Publications (2)7.33 Total impact
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Article: The Eczema Priority Setting Partnership: A collaboration between patients, carers, clinicians and researchers to identify and prioritise important research questions for the treatment of eczema.
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ABSTRACT: Background: Eczema is a common condition yet there are uncertainties regarding many frequently used treatments. Knowing which of these uncertainties matter to patients and clinicians is important, because they are likely to have different priorities from those of researchers and funders. Objective: To identify the uncertainties in eczema treatment that are important to patients who have eczema, their carers, and the health care professionals (HCPs) who treat them. Methods: An eczema Priority Setting Partnership (PSP) was established, including patients, healthcare professionals and researchers. Eczema treatment uncertainties were gathered from patients and clinicians, and then prioritised in a transparent process, using a methodology advocated by the James Lind Alliance. Results: In the consultation stage 493 participants (341 patients/carers) made 1070 submissions, of which 718 were uncertainties relating the treatment of eczema. Treatment uncertainties with more than one submission were grouped into 52 "indicative uncertainties", which were then ranked by 514 participants (399 patients/carers). The top 14 treatment uncertainties were prioritised for research. The first 4 were common to patients/carers and HCPs (shared uncertainties): the best and safest way of using topical steroids (including frequency of application, potency, length of time, alternation with other topical treatments, and age limits); the long term safety of topical steroids; the role of food allergy tests; and the most effective and safe emollients in treating eczema. The remaining 10 of the top 14 uncertainties comprised the next 5 highest ranked uncertainties for patients and the next 5 highest ranked uncertainties for HCPs. At a workshop involving 40 participants (patients, HCPs and researchers), shared uncertainties were formulated into possible research questions. Conclusions: The top 14 treatment uncertainties around the treatment of eczema provide guidance for researchers and funding bodies to ensure that future research answers questions that are important both to clinicians and to patients.British Journal of Dermatology 09/2012; · 3.67 Impact Factor -
Article: Which outcomes should we measure in vitiligo? Results of a systematic review and a survey among patients and clinicians on outcomes in vitiligo trials.
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ABSTRACT: Summary Background Relevant and reliable outcomes play a crucial role in the correct interpretation and comparison of the results of clinical trials. There is a lack of consensus around methods of assessment and outcome measures for vitiligo, which makes it difficult to compare results of randomized controlled trials (RCTs) and perform meta-analysis. Objectives To describe the heterogeneity in outcome measures used in published RCTs of vitiligo treatments, and to report the most desirable outcomes from patients' and clinicians' perspectives. Methods We conducted a systematic review of outcome measures used in RCTs as well as a survey of the most desirable outcomes identified by patients and clinicians as part of a Vitiligo Priority Setting Partnership. Results Outcomes from 54 eligible trials were analysed and compared with outcomes suggested by patients and clinicians. In the systematic review, 25 different outcomes were reported. Only 22% of trials had clearly stated primary outcome measures. Repigmentation was the most frequently reported outcome in 96% of trials and was measured using 48 different scales. Only 9% of trials assessed quality of life. Thirteen per cent measured cessation of spreading of the disease and 17% of studies reported patients' opinions and satisfaction with the treatment. In contrast, out of 438 suggestions made by patients and clinicians, cosmetically acceptable repigmentation (rather than percentage of repigmentation) was the most desirable outcome (68%), followed by cessation of spread of vitiligo (15%), quality of life (8%) and maintenance of repigmentation (4%). Conclusions We propose that future vitiligo trials should include repigmentation, cosmetic acceptability of results, global assessment of the disease, quality of life, maintenance of repigmentation, stabilization of vitiligo and side-effects. International consensus among clinicians, researchers and patients is needed to establish an agreed core outcome set for future vitiligo trials.British Journal of Dermatology 05/2012; 167(4):804-14. · 3.67 Impact Factor
