Health-related quality of life in adolescents with psoriasis: an interview-based study

Background Psoriasis is a common skin disease affecting the physical, psychological and social well-being of patients and their families. Most research so far has been limited to adults, and little is known about the qualitative experiences of young people with psoriasis. Objectives To provide an in-depth understanding of the impact of psoriasis on adolescents' health-related quality of life (HRQoL). Methods Patients and their parents were recruited from a dermatology outpatient clinic, the Danish National Birth Cohort and the Danish Psoriasis Association. Thirty-six semistructured interviews were conducted with adolescents with psoriasis aged 12-17 years (n = 18), their parents (n = 14) and health professionals working with psoriasis (n = 4). Interviews were digitally recorded, transcribed verbatim and analysed using inductive thematic analysis. Results The participants reported psoriasis-related HRQoL challenges within six main themes: physical symptoms, feeling different, psoriasis-related worry about the future, increased attention, attempts to conceal skin, and treatment-related frustrations and worry. Taken together, a broad range of the reported difficulties appeared to arise from appearance-related concerns. The impact of psoriasis and its treatment on the adolescents' daily lives varied considerably. Conclusions This first in-depth, qualitative study of HRQoL in adolescents with psoriasis provides a conceptual framework for understanding the impact of psoriasis and its treatment on the physical, psychological and social aspects of their daily lives. What's already known about this topic? Health-related quality of life (HRQoL) is impaired in both adult and paediatric patients with psoriasis. Studies using generic or dermatology-specific instruments have found a moderate impact of psoriasis on HRQoL in paediatric patients, but no studies have used psoriasis- specific instruments, and qualitative research is very limited. A qualitative study has revealed a substantial, negative impact on the well-being of parents of children with psoriasis, but in-depth data on HRQoL in adolescent patients themselves have only briefly been described in the literature. What does this study add? The present study is the first to provide in-depth knowledge about factors influencing the HRQoL of adolescent patients with psoriasis from a qualitative perspective. The results provide a conceptual framework for understanding HRQoL in adolescents with psoriasis. What are the clinical implications of this work? The results can contribute to increased awareness among dermatologists about the specific HRQoL issues experienced by adolescents with psoriasis. The conceptual model presented supports a patient-centred approach by providing dermatologists and other health professionals with relevant questions and topics to address in the clinical interview.