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. 2025 Jun 21;3:100108. doi: 10.1016/j.hctj.2025.100108

The impact of insurance on adolescent transition to adult care

Diane V Murrell a,⁎, Cassandra J Enzler b, Lauren Bretz b, Beth H Garland c, Albert C Hergenroeder b, Christine Markham d, Constance M Wiemann b
PMCID: PMC12226033  PMID: 40613028

Abstract

Background

This study sought to examine how adolescents and young adults with special health care needs (AYA) prepare for managing medical insurance (private and public) as an adult and the role of insurance in locating an adult provider and engaging in care.

Methods

Twenty-eight AYA aged 18–24 years with renal, inflammatory bowel, or rheumatologic diseases completed individual semi-structured interviews designed to evaluate the impact of insurance (private vs. public) on their health care transition experiences. An interdisciplinary team of coders analyzed transcripts using The Framework Method.

Results

Three themes emerged: continuum of accepting health insurance responsibility; the impact of insurance on managing health while transitioning to an adult provider; and how insurance systems affect transition. AYA described a continuum of the adolescent increasing health insurance responsibility, which was paralleled by their parent/caregiver’s continuum of decreasing insurance responsibility. Both publicly and privately insured AYA faced difficulties in transition related to insurance and reported that insurance was a key deciding factor in locating providers and centers to receive care. Regardless of insurance type, some AYA also described financial difficulties affording care.

Conclusions

Health insurance is a complex system that affects AYA’s ability to manage their health and transition to adult-based care. Evidence-based interventions to improve AYA and parent/caregiver health literacy knowledge and skills about health insurance prior to transition to adult-based care are needed. Improvement in health insurance literacy could improve transition readiness for entering adult care, which could in turn improve health outcomes.

Keywords: Adolescents and young adults with special health-care needs, Insurance, Health-care transition, Qualitative research, Health literacy

Highlights

  • •

    Health insurance affects AYA’s ability to manage health and transition to adult care.

  • •

    Interventions to improve AYA health insurance literacy are needed.

  • •

    Effective insurance discussions with pediatric healthcare providers are not ocurring.

  • •

    Insurance discussions should be assigned to specific healthcare team members.

1. Background

In the United States, children with special health care needs make up approximately 18.5 % of all children under 18 years.1 If a relatively even age distribution is assumed, approximately 1.2 million youth with a chronic condition or functional limitation turn 18 years old annually and need to prepare to transition from pediatric to adult-based care.2 Adolescents and young adults who have special health care needs (AYASHCN, referred to as AYA) have chronic illnesses or disabilities that require specialty healthcare in addition to primary care. Health care transition (HCT) is defined as the process of moving from a pediatric to an adult model of health care with or without a transfer to a new health care provider.3 HCT occurs in three stages: preparation, transfer, and the establishment of ongoing care with the adult provider.3

In the U.S., as adolescents traverse these stages, health insurance often changes. This is especially true for publicly-insured patients. The Affordable Care Act (ACA) allows parents with private insurance to retain AYA on their insurance plan until the age of 26.4 Those AYA with public insurance are at risk of losing coverage in their late teens, as these plans often do not carry into adulthood. In states that did not expand the ACA, there are fewer public insurance options for AYA and those offered tend to have stringent coverage requirements. However, even for those AYA who have commercial insurance, transition can be complicated by insurance plan limitations.5

Absent or insufficient health insurance can lead to delayed or forgone care due to high out of pocket costs,6 resulting in poor health outcomes during the transition to adult care.7 Underinsured AYA face greater difficulty in accessing care and refilling prescriptions,8, 9 are more likely to experience preventable hospitalizations compared to AYA with private insurance.10 Many AYA lack knowledge of the insurance system and how insurance works7, 11 and inadequate insurance is associated with delayed care and poor outcomes for AYA during the transition period.12, 13 To prepare for transfer from pediatric to adult-based care, AYA and their caregivers must develop health management skills that include understanding how to obtain and maintain insurance. Discussions about insurance while AYA are under pediatric care are a critical component of the transition preparation process yet less than 20 % of AYA report having conversations about future health insurance needs with their pediatric providers.14, 15 In the absence of such discussions AYA can struggle to obtain necessary care yet youth voice is lacking in the peer-reviewed literature on this subject.

The potential for high-risk health consequences and the presence of many well-established barriers to insurance coverage require a deeper understanding to aid a solution-focused approach to improvement. A qualitative approach offers deeper exploration into the experience of AYA and their transition preparation with respect to insurance changes. No qualitative studies of which we are aware have examined the AYA experiences with insurance during the preparation, transfer, and engagement stages of HCT. This study sought to examine how AYA prepare for managing medical insurance (private and public) as an adult and the role of insurance in locating an adult provider and engaging in care.

2. Methods

2.1. Recruitment and sampling

Study participants were originally recruited between November 2017 and December 2018 to participate in a randomized clinical control trial of an intervention (Project TEAMS - Transition Education and Mentor Support) that evaluated peer mentor support and education on the transition process.16, 17

Eligibility criteria for the original study included AYA ages 17–23 years from the Gastroenterology, Renal, or Rheumatology Services at a large children’s hospital. AYA were randomized to either a group-based peer-mentor intervention with a corresponding written guide or a self-paced written guide only (Enhanced standard care). Contents of both intervention arms included a single group session or chapter on insurance terminology and paying for healthcare. AYA in both intervention groups completed baseline and 3-, 6-, and 9-month post-intervention assessments.

2.2. Inclusion criteria for the current study

Participants from the original study in both intervention groups were eligible to participate in the current study. Intentional sampling was used to achieve representation by gender, transition status (whether they were still in pediatric care or had transitioned to adult care), and insurance status.

Potential participants were invited to join the study through phone calls or approached during their clinic visits. Informed consent was obtained. Interviews were conducted either person at the clinic in a private location (office room) or by phone. Efforts were made to ensure the participant was alone if conducted by phone. This study was approved by the Institutional Review Board for Human Subjects Research.

2.3. Data collection

A member of the research team with experience interviewing adolescents and young adults conducted one-to-one interviews with AYA using open-ended, semi-structured questions developed by the interdisciplinary research team. The interview contained 16 open-ended or short answer questions, each with potential probing questions. Interviews explored how AYA prepared for transition from pediatric to adult-based care and how they experienced the transfer process if they had already engaged in adult-based care (Table 1). Demographic information, including age, gender, race, ethnicity, insurance status (public or private), clinic service, and intervention randomization status, was extracted from the participant’s baseline survey. Public insurance included Medicaid, Medicare, and Children with Special Health Care Needs program, hospital-sponsored charity, and county-sponsored insurance. Transition status, defined as either still receiving care at the pediatric hospital or transitioned to adult care, was determined before beginning the interview so that the correct set of questions was used (Table 1). Interviews were conducted until thematic saturation was reached. Participants received $30 for completing the interview. All interviews were audio-recorded and transcribed by a professional HIPAA-compliant transcription service. The transcriptions were verified by comparing them to audio recordings.

Table 1.

Sample interview questions based on transition status*.

Asked of AYASHCN who transitioned
  • •

    In what ways did you prepare for your transition out of [pediatric hospital]? How did your pediatric doctor talk to you about or teach you how manage your ______(insert condition)? How did other people at [pediatric hospital], like a social worker or nurse, help you prepare to leave [pediatric hospital]?

  • •

    What information were you given about where to go after [pediatric hospital]? What kind of recommendations did your doctor give you about choosing an adult doctor? Where did they recommend you go? How did your insurance affect your decision about where to go?

  • •

    On a scale of 1–10, how prepared did you feel to transfer from pediatric to adult based care? (10 is completely prepared, 0 is not prepared at all) Why did you give it that rating? What would have made that number higher?

  • •

    How do you think your insurance affected your ability to prepare to transfer from pediatric to adult-based care, or the transfer period itself?

Asked of AYASHCN who had not transitioned
  • •

    How are you preparing to transition to an adult provider? For example, have you met with a social worker to discuss transition, or has your doctor helped you prepare to transition?

  • •

    Have you been given direction about where to go after [pediatric hospital]? Did your pediatric doctor give you recommendations about where to go after transferring? If so, where did they recommend you go?

  • •

    On a scale of 1–10, how prepared do you feel to transfer from pediatric to adult based care? (10 is completely prepared, 0 is not prepared at all) Why did you give it that rating? What would make that number higher?

  • •

    How do you think your insurance will affect your transition from pediatric to adult-based care?

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*

The above questions were asked but for purpose of this study only the lens of insurance was used for this analysis.

2.4. Data analysis

Responses to open-ended questions were analyzed using the Framework Method,18 a qualitative analysis approach that provides a systematic model for managing and mapping data. All members of the coding team were experienced in applying the Framework Method to transcripts of interviews with adolescent and young adults in prior published studies. The coding team analyzed interview transcripts to examine the impact of insurance on the preparation, transfer, and engagement stages during the transition process. Five coders from diverse disciplines (adolescent medicine, developmental and clinical psychology, public health, and social work) reviewed a subset of the transcripts to familiarize themselves with the data and generate initial codes for repeated phrases, ideas, and topics. These codes were then applied across the subset of transcripts with ongoing review to confirm accuracy. The process was repeated until no new codes were identified, upon which a codebook was finalized. All transcripts were then read and independently coded by pairs of coders. Discrepant codes were discussed until consensus was reached. Using NVivo,19 the codes were indexed and sorted into larger subthemes and final themes. All coded quotes were reviewed by the five coders, and overarching themes were agreed upon. An audit trail was maintained throughout the process to ensure that the analysis could be replicated.

3. Results

Twenty-eight AYA were enrolled in this study (January-December, 2020), 19 had participated in the group-based peer mentor and reading arm and nine in the reading materials only arm of TEAMS. The interviews averaged 26 min (range: 12–76). Demographic characteristics are included in Table 2. Nine participants with private insurance and six with public insurance had transitioned to an adult provider at the time of study enrollment.

Table 2.

Demographic characteristics of the study sample.

Study Sample
(n = 28)
N (%)
Age in years (mean ± std.dev.) 21.2 ± 1.5
Gender, Female 17 (60.7)
Race
 Black 10 (35.7)
 White 16 (57.1)
 Asian 2 (7.1)
Ethnicity, Hispanic 13 (46.4)
Clinic
 Gastroenterology 10 (35.7)
 Rheumatology 10 (35.7)
 Renal 8 (28.6)
Intervention status
 Project TEAMS 19 (67.8)
 Enhanced standard care 9 (32.1)
Insurance type
 Public insurance,*self-pay or charity support 13 (46.4)
 Private insurance 15 (53.6)
Transitioned to adult-based care 15 (53.6)
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*

Public insurance includes Medicaid, Medicare, Children with Special Health Care Needs program, hospital-sponsored charity, and county-sponsored insurance.

An initial 35 discrete codes were combined into five higher order categories that fit within three overarching themes: Continuum of increasing health insurance responsibility; the impact of insurance on managing health while transitioning to an adult provider; and how insurance systems affect transition. Theme defintions and sample quotes are presented in Table 3.

Table 3.

Themes identified through qualitative analysis of AYA interviews, their definitions, and sample quotes.

Theme / Definition Sample quotesa
  • 1.

    Continuum of increasing health insurance responsibility

This continuum describes a sequence of steps in AYA management of insurance, including the progressive transfer of knowledge and responsibility for insurance from parent/caregiver to AYA.
Subthemes:
3.1.1 AYA Insurance responsibility
3.1.2 Role of parent/caregiver
3.1.3 Role of healthcare providers
  • •

    Interviewer: Is there anything that they could have done to be more helpful?

  • •

    Interviewee: Maybe in the insurance, a little bit more explaining maybe the insurances, like the different insurances that adults would have. (020, public insurance)

  • •

    Since my Medicaid had run out she had told me about a program for [county program for uninsured]. (010, public insurance)

  • •

    That’s another thing the coordinator did, make sure they took the insurance we have. (005, public insurance)

  • •

    I think going through insurances and helping—like a breakdown. They touched on it, but it was more so different units that they lightly touched on than being that insurance is very important. I think that would be something that would have been helpful to breakdown. Not only the terminology, which they did, but different types of plans, how to know which plan is for you, and figuring out carriers because each carrier has a different plan. People have different preferences. Also, when it comes to occupation to offer insurance plans, and what to look for, and what people may want when it comes to seeking employment that does offer healthcare plans. I would have loved to learn more about that. (001, private insurance)

  • •

    I mean I don’t really keep up with my insurance. My parents do cause I’m under their insurance. (021, private insurance)

  • •

    I’ve moved out on my own, so I feel like trying—I call all insurance companies myself and everything because I’m 20, so they are not allowed to talk to my parents anymore. I have to deal with insurance companies and pharmacies and making sure my medicines are filled. (027, private insurance)

  • •

    I think making the appointments, ordering my medicine, those are the things I do, but my parents still have all of my printed medical records, and my mom won’t let me touch them, so I can’t fully organize them. They know how to deal with the health insurance because I never have yet.” (011, private insurance)
  • 2.

    The impact of insurance on managing health while transitioning to an adult provider.

This theme describes how insurance plans may impact the participant’s ability to manage their health during the transition process.
  • •

    “Yeah, cause the insurance it doesn’t cover everything if at all. Then if it does cover something it doesn’t cover it 100 percent. There’s a lot more out of pocket and copays.” (014, public insurance)

  • •

    What made it easier for me was whenever I was going to see an adult doctor, I was still able to receive my infusions at [children’s hospital] until they had—until I had everything settled with a new adult provider with infusions over there. (017, public insurance)

  • •

    For a while, I didn’t have insurance…not having insurance for the bit was pretty hard, ’cause I just didn’t wanna see any doctors at that point, ’cause I figured everything would be too expensive… I skipped out on medication. (002, public insurance)

  • •

    It does, 'cause it's kinda complicated 'cause sometimes my insurance won't cover my medication, so then we would have to switch back to this other insurance and then switch back to the same insurance again. It was just this constant switching back and forth, back and forth. (012, public insurance)

  • •

    A treatment would just have to be pushed back because I was waiting. It’s kind of like going down the grapevine again. It was like my doctor would have to send a letter to the infusion, and then the infusion clinic would have to get approval from the insurance. Then they would have to, everybody had to approve and send back and do something like that, so whenever our insurance changed before the end of the year, it was like almost having to redo everything. I did miss a treatment because we were having to deal with new insurance and getting everything approved and where I’m gonna get my medicine from and stuff like that. (027, private insurance)

  • •

    Yes, my mom was really worried. Her main concern was the infusions. She’s like, “How is it gonna work during the process that year looking for a doctor since you have to get them once a month. They’re not every six or eight weeks where you have more time. Once a month and then the doctor having to send the prescription order to the insurance to make sure it covers it. It’s super-duper expensive. I wouldn’t be able to afford my infusions. She was really worried about the insurance kicking in on time before needing my other infusions. (004, private insurance)

  • •

    I was two weeks on the phone. Every day, every day, I’d call them. I said, “You cannot just decide one day we’re not gonna pay for his medicine.” I said, “You can’t do that.” I said, “You’ve gotta give,” and they did it like the week before his infusion. I said, “You have to give us, if you’re gonna say, no, we’re not gonna approve this medicine anymore, you can’t wait until the week before he needs it. (023, private insurance)
  • 3.

    How insurance systems affect transition.

This theme describes how insurance protocols differed between plans dictating steps to enrolling with an adult provider.
  • •

    Okay. 'Cause I was not prepared. We were not prepared, we honestly thought that we were gonna stay—I was gonna stay on Medicaid for much longer, so everything was a very big rush because I had to get infusions, if not, I would get sick and have to end up in a hospital. Like I said, it wasn't something that we had prepared for, or even had discussed for a long period of time. It was just all very rushed. (010, public insurance)

  • •

    The insurance now I can only see the doctors within their system, so I can't switch to any other providers and anything like that. The doctors within their system, I could switch doctors in their system. The medication I have to half pay for. Visits I have to half pay for and stuff like that. Nothing's free in this insurance. (010, public insurance)

  • •

    Like I said, it's kind of like the thing with the insurance is preventing me to move up, especially trying to find a provider that's going to take my insurance right now. So that's the main issue, finding one provider that accepts that type of insurance. (003, public insurance)

  • •

    As far as the medical process and everything, I think everything is just the same really, to be honest. I feel like I'm still receiving good care at this new healthcare provider, similar to the level that I was receiving at [children’s hospital]. (017, public insurance)

  • •

    Well, my insurance now, it makes it kinda hard because I can only choose from one type of like chain of doctors, and it’s kinda hard because their doctors are not good. Also, another thing that changed and that was kinda hard for me with my transition, I changed insurance. It was like I had to go from the Blue Cross Blue Shield to Cigna, and it was different. Because Cigna limits who I could see. (024, private insurance)

  • •

    Thank God I do have PPO. I have the option to go anywhere and see any doctors. I don’t feel a difference at all. That’s what I think that made me feel really comfortable. I’m still getting the service I wanted—what I was looking for. I’m very happy that I was able to find a doctor like my pediatric one—my pediatric doctor was. I didn’t feel a change at all. (004, private insurance)
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a

The quoted text is followed by parenthetical identification of adolescent/young adult transcript from which it came as well as their insurance status.

3.1. Theme 1: continuum of increasing health insurance responsibility

This continuum describes steps in AYA management of insurance related tasks including the progressive transfer of knowledge and responsibility for insurance from parents/caregivers to AYA (Fig. 1). As described below, parents/caregivers and health care providers delivered different types of support during a progression that may not always progress at a fixed rate (e.g., a support person may not always recognize or proactively fill an AYA gap in knowledge of skills), which can lead to AYA and their parents/caregivers receiving piecemeal education and preparation for insurance transition.

Fig. 1.

Fig. 1

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Continuum of AYA and parent/caregiver responsibility and involvement for health insurance and sources of information or resources regarding health insurance during transition to adult-based care.

3.1.1. AYA insurance responsibility

Fifteen of 28 AYA (54 %) described independence in performing insurance related tasks, which included talking to their insurance company, obtaining a new insurance policy or calling a provider to see if their insurance was accepted. Two participants learned in the TEAMS intervention they could receive insurance through their employer and needed a job where insurance would be offered. Of the 15 AYA who described independence with insurance matters, seven had transitioned to adult care and eight were in preparation.

Eleven participants (11/28, 39 %) demonstrated a lack of insurance knowledge in the following areas: not knowing where to obtain insurance and being unaware of insurance details such as the name of their insurance policy or where to find their policy number. Five said that insurance was not their responsibility. Lack of insurance knowledge did not differ by insurance status.

3.1.2. Role of parents/caregivers

The continuum describes the parent/caregiver’s shifting role with respect to health insurance from primary responsibilty to helping AYA learn about insurance and assume responsibilty. AYA described ways in which their parents/caregivers helped them with insurance such as providing insurance through the parent policy, assisting the AYA with finding insurance, or helping them understand insurance details.

3.1.3. Role of health care providers

AYA reported that supportive others including their pediatric specialist, social workers, nurses, peer mentors, and other health providers discussed aspects of transition including insurance. Discussions with pediatric specialists (23/28, 82 %) focused on the treatment plan including the age at which the AYA would transfer, reviewing medical history and medications, and recommendations for adult providers but only four (14 %) AYA reported that the discusson involved insurance. One AYA mentioned that the social worker discussed insurance; another AYA discussed insurance with a clinical coordinator and two AYA mentioned someone at the hospital provided them insurance information. Six (21 %) reported learning about insurance through the TEAMS intervention.

3.2. Theme 2: the impact of insurance on managing health while transitioning to an adult provider

Thirteen participants (13/28, four public, nine private) reported they felt insurance did not affect their ability to transfer to adult care. Another 13 participants (13/28, nine public, four private) described how their insurance plan impacted their transition to an adult provider or their ability to manage their health, for example, receiving medications or treatments or selecting a provider or establishing care. For some AYA, insurance caused delays in transferring or engaging with an adult provider or receiving medications or infusions. Two publicly insured AYA reported that continously applying for government insurance or completing paperwork for charity insurance was burdensome. Eight AYA (five private, three public) expressed that despite being able to receive care there was a financial burden of paying for insurance and medication. Six AYA (four public, two private) reported concerns as to how they will continue to afford care without adequate insurance.

3.3. Theme 3: how insurance systems affect transition

This theme describes how insurance protocols differed between plans and dictated steps to enrolling with an adult provider. Seven participants (five public, two private) described insurance as a deciding factor in when and/or where they could seek care. One AYA said that their change in insurance status (aging out of Medicaid at 19 years) resulted in an earlier transition than expected and they were not prepared. A second AYA mentioned administrative delays in care due to transferring to a publicly insured hospital within their insurance network. Two other AYA (one private, one public) experienced delays in care upon transfer from pediatric to adult care due to their insurance requiring them to see a primary care physician before they could see a specialist.

Insurance plans impacted the AYA’s choice of providers. Of 15 participants who transferred to adult care, six (three public, three private) expressed satisfaction with the adult providers that were covered within their insurance network. Four (three public and one private) were dissatisfied with the selection of adult providers in network with their insurance plan and the inability to change to another provider. Five did not comment.

4. Discussion

This qualitative study examined the impact of health insurance across the transition from pediatric to adult based care for AYA. The findings described the shifting of insurance responsibilities from the parent/caregiver to AYA and indicated that insurance status adversely impacted or was the dictating variable for transition (e.g., establishing adult care, management of health and treatments) in nearly half of the subjects. AYA with private and public insurance were affected.

The primary theme described a continuum of shifting insurance knowledge and responsibilities from parent to AYA that is faciliated by parents/caregivers and health care providers. AYA described a progression toward taking responsibility for insurance, including various ways their parents/caregivers helped them understand the steps involved in obtaining insurance and navigating coverage. Prior studies have endorsed the importance of including parents and other caregivers when educating AYA about HCT.11, 20 Parents/caregivers play a critical role in imparting health insurance knowledge to AYA and can support their autonomy in health self-management tasks,21 by fostering knowedge and practical skills in ways such as answering AYA’s questions about insurance, assisting them in applying for insurance or involving AYA in insurance-related tasks such as phone calls about insurance coverage.

Many publicly insured AYA in this study were unprepared for losing their health insurance coverage when they turned 19 years of age, a finding that is consistent with other reports.14, 15 Similar to others a main finding is that effective insurance discussions with pediatric healthcare providers are not ocurring.14 With a range of topics to discuss regarding HCT, and the need to establish self-management, insurance conversations are less likely to be prioritized in favor of other knowledge- and skill-based interventions impacting the youth’s health.11 Insurance discussions must be a priority given that insurance can impact both managing health and access to care. In addition, although 28 participants in this study received insurance education through the intervention TEAMS, only six mentioned it a source of insurance information. In another study, 78 % of young adults’ incorrectly defined insurance terms.22 Taken together, these studies underscore the need to present insurance information and foster skill building more than once and to attend to the timing and context of exposure to insurance education. Our findings showed that navigating the insurance component of HCT preparation was not consistently assigned to any one member of the care team, and similar to other studies,20, 23 supports the idea of either one person being assigned this task or a designated team to provide HCT knowledge and support.

Two additional themes emerged – the impact of personal insurance on health management while transitioning to an adult provider, and how insurance systems affect transition – reflect the interaction of the individual AYA with specific needs navigating a difficult and confusing system. Half of the participants reported that insurance (or the lack of) made it difficult to access medications and infusions, to select providers of their choice, and to establish care. Such challenges led to delayed care, disatisfaction with care, and difficulites of paying additional costs after partial insurance coverage. These findings are consistent with prior research documenting increased hospitalizations and emergency room admissions, financial strain, and accessing appropriate treatment supports (e.g., home health nursing) during transition.24, 25, 26

The impact of insurance on transition (Theme 3) is susceptible to the current federal and state climate of healthcare coverage. Some AYA in this study transitioned during the early part of the federal government’s COVID-19 Public Health Emergency, which allowed those covered by Medicaid to continue coverage beyond age 19. Medicaid expansion under the Affordable Care Act increased insurance accessibility to young adult27, 28; however, this expansion was not adopted in every state and is not guaranteed across changes in government administration. According to the Congressional Budget Office, if passed by the Senate and signed into law, the budget sent to and passed by the House of Representatives in May 2025 would increase the number of Americans living without health insurance by at least 13.7 million by 2034.29 Instability in the insurance landscape has been associated with increased confusion and access issues, as there is a requirement for individuals to be aware of which services are available to them and on which criteria their eligibility is based.27 Keeping abreast of the frequent changes in insurance eligibility and coverage requires significant time and effort, which is likely why insurance discussions with health care team members are not occurring. This is an area for improvement: clinic staff need the time to provide direct teaching and lend assistance as needed to AYA who are struggling with insurance issues during transition.

As demonstrated in this study, having health insurance does not equate to adequate coverage or access to needed health services. The proportion of children (0−17) with insurance has increased in the past decade as a function of the ACA, however so has the prevalence of underinsured.5 Causes of underinsurance include being uninsured or lack of coverage for services for those who are insured, high out of pocket expenses, lack of physicians and other providers to provide the needed care in the insurance plan’s network, or non-continuous enrollment.9 This has largely occurred in commercial and employer-based insurance programs that include high deductible health plans or limited provider networks. Children and AYA with special healthcare needs who are in high-deductible health plans are more likely to forgo or delay care compared to those in traditional plans.30

4.1. Strengths and limitations

This study’s strengths include having AYA from three subspecialities who were diverse with respect to insurance, or lack of, and transition status. The authors represented a range of disciplines that allowed for different perspectives on chronic illness, insurance and the transition process. How insurance impacts AYA as they transition from pediatric- to adult-based care is an under-researched topic, particularly from the youth voice. These participant experiences contribute to the limited, existing literature.

Recruitment from a single large urban children’s hospital may limit generalizability of the findings. Future quantitative studies could address the importance of family background and related psychosocial factors to assess level of support for the AYA. In this study caregivers were not interviewed to determine their level of understanding regarding insurance, including language barriers, which may have resulted in less support for the AYA. Insurance changes experienced by some Medicaid-eligible AYA in this study may have been unique to the period of time (COVID-19 when emergency Medicaid was extended by the federal government) the study was conducted and not fully capture the abrupt nature of losing public insurance.

4.2. Clinical implications, next steps

Creating new structures and safety nets to fund AYA through insurance coverage is an under-reported area. Most of the literature addressing the HCT insurance system focuses on reimbursment for the physician, advocating to restructure payment models to include time spent on transition preparation.31 Policies at the system level should also increase AYA access to insurance knowledge and skills training.

Next steps should include trials to establish evidence-based interventions to improve AYA and parent/caregiver health literacy knowledge and skills prior to transition to adult-based care. Pediatric clinicians could consider the following. First, having an assigned person to stay informed on the shifting insurance landscape and options in order to provide accurate and current insurance information to the AYA and parent/caregiver. This assigned person should also meet with providers (who may have a varying grasp of the system within which they are delivering care) to understand both the care the young person will continue to need and the means to access it.32 Second, given their role in supporting AYA, parents/caregivers should be invited to share their uncertainties about the insurance process in a clinic visit with the AYA present. These conversations model provider-consumer communication for the AYA. At some point the AYA should be asked to have these conversations without the parent/caregiver present to practice effective advocacy for their own health care management. Third, repeated exposure to accurate information for AYA about insurance may improve their sense of autonomy and competency in handling insurance when transitioning to an adult provider.33

Future directions in this work include assessing parent/caregiver knowledge and skills on insurance and increasing motivation and empowerment of parents/caregivers in insurance support to AYA, given that AYA are likely to ask parents/caregivers for support. Ongoing research, including qualitative, consumer-focused research to evaluate the AYA and caregiver’s understanding of changing healthcare funding policies as it directly affects the AYA is needed. Research into the financial implications for AYA, society, and the healthcare system when individuals with chronic diseases forgo care due to lack of insurance is also important to drive better interventions and policies. Given that adult providers have reported insurance as a major barrier to care it is important to include these stakeholders in policy discussion.32 Effective HCT planning must align with policy and system reforms to ensure maximum potential insurance access for AYA, as evidence-based interventions alone have limited impact if insurance gaps remain. Private plans and Medicaid need to explore better payment systems to cover transition planning and services.24

4.3. Conclusion

The ever-expanding field of supporting AYA in the transition to adult-based care and appropriate engagement in healthcare continues to make important strides in knowledge, practice, and support of AYA. Yet, this qualitative study reports that functional insurance illiteracy remains for nearly half of the AYA who participated. Without support for navigating the insurances changes unique to AYA, they will remain at risk for delayed or forgone care with resultant morbidity. Improvement in health insurance literacy interventions could improve transition readiness for entering adult care, which could in turn improve health outcomes.

CRediT authorship contribution statement

Markham Christine: Writing – review & editing, Supervision, Methodology, Conceptualization. Hergenroeder Albert C: Writing – review & editing, Writing – original draft, Supervision, Conceptualization. Garland Beth H: Writing – review & editing, Writing – original draft, Formal analysis, Data curation, Conceptualization. Bretz Lauren: Writing – review & editing, Writing – original draft, Formal analysis, Data curation, Conceptualization. Enzler Cassandra J: Writing – review & editing, Writing – original draft, Validation, Project administration, Methodology, Investigation, Formal analysis, Data curation, Conceptualization. Murrell Diane V: Writing – review & editing, Writing – original draft, Formal analysis, Data curation, Conceptualization. Wiemann Constance M: Writing – review & editing, Writing – original draft, Supervision, Project administration, Methodology, Investigation, Funding acquisition, Formal analysis, Data curation, Conceptualization.

Ethical statement

The study was approved by the Institutional Review Board for Human Subjects Research, under protocol number H-46341. Written informed consent was obtained by all participants. Individuals who consented to participate agreed to complete a one-time assessment.

Several measures have been used to protect patient confidentiality. First, participants were asked to complete study instruments in a private area. Second, a unique code number was assigned to each participant in order to ensure the confidentiality of the information obtained. Finally, confidentiality was maintained by keeping study records in locked filing cabinets, in password protected servers, and/or on encrypted password protected laptops.

Funding statement

This project was supported by the Health Resources and Services Administration (HRSA) of the U.S. Department of Health and Human Services (HHS) under grant #R40MC30764 Project IMPAACT: Innovative Mentor Program for Achieving Autonomy and Competence in Transition and grant #T71 MC45698 the Leadership Education in Adolescent Health. The information or content and conclusions are those of the author and should not be construed as the official position or policy of, nor should any endorsements be inferred by HRSA, HHS or the U.S. Government.

Declaration of Competing Interest

The authors declare the following financial interests/personal relationships which may be considered as potential competing interests: CM Wiemann and AC Hergenroeder report financial support was provided by Health Resources and Services Administration. AC Hergenroeder is on the editorial board for Health Care Transitions journal. The remaining authors have no known conflicts.

Data availability

The data that has been used is confidential.

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Associated Data

This section collects any data citations, data availability statements, or supplementary materials included in this article.

Data Availability Statement

The data that has been used is confidential.

Articles from Health Care Transitions are provided here courtesy of Elsevier

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