Background
Accessible self-management interventions are critical for adolescents with sickle cell disease to better cope with their disease, improve health outcomes and health-related quality of life, and promote successful transition to adult health care services. However, very few comprehensive self-management and transitional care programs have been developed and tested in this population. Internet and mobile phone technologies can improve accessibility and acceptability of interventions to promote disease self-management in adolescents with sickle cell disease.
Objective
The aim of this study was to qualitatively explore the following from the perspectives of adolescents, parents, and their health care providers: (1) the impact of sickle cell disease on adolescents to identify challenges to their self-management and transitional care and (2) determine the essential components of a digital self-management and transitional care program as the first phase to inform its development.
Methods
A qualitative descriptive design utilizing audio-recorded, semistructured interviews was used. Adolescents (n=19, aged 12-19 years) and parents (n=2) participated in individual interviews, and health care providers (n=17) participated in focus group discussions and were recruited from an urban tertiary care pediatric hospital. Audio-recorded data were transcribed verbatim and organized into categories inductively, reflecting emerging themes using simple content analysis.
Results
Data were categorized into 4 major themes: (1) impact of sickle cell disease, (2) experiences and challenges of self-management, (3) recommendations for self-management and transitional care, and (4) perceptions about a digital self-management program. Themes included subcategories and the perspectives of adolescents, parents, and health care providers. Adolescents discussed more issues related to self-management, whereas health care providers and parents discussed issues related to transition to adult health services.
Conclusions
Adolescents, parents, and health care providers described the continued challenges youth with sickle cell disease face in terms of psychosocial impacts and stigmatization. Participants perceived a benefit to alleviating some of these challenges through a digital self-management tool. They recommended that an effective digital self-management program should provide appropriate sickle cell disease–related education; guidance on developing self-advocacy and communication skills; empower adolescents with information for planning for their future; provide options for social support; and be designed to be engaging for both adolescents and parents to use. A digital platform to deliver these elements is an accessible and acceptable way to address the self-management and transitional care needs of adolescents.
BackgroundPrevious studies have evaluated the individual effects of acute myocardial infarction (AMI) and diabetes mellitus on health-related quality of life outcomes (QOL). Due to the rising incidence of these comorbid conditions, it is important to examine the synergistic impact of diabetes mellitus and AMI on QOL.MethodsIn this study, we assessed using several previously validated questionnaires the QOL and functional status of 96 diabetic patients and 491 non-diabetic patients admitted to Quebec hospital sites with AMI between 1997 and 1998. We also conducted multivariate analyses to ascertain whether diabetes mellitus was an independent determinant of SF-36 physical functioning (PCS) and mental health (MCS) component score QOL outcomes after AMI.ResultsBoth patient groups had similar baseline clinical characteristics, but diabetic patients had slightly higher rates of cardiac risk factors compared to non-diabetics. Overall, QOL measures were similar between both patient groups at baseline, but diabetic patients reported poorer functional status than non-diabetic patients. Over the study period, there were significant differences between the QOL and functional status of diabetic and non-diabetic populations. By one year, diabetic patients reported poorer QOL outcomes than non-diabetic patients. However, diabetic patients showed greater improvements in their functional status, but were less likely to return to work compared to non-diabetic patients. In contrast with these findings, our multivariate analyses showed that diabetes mellitus was not an independent determinant of QOL and functional status.ConclusionOur study findings suggest that diabetes mellitus is not an independent determinant of QOL after AMI.
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