Adapted Abstract

Background and Aims: This study identifies barriers to a successful transition from pediatric to adult healthcare at Kaiser Permanente Northern California (KPNC), a network of healthcare providers that serves 4.5 million members. Child patients in this network are automatically assigned to an adult provider when they turn 18.

Methods and Results: Researchers conducted 39 phone interviews with autistic youth (n=14), caregivers (n=17), and pediatric and adult healthcare providers (n=8) within the KPNC network. They identified three major themes: (1) Navigating the healthcare transition without guidance, (2) Health consequences of a passive healthcare transition, and (3) Strategies for inclusion and continuous engagement.

Conclusions and Implications: Starting the transition process early and providing support to individuals, families and professionals can help autistic youth and their families successfully navigate healthcare transition to adult services.

Findings

Autistic youth and families/caregivers want:

• A gradual transition process.
• Skills to manage their healthcare needs and information about transition.
• Sexual health to be addressed.
• A warm handoff between pediatric and adult provider.

Healthcare providers want:

• The right information, tools, and support to care for their patients.
• Longer patient visits.
• A transition care coordinator.

Summary

This study is a qualitative analysis of transition experiences within one medical system, Kaiser Permanente Northern California. They provide care to 4.5 million members. Three larger themes were identified with many sub-themes from 39 interviews.

Navigating the system without guidance

The first theme discussed in the paper is about patients and caregivers feeling lost in the system. Many Autistics in this study reported being automatically transitioned at the age of 18 without preparation. A few problems arose because of this. Autistics want autonomy but caregivers would also like to have some control over medical decisions. Autistics reported that disclosing their autism diagnosiscan be stressful. Some providers may come in with assumptions that are incorrect about an autistic patient. Caregivers worried that not disclosing an autism diagnosis could lead to some health problems not being addressed. Direct communication between the provider and their autistic young adult patients is required, but some caregivers would also like to be a part of that communication. Providers reported feeling uncertain about how to communicate with autistic young adults when the parent/caregiver is in control of the medical decisions because of conservatorship. Some caregivers and patients also talked about wanting a middle ground between full autonomy and conservatorship, but many healthcare practices do not have a framework for that relationship.

The need to be prepared for the transition was also discussed under the topic of “feeling lost in the system”. Many youths felt they needed practice with skills like talking with their doctor about adult matters, and felt they did not know what to expect or practice to be ready for adult care. Some caregivers wondered whether eighteen is the appropriate age for transition and if developmental delays should and could be taken into consideration before transition. Providers reported not having conversations about the transition unless the topic was brought up specifically during an appointment.

Health consequences of a passive healthcare transition

The second theme discusses how passive healthcare leads to crisis management and the neglect of sexual health conversations. Caregivers reported insufficientamounts of services and support in adult healthcare systems in comparison to the ones in the pediatric system. They want more proactive healthcare. Both caregivers and providers relied on the other to initiate the steps for transition of care and it never happened. Providers could not find the time in their scheduled visits to discuss transition as other health issues had priority. They did not know if they would see that patient again as they would be automatically transitioned in the system to an adult provider.

While Autistics reported going to their pediatrician for annual visits, they only wentto their adult doctor when something was causing a problem. The perceived dynamic of adult healthcare was more about crisis management compared to pediatric healthcare which was more about preventative medicine. This pose risks to the patients as they do not feel as comfortable talking to their adult provider about problems and therefore may have problems that go unresolved.

Sexual health is a big problem with a passive healthcare system. All three groups talked about how they were unsure who was supposed to give the information about sexual health to the youth. There is a need for autistic youth to learn how ahealthy sexual relationship is different from one that involves victimization and abuse.

Strategies for inclusion and continuous engagement

The third theme is about more engagement between patient, caregiver, and both pediatric and adult providers. Caregivers suggest a more gradual transition may improve experiences. A period where Autistics can talk with both providers at the same time could help familiarize them with the adult provider before needing to transfer the totality of their care. The option to delay the transition due to special circumstances is also important.

It may also be helpful for the pediatrician to recommend an adult provider to the family. A warm handoff from a trusted pediatrician may create a more welcoming and positive experience for the family. This could be a discussion between the care team and the family where everyone gets to know one another.

Providers reported feeling limited by appointment types and lengths. Theysuggested having a get-to-know-you visit before any formal healthcare consultation. Providers also felt like they needed more education on support for autistics, so that they could help their patients in a holistic manner and not just a healthcare one.

Real-World Implications

Transition conversations should start from an early age. More communication and information is needed between the patients, caregivers, and providers. Sharing care and having a transition manager could be helpful. Flexible appointment lengths and types and alternative to guardianship for help with healthcare decisions is also needed.

Limitations

• The perspectives reported are from one large facility with automatic transition age and may not be similar in other healthcare settings.
• The autistic participants were only those who could speak and answer the interview questions.
• The diversity of socioeconomic backgrounds, race and ethnicity were not considered within the study.