scholarly journals Improving Transitions of Care for Young Adults With Congenital Heart Disease: Mobile App Development Using Formative Research (Preprint)

2018 ◽  
Author(s):  
Keila N Lopez ◽  
Michael O'Connor ◽  
Jason King ◽  
James Alexander ◽  
Melissa Challman ◽  
...  
Keyword(s):  
Best Practices ◽  
Technology Use ◽  
Congenital Heart ◽  
Formative Research ◽  
Mobile App ◽  
Transition To Adult Care ◽  
Adult Care ◽  
Transition Readiness ◽  
Successful Transition ◽  
App Development

BACKGROUND Congenital heart diseases (CHDs) are the most common type of birth defects. Improvements in CHD care have led to approximately 1.4 million survivors reaching adulthood. Successful transition and transfer from pediatric to adult care is crucial. Unfortunately, less than 30% of adolescents with CHD successfully transition to adult care; this number is lower for minority and lower socioeconomic status populations. Few CHD programs exist to facilitate successful transition. OBJECTIVE The goal of our study was to describe the formative research used to develop a prototype mobile app to facilitate transition to adult care for adolescents with CHD. METHODS A literature search about best practices in transition medicine for CHD was conducted to inform app development. Formative research with a diverse group of CHD adolescents and their parents was conducted to determine gaps and needs for CHD transition to adult care. As part of the interview, surveys assessing transition readiness and CHD knowledge were completed. Two adolescent CHD expert panels were convened to inform educational content and app design. RESULTS The literature review revealed 113 articles, of which 38 were studies on transition programs and attitudes and 3 identified best practices in transition specific to CHD. A total of 402 adolescents aged 15 to 22 years (median 16 years) participated in semistructured interviews. The group was racially and ethnically diverse (12.6% [51/402] African American and 37.8% [152/402] Latino) and 42.0% (169/402) female; 36.3% (146/402) received public insurance. Most adolescents (313/402, 76.7%) had moderate or severe CHD complexity and reported minimal CHD understanding (79.0% [275/348] of those aged 15 to 17 years and 61.1% [33/54] of those aged 18 to 22 years). Average initial transition readiness score was 50.9/100, meaning that transition readiness training was recommended. When participants with moderate to severe CHD (313/402, 77.9%) were asked about technology use, 94.2% (295/313) reported having access to a mobile phone. Interviews with parents revealed limited interactions with the pediatric cardiologist about transition-related topics: 79.4% (331/417) reported no discussions regarding future family planning, and 55.2% (230/417) reported the adolescent had not been screened for mental health concerns (depression, anxiety). Further, 66.4% (277/417) reported not understanding how health care changes as adolescents become adults. Adolescents in the expert panels (2 groups of 3 adolescents each) expressed interest in a CHD-specific tailored app consisting of quick access to specific educational questions (eg, “Can I exercise?”), a CHD story-blog forum, a mentorship platform, a question and answer space, and a checklist to facilitate transition. They expressed interest in using the app to schedule CHD clinic appointments and receive medication reminders. Based on this data, a prototype mobile app was created to assist in adolescent CHD transition. CONCLUSIONS Formative research revealed that most adolescents with CHD had access to mobile phones, were not prepared for transition to adult care, and were interested in an app to facilitate transition to adult CHD care. Understanding adolescent and parent needs, interests, and concerns helped in the development of a mobile app with a broader, tailored approach for adolescents with CHD.

scholarly journals Improving Transitions of Care for Young Adults With Congenital Heart Disease: Mobile App Development Using Formative Research

2018 ◽  
Vol 2 (2) ◽  
pp. e16 ◽  
Author(s):  
Keila N Lopez ◽  
Michael O'Connor ◽  
Jason King ◽  
James Alexander ◽  
Melissa Challman ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Young Adults ◽  
Heart Disease ◽  
Congenital Heart ◽  
Formative Research ◽  
Mobile App ◽  
Transitions Of Care ◽  
App Development

scholarly journals Transition to adult care: Exploring factors associated with transition readiness among adolescents and young people in adolescent ART clinics in Uganda

PLoS ONE ◽  
2021 ◽  
Vol 16 (4) ◽  
pp. e0249971
Author(s):  
Scovia Nalugo Mbalinda ◽  
Sabrina Bakeera-Kitaka ◽  
Derrick Amooti Lusota ◽  
Philippa Musoke ◽  
Mathew Nyashanu ◽  
...  
Keyword(s):  
Young People ◽  
Tertiary Education ◽  
Multivariate Logistic Regression Analysis ◽  
Hiv Treatment ◽  
Hiv Care ◽  
Transition To Adult Care ◽  
People Living With Hiv ◽  
Adult Care ◽  
Transition Readiness ◽  
Factors Associated

Background Transition readiness refers to a client who knows about his/her illness and oriented towards future goals and hopes, shows skills needed to negotiate healthcare, and can assume responsibility for his/ her treatment, and participate in decision-making that ensures uninterrupted care during and after the care transition to adult HIV care. There is a paucity of research on effective transition strategies. This study explored factors associated with adolescent readiness for the transition into adult care in Uganda. Methods A cross-sectional study was conducted among 786 adolescents, and young people living with HIV randomly selected from 9 antiretroviral therapy clinics, utilizing a structured questionnaire. The readiness level was determined using a pre-existing scale from the Ministry of Health, and adolescents were categorized as ready or not ready for the transition. Bivariate and multivariate analyses were conducted. Results A total of 786 adolescents were included in this study. The mean age of participants was 17.48 years (SD = 4). The majority of the participants, 484 (61.6%), were females. Most of the participants, 363 (46.2%), had no education. The majority of the participants, 549 (69.8%), were on first-line treatment. Multivariate logistic regression analysis found that readiness to transition into adult care remained significantly associated with having acquired a tertiary education (AOR 4.535, 95% CI 1.243–16.546, P = 0.022), trusting peer educators for HIV treatment (AOR 16.222, 95% CI 1.835–143.412, P = 0.012), having received counselling on transition to adult services (AOR 2.349, 95% CI 1.004–5.495, P = 0.049), having visited an adult clinic to prepare for transition (AOR 6.616, 95% CI 2.435–17.987, P = < 0.001) and being satisfied with the transition process in general (AOR 0.213, 95% CI 0.069–0.658, P = 0.007). Conclusion The perceived readiness to transition care among young adults was low. A series of individual, social and health system and services factors may determine successful transition readiness among adolescents in Uganda. Transition readiness may be enhanced by strengthening the implementation of age-appropriate and individualized case management transition at all sites while creating supportive family, peer, and healthcare environments.

Do not forget the parents-Parents' concerns during transition to adult care for adolescents with congenital heart disease

2017 ◽  
Vol 44 (2) ◽  
pp. 278-284 ◽  
Author(s):  
E. L. Bratt ◽  
Å. Burström ◽  
K. Hanseus ◽  
A. Rydberg ◽  
M. Berghammer ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Congenital Heart ◽  
Transition To Adult Care ◽  
Adult Care

scholarly journals Ready for Transfer to Adult Care? A Triadic Evaluation of Transition Readiness in Adolescents With Congenital Heart Disease and Their Parents

2019 ◽  
Vol 25 (3) ◽  
pp. 447-468 ◽  
Author(s):  
Åsa Burström ◽  
Mariela Acuña Mora ◽  
Maria Öjmyr-Joelsson ◽  
Carina Sparud-Lundin ◽  
Annika Rydberg ◽  
...  
Keyword(s):  
Congenital Heart Disease ◽  
Heart Disease ◽  
Parental Involvement ◽  
Chronic Conditions ◽  
Congenital Heart ◽  
Adult Care ◽  
Mothers And Fathers ◽  
Negatively Associated ◽  
Transition Readiness ◽  
Multivariable Analyses

Transfer to adult care for adolescents with chronic conditions ought to be determined by transition readiness. The aims of this study were (a) to describe the level of readiness for transition in adolescents with congenital heart disease, (b) to compare adolescents’ assessment of transition readiness with their parents’ assessments, and (c) to study potential correlates of transition readiness. A total of 157 triads of adolescents aged 14 to 18 years and their parents completed the Readiness for Transition Questionnaire. Adolescents scored higher on overall readiness than their parents. Multivariable analyses revealed that higher levels of adolescents’ overall readiness were associated with a less threatening view of the illness, a higher level of empowerment, and with higher mothers’ and fathers’ overall readiness scores. Adolescents’ responsibility scores were positively associated with age and parental adolescent responsibility scores. Parental involvement scores were negatively associated with adolescents’ age and positively with the mothers’ parental involvement scores. By using a triadic evaluation, the results of the present study significantly extend what is currently known about this population.

scholarly journals Adolescent and Adult HIV Providers' Definitions of HIV-Infected Youths' Successful Transition to Adult Care in the United States

2017 ◽  
Vol 31 (10) ◽  
pp. 421-427 ◽  
Author(s):  
Morgan M. Philbin ◽  
Amanda E. Tanner ◽  
Alice Ma ◽  
Brittany D. Chambers ◽  
Samuella Ware ◽  
...  
Keyword(s):  
United States ◽  
The United States ◽  
Transition To Adult Care ◽  
Adult Care ◽  
Successful Transition

scholarly journals An evaluation of the effectiveness, facilitators and barriers of HIV Teen Clubs in achieving successful transition from teen to adult care in Blantyre, Malawi using the RE‐AIM Framework.

2020 ◽  
Author(s):  
Jerome Galagade ◽  
Victor Mwapasa
Keyword(s):  
Service Providers ◽  
Implementation Fidelity ◽  
Health Facilities ◽  
Transition Time ◽  
Transition To Adult Care ◽  
Care Transition ◽  
Adult Care ◽  
Factors Associated ◽  
Successful Transition ◽  
Living With Hiv

Abstract Background: High attrition is a major problem for Adolescent Living with HIV (ALHIV) transitioning from pediatric to adult care. Although the HIV Teen Club model has been shown to promote antiretroviral (ARV) adherence and viral suppression among ALHIV, its effect on promoting transitioning ALHIV from pediatric to adult care has not been formally evaluated. We sought to estimate the proportion of ALHIV enrolled in HIV Teen Clubs who successfully transitioned to adult care within six months of the expected transition time and assess health facilities’ fidelity in implementing HIV Teen Clubs’ adult care transition protocols and factors associated with successful transition to adult Care.Methods: From September 2018 to June 2019, we conducted a retrospective descriptive cohort study involving ALHIV attending HIV Teen Clubs in 14 primary health facilities in Blantyre, Malawi who had reached the recommended transition age of 18/19 years between July - December 2017. After obtaining consent, we reviewed their records to assess the proportion who successfully transitioned and also factors associated with transitioning. Checklist was used to ascertain fidelity of implementation of HIV Teen Club transition protocols. In-depth interviews were conducted with service providers (SP) in health facilities providing HIV Teen Club to get their perspectives on reasons for successful or unsuccessful transition.Results: Of the 131 eligible ALHIV enrolled in the study, only 6.9% (n=9) successfully transitioned to adult care within six months of the expected transition time. The overall fidelity in implementing adult care transition protocols in health facilities was medium. There was an association between implementation fidelity and ALHIV successful transition with 2 out of 3 health facilities with high implementation fidelity also successfully transitioning ALHIV into adult care. Successful ALHIV transitioning was associated with urban location of health facilities and ownership of the facilities by NGOs. SPs reported that lack of training in transitioning ALHIV, lack of clear guidelines, inadequate human resource and refusal of ALHIV to transition were some of the health system factors negatively influencing successful transition.Conclusions: Training and mentorship of SP in implementing transitioning protocols and adequately resourcing HIV teen clubs may improve their operations and facilitate successful transitioning.

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