ABSTRACT
Background: Alopecia describes a group of dermatological conditions characterised by hair loss, which are either non-scarring or scarring in nature, and range from bald patches to complete body hair loss, to general thinning. In the UK, the General Practitioner (GP) is typically the first point of contact, and some patients are referred for specialist dermatology consultation. However, little is known about how individuals with alopecia in the UK experience the care provided by the National Health Service. Objectives: We aimed to understand patients' perceptions of primary healthcare and dermatology provision. Further, we aimed to investigate how care provision and patients' overall patient journey might be improved in the UK, and how these lessons may apply internationally. Methods: An online mixed methods survey was distributed by Alopecia UK to UK-based individuals with alopecia. Open-ended text responses were analysed using qualitative content analysis. Quantitative data were analysed using descriptive analyses and dependent measures t-tests. Results: A total of 291 participants completed the survey. They reported neutral-to-partial dissatisfaction with their GP appointments, with greater satisfaction in their most recent compared to their first appointment. Participants highlighted positive experiences with GPs and dermatologists as well as areas for improvement. Participants also expressed a desire for a greater degree of support and understanding about the psychological impact of alopecia. Conclusions: Results highlight the importance of being empathic and caring healthcare professionals for patients with alopecia, the need for training for GPs on alopecia, as well as a simplified and joined up pathway between primary and secondary healthcare.
ABSTRACT
Importance: A recent expert consensus exercise emphasized the importance of developing a global network of patient registries for alopecia areata to redress the paucity of comparable, real-world data regarding the effectiveness and safety of existing and emerging therapies for alopecia areata. Objective: To generate core domains and domain items for a global network of alopecia areata patient registries. Evidence Review: Sixty-six participants, representing physicians, patient organizations, scientists, the pharmaceutical industry, and pharmacoeconomic experts, participated in a 3-round eDelphi process, culminating in a face-to-face meeting at the World Congress of Dermatology, Milan, Italy, June 14, 2019. Findings: Ninety-two core data items, across 25 domains, achieved consensus agreement. Twenty further noncore items were retained to facilitate data harmonization in centers that wish to record them. Broad representation across multiple stakeholder groups was sought; however, the opinion of physicians was overrepresented. Conclusions and Relevance: This study identifies the domains and domain items required to develop a global network of alopecia areata registries. These domains will facilitate a standardized approach that will enable the recording of a comprehensive, comparable data set required to oversee the introduction of new therapies and harness real-world evidence from existing therapies at a time when the alopecia areata treatment paradigm is being radically and positively disrupted. Reuse of similar, existing frameworks in atopic dermatitis, produced by the Treatment of Atopic Eczema (TREAT) Registry Taskforce, increases the potential to reuse existing resources, creates opportunities for comparison of data across dermatology subspecialty disease areas, and supports the concept of data harmonization.
