Trajectories of illness perceptions in paediatric cancer patients and their parents and associations with health-related quality of life: Results of a prospective-longitudinal study.

OBJECTIVE: In paediatric oncology, little is known about trajectories of illness perceptions and their longitudinal associations with health-related quality of life (HRQoL). Therefore, the aim of this study was to investigate changes in illness perceptions in children and parents over a one-year-period and to investigate predictive value of child's and parent's illness perceptions during acute treatment for child's HRQoL 1 year later. METHODS: N = 65 child-parent-dyads participated in a longitudinal study (retention rate: 80.2%). Children were 4-18 years of age and underwent acute cancer treatment at baseline. Children and parents reported on their own illness perceptions (Illness-Perception-Questionnaire-Revised), as well as on the child's HRQoL (KINDL-R) at baseline and one-year-follow-up. Paired-samples t-tests were calculated to investigate changes over time. A hierarchical multiple regression analysis was performed to investigate predictive value of child's and parent's illness perceptions for child's HRQoL. RESULTS: Child's HRQoL t(63) = -6.73, p < 0.001, their perceptions of coherence (i.e. understanding; t(54) = -2.36, p = 0.022) and consequences of their illness (t(54) = 2.86, p = 0.006), and parent's perception of cyclical trajectory (t(61) = 2.06, p = 0.044) improved from baseline to 1-year-follow-up. All other illness perceptions remained stable. Exploratory post-hoc analyses showed differences in the pattern of change in age-, gender-, and diagnosis-specific subgroups. After controlling for baseline levels of HRQoL, child's perceptions of symptoms and consequences were independent predictors of their HRQoL 1 year later (R2 = 0.396, F(2,52) = 10.782, p < 0.001), whereas no parent's illness perceptions added predictive value. CONCLUSION: In paediatrics, child's and parent's illness perceptions should be assessed. Our findings highlight the importance of illness perceptions as potential modifiable variables in interventions to improve child's HRQoL.

[Screening to Assess Psychosocial Follow-up Needs in Pediatric Oncology (NPO-11) for Self- and Parent-Report]. / Screening zur Einschätzung des psychosozialen Nachsorgebedarfs in der pädiatrischen Onkologie (NPO-11) für Selbst- und Elternbericht.

BACKGROUND: Children diagnosed with cancer are at increased risk for the development of psychosocial problems. Currently, no qualitative and quantitative tests are available to measure their need for psychosocial follow-up care. The NPO-11 screening was developed to tackle this issue. PATIENTS AND METHODS: 11 dichotomous items were generated to measure self- and parent-reported fear of progression, sadness, avolition, self-esteem problems, school and vocational problems, somatic complaints, emotional withdrawal, social disintegration, pseudo-maturity, parent-child conflicts, and parental conflicts. Data from N=101 parent-child dyads were obtained to validate the NPO-11. RESULTS: Self- and parent-reported items showed few missing values and response frequencies without floor or ceiling effects. Inter-rater reliability was fair to moderate. Factor analysis confirmed a single-factor model and therefore an overall NPO-11 sum score. Self- and parent-reported sum scores had sufficient to good reliability and large correlations with health-related quality of life. CONCLUSION: The NPO-11 is a screening for psychosocial needs in pediatric follow-up care with good psychometric properties. It may help to plan diagnostics and interventions for patients transitioning from in-patient to out-patient treatment.