Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home

White, Patience H.; Cooley, W. Carl

doi:10.1542/peds.2018-2587

Cited by 773 publications

(365 citation statements)

References 245 publications

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“…Our findings illuminate the need for improved infrastructure to provide effective HCT and partnerships to help integrate HCT support within other life course systems (e.g. educational, vocational, community) (White et al, 2018). Service models and interventions focused on HCT and collaboration between systems are required to address the needs of AYAs with ID and their parents.…”

Section: Discussionmentioning

confidence: 83%

“…This illuminates the potential of a parent peer coach-facilitated HCT intervention for this population. Parent partnerships are one way to address the recent clinical recommendation for integrated HCT support within other life course systems (White et al, 2018). Parent-to-parent peer mentorship and parents as transition experts have shown positive impacts for parents of youth with ID and other disabilities (Freeman et al, 2015;Kingsnorth et al, 2011;Nguyen et al, 2018) as they have the critical element of the shared experience (Nguyen et al, 2018) that health care providers commonly lack.…”

Section: Discussionmentioning

confidence: 99%

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Health Care Transition for Adolescent and Young Adults with Intellectual Disability: Views from the Parents

Franklin

Beyer

Brotkin

et al. 2019

Journal of Pediatric Nursing

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This study explored the health care transition (HCT) experiences of parents of adolescents and young adults (AYAs) with intellectual disability (ID), 18-33 years of age, including barriers and facilitators to the AYA's transition to adulthood within and between the medical, educational, community, and vocational systems. Design and methods: A qualitative descriptive design with semi-structured individual interviews with 16 parent participants was used. Purposive sampling of parents was utilized with variation on race/ethnicity and AYA age, stage in transition, and condition. This study was conducted through a major medical center in the southeast United States. Content analysis was utilized. Results: Three overarching themes represented the factors and essence of supporting AYAs with ID transition to adulthood. Inefficient and siloed systems illuminated barriers families are commonly experiencing within and between the medical, educational, community, and vocational systems. 'Left out here floundering' in adulthood, described the continued inadequacy of resources within each of these systems and parent's having to find available resources themselves. Hope despite uncertainty, included the perceived costs and benefits of their AYA's disability and the value of parent peer support in providing key knowledge of resources, strategies, and perspectives. Conclusions: Our findings illuminate the need for improved infrastructure to provide effective HCT and partnerships to help integrate HCT support within other life course systems. Results support the rationale for noncategorical HCT-focused approach. Practice implications: A parent peer coach-facilitated intervention offers promise for bridging the gap between systems and meeting family needs.

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Section: Discussionmentioning

confidence: 83%

Section: Discussionmentioning

confidence: 99%

Health Care Transition for Adolescent and Young Adults with Intellectual Disability: Views from the Parents

Franklin

Beyer

Brotkin

et al. 2019

Journal of Pediatric Nursing

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“…This should not be so. Some guidelines 6,28 have suggested ages as early as 12 to 14 years to move a child to adult care, but consensus opinion tend to rather adopt an individualized approach based on the transition readiness of each child. 29 As seen also in other studies 10,26,30 those who were not willing to move to adult-oriented care, expressed reasons related to strong paediatric staff (doctors and nurses) attachment.…”

Section: Discussionmentioning

confidence: 99%

“…[3][4][5] This was supported by the American Academy of Pediatricians which described several activities designed to support transition beginning when a patient is 12 years old. 6 The recommendation is that a transition plan should have been written for every child by 14 years of age as a critical step to improve the transition process to adult-oriented healthcare. 7 These milestone ages correspond with commencement of puberty, which on the average is similar, but there may delay the transitioning process for the African adolescent who lags behind their Caucasian counterparts in cognitive development.…”

Section: Introductionmentioning

confidence: 99%

<p>Pre-Transition Readiness in Adolescents and Young Adults with Four Chronic Medical Conditions in South East Nigeria – An African Perspective to Adolescent Transition</p>

Ayuk

Onukwuli

Obumneme-Anyim

et al. 2020

AHMT

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Introduction:When a child reaches a certain age, he or she moves over to the adult physician. For this to maximally benefit the child, there has to be a process of equipping the child with skills required for taking on more responsibilities. Transitioning involves a process in which the adolescent with chronic illness is prepared ahead of time to enable them to eventually transfer to adult care with good outcomes. In high-income countries with wellorganized health financing, the transitioning process begins as early as 12 years. In Africa, this process is not as organized and most hospitals would write a referral letter once the child turns 18 and transfer to adult clinic. In four of our chronic disease clinics (asthma, HIV, sickle cell anaemia and chronic kidney diseases) patients up to 24 years old are still attending the paediatric clinics. Understanding transition readiness among African adolescents remains a gap. Our findings will form a basis for informed practices for adolescent clinics in African countries. Methods: This was a descriptive cross-sectional study of pre-transition readiness in adolescents and young adults with chronic illnesses attending four outpatient specialist clinics in a tertiary hospital in Enugu Nigeria. This was done using the validated STARx Questionnaire. Total scores were computed and scores nearer the upper limit of 90 were acceptable, while mean subdomain scores of 4 and above were considered as optimal level of transition readiness. Demographic and clinical data were also collected. Acceptability to move on to adult-oriented care was documented using binary response (yes/no). Cross tabulations were done, and likelihood ratios obtained for predictors of acceptability of transition. Significant value was set at p-value of ≤0.05. Results: A total of 142 adolescents and young adults aged 12 to 24 years were studied. There were 38.0% (54), 24.6% (35), 22.5% (32) and 14.8% (21) from HIV, sickle cell anaemia, asthma and nephrology clinics, respectively. Their mean age was 15.6 years ± 2.4, and 48.6% (69) were male. The mean total transition readiness score was 56±14 and this was not nearer the higher spectrum of total scores obtainable. Highest mean scores (3.7) occurred in the knowledge subdomain while least mean score (2) was noted in the use of medication reminders. The males had highest scores in the knowledge subdomain while the females were better informed about medication adherence and were more inquisitive about their chronic illness. Only about 37% (53) of the adolescents and young adults welcomed the idea of moving on to adult-care clinics. Children who had less frequent emergency hospital visits and better treatment outcome accepted the idea of transfer to adult care. Irrespective of the age all participants had suboptimal subdomain scores. High scores did not influence the participants' choice to embrace transfer to adult care.

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“…These include the anxiety associated with both the parents giving up healthcare responsibility and adolescents becoming accountable for their own care [4,6,7]. Adolescents may struggle with leaving their pediatric healthcare team, in particular if there has been a long-standing relationship, and have difficulty with the formation of a strong relationship with the adult provider [4,8,9]. Pediatric clinicians are also hesitant to relinquish their care to an adult healthcare provider due to patient connection and lack of faith in adult care [4,9].…”

Section: What Is Pediatric To Adult Health Care Transition?mentioning

confidence: 99%

Transition to Adult Care for Obstructive Sleep Apnea

Heffernan

Malik

Cheng

et al. 2019

JCM

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Obstructive sleep apnea may occur throughout the lifespan, with peak occurrences in early childhood and during middle and older age. Onset in childhood is overwhelmingly due to adeno-tonsillar hypertrophy, while in adulthood, contributors include risk factors, such as obesity, male sex, and aging. More recently, there has been a precipitous increase in the prevalence of obstructive sleep apnea in youth. Drivers of this phenomenon include both increasing obesity and the survival of children with complex medical conditions into adulthood. Appropriate treatment and long-term management of obstructive sleep apnea is critical to ensure that these youth maintain well-being unfettered by secondary comorbidities. To this end, patient engagement and seamless transition of care from pediatric to adult health care systems is of paramount importance. To date, this is an unacknowledged and unmet need in most sleep programs. This article highlights the need for guideline-driven sleep disorder transition processes and illustrates the authors’ experience with the development of a program for sleep apnea.

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Supporting the Health Care Transition From Adolescence to Adulthood in the Medical Home

Cited by 773 publications

References 245 publications

Health Care Transition for Adolescent and Young Adults with Intellectual Disability: Views from the Parents

Health Care Transition for Adolescent and Young Adults with Intellectual Disability: Views from the Parents

<p>Pre-Transition Readiness in Adolescents and Young Adults with Four Chronic Medical Conditions in South East Nigeria – An African Perspective to Adolescent Transition</p>

Transition to Adult Care for Obstructive Sleep Apnea

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