The unmet emotional, care/support, and informational needs of adult survivors of pediatric malignancies

Abstract

Purpose Describe the prevalence and predisposing factors for potentially modifiable unmet emotional, care/support, and information needs among adult survivors of childhood malignancies. Methods A randomly selected/stratified sample of participants in the Childhood Cancer Survivor Study (CCSS) responded to the CCSS-Needs Assessment Questionnaire (CCSS-NAQ) (n=1189; mean [SD] current age, 39.7 [7.7], range=26–61 years; 60.9% women; mean [SD] years since diagnosis, 31.6 [4.7]). Survivors self-reported demographic information, health concerns, and needs; diagnosis/treatment data were obtained from medical records. Adjusted proportional risk (PR) ratios were used to evaluate 77 separate needs. Results Fifty-four percent of survivors reported unmet psycho-emotional, 41%, coping, and 35%, care/support needs; 51%, 35%, and 33%, respectively, reported unmet information needs related to cancer/treatment, the health care system, and surveillance. Female sex and annual income <$60K were associated with multiple needs; fewer needs were linked to diagnosis/years since/ or age at diagnosis. Having moderate/extreme cancer-related anxiety/fear was associated with all needs, including a >6-fold increased prevalence for help dealing with “worry” (PR=6.06; 95% CI, 3.79 – 9.69), anxiety (PR=6.10; 95% CI, 3.82–9.72), a >5-fold increased prevalence for “needing to move on with life” (PR=5.56; 95% CI, 3.34–9.25), and dealing with “uncertainty about the future” (PR=5.50; 95% CI, 3.44–8.77). Radiation exposure and perceived health status were related to 42 and 29 needs, respectively. Conclusions Demographic factors, disease/treatment characteristics, and intrapersonal factors can be used to profile survivors’ unmet emotional, care/support, and information needs. Implications for Survivors These data can be used to enhance provider-survivor communication, identify at-risk subsamples, and appraise core intervention content.

Comprehensive assessments and related interventions to enhance the long-term outcomes of child, adolescent and young adult cancer survivors – presentation of the CARE for CAYA-Program study protocol and associated literature review

“…endocrine system, heart, bones, cognitive and neurological system and can cause secondary malignancies. Furthermore, CAYAs have a high rate of unmet psychosocial needs that are currently neither regularly assessed nor cared for [89]. Although CAYAs have faced a severe life-threatening disease in the early years of their lives, one third of survivors have a risky health behaviour and an unhealthy lifestyle [32].…”

Perceptions of future health and cancer risk in adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study

“…Other studies have found similar deficits in knowledge of treatment and the risk of late effects. [35][36][37][38][39] We examined levels of concern among childhood cancer survivors, which may be distinct from previous studies focused on high levels of worry as a threat to psychosocial well-being. 8,[10][11][12][13][14][15][16] Limited evidence suggests that survivors worry less about general health issues than those without a cancer history but have a higher degree of worry about cancer-specific issues such as recurrence or a new cancer.…”

Falling through the cracks. A thematic evaluation of unmet needs of adult survivors of childhood cancers

“…Many ASCCs live with treatment‐related health consequences including disease recurrence, fertility issues, and other chronic diseases . Psychosocial adjustment is also a significant health concern, being associated with delayed social maturation, academic and employment barriers, psychological disturbances, and health‐risk behaviors such as tobacco and alcohol abuse, inactivity, and obesity . Further, survivor uncertainty and fear of recurrence can interfere with activities of daily living .…”