The Transition from Pediatric to Adult Healthcare in Young Adults with Spina Bifida: Demographic and Physician-related Correlates

Abstract

Objective:

This study examined the transition to adult healthcare for individuals with spina bifida (SB) and explored demographic and relational associations with transition status.

Method:

Young adults with SB (18–30; n =326) were recruited to complete an anonymous, online survey. Frequencies of reported experiences, behaviors, and satisfaction with the transition to adult healthcare were examined. Non-parametric tests and exploratory hierarchical regressions were utilized to examine demographic and relational factors with physicians between those: 1) who had and had not yet transitioned; and 2) who did and did not return to pediatric care.

Results:

The majority of the sample reported having transitioned to adult healthcare, with three quarters reporting that their primary physician is an adult primary care doctor. Individuals who had transitioned were more likely to be younger (p=.01) and to not have a shunt (p=.003). Beyond the effect of age and shunt status, relational factors with pediatric providers were not associated with transition (ps>.1). Following transition, over one-third reported returning to a pediatric provider. Those who did not return to pediatric care were more likely to have myelomeningocele, be a full-time student, and to not have a shunt (ps<.001). Beyond the effect of age and shunt status, lower ratings of communication with adult providers was associated with a return to pediatric care (p=.04).

Conclusion:

Results highlight the need for additional research about barriers and facilitators to the transition to adult healthcare to target interventions that support this critical milestone in young adults with SB.

INTRODUCTION

Spina bifida (SB) is one of the most common congenital birth defects, affecting roughly 1 out of every 1,000 live births around the world.¹ SB has been nicknamed a “snowflake condition,” as every individual with SB has their own unique symptom profile that overlaps with the domains of: 1) physical disabilities, 2) intellectual disabilities, and 3) chronic health conditions.² Physical impairments depend on the level of the lesion (i.e., sacral, lumbar, thoracic), but often include limited mobility and frequently require the use of assistive devices (i.e. crutches or braces). Complete paralysis of the lower extremities is also possible, necessitating dependency on the use of a wheelchair. This assistance increases the chance of secondary complications, such as pressure injuries. Furthermore, individuals with SB typically have complex urological complications that require the use of catheterization and/or bowel programs¹ and are therefore prone to urinary tract infections. Neurologically, those with SB typically have shunts to prevent hydrocephalus.¹ Intellectually, people with SB typically have lower IQ scores, difficulty with executive functioning, and challenges in the areas of independence and social functioning.³ As a chronic health condition, SB requires ongoing medical adherence and maintenance from a multidisciplinary team of providers throughout one’s lifetime.^1,4 Taken together, these physical, intellectual, and chronic health domains create a complex and challenging condition to manage.

Given their unique symptom profiles, individuals with SB require individualized treatment plans. These plans often require the involvement of multidisciplinary medical treatments (i.e. urology, neurology, and orthopedics). In the United States’ pediatric healthcare setting, patients with SB are often seen in one multidisciplinary clinical setting, allowing all of their physicians to communicate about each individual case and potential complications.⁵ This streamlined process of care has demonstrated success, such that it is associated with increased medical adherence.⁶ Conversely, patient care in adult healthcare settings tends to be more fragmented (i.e., less likely to be within one multidisciplinary clinical setting). Indeed, patients are typically required to visit multiple clinics to see physicians from different disciplines, resulting in less coordination and communication among doctors and requiring more independence and responsibility on the part of the patient.⁵ This complexity also makes the transition from pediatric to adult healthcare an especially challenging period for young adults with SB. Put another way, given the multidisciplinary nature of their treatment, youth with SB must complete multiple transitions to adult care, rather than just one.⁷

The transition from pediatric to adult healthcare services also takes place at a stage of development when medical autonomy is developing and the risk of medical nonadherence is highest, namely: during adolescence and young adulthood. Medical autonomy refers to the combination of gaining more responsibility over one’s medical care as well as developing increasing skills to perform such medical tasks.⁴ However, higher levels of youth responsibility are often associated with higher levels of nonadherence in adolescents with SB.⁴ Critically, adolescents and young adults with SB are already prone to higher levels of nonadherence at a time when they are supposed to transfer their medical care to a more complex adult healthcare environment. This places them at an even higher level of risk for complications due to nonadherence--something that can be potentially life-threatening for people with SB.⁸ Therefore, a smooth and successful transition to adult healthcare is of particular importance for individuals with SB.

Despite the critical nature of this transition, a significant gap in the literature exists around the transition to adult healthcare. One potential cause for this gap in knowledge may be that life expectancy for individuals with SB only recently extended into adulthood.^8,9 The purpose of this study was to directly address this gap in knowledge by characterizing the transition from pediatric to adult healthcare for young adults with SB in the United States. Given the multifaceted medical management associated with SB, young adults with SB were assessed for characteristics associated with their transition to adult healthcare (e.g., transition status, preparation methods for transition, relational factors with providers, etc.). Demographic differences were also examined between: 1) those who had vs. had not yet transitioned to adult healthcare; and 2) those who had to return to a pediatric provider following transition vs. those who continually maintained care with adult providers following transition. Given the potentially important role of relationships with medical providers in transition,¹⁰ relational factors with pediatric and adult physician providers were examined in association with transition status and whether or not the individual returned to pediatric care after transitioning. Given that individuals with SB tend to demonstrate delayed developmental milestones achievement compared to their typically-developing peers,^11–13 it was hypothesized that the young adults with SB would report delays in transitioning to adult healthcare, such that the majority would still identify pediatric physicians as their primary providers.

METHODS

Participants

Participants were recruited nationally through the support of the Spina Bifida Association (SBA), a national voluntary health organization in the United States supporting education, advocacy, and research to improve the lives of individuals with SB. SBA advertised the study link on their website and social media pages. Participants were eligible for inclusion if they: 1) had SB, 2) were between 18 and 30 years of age, 3) were able to read and write in English, and 4) were able to answer the survey questions without the assistance of others (to promote privacy and honest responses, and to exclude lower functioning young adults with SB). The first 150 participants were compensated for their time and participation with a $10 Amazon Gift Code.

Procedure

In compliance with the University Institutional Review Board and consistent with previous national online survey methodologies for individuals with SB,¹⁴ participants were consented via digital waiver of documented consent before participating. Specifically, interested participants were provided a link connecting them to a detailed digital version of the study consent form. Subjects agreed to participate in the study by checking a “yes” box; participants were unable to proceed to the survey without completing this section. After completing the digital waiver of documented consent page, participants anonymously completed the assessment. Upon completion of the survey, and to maintain the anonymity of the assessment responses, participants were provided a link to initiate a different survey that enabled them to provide contact information for compensation.

Measures

Self-report assessments were administered and managed via Qualtrics, a secure online survey platform licensed and administered by Loyola University Chicago.

Demographics and Medical Characteristics

Participants were asked to report the following information: age, sex, race/ethnicity, education/employment status, and SB characteristics, including: type, shunt status and type, shunt revision history, and lesion level.

Transition to Adult Healthcare Questionnaire

The Transition to Adult Healthcare Questionnaire is a self-report questionnaire that was developed for a prior longitudinal research study of youth and young adults with SB.⁴ It includes multiple domains, including current: (1) form of healthcare (e.g., identification of current medical providers as pediatric or adult across typical specialists providing care for patients with SB); (2) medical transportation options and means of paying for medical care (e.g., parent’s insurance vs. own insurance, out of pocket costs, etc.). The measure also incorporates an assessment of transition readiness, informed by the Transition Readiness Questionnaire which was designed for transitioning youth with human immunodeficiency virus (e.g., identified an adult doctor, making own appointments, filling own prescriptions, comfort in asking medical questions, etc.).¹⁵ Communication with the primary pediatrician and adult primary care provider (if applicable) is assessed using items based on the Communication Assessment Tool, a reliable and valid measure of patient perceptions of a physician’s interpersonal and communication skills (e.g., treated with respect, showed interest, understands main health concerns).¹⁶ The communication questions demonstrated acceptable reliability for the primary pediatrician (α = .87) and adult primary care provider (α = .87). Satisfaction with the primary pediatrician and adult primary care provider (if applicable) is assessed with items evaluating participant satisfaction with domains such as communication, relationship, ease of making appointments, wait time, overall care. The satisfaction questions demonstrated acceptable reliability for the primary pediatrician (α = .58) and adult primary care provider (α = .66). Relational bond with the primary pediatrician and adult primary care provider (if applicable) is assessed using the bond subscale items of the Working Alliance Inventory, a measure of alliance between a provider and patient (e.g., feel comfortable, understand each other).¹⁷ The bond subscale items demonstrated acceptable reliability for the primary pediatrician (α = .84) and adult primary care provider (α = .86). Finally, transition planning and execution are also assessed (e.g., at what age transition occurred, who initiated discussion of transition, who identified adult medical providers, satisfaction with transition discussion and planning, etc.).

Data Analysis

Descriptive statistics were conducted to evaluate the frequencies of reported experiences, behaviors, and satisfaction with the transition to adult healthcare. Mann-Whitney U-tests and chi-square tests were used to compare differences across continuous and categorical demographic variables for: 1) those who reported a transition to adult healthcare (defined by seeing an adult provider for primary care) vs. those who did not; and 2) those who reported needing to return to a pediatric provider following transition, compared to those who did not. Hierarchical logistic regressions were used to examine associations between physician-related factors (satisfaction, communication, bond) with pediatric and adult physicians and the outcomes of transition status and return to pediatric care (with this latter outcome only measured for those that endorsed that they had transitioned to adult care). The regressions were run with the following steps: 1) main effect of age; 2) main effect of shunt status; and 3) main effect of relational factor (i.e., satisfaction, communication, and bond with pediatric and/or adult physician).

RESULTS

Sample Characteristics

Participants were recruited in November and December 2019. Four hundred and seventy participants completed consent for the survey. Following the removal of participants with incomplete or inaccurate data entry (please see Supplementary Materials exclusion details), 326 participants were included in the current study. The majority of the sample was male (70.6%) and Caucasian (95.1%), and most often had myelomeningocele (the most severe type of SB; 53.1%), a shunt (65.3%), and a lumbar lesion level (60.1%). The sample ranged in age from 18 to 30 (Mean Age = 23.44 ± 2.93). Table 1 displays the sample characteristics.

Table 1.

Survey Respondent Demographic and Medical Characteristics (n = 326)

	n (%)
Age, M(SD; range)	23.44 (2.92; 18–30)
Sex
Male	230 (70.6%)
Female	96 (29.4%)
Race/Ethnicity
African American	8 (2.5%)
Asian	1 (0.3%)
Caucasian	310 (95.1%)
Hispanic	7 (2.1%)
Highest Level of Education
Some Grade School	1 (0.3%)
Grade School	5 (1.5%)
Some High School	19 (5.8%)
High School	37 (11.3%)
Some College	133 (40.8%)
College	121 (37.1%)
Graduate or Professional Courses	10 (3.1%)
Employment Status
Employed, Full Time	120 (36.8%)
Employed, Part Time	37 (11.3%)
Disability from Work	37 (11.3%)
Student	96 (29.4%)
Unemployed	34 (10.4%)
Volunteer	2 (.6%)
SB Type
Myelomeningocele	173 (53.1%)
Meningocele	67 (20.6%)
Lipomeningocele	57 (17.5%)
Lipomyelomeningocele	14 (4.3%)
Lipoma	15 (4.6%)
Shunt Present	213 (65.3%)
With Revision History	164 (77.4%)
Lesion Level
Sacral	100 (30.7%)
Lumbar	196 (60.1%)
Thoracic	30 (9.2%)

Note. M = mean; SD = standard deviation; SB = spina bifida.

Current Medical Care

The majority of the sample reported that their primary physician is an adult primary care doctor (76.4%; n = 249). About 15% of the sample reported that their primary physician is a pediatrician (n = 51) and less than 10% of the sample reported having found an adult provider but not yet had an appointment (6.1%; n = 20) or no longer seeing their pediatrician and having not yet located an adult provider (1.8%; n = 6). Table 2 displays transition status by physicians and specialty providers.

Table 2.

Transition Status for Physicians and Specialty Providers, n(%)

	Pediatric	Adult
Primary Care	51 (15.6%)	249 (76.4%)
Neurologist	74 (22.7%)	106 (32.5%)
Neurosurgeon	64 (19.6%)	112 (34.4%)
Occupational Therapist	56 (17.2%)	86 (26.4%)
Orthopedist	83 (25.5%)	192 (58.9%)
Physical Therapist	58 (17.8%)	121 (37.1%)
Social Worker	41 (12.6%)	79 (24.2%)
Psychologist	25 (7.7%)	77 (23.6%)
Urologist	60 (18.4%)	99 (30.4%)

Note. Specialty providers are not anticipated to be uniformly seen by all individuals with spina bifida. Therefore, the sum of pediatric and adult utilization for each type of provider does not necessarily match the total sample size.

Insurance Coverage

The majority of the sample reported having health insurance (91.4%; n = 298), with many receiving coverage from their parents’ insurance (70.6%; n = 230). For those with health insurance, about three quarters of the participants reported having their primary physician (75.5%; n = 246) and prescription medications (75.8%; n = 247) covered by insurance. However, only about half of the participants reported having other healthcare supplies covered by insurance (e.g., catheterization supplies; 53.1%; n = 173). On a six-point Likert scale ranging from “Very Dissatisfied” to “Very Satisfied,” the most frequently endorsed rating of satisfaction with health insurance coverage was “Satisfied” (43.9%; n = 143), followed by “Moderately Satisfied” (27.3%, n = 89).

Medical Supplies and Transportation

The sample was nearly evenly split in terms of responsibility for ordering medical supplies. About half reported ordering supplies for themselves (49.4%; n = 161) and the other half reported that their parents typically order their supplies (48.2%; n = 157). Regardless of who has the responsibility for the orders, a little over half of participants reported using an automatic refill service for medications and/or medical supplies (55.2%; n = 180).

For transportation to medical appointments, participants were asked to endorse all travel methods that they typically use. The majority rely on parents, friends, or partners (68.1%; n = 222). A little over one third of participants endorsed driving themselves (39.6%; n = 39.6) or using public transportation (35.9%; n = 117) to medical appointments. Finally, about 10 percent of participants reported using ADA Paratransit or Dial-A-Ride services to get to medical appointments (9.5%; n = 31).

Total Costs of Care

On average, participants estimated that both their own and their family’s annual out of pocket costs for medical appointments, Emergency Department visits, prescription medications, and other medical supplies (e.g., catheterization materials) were over $7,000 and $5,500, respectively. Costs associated with assistive technologies were $604 and $460, on average, for young adults with SB and their families, respectively. Supplementary Table 1 details specific estimated out of pocket costs for the young adults with SB and their families.

Transition to Adult Healthcare

Table 3 displays the characteristics of the transition to adult healthcare for this sample. About half of the participants reported having a specific discussion about the transition to adult healthcare (51.8%; n = 169) and that the discussion occurred around the age of 18 (Mean age = 18.48 ± 3.75). For participants who had transitioned to adult healthcare, this transition occurred around the age of 20 (Mean age = 20.03 ± 4.22). About one third of those who had transitioned endorsed having to go back to see a pediatric provider after the transition (n = 82); reasons included specialty care (e.g., urologist), mental health/worries, or specific information that the pediatric provider knew about SB or the patient’s history.

Table 3.

Transition to Adult Healthcare

	n (%)
Returned to Pediatric Care Following Transitiona	82 (32.9%)
Discussion About Transition
Yes	169 (51.8%)
No	157 (48.2%)
Age at Time of Discussion, M(SD)	18.48 (3.8)
Made Decision to Transition
Young Adult with SB	118 (36.2%)
Parent(s)	148 (45.4%)
Primary Physician	58 (17.8%)
Identified an Adult Provider
Young Adult with SB	111 (34.0%)
Parent(s)	165 (50.6%)
Primary Physician/Other Medical Staff	49 (15.0%)
Scheduled First Appointment
Young Adult with SB	114 (35.0%)
Parent(s)	190 (58.3%)
Primary Physician/Other Medical Staff	22 (6.7%)
Attended First Appointment
Alone	42 (12.9%)
With Parent(s)	268 (82.2%)
With Significant Other	16 (4.7%)
Schedule Future Appointments
Young Adult with SB	156 (47.9%)
Parent(s)	168 (51.5%)
Other	2 (.6%)
Attend Future Appointments
Alone	74 (22.7%)
With Parent(s)	232 (71.2%)
With Significant Other	20 (6.1%)
Readiness to Make Transition
Not at All	7 (2.1%)
A Little	38 (11.7%)
Somewhat	134 (41.1%)
Moderately	110 (33.7%)
Extremely	35 (10.7%)

Note. SB = spina bifida; M = mean; SD = standard deviation.

^aPercentage calculated from total number of participants reporting that they had transitioned to an adult primary care provider (n = 249).

Regarding the timing of the transition to adult healthcare, about half of participants reported that this decision was/will be made by their parents (45.4%; n = 148). About one-third of participants reported that they did/will make the decision for themselves about the timing of transition (36.2%; n = 118) and 17.8% reported that their primary pediatric physician did/will make this decision for the family (n = 58). For the logistics of setting up care with an adult provider, about half of the sample reported that their parents did/will identify an adult provider with whom to establish care (50.6%; n = 165). About one-third of participants reported that they did/will identify an adult provider for themselves (34.0%; n = 111) and 15% reported that their pediatric provider or another medical staff member did/will identify an adult provider for them (n = 49). Similar patterns were reported for who did/will make the first appointment with the adult provider as well (i.e., parents [58.3%], self [35%], pediatric provider [6.7%]). When attending a first appointment with an adult provider, the majority of participants endorsed bringing someone with them--parents (82.2%; n = 268) or a spouse/romantic partner (4.7%; n = 16). For future appointments beyond the first appointment, about half of the sample reported that their parents do/will schedule appointments (51.5%; n = 168) and are still likely to attend medical appointments with the young adults with SB (71.2%; n = 232). On a five-point Likert scale ranging from “Not at All” to “Extremely,” the most frequently endorsed rating of feeling ready for transition to adult healthcare was “Somewhat” (41.1%; n = 134), followed by “Moderately” (33.7%; n = 110).

Associations with Demographic Characteristics

Transition Status.

Given the uneven distribution of participants who had transitioned to adult healthcare (n = 249) and who had not yet transitioned (n = 77), nonparametric tests were utilized to compare these groups. Those who had transitioned to adult healthcare were typically younger than those who had not (Median Age 23.00 vs. 25.21; p = .01). Additionally, a higher proportion of young adults with SB who had transitioned to adult healthcare did not have a shunt compared to those who have a shunt and had transitioned (85.8% vs. 65.8%; p = .003). There was no evidence to suggest differences in type of SB, lesion level, sex, race/ethnicity, highest level of education, employment status, or insurance status between groups (ps > .06).

Return to Pediatric Care.

Nonparametric tests were also used to examine demographic differences for participants who had to return to a pediatric provider following transition (n = 82) compared to those who did not (n = 118). Differences emerged between these groups based upon type of SB (p < .001), employment status (p < .001), and shunt status (p < .001). Higher proportions of young adults with SB who did not need to return to pediatric providers had myelomeningocele, described their employment status as being full-time students, and did not have a shunt. There was no evidence to suggest differences in lesion level, age, sex, race/ethnicity, highest level of education, or insurance status across these two groups (ps > .06).

Associations with Relational Factors with Physicians

On a one (Not at all) to five (Extremely) scale, young adults with SB rated their satisfaction with pediatric providers as 3.64 ± .54 and with adult providers as 3.81 ± .54 (i.e., scores of three and four represent Somewhat and Moderately, respectively). Using the same scale, communication with pediatric providers received an average rating of 3.70 ± .58 and with adult providers as 3.84 ± .53. The average proportion of “excellent” scores for communication was 20.76% (SD = 4.39, range = 11.7–27.9) for pediatric providers and 7.11% (SD = 2.44, range = 2.5–10.7) for adult providers, both of which are lower than the proportion of “excellent” ratings for the sample upon which the original measure was normed (i.e., 76.3% ± 11.1, range 45.7–95.1%).¹⁶ With a possible range of 12–84, bond with providers received average ratings of 55.46 ± 7.51 (range = 31–81) for pediatric providers and 56.02 ± 7.66 (range = 35–81) for adult providers. Hierarchical logistic regressions were used to first examine associations between relational factors (satisfaction, communication, bond) with pediatric physicians and the outcome of transition status. Transition status was significantly associated with the first and second steps of age and shunt status, respectively (ps ≤ .03; see Table 4). Specifically, those who were younger and who did not have a shunt were more likely to have transitioned to an adult provider. However, there was no evidence to suggest associations with relational factors beyond the effect of age and shunt status (ps > .1). Hierarchical logistic regressions were next used to examine associations between relational factors with pediatric and adult providers and the outcome of return to pediatric care. The first step of all analyses did not support an association with age for return to pediatric care (ps > .1). However, the second step of shunt status was associated with all analyses (ps ≤ .035). Finally, there was no evidence to support an association for relational factors with return to pediatric care (ps > .1), with the exception of communication with adult providers. Indeed, beyond the effect of age and shunt status, lower ratings of communication with adult providers was associated with a return to pediatric care (β = −1.97, p = .04).

Table 4.

Associations of Provider Relational Factors with Transition Status and Return to Pediatric Care

Logistic Regression variable	Step	df	β	SE β	Wald’s χ2	p	df	β	SE β	Wald’s χ2	p
		Transition Status					Return to Pediatric Care
Pediatric Satisfaction model
Age	1	1	−.110	.045	5.85	.016	1	.039	.050	.605	.44
Shunt Status	2	1	−.769	.315	5.96	.015	1	3.51	.532	43.70	<.001
Satisfaction	3	1	.063	.241	.068	.79	1	−.096	.349	.076	.78
Pediatric Communication model
Age	1	1	−.100	.047	4.52	.03	1	.038	.051	.578	.45
Shunt Status	2	1	−.864	.332	6.76	.009	1	3.52	.530	44.11	<.001
Communication	3	1	.320	.236	1.84	.18	1	−.460	.340	1.83	.18
Pediatric Bond model
Age	1	1	−.110	.046	5.83	.016	1	.039	.050	.610	.44
Shunt Status	2	1	−.763	.315	5.84	.016	1	3.53	.531	44.09	<.001
Bond	3	1	.028	.018	2.46	.12	1	−.029	.024	1.42	.23
Adult Satisfaction model
Age	1						1	−.003	.112	.001	.98
Shunt Status	2						1	3.05	1.16	7.00	.008
Satisfaction	3						1	−1.31	.879	2.23	.14
Adult Communication model
Age	1						1	−.21	.16	1.73	.19
Shunt Status	2						1	2.50	1.12	4.44	.035
Communication	3						1	−1.97	.97	4.12	.042
Adult Bond model
Age	1						1	.022	.098	.049	.83
Shunt Status	2						1	2.39	.885	7.27	.007
Bond	3						1	−.082	.057	2.05	.15

Note. Step 1 examines the main effect of age. Step 2 examines the main effect of shunt status. Step 3 examines the main effect of a relational factor.

DISCUSSION

Transition to adult healthcare involves purposefully moving individuals from pediatric-centered to adult-oriented care to provide optimal, developmentally appropriate healthcare services.^18,19 For individuals with SB, successful transition is complicated by several aspects of SB: unique symptom profiles,² executive functioning challenges that inhibit independence and autonomy,³ the need for multidisciplinary medical treatments,¹ and the high risk of medical nonadherence.⁴ Understanding the landscape of healthcare for adults with SB and their transition status is especially relevant as more individuals with SB are living well into adulthood,^8,20 and in need of adult healthcare services.

This study aimed to examine the transition from pediatric to adult healthcare in the United States for individuals with SB. Given that developmental milestones are often achieved for individuals with SB later than their typically-developing peers,^11–13 results indicated that an impressive number of participants--about three fourths of the sample--transitioned to adult healthcare (i.e., receive primary care from an adult physician). While the proportions of adult specialty care providers were not as high, the number of participants with adult providers was higher than those reporting having pediatric providers across all specialties. Of note, individuals who had transitioned to adult healthcare were more likely to be younger and to not have a shunt. It is possible that a generational effect has been captured with this current cohort, as a focus on the transition to adult healthcare in youth with SB has emerged in more recent years. This focus may have benefited the younger participants in this sample such that they may have been more likely to receive support and planning for transition compared to the older participants in this sample. Additionally, the shunt status difference may highlight an SB-specific characteristic related to transition. Specifically, cognitive correlates with having a shunt may increase the difficulties of transitioning to adult healthcare.²¹ Additional research is needed to explore how these variables relate to transition status over time, and whether there are specific risk factors related to shunt status or cohort effects that may explain this variability.

Over one third of those who transitioned to adult healthcare reported still needing to return to a pediatric provider post-transition. The reasons for this return to a pediatric provider (e.g., specialty care, mental health, etc.) may reflect differences in specialty care, such that certain pediatric specialty providers may wish to treat their patients further into young adulthood. However, the returns may also highlight potential needs that are not being met in their adult healthcare services. Young adults with SB with a successful transition (i.e., did not return to a pediatric provider) were more likely to have myelomeningocele, be full-time students, and not have a shunt. Future research should explore if such characteristics might inform intervention and planning efforts for young adults with SB transitioning to adult healthcare. For example, if having a shunt places individuals at greater risk for difficulties with the transition process, providers might consider discussing this with patients and making contingency plans for potential shunt malfunctions. Further, as myelomeningocele is the most common form of SB, efforts to focus on the transition for patients with other forms of SB (e.g., lipomeningocele) may need to be increased.

Relationships with medical providers have been identified as playing a role in the transition from pediatric to adult healthcare.¹⁰ Indeed, communication ratings with adult providers was associated with a transition factor beyond the effect of age and shunt status. Specifically, lower ratings of adult physicians’ communication were associated with a return to a pediatric provider following the transition to adult healthcare. While the average ratings of communication were similar across pediatric and adult providers, there was a larger difference in the proportion of providers who received a rating of “excellent” (i.e., 20.76% for pediatric vs. 7.11% for adult). While we are hesitant to over-interpret these findings, they may reflect longer relationships established earlier in life with pediatric providers compared to more recent initiations to adult providers. Conversely, the findings may implicate the need to further assess communication practices that adult practitioners employ with young adults with SB. If warranted, communication strategies are a teachable skill²² and could be implemented into practice to improve retention in adult healthcare settings for young adults with SB.

Challenges surrounding autonomy, independence, and readiness to transition were apparent among participants. Nearly half of participants reported that the decision to transition to adult healthcare was or will be made by their parents (participants were able to answer these questions hypothetically if they had not yet transitioned; to simplify the language, the remainder of the discussion will use phrasing as if the transition occurred). Similarly, approximately half of the participants reported that their parents identified their adult provider for them, and nearly 60% of the sample reported that a parent made the first appointment with the adult provider. Only a little over a third of the sample reported that: 1) they made the decision for themselves about the timing of transition; 2) identified their own adult provider; or 3) made the first appointment. Additionally, the majority of participants reported that they rely on parents, friends, or their partners for transportation to medical appointments, and approximately half of the participants reported that their parents typically order their supplies. These findings are consistent with studies showing a reliance on parents across transition to adult healthcare for chronic conditions (e.g., cystic fibrosis),²³ as well as delays in decision-making responsibility¹¹ and lower levels of autonomy in individuals with SB⁴ compared to their typically developing peers.

The current findings also highlight the need to assess readiness for transition in youth with SB so as to best bolster those who may require additional support. While over half of the participants had engaged in planning and preparation for transition in the form of specific discussions with their providers--typically around the age of 18, these discussions would ideally be occurring earlier in development to best facilitate a seamless transition. Indeed, the Spina Bifida Association (SBA) recommends that transition planning and coordination start between the ages of 12 to 17.²⁴ Having these conversations later in adolescence may have made many participants in the sample feel less prepared for transition. Indeed, the most frequently endorsed rating for readiness to transition to adult healthcare was “Somewhat.” It is unclear whether providers assessed transition readiness during transition discussions and preparation, as is recommended by the SBA’s guidelines for transition.²⁴ The current findings therefore support assessment, discussion, and support surrounding transition readiness to maximize individuals’ comfort and confidence in the transition process.

Beyond transition status and independence in healthcare activities and decisions, this study captured other elements of healthcare for young adults with SB, including health insurance and costs associated with their medical management. In terms of medical insurance, findings were generally promising. The majority of individuals reported having insurance, mostly through their parents’ coverage. However, it is unclear if such participants have made plans for health coverage once they are beyond the current pediatric age range extending up to 26 years. Typically, individuals were “Satisfied” or “Moderately Satisfied” with their insurance coverage. However, given the complicated nature of SB, it is discouraging that only about half of the participants reported that their medical supplies were covered by insurance. Indeed, these supplies can be vital to proper care and management of SB-related complications; a lack of supplies could lead to life-threatening complications.^8,25 Further, participants estimated that their annual out-of-pocket costs for their healthcare was thousands of dollars. Such high costs and limitations with health insurance should be further explored as possible barriers to receiving adequate healthcare as an adult.

The current findings should be interpreted in light of specific limitations. First, data relied solely on self-report for information about transition, a potentially complicated and subjective concept. Future research should include multiple perspectives on transition, including: healthcare providers, parents, and significant others. Data collection also occurred via an online survey, which did not allow participants to ask clarifying questions that may have better elucidated the queried topics. Second, the sample demographics were skewed in sex and race. The majority of the sample was male and overwhelmingly Caucasian. Unfortunately, the sample included very few Hispanic or Latinx families, despite the high prevalence rates of SB in these populations.²⁶ Future research should engage in targeted sampling so as to focus on females as well as Hispanic and Latinx populations to ensure a more representative sample of individuals with SB. Third, this was a sample from the United States and it is unclear how the findings generalize to young adults with SB in other countries. Fourth, young adults who could not independently complete an online survey were excluded. It is unclear how the findings extend to individuals with SB with different levels of functioning. Finally, Given the large number of individuals who had transitioned, analyses comparing groups based on transition status were limited by the smaller sample size of the group that had not yet transitioned. These analyses should be replicated with a larger sample of individuals with SB who have not transitioned to adult healthcare as young adults to promote the identification of specific characteristics that would benefit from targeted interventions.

These findings also provide a launching point for additional important research questions surrounding the transition to adult healthcare for individuals with SB. Future studies should investigate factors associated with transitioning vs. delaying the transition to adult healthcare services. Specifically, research is needed to explore barriers to transitioning. While the literature implicates many potential barriers, including: 1) lack of information about transition;^27,28 2) limited access to adult healthcare providers;^28–30 3) transportation issues;³¹ 4) low decision-making autonomy;²⁷ and 5) limited insurance coverage and high out-of-pocket costs,^29,31 identifying the most salient barriers will facilitate the development of interventions and services. Relatedly, given the number of young adults who reported being covered under their parents’ insurance, a significant gap in services and coverage may be occurring for adults with SB in their late 20’s and early 30’s who are no longer covered by their parents’ health insurance under the Affordable Care Act. Additionally, future work should explore factors associated with returning to pediatric providers after transitioning to adult providers, whether this is something preferred by providers to ensure a smoother transition or if it is an indicator of an unsuccessful or problematic transition to adult healthcare.

The current study advances our understanding of the current healthcare and transition status of young adults with SB. Overall, many individuals reported having made the transition to adult healthcare. However, findings also highlight several ways in which individuals with SB may continue to struggle with successfully transitioning to adult-oriented care. Specifically, enhanced support in the domains of decision-making autonomy, independence, readiness to transition, and financial costs may be needed to optimize the transition of young adults with SB. Further, an emphasis on communication strategies for adult providers may be a beneficial means to prevent a return to pediatric care following transition. This work also underscores a need to better understand the nuances and obstacles of transition to adult healthcare--from initial barriers to set-backs that send individuals back to pediatric providers after transition. Doing so may inform best practices and facilitate this critical healthcare transition and associated milestones for young people with SB.