School of Healthcare Sciences, Cardiff University, Room 12.14, Eastgate House, 35-43 Newport Road, Cardiff, CF24 0AB, UK.
Institute for Health Services Research in Dermatology and Nursing (IVDP), University Medical Center Hamburg-Eppendorf (UKE), Hamburg, Germany.
Acta Derm Venereol. 2022 Nov 29;102:adv00823. doi: 10.2340/actadv.v102.2401.
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.
现有的患者报告结局测量方法无法全面捕捉到患有皮肤病的全部影响。本研究旨在开发一个概念框架,在此基础上构建一个新的患者报告的皮肤病影响测量(PRIDD)工具。我们邀请了全球患者组织网络中的全球范围内患有皮肤病的成年人(≥18 岁)或患者组织代表参加个人或小组访谈。对数据进行了主题分析。来自 29 个国家的 65 人参与了研究,代表了 29 种皮肤病。主要主题包括:(i)个体、组织和社会层面的影响;(ii)影响是即时的和累积的;(iii)影响是一个多方面的概念,有两个子主题(iiia)常见影响和(iiib)心理和社会影响最为显著。该概念框架表明,影响是一个多方面的概念,涉及身体、心理、社会、财务、日常功能和医疗保健,为与患者共同构建 PRIDD 提供了基础。