Barriers to Engaging in Recommended Care.

Publications

Young Adult Cancer Survivors' Experience with Cancer Treatment and Follow-Up Care and Perceptions of Barriers to Engaging in Recommended Care.

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