ArticleQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation2026
Trajectories of health-related quality of life in youth with chronic physical illness and their siblings.
Article in Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
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Abstract
backgroundYouth with chronic physical illnesses (YwCPI) generally report lower health-related quality of life (HRQL) compared to healthy peers. Despite the pervasive effects of CPI within families, research on siblings is limited. This study modelled 48-month trajectories of change in HRQL in YwCPI and siblings and identified predictors of these trajectories.
methodsData come from the MY LIFE study, comprising 171 YwCPI, and their age-matched siblings. HRQL was assessed at five time points over 48 months using the KIDSCREEN-27, which includes five subscales: physical, psychological, autonomy, peers and school. Latent class growth analysis modelled trajectories of change separately for YwCPI and siblings, and multinomial regression models identified predictors of trajectory group membership.
resultsYwCPI generally reported lower HRQL than siblings across physical, psychological, autonomy, peers, and school. Most youth had stable trajectories with changes occurring primarily between baseline and 12 months. Significant predictors of trajectory group membership included baseline HRQL, parent stress, age, and household income.
conclusionA greater proportion of siblings, compared to YwCPI, had improving trajectories of change in HRQL, likely reflecting adaptation within the family system. Early changes suggest a window for intervention, supporting the importance of timely support. Shared family environment, caregiving responsibilities, and parental stress could influence HRQL trajectories, underscoring the need for family-centered care. These findings highlight that while many youth have stable HRQL, targeted support is crucial for those with persistently low, or declining outcomes.
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