Developing a minimum data set required to create a registry system for patients with vitiligo.
Minimum data set (MDS)
Registry system
Vitiligo
Journal
Heliyon
ISSN: 2405-8440
Titre abrégé: Heliyon
Pays: England
ID NLM: 101672560
Informations de publication
Date de publication:
Dec 2022
Dec 2022
Historique:
received:
02
07
2022
revised:
22
11
2022
accepted:
19
12
2022
entrez:
9
1
2023
pubmed:
10
1
2023
medline:
10
1
2023
Statut:
epublish
Résumé
Vitiligo can be psychologically devastating and stigmatizing, with significant impacts on patients. As such, the early treatment and understanding of the profound psychosocial impact of this skin disease cannot be overstated. A standardized method of data collection with consistent definitions is a prerequisite for vitiligo management. Against this background, this study aimed to develop a minimum data set (MDS) for the vitiligo registry system. The study was conducted in four steps in 2020 in Iran. After a comprehensive literature review to find relevant resources in English, medical records of patients with vitiligo were examined to assess the status quo of the country. Then, a model was developed from the data obtained in the previous step and through interviews. To reach a consensus on the data items, the Delphi technique was applied using a questionnaire, and the mean of expert judgments on each data item was calculated. A total of 127 data elements were developed through two rounds of the Delphi technique. The MDS was divided into an administrative part with three sections and 18 data items, and a clinical part with seven sections and 109 data items. This study is the first step towards establishing a registry system for patients with vitiligo. Accurate identification of data items, such as MDSs, can be useful in establishing a vitiligo registry, planning, and improving the quality of patient care.
Sections du résumé
Background
UNASSIGNED
Vitiligo can be psychologically devastating and stigmatizing, with significant impacts on patients. As such, the early treatment and understanding of the profound psychosocial impact of this skin disease cannot be overstated. A standardized method of data collection with consistent definitions is a prerequisite for vitiligo management. Against this background, this study aimed to develop a minimum data set (MDS) for the vitiligo registry system.
Materials and methods
UNASSIGNED
The study was conducted in four steps in 2020 in Iran. After a comprehensive literature review to find relevant resources in English, medical records of patients with vitiligo were examined to assess the status quo of the country. Then, a model was developed from the data obtained in the previous step and through interviews. To reach a consensus on the data items, the Delphi technique was applied using a questionnaire, and the mean of expert judgments on each data item was calculated.
Results
UNASSIGNED
A total of 127 data elements were developed through two rounds of the Delphi technique. The MDS was divided into an administrative part with three sections and 18 data items, and a clinical part with seven sections and 109 data items.
Conclusion
UNASSIGNED
This study is the first step towards establishing a registry system for patients with vitiligo. Accurate identification of data items, such as MDSs, can be useful in establishing a vitiligo registry, planning, and improving the quality of patient care.
Identifiants
pubmed: 36619402
doi: 10.1016/j.heliyon.2022.e12641
pii: S2405-8440(22)03929-9
pmc: PMC9812701
doi:
Types de publication
Journal Article
Langues
eng
Pagination
e12641Informations de copyright
© 2022 The Authors.
Déclaration de conflit d'intérêts
The authors declare no competing interests.
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