Browsing by Author "Almarzooq, Fatimah"
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Item Restricted Design and Pilot Testing of a Mobile Health Application for the Chronic Care of Sickle Cell Disease in Adolescents and Young Adults in Saudi Arabia: Mixed Methods Study(Saudi Digital Library, 2025) Almarzooq, Fatimah; Pitt, Victoria; Inder, Kerry; Alqudah, Muhammad; Gollapalli, MohammedBackground Saudi Arabia has one of the highest burdens of sickle cell disease, leading to significant healthcare challenges and profoundly affecting the lives of individuals and families. This has been linked to the high prevalence of consanguineous marriage. The adolescent and young adult sickle cell disease-related mortality rate in Saudi Arabia is relatively high, due to a lack of an adolescent self-management transition program to adulthood care. Research on mobile health applications for adolescents and young adults living with sickle cell disease in Saudi Arabia is limited. This thesis explores the design of a mobile health application for adolescents and young adults living with sickle cell disease and evaluates its impact on health-related quality of life, self-management practices, and coping strategies for stressors. Aim The aim of this study was to design, develop and pilot test a mobile health application based on the electronic health enhanced chronic care model for adolescents and young adults living with sickle cell disease in Saudi Arabia referred to as the SCD-care app; evaluate the usability and feasibility of the SCD-care app; and compare health-related quality of life, self-management practices, and coping strategies for stressors pre and post-use of the SCD-care app. Methods This pilot study used an explanatory sequential mixed method design conducted in one Saudi government-funded teaching hospital in the city of Al Khobar in Saudi Arabia. After designing and developing the SCD-care application, pre- and post-intervention quantitative surveys were administered to assess health-related quality of life, self-management practices, and coping strategies for stressors among consenting adolescent and young adults with sickle cell disease. Correlational analyses were used to analyse the quantitative findings. Qualitative in-depth semi-structured interviews were conducted with participants post-intervention and analysed thematically. Further evaluation was conducted on the usability and feasibility of the application. Results from the two methods were integrated and discussed to inform the recommendations for policy, practice and future research. Results The SCD-care app demonstrated a significant positive impact on adolescents and young adults with sickle cell disease in Saudi Arabia. Of 93 potential participants, 53 completed the pre-intervention phase, with 43 completing all study phases. Ten adolescent and young adults participated in the qualitative phase. Quantitative findings showed statistically significant improvements in health-related quality of life, self-management practices, and coping strategies for stressors. Participants reported a 25% increase in overall health-related quality of life post-intervention (p<0.001), with gains in domains such as social functioning, energy, emotional well-being, and general health prescription. Self-management practices improved markedly, with participants 3.4 times more likely to practice self-management post-intervention (p=0.004). Additionally, coping strategies shifted toward active coping, with significant reductions in maladaptive coping, including denial (p=0.014) self-blame (p=0.008) and substance use (p=0.028). The application demonstrated high usability as evidenced by satisfaction scores, while quantitative evaluation of feasibility faced limitations due to server data loss. Qualitative analysis supported these findings, with participants highlighting the app’s usability and supportive features, particularly the reminder functions and educational content. Participants reported increased confidence in managing their condition and made design related suggestions. Themes emerging from qualitative exploration of the usability and feasibility of the SCD-care app included usability and supportiveness. Overall, the SCD-care app enhanced health-related quality of life, self-management practices, and coping with stressors among adolescents and young adults with sickle cell disease in Saudi Arabia. This study’s limitations include its single-hospital setting, small sample size, and non-randomised design, which may affect the generalisability of the findings. There were challenges in participant recruitment and the short duration of the pilot. Conclusion This study successfully designed, developed and piloted the SCD-care app, demonstrating its potential to enhance general well-being for adolescents and young adults with sickle cell disease in Saudi Arabia. Guided by the electronic health chronic care model and an explanatory sequential mixed method approach, the findings demonstrated statistically significant improvements across dimensions of health-related quality of life, self-management practices, and coping strategies and identified the application as a usable tool for addressing the diverse challenges associated with managing sickle cell disease.7 0