Study Protocol: A Mixed-methods Study to Develop and Validate a Questionnaire of Self-management and Its Relationship With Quality of Life Among Thalassemia Adolescents

• Published in: Malaysian Journal of Medicine and Health Sciences
• Main Author: Wahab S.M.A.; Sharoni S.K.A.; Ismail W.I.; Nor N.S.M.
• Format: Article
• Language: English
• Published: Universiti Putra Malaysia Press 2024
• Online Access: https://www.scopus.com/inward/record.uri?eid=2-s2.0-85210772906&doi=10.47836%2fmjmhs.20.s9.42&partnerID=40&md5=d6ddca8063c058262721dd191e937a2e

Introduction: Few studies have been published on self-management among Malaysian adolescents with thalassaemia due to the paucity of specific theoretical and culturally appropriate measures, which has led to psychological effects and non-compliance with conventional treatment. This study aims to develop and validate a questionnaire to evaluate self-management among Malaysian adolescents with thalassaemia. Methods: An exploratory mixed-methods design will be used in this study. In Phase I, we will recruit adolescents with thalassaemia aged 10 to 19 and their caregivers from one of the thalassaemia societies for a semi-structured interview. Participant recruitment will cease upon achieving thematic saturation. Coding and theme analyses will be used to identify self-management domains and items. In Phase II, we will develop self-management instruments based on the domains and items generated in Phase I. Content validity will be reviewed by ten expert panels, and a pilot study will be tested with 42 conveniently selected adolescents aged 10 to 19. Four hundred twenty-two participants from eleven thalassaemia NGOs will participate in the psychometric evaluation of the items in the self-management instruments. Expected Outcome: With these instruments, healthcare providers will be able to gather crucial information regarding thalassaemia adolescents’ self-management, which may improve adolescents’ adherence to treatment and lower their levels of serum ferritin, enhancing their health-related quality of life. Trial registrations: Ethical approval was obtained from the UiTM Ethics Research Committee (REC/10/2023-PG/MR/401) and the Malaysia Thalassaemia Society. © 2024 Universiti Putra Malaysia Press. All rights reserved.