Challenges in Transitioning to Adult Care for Children with Complex Healthcare Needs

Written by: Allison Hess

Edited by: Zainab Anwar, David Jang, Emily Choi, and Lilly Hall

Illustrated by: Rebecca Sidi

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Over the past 20 years both the prevalence of childhood chronic diseases [1] and the number of children and young adults with complex care needs (CCN) have increased significantly due to improvements in care for certain pediatric conditions that previously had very short life expectancies, alongside recent increases in childhood obesity and diabetes [2,3]. These children have a unique set of healthcare needs, typically seeing more doctors across a wider range of specializations than their healthy peers, potentially requiring intermittent hospitalization in a pediatric hospital [4], and utilizing other support services such as physical, occupational, and psychotherapy to address aspects of their chronic illness [5].

The transition from pediatric to adult care can be a difficult time for these patients and their families [6], and in some cases has been associated with negative health outcomes such as worsening of disease or interruptions in access to care [7]. While transition to adult healthcare services can present challenges for many young adults, the complexity and impact of this transition are greater for medically complex children. Over the past 20 years, transition programs for pediatric care have been developed to aid young adults in transitioning from pediatric to adult care. These programs are typically aimed at helping pediatric patients develop independence, health literacy, and take a more active role in their healthcare, leading up to their transition to adult healthcare services. Although healthcare transition programs have shown promise in improving patient outcomes during and after healthcare transitions [8], many of these programs are not fully adapted or readily available to children with medical complexities, who still face significant challenges in transitioning their care [9]. This article will explore the gaps in existing transition services from pediatric to adult care and models that have been introduced to fill these gaps. 

The most significant issue with today’s transition programs is that these programs simply do not reach the vast majority of children who might benefit from these services. According to the 2018 National Survey of Children’s Health, only 16.2% of all youth with childhood-onset chronic conditions (ages 12–17) received necessary services for transition to adult care [10]. There was not a large difference in the percentage of children with special healthcare needs who received these services (18.9%) as compared to peers without special healthcare needs (14.2%) [10]. This is in part due to insufficient financial and staff support for these programs, which serve as the most significant barriers to starting or maintaining successful transition programming according to one review of over 40 transition programs for children with CCN [11]. Even in clinical settings where these programs exist, a lack of insurance reimbursement for transition services and counseling can serve as a barrier to patients being able to access them [12]. 

Where these programs do exist and are accessible to patients, they do not always meet the specific needs of chronically ill or medically complex children if they are designed with a “typical” pediatric patient population in mind. For example, although patients with intellectual and developmental disabilities (IDD) are at increased risk for adverse health outcomes due to barriers in accessing care [13], and thus might be especially likely to benefit from programs helping maintain continuity of care through young adulthood. Some transition programs aimed at promoting autonomy and independence assume a baseline level of health literacy or communication skills to engage with the programming that patients with IDD may not meet [14]. Similarly, while many programs are aimed at promoting autonomy and independence, studies have found that these goals may not be desirable or achievable for some children with disabilities who will continue to need support into adulthood and their families [15]. Instead, programs aiming to promote wellbeing and interdependence may be better suited to their needs and goals [9]. 

In addition to mismatches between some patients with complex medical needs and transition programs that may presuppose specific goals or skills they don’t have, some programs are not adequately designed to address the complexity of these patients' interactions with healthcare systems or systemic barriers they may face to accessing care in an adult setting. While achieving complete independence in scheduling appointments and managing medications may be a realistic goal for a young adult who visits a few healthcare providers a year and may only take one prescription medication, it’s unlikely to be realistic for another who sees several specialists, takes many medications, and may need ongoing speech, occupational, or physical therapy. Instead, a successful transition model allowing a young adult more independence from their parents might help the patient take on a few of these responsibilities and provide support from a patient care coordinator or other support professional—in other words, providing structural support alongside interpersonal support and teaching. 

In fact, it’s not uncommon for many resources available to medically complex patients in childhood, including professional care coordination, multidisciplinary clinics, reimbursement for certain therapies, or even providers familiar with or specializing in certain diseases, to be reduced or disappear entirely for adult patients [9]. This is especially true for “diseases of childhood” such as cystic fibrosis or muscular dystrophy that only recently have seen patients routinely survive beyond their early 20s, leading to a shortage of adult providers with experience treating these conditions [12]. In cases where these practical and systemic barriers exist to receiving adequate care for certain conditions as an adult, improving patient autonomy or self-efficacy alone is insufficient to equip them to navigate these systems. 

Recently, some programs have attempted to develop more specialized transition models to address these areas of unmet need, such as the STEP (Staging Transition for Every Patient) program collaboration between Children’s Hospital of Alabama and the University of Alabama at Birmingham [16, 17]. Based on their initial evaluation of 165 adolescent patients with complex healthcare needs which revealed that only 3.6% of patients had a BMI within normal range and that over ⅓ had moderate to severe anxiety or depression, the STEP program was developed to provide multidisciplinary transition services including nutritional and mental health support [16, 17]. This program is the first to develop and implement a protocol for utilizing “individualized transition plans” (ITP) in a clinical setting, evaluating patients and providing transition support based on individually identified areas of need [17]. While it is difficult to assess the efficacy of this approach compared to other models due to a lack of studies which measure outcomes after patients are transitioned to adult care (as opposed to those using improvements in preparedness scores pre-transition or similar as endpoints), it may serve as a scalable model for addressing each patient’s complex needs through organized transition programming. Similarly, some groups have investigated app-based interventions or the use of telehealth services to decrease disparities in access to transition services, although there is currently insufficient evidence to support the effectiveness of these interventions [18, 19].

Significant barriers to the widespread adoption of transition programs for children with complex medical needs remain, including a lack of research following patients through post-transfer outcomes of different transition models, insufficient financial and institutional support for these programs, and decreased availability of specialized care and support services for certain conditions for adult patients. As the number of children and young adults living with chronic illness and those with complex healthcare needs continues to rise, the need for evidence-based models of effective transition services for this population remains high, as does the need for increased funding and institutional support necessary to make these programs widely accessible to patients.

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References

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