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

Objective: To describe psychosocial outcomes among adult siblings of very long-term childhood cancer survivors (CCS), to compare these outcomes to reference populations and to identify factors associated with siblings' psychosocial outcomes. Methods: Siblings of survivors (diagnosed &lt;18 years old, between 1963 and 2001, &gt;5 years since diagnosis) of the Dutch Childhood Cancer Survivor Study DCCSS-LATER cohort were invited to complete questionnaires on HRQoL (TNO-AZL Questionnaire for Adult's HRQoL), anxiety/depression (Hospital Anxiety and Depression Scale), post-traumatic stress (Self-Rating Scale for Post-traumatic Stress Disorder), self-esteem (Rosenberg Self-Esteem Scale) and benefit and burden (Benefit and Burden Scale for Children). Outcomes were compared to a reference group if available, using Mann-Whitney U and chi-Square tests. Associations of siblings' sociodemographic and CCS’ cancer-related characteristics with the outcomes were assessed with mixed model analysis. Results: Five hundred five siblings (response rate 34%, 64% female, mean age 37.5, mean time since diagnosis 29.5) of 412 CCS participated. Siblings had comparable HRQoL, anxiety and self-esteem to references with no or small differences (r = 0.08−0.15, p &lt; 0.05) and less depression. Proportions of symptomatic PTSD were very small (0.4%−0.6%). Effect sizes of associations of siblings' sociodemographic and CCS cancer-related characteristics were mostly small to medium (β = 0.19−0.67, p &lt; 0.05) and no clear trend was found in the studied associated factors for worse outcomes. Conclusions: On the very long-term, siblings do not have impaired psychosocial functioning compared to references. Cancer-related factors seem not to impact siblings' psychosocial functioning. Early support and education remain essential to prevent long-term consequences.</p

Children with a chronic illness or cancer, their siblings and parents: psychosocial group intervention & long-term consequences

Part 1: The development and effect of the Op Koers intervention in different populations In Chapter 2, a study into the online support needs of siblings of children with a chronic illness is presented. In total, 91 siblings filled out a self-developed questionnaire. Of all participants, 55% would like to initiate or increase contact with other siblings of children with a chronic condition and 46% of those were interested in an online chat course. Important themes for online support were identified. We concluded that siblings are interested in peer contact and online support, and that Op Koers Online for siblings seems to be a suitable intervention to offer online psychosocial support. Chapter 3 consists of a pilot study into Op Koers Online for adolescents with a chronic illness. In total, 23 adolescents with a chronic illness completed questionnaires before and after participation in the intervention, addressing feasibility, coping skills and psychosocial wellbeing. Dropout rate and technological issues were low. Participants’ overall satisfaction was high. Participants improved in the coping skills ‘information seeking and giving’ and ‘social competence’ after the intervention compared to baseline. Participants reported fewer withdrawn/depressed behavior and scored better on emotional and psychosocial HRQoL after following the intervention. We concluded that Op Koers Online for adolescents with a chronic illness is feasible and potentially effective. Chapter 4 is the result of a RCT to study the efficacy of Op Koers Online for parents of children with cancer on coping skills and psychosocial wellbeing. In total, 100 parents participated in the RCT, of which 89 filled out questionnaires before participation and at 6-week and/or 6-month follow up. The intervention had a beneficial effect on anxiety, depression, distress and loneliness as well as on the coping skill ‘relaxation’ after six weeks. Furthermore, after six months, an effect of the intervention was found on anxiety, uncertainty and coping skill ‘relaxation’. No intervention effects were found for helplessness, positive feelings and coping skills predictive control, open communication and positive thinking. We concluded that Op Koers Online for parents of children with cancer has a positive effect on psychosocial wellbeing and the coping skill relaxation. In Chapter 5, the efforts are described that were made in 25 years of Op Koers development, evaluation and implementation. Important lessons were learned about the characteristics of the intervention, the inner and outer setting, individuals, implementation process and research. Future efforts may be directed towards continuous improvement of the intervention and successful implementation. We concluded that Op Koers is one of few psychosocial interventions that has been both extensively studied and implemented. The main factor for this achievement is the close collaboration between, and the perseverance of, the clinical care and research departments. Part 2: Psychosocial wellbeing of siblings and parents of very long‐term survivors of childhood cancer Part 2 focuses on studying the psychosocial wellbeing of adult siblings (Chapter 6) and parents (Chapter 7) of very long-term childhood cancer survivors (CCS). We assessed HRQoL, anxiety, depression, post-traumatic stress (PTSD), self-esteem, illness cognitions and positive consequences. Additionally, we studied whether sociodemographic characteristics and cancer-related characteristics of the ill child were associated to the outcomes. In total, 505 siblings and 661 parents completed questionnaires. Compared to the general population, siblings and parents in our sample had comparable or slightly better HRQoL, anxiety and self-esteem and slightly less depression. The proportion of participants with symptomatic PTSD was very small. Post‐traumatic growth was associated with more post‐traumatic stress and better HRQoL. No clear trend was found in the associations of sociodemographic characteristics and cancer-related characteristics with the outcomes

Psychometric Properties of the Pediatric Patient-Reported Outcomes Measurement Information System Item Banks in a Dutch Clinical Sample of Children With Juvenile Idiopathic Arthritis

Objective: To assess the psychometric properties of 8 pediatric Patient-Reported Outcomes Measurement Information System (PROMIS) item banks in a clinical sample of children with juvenile idiopathic arthritis (JIA). Methods: A total of 154 Dutch children (mean ± SD age 14.4 ± 3.0 years; range 8–18 years) with JIA completed 8 pediatric version 1.0 PROMIS item banks (anger, anxiety, depressive symptoms, fatigue, pain interference, peer relationships, physical function mobility, physical function upper extremity) twice and the Pediatric Quality of Life Inventory (PedsQL) and the Childhood Health Assessment Questionnaire (C-HAQ) once. Structural validity of the item banks was assessed by fitting a graded response model (GRM) and inspecting GRM fit (comparative fit index [CFI], Tucker-Lewis index [TLI], and root mean square error of approximation [RMSEA]) and item fit (S-X2 statistic). Convergent validity (with PedsQL/C-HAQ subdomains) and discriminative validity (active/inactive disease) were assessed. Reliability of the item banks, short forms, and computerized adaptive testing (CAT) was expressed as the SE of theta (SE[θ]). Test–retest reliability was assessed using intraclass correlation coefficients (ICCs) and smallest detectable change. Results: All item banks had sufficient overall GRM fit (CFI >0.95, TLI >0.95, RMSEA 0.001). High correlations (>0.70) were found between most PROMIS T scores and hypothesized PedsQL/C-HAQ (sub)domains. Mobility, pain interference, and upper extremity item banks were able to discriminate between patients with active and inactive disease. Regarding reliability, PROMIS item banks outperformed legacy instruments. Post hoc CAT simulations outperformed short forms. Test–retest reliability was strong (ICC >0.70) for all full-length item banks and short forms, except for the peer relationships item bank. Conclusion: The pediatric PROMIS item banks displayed sufficient psychometric properties for Dutch children with JIA. PROMIS item banks are ready for use in clinical research and practice for children with JIA

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

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 < 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 and aggressive 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 cognitions were associated to better (β = 0.12–0.25), and helplessness to worse outcomes (β = 0.14–0.38). Conclusions: HRQoL of parents of young adult survivors of CCS is comparable to references or slightly better. Only a small proportion reports symptomatic post-traumatic stress. Improving acceptance and reducing feelings of helplessness may provide treatment targets for parents with psychosocial problems

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

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 < 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 and aggressive 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 cognitions were associated to better (β = 0.12–0.25), and helplessness to worse outcomes (β = 0.14–0.38). Conclusions: HRQoL of parents of young adult survivors of CCS is comparable to references or slightly better. Only a small proportion reports symptomatic post-traumatic stress. Improving acceptance and reducing feelings of helplessness may provide treatment targets for parents with psychosocial problems