Usability of Iranian Primary Vitiligo Patient Registry (IPVPR): A Pilot Study.

BACKGROUND: Usability is essential for the acceptance and success of vitiligo patient registry system. Poor usability could decrease system efficiency and effectiveness, and have a negative impact on using the system and providing services. This study aims to evaluate the usability of vitiligo patient registry system. METHODS: This pilot study was conducted in 2021. In total, 17 users who were working in the vitiligo ward participated in the study. System usability scale (SUS) was used to evaluate the usability of vitiligo patient registry system. RESULTS: In the usability evaluation stage, the mean score of the system usability scale was obtained as 77.79. CONCLUSION: Developing vitiligo patient registry system with high usability and making decisions based on the registered data could provide better understanding of this disease and facilitate research in this field. Application of this system and its acceptance by users could decrease costs and increase effectiveness and quality of services.

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

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.