Development and preliminary validation of the Adolescent Psoriasis Quality of Life instrument: a disease-specific measure of quality of life in adolescents with psoriasis.

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 0·97, 0·89 and 0·96) and internal consistencies (Cronbach's α 0·94, 0·81 and 0·95). 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. What does this study add? The Adolescent Psoriasis Quality of Life instrument represents the first age-appropriate and disease-specific instrument for measuring HRQoL in adolescents (12-17 years old) with psoriasis. It is intended for use in daily clinical practice to support dermatologists and other healthcare professionals in providing optimal care for adolescents with psoriasis.

A prospective 52-week randomized controlled trial of patient-initiated care consultations for patients with psoriasis.

BACKGROUND: Treatment and care of moderate-to-severe psoriasis require lifelong consultations with a dermatologist with close monitoring of systemic treatment. OBJECTIVES: To investigate the effect of patient-initiated care consultation (PICC) for patients with psoriasis in a dermatology outpatient clinic. METHODS: A prospective randomized controlled trial with patients on well-controlled systemic treatment randomized to either (i) the PICC group, where they participated in one annual consultation with a dermatologist but were able to initiate consultations when needed; or (ii) routine care, where they participated in a consultation every 12-16 weeks. The primary outcome was the Dermatology Life Quality Index (DLQI). Other outcomes were safety, patient adherence and satisfaction with healthcare assessed at baseline and after 52 weeks. The study was registered with clinical trials number NCT02382081. RESULTS: In total 150 patients were included, with 58·0% treated with biologics, 37·3% with methotrexate and 4·7% with acitretin. At week 52 no statistically significant mean difference between groups was detected in DLQI (0·28, 95% confidence interval -0·35 to 0·9) or Psoriasis Area and Severity Index (-0·24, 95% confidence interval -0·84 to 0·36). Patients in the PICC group requested 63% fewer consultations with a dermatologist: mean 2·5 ± 0·1 vs. 5·1 ± 0·6 (P = 0·001). Patient adherence and safety with treatment monitoring were equal between groups, but the PICC group was significantly better at attending consultations than the control group (P = 0·003). CONCLUSIONS: PICC offers additional clinical benefits over routine care, making patients less dependent on clinical visits. The intervention adds no harm to monitoring systemic treatment, and patients report high quality of life and satisfaction with healthcare.

Facing the dilemma of patient-centred psoriasis care: a qualitative study identifying patient needs in dermatological outpatient clinics.

BACKGROUND: Caregivers must be aware of patients' current needs by providing care responsive to patients' values and preferences and by identifying what approach improves and encourages patients to participate in their treatment and disease management. Patients with psoriasis healthcare needs perhaps change as medical knowledge improves, new drugs emerge and the healthcare system improves its efficiency as a result of constant structural development. OBJECTIVES: To explore the unmet needs and health perceptions of people with psoriasis, regarding interaction with clinicians and the structure inherent to consultations in a hospital outpatient dermatological clinic. METHODS: A qualitative investigation with data generated from semi-structured interviews. Transcriptions were subsequently analysed using the template analysis method. RESULTS: Sixteen patients with psoriasis were interviewed. Challenges and dilemmas of patient-centred psoriasis care were identified. Patients have a strong need to be met as individuals as the burden of living with psoriasis goes beyond the skin. Patients strive for efficient treatment and ultimately dream of being cured of psoriasis. They prefer individualized health education in order to adjust their knowledge and self-management skills. These central issues are as yet rarely addressed in clinical consultations. CONCLUSIONS: Consultations with a standardized structure do not match the individual challenges and healthcare needs of patients with psoriasis. In order to achieve a more patient-centred approach, health professionals should implement minor structural changes to dermatological services to meet patients' current needs and invite dialogue about the patients' emotional well-being and concerns that go beyond biomedical factors, as well as offer individualized health education.