The meta-analysis revealed a small overall effect of using the PCOMS, but no effect in psychiatric settings. The positive results in counseling settings might be biased due to researcher allegiance and use of the ORS as the only outcome measure.
Studies demonstrating the negative impact of paediatric psoriasis on health-related quality of life (HRQOL) are accumulating, but little is known about moderators of HRQOL. The objectives of this review were to summarize studies on HRQOL in paediatric psoriasis and to explore the potential moderating influences of demographic and clinical variables. Searches were conducted by 2 independent researchers in PubMed, Embase, CINAHL, PsycINFO, and Scopus for papers published between 1995 (the date the first dermatology-specific HRQOL-instrument for children was introduced) and 2016. Eligible studies were required to report HRQOL data for children and/or adolescents with psoriasis (4-18 years) using validated HRQOL questionnaires. Seven-teen eligible studies (number of patients=1,185) were identified. Moderation analyses revealed that study samples with a higher percentage of girls were associated with better HRQOL (β = 0.19), while a higher mean age of onset (β = 0.83) and study quality (β = 0.28) were associated with lower HRQOL (all p<0.05). Several papers did not provide the information necessary for exploring between-study differences, thus the moderation analysis results should be interpreted with caution. In conclusion, children and adolescents with psoriasis experience moderate impairment of HRQOL. Certain demographic characteristics (e.g. sex) and clinical characteristics (e.g. age at onset) appear to moderate this impact.
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.
Background No age-appropriate and disease-specific instrument currently exists to measure health-related quality of life in adolescents with psoriasis (patients aged 12-17 years). Objectives To develop and provide preliminary validation of the Adolescent Psoriasis Quality of Life instrument. Methods Qualitative interviews with adolescents with psoriasis, parents of adolescents with psoriasis, and healthcare professionals informed the development of an initial item pool for the instrument, which was subsequently refined through cognitive interviews. Finally, data from an independent sample of adolescents with psoriasis (n = 50) were used for item reduction, scale construction and initial validation, using a combination of techniques from classical test theory and Rasch modelling. Results Rich qualitative data concerning health-related quality of life in adolescents with psoriasis (from 18 adolescents, 14 parents and four healthcare professionals), combined with cognitive interview testing (n = 12), resulted in a 41-item draft version. Item reduction led to the final version, a 17-item instrument consisting of two subscales showing good fit to their respective Rasch models: psychosocial impact (12 items) and the impact of physical symptoms and treatment (five items). All a priori stated hypotheses regarding construct validity were supported. Both subscales and the total scale showed acceptable test-retest reliabilities (intraclass correlations 0Á97, 0Á89 and 0Á96) and internal consistencies (Cronbach's a 0Á94, 0Á81 and 0Á95). Conclusions The preliminary form of the Adolescent Psoriasis Quality of Life instrument shows promising psychometric properties. It can be used in daily clinical practice and research to support a patient-centred approach and inform treatment planning. What's already known about this topic? • Health-related quality of life (HRQoL) instruments should be targeted towards narrowly defined age groups, as life contexts of children, adolescents and adults may differ substantially. • Dermatology-specific instruments have been used to measure HRQoL in adolescents with psoriasis, but it is not known whether these instruments accurately capture all relevant HRQoL aspects in adolescent psoriasis. • Age-appropriate and psoriasis-specific instruments may be more sensitive for HRQoL issues experienced by this unique group.
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