(Health-related) quality of life and psychosocial factors in adolescents with chronic disease: a systematic literature review.

Background Research on living with a chronic disease (CD) in adolescence is increasing. However, studies on the relevance of psychosocial factors are still needed. The present review, focuses on the impact of living with a CD in adolescence on on quality of life (QoL), health-related quality of life (HRQoL) and psychosocial factors. Methods A literature review of articles identified through PubMed, PsycINFO and PsycARTICLES (these last two ones comprise the Ebsco Host platform) and original peer-reviewed research papers, published between 2010 and 2015, with no restrictions regarding the format/source of interventions, randomized controlled trials (RCTs) or types of comparisons were included. Results Eighteen papers met the inclusion criteria and contradictory results were found: the majority showed a significantly higher risk of impairment on QoL/HRQoL and psychosocial factors, whereas others reported a significantly lower risk of impairment (highlighting possible protective factors), or no significant differences. Heterogeneity in the assessment procedures and substantial difficulties in considering adolescence as a single and independent age group, were also noted. Conclusion The higher risk of impairment and the heterogeneity observed between cohorts, reinforce the need to work towards consensual procedures, which allow for more accurate comparisons among studies. Additionally, it conveys the challenge to find more effective interventions. Furthermore, it is highly suggested to routinely assess HRQoL/psychosocial factors within an individualized framework, to considerer adolescents as a single/independent group, to emphasize potential protective factors, and, to increase youth's participation in their own adaptation process and in health promotion in general. These are possible future directions that could enable multidisciplinary responses to improve HRQoL and psychosocial care in adolescents with a CD.