Fear of recurrence among childhood cancer survivors and their parents: a systematic review
Angelina Bruseker, Trijntje S. van Meelen, George L. Burchell, Jacqueline M. Tromp, Johannes H. M. Merks, Jos A. M. BramerIntroduction: Fear of cancer recurrence (FCR) may cause psychological hardship among childhood cancer survivors (CCSs) and their parents. A better understanding of FCR is required to support early recognition and management strategies. This review aimed to determine (1) the prevalence of FCR in CCSs and their parents, (2) the prevalence of severe FCR and (3) the impact and effects of FCR.
Materials and methods: A systematic literature review was conducted according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Four databases were searched for studies reporting FCR data in CCSs or their parents. Quantitative and qualitative syntheses were included. Due to the substantial heterogeneity, ranges were reported rather than pooled means.
Results: Forty-one studies were included ( n of CCS = 7127, parents = 1696). There was substantial heterogeneity between studies. FCR prevalence ranged from 11.5 to 88.9% in CCS and 54.0–91.4% in parents. The range of FCR in adult CCS (66.0–88.3%) was higher compared to youth CCS (29.0–55.2%). The prevalence of severe FCR ranged from 0 to 20.1% in CCS and 9.0–10.0% in parents. FCR amount transformed to a 0–4 scale ranging between 0.4 and 2.3 in CCSs and 1.8–2.2 in parents. Physical symptoms, social cues and medical exams triggered or increased FCR. Higher FCR was associated with a lower quality of life (QoL) in the four studies that reported on QoL.
Conclusions: FCR in CCSs and their parents may be common and rise in prevalence as CCSs age. A considerable number may experience a substantial amount of FCR, which may impact their lives in various ways depending on the individual. The results suggest that early recognition and proper patient- and family-oriented treatment may be valuable. However, the results should be interpreted with caution due to the substantial amount of heterogeneity, emphasizing the importance of standardized definitions and measurement methods.