Psychosocial functioning of parents of Dutch long‐term survivors of childhood cancer

Abstract

Objective: To describe health-related quality of life (HRQoL), post-traumatic stress and post-traumatic growth of parents of long-term survivors of childhood cancer (CCS) and study associated factors. Methods: Parents of survivors of the Dutch Childhood Cancer Survivor Study LATER cohort below 30 years and diagnosed 1986-2001 were invited to complete the TNO-AZL Questionnaire for Adult's HRQoL (e.g., sleep and aggressive emotions), Self-Rating Scale for Post-traumatic Stress Disorder, Post-traumatic Growth Inventory, and Illness Cognition Questionnaire. HRQoL domain scores were compared to references using Mann-Whitney U tests. Correlations between posttraumatic stress, growth and HRQoL were evaluated. Medical characteristics of their child and illness cognitions were studied as associated factors of HRQOL, posttraumatic stress and growth. p < 0.05 was considered statistically significant. Results: Parents (n = 661 of n = 448 survivors, 56% female, mean time since child's diagnosis: 21.3 [SD: 3.3] years) reported better HRQoL in social functioning andaggressive emotions than references (r = .08-0.17). Mothers additionally reported better HRQoL in pain, daily activities, sexuality, vitality, positive and depressive emotions (r = .07-0.14). Post-traumatic stress was symptomatic in 3%, and associated with worse HRQoL (r = −0.27-0.48). Post-traumatic growth was positively associated to post-traumatic stress and better HRQoL (r = 0.09-0.12). Cancer recurrence was associated to better HRQoL (β = 0.37-0.46). Acceptance illness A list of non-author study group members appears in the Acknowledgments.

Psychosocial functioning of adult siblings of Dutch very long‐term survivors of childhood cancer: DCCSS‐LATER 2 psycho‐oncology study

“…Concerning cancer‐related factors, we expected higher risk for siblings of CCS with CNS tumors, because of worse outcomes for CCS with CNS themselves. However, having a child with a CNS tumor was also not related to psychosocial functioning in parents of long‐term CCS 34 . Apart from an association of small to medium size between siblings of CNS CCS and pain, we found no associations between the outcomes and cancer‐related factors, which is substantiated in literature 8,11,35 …”

“…However, having a child with a CNS tumor was also not related to psychosocial functioning in parents of long-term CCS. 34 Apart from an association of small to medium size between siblings of CNS CCS and pain, we found no associations between the outcomes and cancer-related factors, which is substantiated in literature. 8,11,35 Following these results, factors that impact long-term psychosocial functioning of siblings of CCS might not differ from factors that impact the functioning of the general population.…”

“…Concerning methodology, one of the multivariate models could not be adjusted for dependency of siblings of the same CCS, but because the intra-class coefficient was not significant, a non-adjusted model could be used instead. 38 The internal consistency of two HRQOL scale scores were questionable (0.63 for aggressive emotions and 0.68 for pain), which means results should be interpreted with caution. Siblings were only eligible after the CCS gave consent, which may have caused selection bias.…”

Post‐traumatic growth in parents of long‐term childhood cancer survivors compared to the general population: A report from the Swiss childhood cancer survivor study—Parents

“…Although the dominant narrative around 'thinking positively' is not always helpful for cancer patients and their families as they go through treatment, 31 our data echoes other international studies in 32 and a recent study among CCSparents showed PTG associated with better health-related quality of life. 12 With parents expressing a wish for more psychological support, 33 mental health professionals can harness follow-up appointments as opportunities to engage people in envisioning their futures in concrete, adaptive ways to maximize their personal development. [34][35][36]…”

“…To date, most studies have assessed PTG in CCS‐parents shortly after treatment completion, and there is very limited evidence on how parents fare in the long‐term, decades after their child's illness (≥20 years) 12 . There is also a lack of research on PTG in the general population.…”