Which outcomes should we measure in vitiligo? Results of a systematic review and a survey among patients and clinicians on outcomes in vitiligo trials

Eleftheriadou, Viktoria; Kim, Thomas; Whitton, ME; Batchelor, Jonathan; Ravenscroft, Jane

doi:10.1111/j.1365-2133.2012.11056.x

Cited by 80 publications

(123 citation statements)

References 67 publications

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“…All studies were observational; none employed experimental or quasi-experimental designs. Eleven studies used qualitative or survey methods to obtain input from patients, 4,7,[18][19][20][21][22][23][24][25][26] and 17 studies were narrative reports describing one group's experiences with engagement. [27][28][29][30][31][32][33][34][35][36][37][38][39][40][41][42][43] The remaining seven studies were descriptions of specific initiatives reported on websites [44][45][46][47][48][49][50] ( Table 1 and Table 2).…”

Section: Resultsmentioning

confidence: 99%

“…cians. 20,38,39,47,49 Seven studies were classified as sufficiently descriptive 7,18,19,[23][24][25][26] The purposes of engagement included identifying patient-centered research topics or agendas, 19,23,29,36,39 identifying outcomes important to patients or developing measures relevant to patients' needs, 7,19,20,23,25,26 increasing recruitment or enrollment through development of patient-centered study designs, 4,18,21,24,27,30,31,41 and incorporating the patient perspective into study design 19,25,35,39,40 (Table 2, Table 3). Patients and other stakeholders were most commonly engaged in the preparatory stage (n= 19 for agenda setting) 4, 7, 19, 20, 23, 25, 28, 29, 32, 35, 36, 39- (Table 4 [online]).…”

Section: Resultsmentioning

confidence: 99%

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A Systematic Review of Approaches for Engaging Patients for Research on Rare Diseases

et al. 2014

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BACKGROUND: Patients with rare diseases have limited access to useful information to guide treatment decisions. Engagement of patients and other stakeholders in clinical research may help to ensure that research efforts in rare diseases address relevant clinical questions and patient-centered health outcomes. Rare disease organizations may provide an effective means to facilitate patient engagement in research. However, the effectiveness of patient-engagement approaches, particularly for the study of rare diseases, has not been well studied. OBJECTIVES: To synthesize evidence about engagement of patients and other stakeholders in research on rare diseases, including the role of rare disease organizations in facilitating patient-centered research. METHODS/RESEARCH DESIGN: A systematic review and gray literature search were guided by a technical expert panel composed of patient representatives, clinicians, and researchers. English-language studies that engaged patients or other stakeholders in research on rare diseases or evaluated engagement were included. Studies were assessed on how well key research questions were answered, based on the level of detail describing engagement activities and whether outcomes from engagement were assessed. RESULTS: Thirty-five studies were included, although many reported minimal information on engagement. Patients and other stakeholders were most commonly engaged to identify patient-centered research agendas, to select which study outcomes were important to patients, to provide input on study design, and to identify strategies for increasing enrollment in trials. Rare disease organizations mainly helped provide access to patients and communicated research opportunities and findings. They also helped promote collaborative networks and provided financial support for research infrastructures. Although authors reported benefits of engagement and identified changes to their research processes, no empirical assessments of engagement practices and their effectiveness were found. CONCLUSIONS: Researchers studying rare diseases can obtain patient input regarding which research questions and health outcomes to study; however, the most effective approaches to engagement have not been well defined.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

A Systematic Review of Approaches for Engaging Patients for Research on Rare Diseases

et al. 2014

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“…367 It affects people of all ages, ethnic groups and skin types and approximately 0.5-1% of the world's population, 367,439 although estimates are higher in countries and cultures where the stigma of the skin disease may be higher. 367 There is no cure for vitiligo but there are many treatments available to manage it.…”

Section: Introductionmentioning

confidence: 99%

“…367,439,468 Living with vitiligo can be a continuous struggle, with the psychological characteristics of each individual determining their ability to adjust to and cope with disfigurement. 469 Although clinical studies have assessed many treatments for vitiligo, the heterogeneity of these studies makes comparison of the effectiveness of treatments -alone or combined -very difficult.…”

Section: Introductionmentioning

confidence: 99%

“…469 Although clinical studies have assessed many treatments for vitiligo, the heterogeneity of these studies makes comparison of the effectiveness of treatments -alone or combined -very difficult. 367,431,439 The updated Cochrane systematic review of interventions for vitiligo published in 2010, 367 and other reviews, have highlighted problems such as variance in design and a lack of standardised outcome measures and scales used in clinical trials. 344,367,431,439 There is a pressing need to develop core outcome measures so that effectiveness of treatments can be compared and combined more easily across trials.…”

Section: Introductionmentioning

confidence: 99%

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A programme of research to set priorities and reduce uncertainties for the prevention and treatment of skin disease

Kim

Batchelor

Bath‐Hextall

et al. 2016

Programme Grants Appl Res

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Programme Grants for Applied ResearchISSN 2050-4322 (Print) ISSN 2050-4330 (Online) This journal is a member of and subscribes to the principles of the Committee on Publication Ethics (COPE) (www.publicationethics.org/).Editorial contact: nihredit@southampton.ac.ukThe full PGfAR archive is freely available to view online at www.journalslibrary.nihr.ac.uk/pgfar. Print-on-demand copies can be purchased from the report pages of the NIHR Journals Library website: www.journalslibrary.nihr.ac.uk Criteria for inclusion in the Programme Grants for Applied Research journalReports are published in Programme Grants for Applied Research (PGfAR) if (1) they have resulted from work for the PGfAR programme, and (2) they are of a sufficiently high scientific quality as assessed by the reviewers and editors. Programme Grants for Applied Research programmeThe Programme Grants for Applied Research (PGfAR) programme, part of the National Institute for Health Research (NIHR), was set up in 2006 to produce independent research findings that will have practical application for the benefit of patients and the NHS in the relatively near future. The Programme is managed by the NIHR Central Commissioning Facility (CCF) with strategic input from the Programme Director.The programme is a national response mode funding scheme that aims to provide evidence to improve health outcomes in England through promotion of health, prevention of ill health, and optimal disease management (including safety and quality), with particular emphasis on conditions causing significant disease burden.For more information about the PGfAR programme please visit the website: http://www.nihr.ac.uk/funding/programme-grants-forapplied-research.htm This reportThe research reported in this issue of the journal was funded by PGfAR as project number RP-PG-0407-10177. The contractual start date was in September 2008. The final report began editorial review in April 2014 and was accepted for publication in April 2016. As the funder, the PGfAR programme agreed the research questions and study designs in advance with the investigators. The authors have been wholly responsible for all data collection, analysis and interpretation, and for writing up their work. The PGfAR editors and production house have tried to ensure the accuracy of the authors' report and would like to thank the reviewers for their constructive comments on the final report document. However, they do not accept liability for damages or losses arising from material published in this report.This report presents independent research funded by the National Institute for Health Research (NIHR). The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, CCF, NETSCC, PGfAR or the Department of Health. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, ...

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Interventions for vitiligo

Whitton

Pinart

Batchelor

et al. 2015

Cochrane Database of Systematic Reviews

124

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Vitiligo is chronic idiopathic disorder of skin pigmentation that plays havocs with the social livings of patients. Its major symptom is the occurrence of white patches/lesions on human skin. It affects 1-2 % of general population. A 15 years juvenile patient was affected by generalized Vitiligo with no familial history of the ailment. The patient was asked to take two table spoonful of honey per oral mixed with one cup of boiled milk of cow early in the morning daily. White de-pigmented skin was observed to be partially re-pigmented after 4 months with the reversal of disease progression.

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Which outcomes should we measure in vitiligo? Results of a systematic review and a survey among patients and clinicians on outcomes in vitiligo trials

Cited by 80 publications

References 67 publications

A Systematic Review of Approaches for Engaging Patients for Research on Rare Diseases

A Systematic Review of Approaches for Engaging Patients for Research on Rare Diseases

A programme of research to set priorities and reduce uncertainties for the prevention and treatment of skin disease

Interventions for vitiligo

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