The biopsychosocial condition of childhood cancer survivors in the transition towards adult care: a national survey from the joint pediatric and adult transition care group

AbstractBackgroundTo provide successful transfer from childhood to adult-oriented healthcare is one of the priorities of survivorship care plans.PurposeThis study describes adolescent and young adult childhood cancer survivors’ conditions at the moment of the transition to adult care deepening their biological, psychological, social and assistant state and their associations with socio-demographic and clinical characteristics.MethodsA biopsychosocial check-list in four health domains (biological, psychological, social and assistant) was filled in by healthcare professionals (oncologists, psychologists, social workers and nurses) through qualitative interviews and clinical observations of 79 survivors (58% boys; Mage= 20 years old) at the moment of the transition from the Pediatric Oncology Unit to the Transition Unit of the Childhood Cancer Survivors.ResultsAt the moment of transition, 38% of survivors showed a positive condition in all the four health domains without any kind of impairment. Biological (37%) and psychological areas (44%) were found to be those with major incidence of impairments. Association phenomena were found between psychological and social condition (p < 0.05) and between social and assistant condition (p < 0.05). Biological condition was also significantly associated with the type of cancer (χ = 6,2414, p < 0.05).ConclusionAlthough many survivors entered in adult care system without any impairment, the biopsychosocial approach highlighted that there is a presence of impairments in at least one of the main health domains.

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Identifying Barriers Among Childhood Cancer Survivors Transitioning to Adult Health Care

Journal of Pediatric Oncology Nursing ◽

10.1177/1043454216631953 ◽

2016 ◽

Vol 34 (1) ◽

pp. 20-27 ◽

Cited By ~ 11

Author(s):

Joanne Quillen ◽

Holli Bradley ◽

Christina Calamaro

Keyword(s):

Health Care ◽

Cancer Survivors ◽

Childhood Cancer ◽

Online Survey ◽

Childhood Cancer Survivors ◽

Transition To Adult Care ◽

Adult Health ◽

Adult Care ◽

Convenience Sample ◽

Adult Health Care

The aim of this study was to identify and describe barriers of young adult childhood cancer survivors transitioning to adult health care within 5 years of leaving a pediatric oncology practice. Several barriers have been identified in the literature, but other obstacles as to why this vulnerable population may be avoiding health care are unknown. This is a descriptive pilot study of a convenience sample of childhood cancer survivors, currently 20 to 25 years of age, who were diagnosed at less than 21 years of age. The Transition to Adult Care Survey assessing survivor barriers is an online survey consisting of 15 questions, with a drop-down menu for answers and 2 open-ended questions. The survey was accessible by smartphone or computer. Standard descriptive statistics were used to describe variables of interest. Our population consisted of 48 childhood cancer survivors. Their mean age was 23.21 years. Only 74% reported following through with annual preventive screening, and 57% reported that they consider themselves at risk for further medical problems as a result of their cancer treatment. Lack of knowledge of the importance of health screening may be a potential barrier to consistent follow-up care.

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Preparing childhood cancer survivors for transition to adult care: The young adult perspective

Pediatric Blood & Cancer ◽

10.1002/pbc.26544 ◽

2017 ◽

Vol 64 (10) ◽

pp. e26544 ◽

Cited By ~ 12

Author(s):

Natasha N. Frederick ◽

Sharon L. Bober ◽

Lexie Berwick ◽

Mary Tower ◽

Lisa B. Kenney

Keyword(s):

Young Adult ◽

Cancer Survivors ◽

Childhood Cancer ◽

Childhood Cancer Survivors ◽

Transition To Adult Care ◽

Adult Care

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A Mobile Health and Social Media Physical Activity Intervention Among Adolescent and Young Adult Childhood Cancer Survivors

Case Medical Research ◽

10.31525/ct1-nct04089358 ◽

2019 ◽

Author(s):

Keyword(s):

Physical Activity ◽

Social Media ◽

Young Adult ◽

Cancer Survivors ◽

Childhood Cancer ◽

Mobile Health ◽

Physical Activity Intervention ◽

Childhood Cancer Survivors ◽

Adolescent And Young Adult

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Hypothalamic-Pituitary and Other Endocrine Surveillance Among Childhood Cancer Survivors

Endocrine Reviews ◽

10.1210/endrev/bnab040 ◽

2021 ◽

Author(s):

Laura van Iersel ◽

Renee L Mulder ◽

Christian Denzer ◽

Laurie E Cohen ◽

Helen A Spoudeas ◽

...

Keyword(s):

Cancer Survivors ◽

Childhood Cancer ◽

Healthcare Providers ◽

Clinical History ◽

Childhood Cancer Survivors ◽

Adolescent And Young Adult ◽

Endocrine Disorders ◽

Psychosocial Effects ◽

Increased Risk ◽

International Experts

Abstract Endocrine disorders in survivors of childhood, adolescent, and young adult (CAYA) cancers are associated with substantial adverse physical and psychosocial effects. To improve appropriate and timely endocrine screening and referral to a specialist, the International Late Effects of Childhood Cancer Guideline Harmonization Group (IGHG) aims to develop evidence and expert consensus-based guidelines for healthcare providers that harmonize recommendations for surveillance of endocrine disorders in CAYA cancer survivors. Existing IGHG surveillance recommendations for premature ovarian insufficiency, gonadotoxicity in males, fertility preservation, and thyroid cancer are summarized. For hypothalamic-pituitary (HP) dysfunction, new surveillance recommendations were formulated by a guideline panel consisting of 42 interdisciplinary international experts. A systematic literature search was performed in MEDLINE (through PubMed) for clinically relevant questions concerning HP dysfunction. Literature was screened for eligibility. Recommendations were formulated by drawing conclusions from quality assessment of all evidence, considering the potential benefits of early detection and appropriate management. Healthcare providers should be aware that CAYA cancer survivors have an increased risk for endocrine disorders, including HP dysfunction. Regular surveillance with clinical history, anthropomorphic measures, physical examination, and laboratory measurements is recommended in at-risk survivors. When endocrine disorders are suspected, healthcare providers should proceed with timely referrals to specialized services. These international evidence-based recommendations for surveillance of endocrine disorders in CAYA cancer survivors inform healthcare providers and highlight the need for long-term endocrine follow-up care in subgroups of survivors and elucidate opportunities for further research.

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Attitudes and experiences of childhood cancer survivors transitioning from pediatric care to adult care

Supportive Care in Cancer ◽

10.1007/s00520-018-4077-5 ◽

2018 ◽

Vol 26 (8) ◽

pp. 2743-2750 ◽

Cited By ~ 10

Author(s):

Beeshman S. Nandakumar ◽

◽

Joanna E. Fardell ◽

Claire E. Wakefield ◽

Christina Signorelli ◽

...

Keyword(s):

Cancer Survivors ◽

Childhood Cancer ◽

Childhood Cancer Survivors ◽

Pediatric Care ◽

Adult Care

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Randomized trial assessing the impact of survivorship care plans on the quality of care for childhood cancer survivors.

Journal of Clinical Oncology ◽

10.1200/jco.2016.34.15_suppl.10007 ◽

2016 ◽

Vol 34 (15_suppl) ◽

pp. 10007-10007

Author(s):

Cary Philip Gross ◽

Wilhelmenia Lee Ross ◽

Jaime L. Rotatori ◽

Hannah-Rose Mitchell ◽

Xiaomei Ma ◽

...

Keyword(s):

Quality Of Care ◽

Cancer Survivors ◽

Randomized Trial ◽

Childhood Cancer ◽

Childhood Cancer Survivors ◽

Survivorship Care Plans ◽

Survivorship Care ◽

Care Plans ◽

The Impact

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Evaluating sexual function in adolescent and young adult childhood cancer survivors.

Journal of Clinical Oncology ◽

10.1200/jco.2020.38.15_suppl.e24180 ◽

2020 ◽

Vol 38 (15_suppl) ◽

pp. e24180-e24180

Author(s):

Jenna Sopfe ◽

Rebekah Marsh ◽

Leslie C. Appiah ◽

James L. Klosky ◽

Pamela N Peterson ◽

...

Keyword(s):

Young Adult ◽

Cancer Survivors ◽

Childhood Cancer ◽

Screening Tool ◽

Childhood Cancer Survivors ◽

Adolescent And Young Adult ◽

Structured Interviews ◽

Written Information ◽

Promising Tool ◽

Prior Experiences

e24180 Background: Up to half of adolescent and young adult (AYA) childhood cancer survivors (CCS) experience sexual dysfunction (SD) as a result cancer or its treatment. SD in CCS is under-recognized, with low levels of routine screening due to barriers such as discomfort, time, and awareness. This study explores solutions to these barriers by describing AYA CCS preferences for implementation of screening for SD and evaluating the utility of a validated adult screening tool (PROMIS SexFS Brief) in this population. Methods: 16 AYA CCS (aged 15-24 years) completed semi-structured interviews followed by questionnaire completion. Interviews explored patients’ prior experiences with SD screening, along with preferences for screening type (e.g., discussion, screening tool), delivery modality, and timing. Patients then completed the PROMIS SexFS Brief while verbalizing their thoughts and providing open-ended responses to each item. Transcribed interviews were inductively coded and analyzed, guided by content analysis methodology. Results: This analysis represents 2/3 of planned interviews, and all will be completed by April 1, 2020. Interviews were performed with 11 females and 5 males (median age 21). Preliminary analysis demonstrates that participants had minimal experience with SD conversations, but had preferences regarding by whom, how, and when screening/education should occur. Who: Participants felt providers should have preexisting rapport with their patients; preferences existed for provider role and sex/age. How: A combination of written materials and in-person conversations was preferred. Several acknowledged a desire to have a “warning” that the conversation would happen, such as through a questionnaire. Participants did not have a preference regarding delivery modality (paper vs. online). The PROMIS SexFS Brief appeared to demonstrate content validity and acceptability in AYA CCS. When: Participants wanted education and screening to occur regularly throughout cancer therapy and survivorship. SD conversations should be tailored developmentally to the patient. Conclusions: Our results demonstrate a theme throughout interviews of the importance of patient/provider rapport. Further, while AYA CCS prefer in-person conversations about SD, conversations should be preceded by written information or a questionnaire to increase patient preparedness/comfort. Preliminary findings suggest that the PROMIS SexFS Brief is a promising tool for screening SD in this population; further studies evaluating use in clinical settings is warranted.

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