Exploring the Needs of Adolescents With Sickle Cell Disease to Inform a Digital Self-Management and Transitional Care Program: Qualitative Study

Abstract

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.

The effect of a smartphone-based pain management application on pain intensity and quality of life in adolescents with chronic pain

“…Another study divided the self-management needs of adolescents with sickle cell anemia into four themes. Some subthemes were concerned with the effect of relationship with peers, the importance of self-management, communication establishment, and social support 42 . In a study conducted by Slater et al (2016) on 16–24-year-old adolescents with permanent musculoskeletal pain, the importance of social support, especially peer groups’ support, was emphasized 43 .…”

Transition readiness among adolescents with rare endocrine conditions

“…This suboptimal knowledge of the medical condition contrasts with what was found in patients with thalassemia and diabetes mellitus, where the majority could name their condition and medication ( 3 ). According to patients, medical knowledge is an important factor in transition readiness ( 11 ). This was confirmed in a systematic review by Stinson et al ( 21 ), which showed that medical knowledge is positively related to transition readiness.…”

“…Up to now, SMS and transition readiness have been mainly studied among AYA with non-endocrine diseases such as inflammatory bowel disease, sickle cell disease, kidney diseases or common endocrine disorders such as diabetes mellitus ( 5 , 11 , 12 , 13 , 14 , 15 , 16 , 17 , 18 , 19 , 20 , 21 ). For example, Monaghan et al ( 22 ) provide an overview of best practices for health care professionals working with adolescents with diabetes type I who are ready for transition.…”

Noninvasive Hemoglobin Level Prediction in a Mobile Phone Environment: State of the Art Review and Recommendations

“…When an adequate Hb blood level (men≥13 g/dL, women≥12 g/dL) is not maintained, the disorder complicates the function of the major organs (eg, kidney, brain, and heart) that require oxygen [2]. Anemia, a common Hb disorder, may be caused by blood loss, which is mostly a chronic condition (as occurs with menstruation), decreased red blood cell (RBC) production associated with iron and other nutritional deficiencies, and increased RBC destruction [3,4]. The central role of Hb is to maintain physiologic homeostasis, and the high frequencies of Hb abnormalities make assessment of this parameter a daily clinical activity.…”