Designing an mHealth Roadmap for the Journey to Self-Management: A Qualitative Study with Adolescents and Young Adults Living with Chronic Illness.

OBJECTIVES: Adolescents and young adults (AYA) with chronic illnesses often struggle with illness self-management. The objective of this study is to understand how AYA with various chronic illnesses develop self-management skills and which mobile health (mHealth) strategies they believe could be helpful. METHODS: Semi-structured interviews were conducted with patients, between 16 to 20 years old, living with at least one chronic illness (N = 19), between 2018 and 2019 in Los Angeles, CA. Three coders completed thematic coding to understand how AYA develop and maintain self-management skills, to inform the development of mHealth interventions appropriate across a variety of chronic conditions. RESULTS: Results suggest that AYA develop self-management skills through several strategies, including (1) getting organized, (2) making it work for me and (3) keeping the right mentality. AYA described developing these strategies through: (1) receiving social support, (2) accessing helpful tools and technologies, and (3) going through a maturation process. They provided recommendations for mHealth intervention developers. DISCUSSION: The results suggest that an appealing mHealth intervention could support AYA patients in proactively acquiring self-management skills and prevent having to rely on trial and error or uneven access to guidance and support. Interventions should be responsive to individual technology preferences and practices.

Associations of Reproductive Health Concerns, Health-Related Quality of Life, and Stress Among Adolescents and Young Adults with Chronic Illness.

OBJECTIVE: Adolescents and young adults (AYA) living with chronic illness are as sexually active and interested in having children as healthy peers. Few studies have examined the intersection of managing chronic illness and concerns about realizing reproductive goals, including fertility, pregnancy, childbirth, and parenting. Even less is understood regarding how these concerns might be associated with psychological distress. This study examines associations between the reproductive health concerns (RHC) and health-related stress of AYA patients living with chronic conditions including rheumatologic, cardiac, pulmonology, gastrointestinal disorders, and solid organ transplant. METHODS: A total of 140 patients aged 15 to 20 years (68% female; 81% Hispanic/Latinx) recruited from a transition program located at a safety-net pediatric institution completed surveys examining multiple dimensions of RHC and health-related quality of life (life satisfaction, illness burden, and illness-related anxiety) and condition-related stress. Exploratory factor analyses of RHC variables yielded 3 factors used in regression analyses to identify convergent validity of RHC factors with health-related mental health measures. RESULTS: Three RHC factor loadings emerged: concern about availability to raise children (timing/future), impact of condition/medication on fertility and childbearing (pregnancy/fertility), and impact of condition on motivation to have children (motivation/decision-making). Positive associations were found between all RHC factors and illness-related anxiety; condition-related stress was associated with motivation/decision-making. CONCLUSION: RHC, health-related anxiety, and stress can impede healthy sexual and reproductive health and development of AYA living with chronic conditions. Providers' proactive exploration of patients' concerns about their reproductive future can offer critical support as they navigate the unique existential challenges of early adulthood.

The use of cell phone reminder calls for assisting HIV-infected adolescents and young adults to adhere to highly active antiretroviral therapy: a pilot study.

Long-term medication regimen adherence is challenging in all populations, but in the HIV-infected adolescent population the frequency of poverty, homelessness, substance abuse, and mental illness make highly active antiretroviral therapy (HAART) adherence even more challenging. In 2003, we developed a pilot program for HIV-infected adolescents and young adults between the ages of 16 and 24 who were either going to begin a HAART regimen for the first time or begin a new HAART regimen. Participants received a free cell phone with a local service plan for approximately 6 months. Participants received phone call reminders for 12 weeks. Call frequency was tapered at 4-week intervals. Patients were assessed at 4-week intervals to determine the perceived intrusiveness or helpfulness of receiving calls, and missed medication doses. Eight consecutive patients were recruited for the study, and five were able to complete it through the 24 weeks. Most participants found the calls to be helpful and the level of intrusion into their daily lives acceptable. Using cell phone reminders to assist patients does not require an extensive amount of daily staff time. Tapering calls rapidly over 3 months, followed by discontinuation of calls provided inadequate support for subjects, especially those with significant psychosocial issues such as substance abuse. Use of cell phone reminders to assist adolescents adhere with HIV medications was practical and acceptable to pilot study participants. Viral suppression waned for all but two patients after termination of cell phone reminders and suggests that a 12-week intervention was not adequate for most subjects. Larger prospective studies of cell phone observation of therapy will be needed to determine if this intervention can improve long-term adherence and health outcomes.