This is the first study to systematically evaluate all published dermatology-specific (for use across skin conditions), patient-reported outcome measures against the goldstandard Consensus-based Standards for the selection of health Measurement Instruments (COSMIN) criteria and make evidence-based recommendations for their use. The study found that no dermatology-specific patient-reported outcome measure can be unequivocally recommended for use. These results question the validity of the data collected using these patient-reported outcome measures, which has implications for clinical decision-making and research. By relying on data from existing patient-reported outcome measures of quality of life, the true impact of skin conditions on patients' lives may be underestimated. This study systematically reviewed all dermatologyspecific (used across skin conditions) patient-reported outcome measures and makes evidence-based recommendations for their use. The study protocol is registered on PROSPERO (CRD42018108829). PubMed, PsycInfo and CINAHL were searched from inception to 25 June 2018. The Consensus-based Standards for the Selection of Health Measurement Instruments (COS-MIN) criteria were used to assess the measurement properties and methodological quality of studies. A total of 12,925 abstracts were identified. Zero patientreported outcome measures were assigned to category A (ready for use without further validation), 31 to category B (recommended for use, but only with further validation) and 5 to category C (not recommended for use). There is no gold-standard dermatology-specific patient-reported outcome measure that can be recommended or used without caution. A new measure that can comprehensively capture the impact of dermatological conditions on the patient's life is needed.
2. Ex plo ri n g b eli efs a n d di s t r e s s in p a ti e n t s wi t h fa ci al p al si e s. P syc h olo gy, H e al t h a n d M e di ci n e 2 7 (4) , p p.
Existing patient-reported outcome measures cannot comprehensively capture the full impact of living with a dermatological condition. The aim of this study was to develop a conceptual framework on which to build a new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure. Adults (≥ 18 years of age) living with a dermatological condition, worldwide and/or representatives from a patient organization [AQ2] via a global patient organization network, were invited to an individual or group interview. Data were analysed thematically. Sixty-five people from 29 countries, representing 29 dermatological conditions, participated. Key themes were: (i) impacts at the individual, organizational and societal levels; (ii) impacts were point-in-time and cumulative; and (iii) impact is a multifaceted construct, with 2 subthemes (iiia) common impacts and (iiib) psychological and social impacts are most significant. The conceptual framework shows that impact is a multifaceted concept presenting across physical, psychological, social, financial, daily functioning and healthcare, and provides the basis for co-constructing the PRIDD with patients.
The Psoriasis and Well-being (PsoWell)™ training programme, incorporating motivational interviewing, improves clinicians’ knowledge and skills to manage complex psoriasis, including behaviour change. The aims of this study were to deliver the PsoWell™ training programme to dermatology specialists, and to evaluate the acceptability and feasibility of implementing the PsoWell™ model across dermatology services. Framework analysis of 19 qualitative semi-structured interviews was performed, following delivery of nine, 1-day PsoWell™ training days involving 119 participants. Two themes were identified: “Perceptions and Priorities” and “Awareness”, sub-divided into: “Awareness Not Competence” and “Increasing Awareness”. The PsoWell™ model was found to be acceptable and feasible to implement across dermatology settings. Participants were more skilled and motivated to address psychological issues, including behaviour change, but wanted further training to ensure competency. The trainees claimed that scepticism among some colleagues regarding whole-patient management might prevent uptake. Data showing the impact on health outcomes are needed and might overcome scepticism. Remote consultation could adopt the PsoWell™ approach.
Atopic eczema (herein referred to as 'eczema') is a skin disease characterized by remitting and relapsing symptoms. The Harmonising Outcome Measures for Eczema (HOME) initiative was developed to establish a core outcome set (COS) for eczema to be measured for all future eczema trials. The core outcome set for atopic eczema clinical trials includes the domain for patient-reported eczema control, but a review of the validation of available eczema control instruments was lacking. We aimed to review the literature and systematically assess the measurement properties of validated patientreported outcome instruments that capture eczema control. PubMed and Ovid EMBASE were searched up to 24 January 2020 for any study that reported on PROM instrument development or validation. The COnsensus-based Standards for the selection of health Measurement Instruments (COSMIN) criteria were used to assess the quality of eligible studies.We screened 12 036 titles and abstracts and 58 full texts. A total of 12 papers were included, reporting on seven PROMS. These were assessed with respect to development, reliability, construct validity and responsiveness. Two instruments, Recap of Atopic Eczema (RECAP) and the Atopic Dermatitis Control Tool (ADCT), have been developed and validated to a sufficient standard to support their recommendation as patient-reported outcome instruments for measuring control of atopic eczema as part of the HOME Core Outcome Set.
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