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

Abstract

SummaryBackground 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.

Psoriasis has a huge impact on teenagers

“…In this issue of the BJD , Randa et al . provide in‐depth information about factors influencing the HRQoL of adolescents with psoriasis.…”

“…provide in‐depth information about factors influencing the HRQoL of adolescents with psoriasis. By performing a qualitative study, Randa and colleagues have taken the first step in developing a psoriasis‐specific measure for these patients . Furthermore, issues not previously explored in adolescents with psoriasis are presented by giving an overview of the different aspects related to HRQoL.…”

“…Patients were shy, felt relieved by seeing others with psoriasis, and were helped by sharing experiences; thus, patient focus groups for young patients with psoriasis may be an invaluable part of their treatment.…”

“…On the other hand, those that felt helped by sharing may have been more willing to participate. A participation evasion might perhaps have left a group of more severely affected adolescents not yet evaluated (the shyest and those not helped by sharing).…”

“…Studies on HRQoL in adolescent patients with psoriasis are gradually emerging and reveal issues previously not appreciated. Further work to develop a psoriasis‐specific instrument for adolescents, as planned by Randa et al ., is expected to fill a research gap on how psoriasis affects young patients.…”