Design and Development of a Minimum Data Set for Phenylketonuria Disease
Authors
Abstract:
Introduction: Phenylketonuria is one of the most common autosomal recessive metabolic diseases, characterized by a wide range of neuropsychological and neurocognitive disorders. Without proper care, control, and management, this disease can lead to severe mental retardation and neurobehavioral disorders. Therefore, the objective of this study was to design and develop a Minimum Data Set (MDS) for phenylketonuria disease to introduce indicators effective in further management, control, and monitoring of this disease. Method: The present study was a descriptive-analytical one that was conducted in two stages. In the first stage, a comprehensive review of PubMed, Web of Science, and Scopus databases was performed to identify management and clinical data elements. Then, the necessary data elements were extracted from the studies and put into a questionnaire. In the second stage, 15 pediatricians, nutritionists, psychiatrists, and psychologists completed the designed questionnaire using the two-stage Delphi technique. The descriptive statistics as well as SPSS 23 were used to analyze the data. Results: A total of 133 management and clinical data elements were extracted from the studies. These data elements were divided into three groups of information and 14 categories. According to experts, consensus and collective agreement were reached on 125 data elements in 13 categories. The category of congenital defects was the only category all data elements of which were excluded in the study. Conclusion: Given the clinical and economic challenges that phenylketonuria patients face, determining the minimum data set can enable effective control and management of this disease, reduce costs, and improve management of information relevant to these patients.
similar resources
Minimum data set for electronic health card of schizophrenia
Purpose: Having a clinical information system is a good solution for monitoring medical problems. This system is designed to improve the speed and accuracy of data management. The goal is to replace medical records with a clinical information system to support storing, processing and distributing data in all the sections of a healthcare center. The purpose of this research was to determine ...
full textA Minimum Data Set of Educational Self-care Software for Patients with Cirrhosis
Introduction: Liver cirrhosis has grown significantly in Asian countries over the last few years. However, there is no tool for collecting liver cirrhosis data. The purpose of this study was to design a minimum data set for the self-care education of liver cirrhosis. Methods: This descriptive study was conducted in the first half of 2018 in cooperation with 16 liver specialists of Rasool Akram ...
full textA Minimum Data Set of Educational Self-care Software for Patients with Cirrhosis
Introduction: Liver cirrhosis has grown significantly in Asian countries over the last few years. However, there is no tool for collecting liver cirrhosis data. The purpose of this study was to design a minimum data set for the self-care education of liver cirrhosis. Methods: This descriptive study was conducted in the first half of 2018 in cooperation with 16 liver specialists of Rasool Akram ...
full textDetermination of Minimum Data Set for Designing a Diagnosis Decision Support System and Medication Follow-Up for Multiple Sclerosis
Background and Purpose: Diagnosis of multiple sclerosis (MS) is complicated because of the lack of definite factor. Decision support systems are expert systems which help physicians in decision-making process. First step in designing the system is identification of a minimum dataset (MDS). This study aimed to determine minimum dataset required to design diagnosis decision support system. Mater...
full textMy Resources
Journal title
volume 8 issue 1
pages 33- 41
publication date 2021-06
By following a journal you will be notified via email when a new issue of this journal is published.
No Keywords
Hosted on Doprax cloud platform doprax.com
copyright © 2015-2023