Development and validation of a patient-reported outcome in systemic sclerosis: the Hand scleroDerma lived Experience (HAnDE) scale

Abstract

This study was funded by a grant from the Soci et e Franc ßaise de Dermatologie awarded to L.V. The funder had no role in the study design, nor in the collection, analysis and interpretation of data, nor in the decision to submit the article for publication. Researchers remained independent from the funder.

The critical need for patient-reported outcome measures to assess the severity and impact of systemic sclerosis

“…The study was conducted in a single country (France) and patients were recruited from specialist centres, which could limit the generalizability of the PROM for patients with milder hand involvement not requiring speciality services. The authors highlight that although the number of patients in phase two could appear small ( n = 105), no consensus exists on the minimum number required for principle component analysis 6 . There were also differences in patient characteristics between the two phases, which could be important (e.g.…”

“…In this issue of the BJD, Sibeoni et al report the development of an SSc PROM: the Hand scleroderma lived Experience (HAnDE) scale. 6 The authors used a sequential mixedmethods approach. The first phase was an inductive process to understand the lived experience of patients, in order to generate a provisional 18-item scale.…”

“…The authors highlight that although the number of patients in phase two could appear small (n = 105), no consensus exists on the minimum number required for principle component analysis. 6 There were also differences in patient characteristics between the two phases, which could be important (e.g. the prevalence of active digital ulcers and calcinosis).…”

“…The article by Vitali et al reminds us of one fundamental characteristic of the immune system, namely its ability to survey the body. Data from spontaneous regression of melanoma suggest that immune responses towards tumour antigens naturally exist, 6 and could therefore be modulated, for example, by the local and distant microbiota.…”

“…In this issue of the BJD , Sibeoni et al . report the development of an SSc PROM: the Hand scleroderma lived Experience (HAnDE) scale 6 . The authors used a sequential mixed‐methods approach.…”