Patient prioritisation of items to develop the Patient-Reported Impact of Dermatological Diseases measure: A global Delphi study.

BACKGROUND: The Global Research on the Impact of Dermatological Diseases (GRIDD) project is developing the new Patient-Reported Impact of Dermatological Diseases (PRIDD) measure. PRIDD measures the impact of dermatological conditions on the patient's life. OBJECTIVES: This study aimed to seek consensus from patients on which items to prioritize for inclusion in PRIDD. METHODS: A modified, two-round Delphi study was conducted. Adults (≥18 years) with dermatological conditions were recruited. The survey consisted of a demographic's questionnaire and 263 potential impact items in six languages. Quantitative data used Likert-type ranking scales and analysed against consensus criteria. Qualitative data collected free text responses for additional feedback and a framework analysis was conducted. RESULTS: 1154 people representing 90 dermatological conditions from 66 countries participated. Items were either removed (n = 79), edited (n = 179) or added (n = 2), based on consensus thresholds and qualitative feedback. Results generated the first draft of PRIDD with 27 items across five impact domains. CONCLUSION: This Delphi study resulted in the draft version of PRIDD, ready for psychometric testing. The triangulated data helped refine the existing conceptual framework of impact. PRIDD has since been pilot tested with patients and is currently undergoing psychometric testing.

Development of a Conceptual Framework for a Patient-Reported Impact of Dermatological Diseases (PRIDD) Measure: A Qualitative Concept Elicitation Study.

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 recruited via a global patient organization network, were invited to an individual or group interview. Data were analyzed 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 two 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.

Patient-Reported Outcome Measures in Dermatology: A Systematic Review.

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 dermatology-specific (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 (COSMIN) criteria were used to assess the measurement properties and methodological quality of studies. A total of 12,925 abstracts were identified. Zero patient-reported 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.