Cross-cultural validation of a short-form of the Vitiligo Impact Patient scale (VIPs)

Ezzedine, Khaled; Ahmed, M.; Tovar‐Garza, Andrea; Hajj, Carla; Whitton, Maxine E; Pandya, Amit G.; Altalhab, Saad; Sénéschal, Julien; Harris, John E.; Taïeb, C.

doi:10.1016/j.jaad.2019.02.008

Cited by 20 publications

(25 citation statements)

References 18 publications

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“…[51][52][53][54][55] Although, until today, no standardized method for designing a patient-reported outcome (PRO) questionnaire for patients with skin diseases has been proposed, several studies have assessed in the past the burden of specific skin diseases in patients. [14][15][16][17][18][19][20][21][22][23][24][25][26][27][28][29]56 The methodology proposed herewith allows to design PRO questionnaires using a validated and easy-to-follow method. Building such questionnaires requires the involvement of different specialists, especially dermatologists, statisticians, institutions and professionals specialized in the testing of questionnaires and the recruitment of potentially large panels of participants, including patients.…”

Section: Discussionmentioning

confidence: 99%

“…The authors provide a detailed step-by-step methodology for building a patient-reported burden questionnaire, based on the authors' recommendations for designing selfadministered burden questionnaires described in articles published over the last 10 years for atopic dermatitis, inherited ichthyosis, haemangioma, vitiligo, epidermolysis bullosa, albinism, sensitive skin, psoriasis and hand eczema. [14][15][16][17][18][19][20][21][22][23][24][25][26][27][28][29][30] The methodology follows that proposed by Seidenberg et al and Leidy et al for the building of a multiple ability self-report questionnaire and of health-related quality of life claims. 31,32 Even though this method was developed prior to the publication of the COSMIN risk of bias checklist in 2018, items were verified in posteriori against this checklist.…”

Section: Methodsmentioning

confidence: 99%

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<p>A Method for Designing a Patient Burden Questionnaire in Dermatology</p>

Ezzedine¹,

Bennani²,

Shourick³

et al. 2020

CCID

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Introduction In recent years, the concept of “disease burden” has been given a central role in evaluating patient care, particularly in skin diseases. Measuring patient-reported outcomes (PRO) such as symptoms and disease burden may be useful. Aim To present a methodology that facilitates the development and validation of burden questionnaires for patients suffering from skin diseases. Methodology Based on past published burden questionnaires, a methodology for designing skin disease burden questionnaires was to be developed. Results Based on 16 burden questionnaires developed and published over the last 10 years, the authors propose a standardized methodology for the easy design and validation of disease burden questionnaires for patients with chronic skin diseases. The authors provide detailed guidance for the conception, development and validation of the questionnaires, including reliability, internal consistency, external validity, cognitive debriefing, testing–retesting, translation and cross-cultural adaptation, as well as for statistical analysis. Conclusion The proposed methodology enhances the design and validation of disease burden questionnaires in dermatology. Burden questionnaires may be used in clinical research as well as in daily clinical practice.

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Section: Discussionmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

<p>A Method for Designing a Patient Burden Questionnaire in Dermatology</p>

Ezzedine¹,

Bennani²,

Shourick³

et al. 2020

CCID

Self Cite

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“…However, for studies investigating the impact of the disease more in‐depth, a detailed questionnaire is recommended [e.g. VIPs, DLQI, vitiligo‐specific quality‐of‐life instrument (VitiQoL)] to ensure the required information 7,12 . To check the relevance of outliers, a sensitivity analysis was performed.…”

Section: Discussionmentioning

confidence: 99%

Validation of a Patient Global Assessment for extent, severity and impact to define the severity strata for the Self Assessment Vitiligo Extent Score (SA‐VES)

Geel

Uitentuis

Zuidgeest³

et al. 2020

Acad Dermatol Venereol

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BackgroundThe Self Assessment Vitiligo Extent Score (SA‐VES) is a validated, patient‐reported outcome measure to assess the body surface area affected with vitiligo. Information on how to translate the obtained score into extent, severity and impact strata (mild–moderate–severe) is still lacking. Stratification is helpful to define inclusion criteria for trials, enables comparison and pooling of trial results and can be used for epidemiological research.ObjectivesThe aim was to develop extent, severity and impact strata for the SA‐VES based on validated anchor‐based questions.MethodsIn total, 315 patients with vitiligo (non‐segmental; age ≥ 16) recruited at the Ghent University Hospital (Belgium) completed a questionnaire that was conducted in cooperation with the Dutch Society for vitiligo patients to ensure content validity. First three anchor questions included in the questionnaire [Patient Global Assessment (PtGA) for vitiligo extent, severity and impact] were assessed for content validity, construct validity and intrarater reliability. Subsequently, the PtGAs were used to stratify the SA‐VES based on ROC analysis.ResultsFor all PtGAs (PtGA extent, PtGA severity, PtGA impact), at least 75% of hypotheses evaluated for construct validity were confirmed. Intrarater reliability of all PtGAs was good to excellent (ICCs PtGA extent: 0.623; PtGA severity: 0.828; PtGA impact: 0.851). The optimal cut‐off values of the SA‐VES between the three global categories (mild/limited – moderate – severe/extensive) were 1.05% and 6.45% based on PtGA extent, 2.07% and 4.8% based on PtGA severity and 2% and 3.35% based on PtGA impact.ConclusionThis study provides the first guide for the interpretation of the numerical output obtained by the SA‐VES (vitiligo extent) and enables the translation into a global vitiligo grading for extent, severity and impact. As patients’ interpretation of vitiligo extent, severity and impact may vary amongst patients worldwide, future international studies will be required.

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“…Furthermore, many studies have shown that vitiligo is associated with a substantial disease burden, using various measurement tools 9–11 . In addition, a few studies have related psychological complaints and quality of life to the location of the vitiligo lesions, showing a higher impact on exposed areas, such as the face 12–14 .…”

Section: Introductionmentioning

confidence: 99%

“…For example, Linthorst Homan et al showed that vitiligo particularly on the chest had an impact on the health‐related quality of life, whereas lesions on the hands and face did not 2 . Another study found that lesions on the genital area were associated with a high burden 11 . Florez‐Pollack et al illustrated that lesions on the hands were even more bothersome compared with the face and neck 15 .…”

Section: Introductionmentioning

confidence: 99%

Patients’ perspective on current treatments and demand for novel treatments in vitiligo

Narayan¹,

Uitentuis²,

Luiten³

et al. 2020

Acad Dermatol Venereol

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Background The treatment of non‐segmental vitiligo (NSV) remains a challenge. Current treatments often achieve suboptimal clinical results. To improve these treatment results, several new therapies are being developed and investigated. There is, however, little evidence on the actual need for novel therapies. Objective To assess patients’ perspective on current and novel therapies for vitiligo. Methods A prospective questionnaire study was conducted in a large cohort of vitiligo patients that consecutively visited the outpatient clinic of the Amsterdam University Medical Centre between April 2017 and January 2019. Patients were requested to fill in a digital questionnaire on patient characteristics, disease burden, quality of life, efficacy and satisfaction of current treatments and aspects regarding new treatments. Results A total of 325 vitiligo patients completed the questionnaire (60% response rate). Of the respondents, 94% believed that new and improved treatments are needed and 86% would be willing to participate in clinical trials investigating a new therapy. Sixty‐nine per cent would agree on taking weekly injections if it led to effective treatment results. Of the patients that had received therapy before, 49% reported that the current treatments were not effective and 50% was not satisfied with the current treatments. Sixty‐seven per cent of the patients experienced facial lesions as an extreme burden, whereas this was, 25%, 12% and 10% for lesions on the hands, trunk and feet, respectively. The emotional burden score was significantly higher in dark skin types compared with light skin types (respectively, 8 vs 5, U P < 0.05). Conclusion There is a substantial need for new vitiligo therapies. A considerable number of patients in our study are dissatisfied with current treatments and are emotionally burdened by the disease. Moreover, the vast majority demands novel treatments and is willing to participate in clinical trials.

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Cross-cultural validation of a short-form of the Vitiligo Impact Patient scale (VIPs)

Cited by 20 publications

References 18 publications

<p>A Method for Designing a Patient Burden Questionnaire in Dermatology</p>

<p>A Method for Designing a Patient Burden Questionnaire in Dermatology</p>

Validation of a Patient Global Assessment for extent, severity and impact to define the severity strata for the Self Assessment Vitiligo Extent Score (SA‐VES)

Patients’ perspective on current treatments and demand for novel treatments in vitiligo

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