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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 < 0.001), lack of insurance (p = 0.002), and having had chemotherapy (p = 0.05). Participants reported varied experiences in terms of how health and treatment information was presented, from none or too little to overwhelming or anxiety-provoking amounts. Barriers to engaging in survivorship care included no/limited insurance, time, or transportation; major life changes; anxiety; and difficulty transitioning from pediatrics to adult care. Participants highlighted the need for educational and psychosocial resources, particularly technology-based resources. Multilevel interventions are needed to increase engagement in survivorship care among young adult cancer survivors. Technology-based resources addressing social support and mental well-being are intervention possibilities.

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:ImportanceChildhood cancer survivorship programs and long-term follow-up (LTFU) practices are inadequate in most regions of China.ObjectiveTo understand the clinician and caregiver perceptions of LTFU care and to identify barriers to adherence to LTFU care in mainland China.Design, setting, and participantsThis survey study had a 2-phase sequential mixed-methods approach, consisting of a cross-sectional survey followed by semistructured interviews. Participants included oncology clinicians recruited through an educational seminar on LTFU and caregivers recruited through convenience sampling. Data were collected from November 2022 to September 2023.Main outcomes and measuresThe clinician survey and interview focused on the standards and resources for LTFU care at their practicing institution and barriers to the coordination of LTFU care. For caregivers, the survey and interview focused on their awareness of and participation in LTFU care and their opinions on future LTFU care visits.ResultsA total of 101 clinicians (28 [27.7%] male; 73 [72.3%] female; 46 [45.6%] aged >40 to 50 years) completed the survey (response rate: 90.2%) representing 32 institutions from 22 provinces. As for the caregivers' survey, 164 eligible participants (36 [22.0%] male; 128 [78.0%] female) were recruited (response rate: 20.2%). The majority of the caregivers had received a high school or greater education (96 [56.7%]) and were parents of CCSs diagnosed with leukemia (67 [40.9%]), lymphoma or solid tumors (47 [28.7%]), or conditions requiring hematopoietic stem cell transplantation (50 [30.5%]). Most clinicians (74 [73.3%]) reported providing late effects care, yet only 10 (13.5%) had a dedicated follow-up clinic for CCSs. Two-thirds (64 [63.4%]) reported that the LTFU plan for each survivor is solely determined by their clinical judgment. In structured interviews, all doctors admitted to deviating from published guidelines due to challenges in implementing screening recommendations in their settings. Barriers to providing LTFU services included patient-related factors (76 [75.2%]), survivor knowledge deficits (61 [60.4%]), and the absence of dedicated LTFU clinics (61 [60.4%]). Among caregivers responding to the survey, 60 (36.6%) had never heard of late effects. Overall, 22 of 26 caregivers (84.6%) who participated in the interviews were not aware of potential late effects, although 17 (68.0%) could articulate existing conditions and symptoms that their children were experiencing.ConclusionsIn this mixed-methods study involving clinicians and caregivers, substantial disparities in the uniformity and accessibility of LTFU in China were observed, suggesting the imperative need for a standardized approach to LTFU care for survivors. This includes advocating for establishment of dedicated clinics, alongside an emphasis on enhanced education and training for both clinicians and caregivers.

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.

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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