Transition to Adulthood for Persons with Childhood Onset Disabilities

Disease/Disorder

Definition

A unique element of childhood is the process of growth and development into independent adults. Children with disabilities face additional challenges related to their specific condition. The transition from pediatric to adult healthcare providers can be difficult. While there is no currently universally accepted age cut-off for transitioning to adult services, there is increasing advocacy to start the process for transition at age twelve.^1,2 Given the myriad of complexities involved with transition to adult care, particularly in this population, the importance of this transition is increasingly being recognized.³

Physical Medicine and Rehabilitation is a unique medical specialty that is based on an interdisciplinary healthcare professional team approach. Thus, it seems fitting that PM&R specialists serve as leaders that promote successful transition from pediatric to adult healthcare.

Etiology

With advances in medical and surgical care, more children with disabilities are now surviving into adulthood; consequently, there is an emerging need to manage these disabilities and their associated challenges into adulthood.⁴

Attitudes and experiences of both patients and providers involved in the transition of patients from pediatric to adult care have been described as stressful and negative across different studies.⁵ This warrants education for PM&R specialists about the specifics and importance of transition from pediatric to adult healthcare.

Description, epidemiology, and risk factors

Increasing number of children with chronic disability will now survive into adulthood, and it is estimated that about 98% of children aged 4-14 with cerebral palsy will survive to age 20, with severity of CP influencing life expectancy.^6,7,8,9 Nevertheless, more than half of patients with chronic health conditions report inadequate support and services during their transition to adult healthcare⁸. Many studies pertaining to various pediatric diagnoses have been performed examining the increase in morbidity and mortality rates in transition. The causes include transition readiness, willingness/familiarity of practitioners to take on a medically complex pediatric patient, lack of education to patient and families for transition, and lack of collaboration between healthcare professionals. This calls for strategic planning from physiatrists in helping pediatric patients age into adulthood care.^10,11

Patho-anatomy/physiology

Adolescence presents with spurts in linear growth, hormonal changes, and sexual maturation.¹² With these changes are increased expectations of independence, development of individual identity, and greater emphasis on education, employment, and sexuality. As a result, there are also alterations in family and social dynamics. All of these factors will ultimately be influenced by the type and scope of a patient’s disability, degree of impairment, family dynamics, and social milieu.

The table below describes the most common childhood-onset conditions requiring eventual transition to adult care. Please see each condition’s page for more detailed information. 

Disease progression including natural history, disease phases or stages, disease trajectory (clinical features and presentation over time)

Adolescence has three stages: Early, Middle and Late¹²

• Early adolescence encompasses ages 11-13 and corresponds with the middle school years
• Middle adolescence encompasses ages 14-18 and corresponds with the high school years
• Late adolescence encompasses ages 19-21 and corresponds with post-high school graduation/college years

Table 2: Normal Developmental Progress in Adolescence¹²

Specific secondary or associated conditions and complications

The adolescent’s family structure, its socioeconomic status and geographic location, the availability and type of school services, and the availability and depth of vocational rehabilitation resources will influence the process of transition.

Barriers to a smooth transition include^7,10,13

• Inadequate preparation of the patient and/or family prior to transition
• Inadequate communication between the pediatric and adult providers
• Inadequate training of healthcare providers on how to effectively transition care
• Inability to access and use adult care services, changes to health insurance
• Excessive or lack of parental involvement in the care of patients
• Reluctance of some pediatric providers to relinquish care of the patient
• Reluctance of adult providers to accept this patient population
• Concern about the level of care in the adult health care system
• Lack of financial resources

Essentials of Assessment

History

Successful transitions begin with addressing the issue during preadolescence, with studies advocating that the transition process begin between ages 12-14.¹¹ In all but the most disabled children, there is a possibility of promoting some independence and autonomy. Parents/caregivers should be asked about how they are planning for the child’s transition to adulthood. Children should be asked (as they age, possibly without their parents’ presence) about long-term goals, hopes, and relationships with family and peers. While transition readiness assessment questionnaires and tools focusing on disease self-management and healthcare utilization skills have been developed, further research is needed to validate their effectiveness for children and adolescents with special healthcare needs.^13,14

Physical examination

• Height and weight, observing particularly for weight gain.
• Physical development using the Tanner scale.
• Joint range of motion, especially in conditions where patients are at risk for contractures; rapid growth can exacerbate contractures.
• Balance, as changes in center of gravity occur with growth.

Functional assessment

• Functional history from both the parent/caregiver and the adolescent to check for differences in perception. Parents may tend to shelter a child with a disability and may be providing unnecessary assistance in areas where the adolescent has the potential to develop independence.
• It is important to assess behavioral interactions between the patient and caregiver/parents and, if possible, between the examiner and patient without the parent/caregiver present.
• Some influential factors shown to affect perceived transition readiness and healthcare satisfaction include patient age, academic performance, self-reported healthcare responsibility and medication barriers in medically complex adolescents and young adults.¹⁵
• It is valuable to establish an accurate Gross Motor Function Classification System (GMFCS) level prior to transition. Gait function may be further classified using the Functional Mobility Scale (FMS), which is sensitive to change following intervention and natural history. These measurements may increase consistency between providers by offering a basis for comparison.

Laboratory studies

If a disorder of growth or maturation is suspected, endocrine studies including growth hormone, testosterone, and estrogen levels may be considered and/or consult a pediatric endocrinologist.

Imaging

Imaging will be dependent on the specific diagnosis, disability, and other clinical findings.

Supplemental assessment tools

The American Medical Association’s Department of Adolescent Health has developed Guidelines for Adolescent Preventive Services (GAPS). GAPS has developed questionnaires, which address many of the areas relevant to adolescent transition.

Early predictions of outcomes

Table 3: Factors that positively influence the success of transition from child to adult-oriented healthcare

Table 4: Factors that negatively influence the success of transition from child to adult-oriented healthcare

Environmental

Some studies show that low socioeconomic and/or minority status does not influence the ability to achieve adult roles. However, these issues should still be considered when planning and obtaining services for adolescents with disabilities. Use of Internet resources (e.g., support groups, informational sites) should be encouraged, particularly for persons living in geographically isolated areas.

Social role and social support system

Support for both the adolescent and his/her caregivers should include peer support (e.g., local or national patient advocacy groups), rehabilitation social workers and, as indicated, rehabilitation psychologists.

Professional issues

• Guardianship for adolescents with disabilities who lack decision-making capacity and who are older than 18 can become complicated, especially in situations in which the adolescent’s parents are older and becoming dependent themselves. Consultation with an eldercare/disability lawyer may be beneficial.
• Many adolescents with disabilities may qualify for programs such as vocational rehabilitation and social security disability, and thus should be encouraged to apply. Resources vary by state.
• For non-ambulatory children with severe physical and cognitive impairments, reduction in size can be accomplished through growth attenuation therapy (GAT). Although somewhat controversial, this therapy is no longer rare. However, more data is needed to assess its long-term side effects and overall improvement in quality of life for both the patient and caregiver.¹⁶

Rehabilitation Management and Treatments

Available or current treatment guidelines

Clinicians are encouraged to check disease-specific guidelines for more in-depth information on ongoing management. The table below addresses some of the most common diagnoses.

At different disease stages

Early adolescence

• Caregivers should begin to think about the process of transition through adolescence and to prepare a plan for addressing issues of sexuality (both physical and emotional), increasing independence, and determining academic goals. They need to consider various training options including mainstream post-secondary education, vocational training, supported employment, and sheltered workshops.
• Physiatrists need to monitor for potential secondary impairments caused by growth spurts (e.g., worsening contractures).
• Adolescents who are able should be encouraged to learn more about their condition and seek support from others with the same/similar disabilities.
• Physiatrists will need to consider issues surrounding puberty, including changes in care/hygiene and concerns about changes in appearance
• Providers should introduce the concept of transition to adult care and outline the process to the patient and family. 

Middle adolescence

• Adolescents who are able should be encouraged to take increasing responsibility for self-care needs and begin to learn the homemaking skills necessary for independent living, possibly necessitating a course of occupational therapy. Adaptive equipment should also be prescribed as needed.
• Driving assessment and referral to adaptive driving school should be considered.
• Entry into the state vocational rehabilitation system should be made.
• In cases where the adolescent is likely to continue to be dependent for care as an adult, the possibility of group home care should be introduced to caregivers. If that option is chosen, the parents should be encouraged to research a suitable organization and have their child placed on the waiting list as soon as possible. Social work referral may help to identify resources.
• Providers should consider incorporating sexual history in their visits, particularly providing counseling on risk for pregnancy and sexually transmitted infections. Providers should also consider risk of sexual victimization¹⁷
• Physiatrists must monitor closely for excessive weight gain and identify appropriate exercise/fitness strategies to prevent obesity. Programs such as I Can Do It, You Can Do It may be useful.
• Providers should check-in with patients about transition readiness and goals for transition on a yearly basis and work to develop a comprehensive health care treatment plan to be shared with an adult provider.

Late adolescence

• Resources for post-educational plans and social/employment programs should be explored.
• The resources of organizations such as independent living centers and statewide independent living councils should be investigated.
• Adolescents should be made aware of their rights under the Americans with Disabilities Act as they seek jobs and housing.
• Providers should continue to support adolescents and young adults in their sociosexual well-being as they have more opportunities for employment, postsecondary education, and community living¹⁷
• The physiatrist should help the family identify a primary care physician who is comfortable treating adults with disabilities. If the physiatrist is unable to see adults, they need to identify a colleague who can assume the person’s rehabilitation management.

See Figure 1

Coordination of care

The appropriate setting for provision of care will depend on the specific adolescent. As the severity of cognitive or physical impairment increases, greater coordination of care should be considered. Ideally, the setting should include both pediatric and adult experts to facilitate a smoother transition. As the responsibility of initiating this process falls upon the shoulders of pediatric providers, additional training on this specific topic has been shown to be beneficial. Tailored educational materials during residency training has been proven to help equip these physicians with the necessary knowledge and skills to facilitate a smooth transition into adult care.¹⁵

Patient & family education

Patients often feel anxious and concerned at the thought of transitioning to adult care services; in fact, only 21% of parents reported that their child had discussions with an adult health care provider prior to transitioning. Similarly, a parent’s feelings toward the transition are linked to his or her awareness of the transition plan. Thus, it should be a priority of the provider to discuss the transition plan with both the patient and the family prior to transitioning.⁵

As noted in the sections above, education regarding resources for education, jobs, housing, social programs, and advocacy should also be undertaken at each visit.

Emerging/unique interventions

Transition of care should be a process that takes place over time rather than a single event. It is unacceptable to inform a family that they will need to transition to an adult provider without making formal transition arrangements. Studies show support for systemic improvement and organizational models. An ideal stepwise process of transition without an abrupt change in healthcare providers should take place and be flexible rather than fixed to biological age.³

A structured transition program, involving the child, parents, and both providers, should start years before the formal transfer. The transition process may be improved with visits to the transition clinic before the actual transfer and include a consult with both the pediatric and adult providers. Such arrangements may even include a “graduation visit”, which could include a symbolic token, such as a diploma, to signify the child’s progress and initiation to a new provider. To further facilitate the transition process, it may be beneficial to employ a designated transition coordinator, who would be responsible for organizing the preparations for patients and families prior to and during the transition period, ultimately serving as a conduit between old and new care teams.

Cutting Edge/Emerging and Unique Concepts and Practice

Small numbers of physiatrists and primary care physicians (usually trained in family practice but sometimes with dual training and certification in pediatrics and internal medicine) are beginning to take a special interest in treating adults with childhood onset disabilities.

Electronic medical record systems with longitudinal collection of demographics, interventions, and outcomes data may help facilitate the transition from pediatric to adult providers.¹⁸ Other options to facilitate this transition include direct 1:1 sign-out between providers and/or obtaining an assistant for the purpose of long-term documentation of the disease process. One particularly challenging aspect of the transition to adult-based care is healthcare insurance. It is estimated that about 35% of children in the United States are enrolled in Medicaid, and that number increases to about half of all children in the United States when including CHIP (Children’s Health Insurance Program).¹⁹ When these children reach adulthood, they may be required to switch from pediatric Medicaid to adult-based Medicaid, which can impact what healthcare providers these children can see. Medicaid coverage as an adult differs state-to-state as some states have not elected to expand Medicaid coverage. In those that did expand Medicaid, the health care marketplace can help patients get coverage, but the these plans can have significant limitations for those with special healthcare needs, including high co-payments, limited provider choice, or travel to distant cities for care.²⁰ When developing effective multidisciplinary programs for transition to adult care, it is important to consider limitations of regional insurance coverage and develop solutions to mitigate the challenges that these limitations will present to patient care.

Pediatric patients with chronic diseases may benefit from a staged approach where there is a phased transfer between pediatric subspecialists and primary care providers in a disease-specific manner.¹² More specifically, many young adults with medically complex diseases have several specialist providers; thus, rather than transition all providers simultaneously, it may be more effective and safer for the patient to transition one provider at a time.

Organizational models for transition care are being developed with a focus on patient social and clinical complexity, recognizing that a one-size-fits-all approach is not effective. These models will include core elements such as communication of transition, patient empowerment, summaries and medical records for the next provider, and flexibility. One proposed model suggests using a transition report format that includes clinical, nursing, social-care, and psychological information, completed by the pediatric team and shared with the adult care team.³

Questionnaires including quantitative measurements of intentional self-regulation and hopeful future expectations have been used in the past to determine transition readiness, which may help healthcare physicians understand if a patient is appropriate for transition.^14,15

Other specialties, such as oncology, have developed specific clinics for young adults bypassing the transition until mid-adulthood. In the realm of physiatry, an excellent example of this multidisciplinary transition clinic is The Spina Bifida Transition Program through the Children’s Hospital of Wisconsin.²¹ This model may provide a good framework for many physical medicine and rehabilitation patients, who face unique challenges that typically developing young adults do not.

Gaps in the Evidence-Based Knowledge

There is currently very limited empirical evidence to support a specific approach to the successful transition to adult providers for children with disabilities.

Further research and policy should focus on developing and evaluating coordinated transition interventions involving primary care to better integrate primary and specialized care, rather than focusing solely on specialist-to-specialist provider transition.⁸ In this way, the fragmented nature of the primary to specialty care interface could improve.

Pediatric physiatrists and adult physiatrists have greatly improved the quality of life for many children and adults with chronic health conditions separately; now the emphasis should be closing the gap between pediatric and adult care.

References

1. Calabrese S, Lee S, Mollica MA, et al. Navigating Pediatric to Adult Healthcare Transition: A National Institutes of Health Workshop. J Pediatr. 2022;244:234-240.e1. doi:10.1016/j.jpeds.2022.01.052
2. Heron LM, Agarwal R, Greenup J, Maddux M, Attong N, Burke SL. Disparities in healthcare transition support received by adolescents with special healthcare needs. J Appl Res Intellect Disabil. 2020;33(2):180-192. doi:10.1111/jar.12658
3. Bert F, Camussi E, Gili R, et al. Transitional care: A new model of care from young age to adulthood. Health Policy. 2020;124(10):1121-1128. doi:10.1016/j.healthpol.2020.08.002
4. Westwood A, et al. Transition from child to adult-oriented care for children with long-term health conditions: A process, not an event. SAMJ April 2014, Vol. 104, No. 4.
5. Zhou H, et al. Transition adolescent and young adults with chronic disease and/or disabilities from paediatric to adult care services-an integrative review. Journal of Clinical Nursing 2016:10.1111
6. Berens J, Wozow C, Peacock C. Transition to Adult Care. Phys Med Rehabil Clin N Am. 2020;31(1):159-170. doi:10.1016/j.pmr.2019.09.004
7. Blum, RW. Chronic illness and disability in adolescence. J Adolesc Health. 1992;13(5): 354-368.
8. Himmelmann K, Sundh V. Survival with cerebral palsy over five decades in western Sweden. Dev Med Child Neurol. (2015) 57:762–7. doi: 10.1111/dmcn.12718
9. Blair, E., Langdon, K., McIntyre, S. et al. Survival and mortality in cerebral palsy: observations to the sixth decade from a data linkage study of a total population register and National Death Index. BMC Neurol 19, 111 (2019). https://doi.org/10.1186/s12883-019-1343-1
10. Bhawra J et al. Primary Care interventions to improve transition of youth with chronic health conditions from paediatric to adult healthcare: a systemic review. BMJ Open 2016;6:e011871.
11. Stewart D. Transition to adult services for young people with disabilities: current evidence to guide future research. Dev Med Child Neurol. 2009;51(suppl 4):169-173
12. Amy Peykoff Hardin, Jesse M. Hackell, COMMITTEE ON PRACTICE AND AMBULATORY MEDICINE, Geoffrey R. Simon, Alexy Darlyn Arauz Boudreau, Cynthia N. Baker, Graham Arthur Barden, Kelley E. Meade, Scot Benton Moore, Julia Richerson; Age Limit of Pediatrics. Pediatrics September 2017; 140 (3): e20172151. 10.1542/peds.2017-2151
13. Kaushik R, Niebuhr V. Design and Evaluation of a Pediatric Resident Health Care Transition Curriculum. MedEdPORTAL. 2022 Apr 1;18:11239. doi: 10.15766/mep_2374-8265.11239. PMID: 35434300; PMCID: PMC8971142.
14. Wood DL, Sawicki GS, Miller MD, et al. The Transition Readiness Assessment Questionnaire (TRAQ): its factor structure, reliability, and validity. Acad Pediatr. 2014;14(4):415-422. doi:10.1016/j.acap.2014.03.008
15. Haarbauer-Krupa J, Alexander NM, Mee L, Johnson A, Wise J, Arora Gupta N, Schechter MS, Wasilewski-Masker K, Gilleland Marchak J. Readiness for transition and health-care satisfaction in adolescents with complex medical conditions. Child Care Health Dev. 2019 May;45(3):463-471. doi: 10.1111/cch.12656. PMID: 30836446.
16. Pollock AJ, et al. Growth attenuation therapy: practice and perspectives of paediatric endocrinologists. Arch Dis Child. 2015 Dec;100(12): 1185.
17. Houtrow A, Elias ER, Davis BE; COUNCIL ON CHILDREN WITH DISABILITIES. Promoting Healthy Sexuality for Children and Adolescents With Disabilities. Pediatrics. 2021;148(1):e2021052043. doi:10.1542/peds.2021-052043
18. Fairman AD, et al. Implementing a Specialty Electronic Medical Record to Document a Life-Course Developmental Model and Facilitate Clinical Interventions in Spina Bifida Clinics. Pediatr Clin N AM 2010;57:959-971.
19. Protectourcare.org
20. Zupanc ML. Models of Transition. Semin Pediatr Neurol. 2020;36:100853. doi:10.1016/j.spen.2020.100853
21. Kaufmann Rauen, Karen, et al. “Transitioning Adolescents and Young Adults with a Chronic Health Condition to Adult HealthCare – An Exemplar Program.” Rehabilitation Nursing, vol. 38, no. 2, 2013, pp. 63–72., doi:10.1002/rnj.74.

Original Version of the Topic

Scott Paul, MD. Transition to Adulthood for Persons with Childhood Onset Disabilities. 11/10/2011.

Previous Revision(s) of the Topic

Sarah Korth, MD, Christina Kokorelis, MD. Transition to Adulthood for Persons with Childhood Onset Disabilities. 8/16/2016.

Mary McClanahan, MD, Shannon Strader, DO. Transition to Adulthood for Persons with Childhood Onset Disabilities. 9/23/2021

Author Disclosures

Mary McClanahan, MD
Nothing to Disclose

Kevin Gilbert, MD, MS
Nothing to Disclose

Jessica Barnett, MD, MPH
Nothing to Disclose