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. Author manuscript; available in PMC: 2017 Jan 18.
Published in final edited form as: Pediatr Blood Cancer. 2015 Dec;62(Suppl 5):S514–S584. doi: 10.1002/pbc.25783

TABLE I.

Psychosocial Follow-Up in Survivorship-Summary of Literature

Standard Evidence summary Methodology Quality of evidence Strength of recommendation
1. Long-term survivors of child and adolescent cancers should receive yearly psychosocial screening for:
(a) Adverse educational and/or vocational progress, social and relationship difficulties; Subsets have impaired social relationships, lower educational and vocational attainment, and impaired QoL due to psychological distress, medical late effects, or financial hardship. Multiple studies highlight identifiable and possible modifiable risk factors for poor QoL in CCS. Cross-sectional survey-based, descriptive, and qualitative studies were most common; several large survivorship cohort studies included. Few systematic reviews of descriptive studies; no experimental or quasi-experimental studies. Broad range of selected variables examined QoL. Moderate: consistent findings from lower level evidence studies. Strong: Recommendation applies to most patients in most circumstances, low risk and high benefit associated with guideline with potential health benefit for CCS and family. Further research needed to increase confidence in the estimate of effect and to inform future interventions.
(b) Distress, anxiety, and depression; Subsets of CCS are at higher risk for poor mental health outcomes, especially survivors of CNS tumors. Systematic reviews, cross-sectional survey-based, cohort, qualitative, and mixed methods studies. Many large survivorship cohort studies with controls are included of descriptive studies. High: consistent findings from multiple studies with large cohorts. More longitudinal studies are needed. Strong: Recommendation applies to all survivors, low risk and high benefit associated with guideline and potential health benefit for CCS. Future longitudinal research could better identify trajectory of distress and critical opportunities for intervention.
(c) Risky health behaviors. Heavy alcohol use, smoking, smokeless tobacco and dual tobacco use are similar or lower in CCS compared with peers or national norms. Some of the most medically vulnerable groups smoke and drink similarly to peers. Five of the seven studies were cross sectional, several with large samples and controls. One case-control design and one systematic review (COG) citing additional studies with strong methodology. High-moderate quality of evidence. Studies identified sub-groups at risk. Strong: Recommendation applies to all survivors. Low risk associated with guideline, high potential health benefit given possible synergistic health risks for CCS. Brief screeners exist but future research needed to test them in CCS population.
2. Adolescent and young adult survivors and their parents should receive anticipatory guidance on the need for life-long follow-up care by the time treatment ends, and repeated at each follow-up visit. Psychosocial variables impact uptake of follow-up care and readiness to transition to adult care. These include patient knowledge/perception of late effects, vulnerability, motivation to pursue follow-up care, and disease self-management/self- efficacy. Cross-sectional cohort, qualitative (focus groups and interviews), opinion Low to moderate: evidence for critical outcomes, from observational and cross-sectional studies. Strong: Recommendation applies to most survivors. Future research should assess the impact of transition readiness and receipt of LTFU care on long-term outcomes of CCS.

CCS, childhood cancer survivors; PTSD, post-traumatic stress disorder; CNS, central nervous system; HRQoL, health related; COG, Children’s Oncology Group; LTFU, long-term follow-up.