Developing a minimum data set required to create a registry system for patients with vitiligo

Zahra Arabkermani; Abbas Sheikhtaheri; Zeinab Aryanian; Peivand Bastani; Nafiseh Esmaeli; Azadeh Bashiri; Gholamhossein Mehralian; Roxana Sharifian

doi:10.1016/j.heliyon.2022.e12641

Developing a minimum data set required to create a registry system for patients with vitiligo

Heliyon. 2022 Dec 24;8(12):e12641. doi: 10.1016/j.heliyon.2022.e12641. eCollection 2022 Dec.

Authors

Zahra Arabkermani^{1

2}, Abbas Sheikhtaheri³, Zeinab Aryanian^{4

5}, Peivand Bastani¹, Nafiseh Esmaeli⁴, Azadeh Bashiri¹, Gholamhossein Mehralian⁶, Roxana Sharifian¹

Affiliations

¹ Department of Health Information Management, School of Health Management and Information Sciences, Health Human Resources Research Center, Clinical Education Research Center, Shiraz University of Medical Sciences, Shiraz, Iran.
² Razi Hospital, Tehran University of Medical Sciences, Tehran, Iran.
³ Department of Health Information Management, School of Health Management and Information Sciences, Iran University of Medical Sciences, Tehran, Iran.
⁴ Autoimmune Bullous Diseases Research Center, Tehran University of Medical Sciences, Tehran, Iran.
⁵ Department of Dermatology, Babol University of Medical Sciences, Babol, Iran.
⁶ School of Pharmacy, Shahid Beheshti University of Medical Sciences, Tehran, Iran.

Abstract

Background: 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: 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: 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: 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.

Keywords: Minimum data set (MDS); Registry system; Vitiligo.