The Hidradenitis Suppurativa Priority Setting Partnership

June 5, 2014

J.R. Ingram, R. Abbott, M. Ghazavi, A.B. Alexandroff, M. McPhee, T. Burton and T. Clarke

This summary relates to DOI 10.1111/bjd.13163

British Journal of Dermatology, 171, 1422–1427, December 2014

Summary

Hidradenitis suppurativa (HS) is a chronic, recurrent and painful disease in which there is inflammation in areas of the apocrine sweat glands. These glands are found mainly in the armpits and groin. Within HS there may be a blockage of hair follicles. This causes a mixture of boil-like lumps, areas leaking pus and scarring. According to the authors of this study, HS has been relatively neglected by society and medical research funding bodies, resulting in a lack of evidence to guide HS care. Obtaining research funding for HS is also challenging. Priority Setting Partnerships (PSPs) are groups of patient/carer organisations and clinician organisations who work together to raise awareness of a condition and demonstrate to funders and researchers the priorities of both patients and clinicians. A Priority Setting Partnership (PSP) for HS was therefore established following a model created by the James Lind Alliance which helps to bring patients, carers and clinicians together to identify and prioritise for research the treatment uncertainties which they agree are the most important. The PSP identified a top 10 list of HS research priorities from the perspective of the patients and clinicians involved, which is important in helping researchers and medical funding bodies decide which HS projects should be prioritised. The three highest priorities in descending order were: (1) What is the most effective and safe group of oral treatments for HS? (2) What is the best management of an acute flare? (3) What is the impact of the condition and its treatment on people with HS? The top 10 HS research priorities have been directly disseminated to funders to raise awareness of HS. The authors state that the next step is to generate research questions that will provide the evidence needed to improve HS patient care.