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Contains fulltext : 291391.pdf (Publisher’s version ) (Open Access) 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 post-traumatic stress, growth and HRQoL were evaluated. Medical characteristics of their child and illness cognitions were studied as associated factors of HRQOL, post-traumatic stress and growth. p

Contains fulltext : 251635.pdf (Publisher’s version ) (Open Access) PURPOSE: The study aimed to compare the psychosocial development of young adult survivors of childhood cancer (YACCS) with a norm group of young adults from the general population. METHODS: From 2017 to 2020, 558 YACCS (18-30 years, 51% female, 10.9% CNS cancer) who participated in the Dutch Childhood Cancer Survivor Study (DCCSS) LATER cohort (diagnosed 1963-2001) part 2 completed the Course of Life Questionnaire (CoLQ), assessing the achievement of milestones. Items were grouped into the scales autonomy, psychosexual, and social development. Differences between YACCS and norm group were examined with ANOVA and Cohen's d (CoLQ scales) and with logistic regression analysis and odds ratio (OR) (CoLQ items), for the total group and YACCS of CNS cancer. RESULTS: The total group of YACCS did not report a less favorable psychosocial development than the norm group. YACCS of CNS cancer scored lower than the norm group (p < 0.001) on the scales autonomy (d = - 0.36) and psychosexual (d = - 0.46). Additionally, on half of the items of autonomy (0.25 ≤ OR ≤ 0.34), psychosexual (0.30 ≤ OR ≤ 0.48), and social (0.23 ≤ OR ≤ 0.47) development, YACCS of CNS cancer were less likely (p < 0.01) than the norm group to have achieved the milestones. CONCLUSION: Overall, psychosocial development of YACCS was as favorable as the norm, but YACCS of CNS cancer were at risk of an unfavorable psychosocial development in all domains. Monitoring psychosocial development should be included in the standards of psychosocial care, especially for CNS cancer patients and survivors, to be able to trace delay. Personalized interventions should be offered to improve the psychosocial development in an early stage.

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Contains fulltext : 183985.pdf (Publisher’s version ) (Closed access)

BACKGROUND: Children with functional constipation report impaired Health-related Quality of Life (HRQoL) in relation to physical complaints and long duration of symptoms. In about one third of children with constipation symptoms continue into adulthood. To date, knowledge on HRQoL in adults with persisting childhood constipation is lacking. Objectives: To assess HRQoL in adults with constipation since early childhood in comparison to that of peers, and to gain insight in specific social consequences related to continuing symptoms of constipation and/or fecal incontinence at adult age. METHODS: One HRQoL questionnaire and one self-developed questionnaire focusing on specific consequences of symptoms of constipation continuing into adulthood were administrated to 182 adults with a history of childhood constipation. Successful clinical outcome was defined as a defecation frequency three or more times per week with less than two episodes of fecal incontinence per month, irrespectively of laxative use. HRQoL of both adults with unsuccessful and successful clinical outcome were compared to that of 361 peers from the general Dutch population. RESULTS: No differences in HRQoL were found between the whole study population and healthy peers, nor between adults with successful clinical outcome (n=139) and the control group. Adults with unsuccessful clinical outcome (n=43) reported significantly lower HRQoL compared to the control group with respect to scores on Bodily pain (mean+/-SD 77.4+/-19.6 versus 85.7+/-19.5, p=0.01) and General Health (67.6+/-18.8 versus 74.0+/-18.1, p=0.04). Adults with unsuccessful clinical outcome reported that current symptoms resulted in difficulties with social contact and intimacy in 20% and 12.5%, respectively. Current therapy in these adults consisted more often of self-administered treatment (e.g. diet modifications) (60.4%) than laxatives (20.9%). CONCLUSIONS: Overall, young adults with constipation in childhood report a good quality of life, as HRQoL of adults with successful clinical outcome was comparable to that of their peers. However, continuing of childhood constipation into adulthood influences HRQoL negatively. Social consequences as a result of these complaints are reported in 20% of these adults