926318

research-article2020
AUT0010.1177/1362361320926318AutismAmes et al.

Autism and Physical Health Across the Lifespan

Autism

Transitioning youth with autism spectrum 1­–13

© The Author(s) 2020
Article reuse guidelines:
disorders and other special health care sagepub.com/journals-permissions
DOI: 10.1177/1362361320926318
https://doi.org/10.1177/1362361320926318

needs into adult primary care: A provider journals.sagepub.com/home/aut

survey

Jennifer L Ames1 , Maria L Massolo1, Meghan N Davignon2,

Yinge Qian1, Hilda J Cerros1 and Lisa A Croen1

Abstract
Health care continuity during the transition from pediatric to adult care is critical to helping individuals with autism
spectrum disorders manage complex medical and psychiatric co-morbidities that start in childhood and evolve with age.
We conducted a brief online survey of pediatric and adult providers at Kaiser Permanente Northern California, a large
integrated health care delivery system, to assess departmental policies and personal approaches to transitioning patients
with special health care needs, including autism spectrum disorders. A total of 354 pediatric (43% response rate) and
715 adult providers (30% response rate) completed the survey. A large majority of departments did not have transition
policies in place. Many providers in both primary care and mental health did not provide transition resources, review
legal changes, use standardized assessment tools, or communicate with the next/previous provider. Transition planning
was usually delayed until age 17 or later. Most providers did not have consistent approaches to the transition of care for
youth with special health care needs and may be inadequately prepared to handle the process for patients with autism
spectrum disorders. As the population of transition-age youth with autism spectrum disorders continues to grow, there
is urgent need to understand how to best implement transition policies that promote early communication between
providers and families and track outcomes among transitioning patients with special health care needs.

Lay Abstract
The transition from pediatric to adult care is a critical inflection point for the long-term health of youth with autism
spectrum disorders and other special health care needs. However, for many patients, their caregivers, and providers, the
transition lacks coordination. This survey study demonstrates that pediatric and adult providers struggle to implement
many components of transition best practices for youth with autism and other chronic conditions, highlighting the
urgent need for enhanced medical coordination and additional transition training and resources.

Keywords
autism spectrum disorders, health services, transition

Introduction health care transition coincides with a sudden drop-off in

The transition from pediatric to adult health care is often
difficult to navigate for adolescents and their families.
This process is particularly problematic for youth with
special health care needs (SHCN) who, because of chronic
physical, developmental, behavioral, or emotional condi-
tions, may require different and more health services than
is typically required by young people (Blum et al., 1993;
McPherson et al., 1998). For youth with developmental
disabilities such as autism spectrum disorders (ASD), the
educational and other therapeutic services (Blum et al.,
1
Kaiser Permanente Division of Research, Oakland CA, USA
2
Kaiser Permanente Roseville Medical Center, Pediatric Subspecialties;
Regional Medical Director of Pediatric Developmental Disabilities, USA
Corresponding author:
Jennifer L Ames, Division of Research, Kaiser Permanente, 2000
Broadway, Oakland, CA 94612, USA.
Email: Jennifer.l.ames@kp.org
2 Autism 00(0)
1993; Shattuck et al., 2011). This period, referred to as a
“services cliff,” can have profound implications for the
well-being and life course of these individuals and their
families (Roux et al., 2015). Youth with ASD often have
complex medical needs which, along with their social
communication difficulties and behavioral challenges,
can make finding and building trust with a new adult care
provider challenging (Davignon et al., 2018; Tregnago &
Cheak-Zamora, 2012). The multi-faceted changes associ-
ated with the transition to adulthood can exacerbate medi-
cal and psychiatric conditions that commonly co-occur in
youth with ASD, including epilepsy, anxiety, sleep disor-
ders, obesity, and gastrointestinal disorders, underscoring
the importance of health care continuity (Davignon et al.,
2018).
The number of adolescents with SHCN transitioning
from pediatrics to adult care is growing, partly due to the
rising prevalence of neurodevelopmental conditions like
ASD (Reiss et al., 2005; Sharma et al., 2014). It is esti-
mated that 18.8% or 13.8 million of US children have
SHCN (Maternal and Child Health Bureau, 2016–2017).
Recent estimates of ASD prevalence in US children are
at 1.5%–2.5% (Baio et al., 2018; Kogan et al., 2018) and
each year, at least 50,000 individuals with ASD transi-
tion to adulthood (Shattuck et al., 2012). Although the
health care transition has been a concern for families and
physicians for decades and was emphasized in the
Department of Health and Human Services’ Healthy
People 2010 and 2020 agendas (U.S. Department of
Health and Human Services, Office of Disease Prevention
and Health Promotion, 2000, 2010), institutional
approaches remain haphazard; many pediatric depart-
ments lack written transition policies that formalize the
timing of transition planning and steps of transition
readiness, including discussion of care plans and legal
changes with patients and families and coordination with
the receiving care team (Kuhlthau et al., 2016; Lebrun-
Harris et al., 2018). As a result, both young adults with
and without SHCN often have lapses in care (Lebrun-
Harris et al., 2018; Weiss et al., 2018). Furthermore,
youth with ASD receive fewer transition resources than
their peers with other SHCN and often experience
steeper declines in utilization of outpatient health ser-
vices in young adulthood than non-autistic youth with
intellectual disability (Nathenson & Zablotsky, 2017;
Rast et al., 2018; Shea et al., 2018).
While several studies have examined providers’ perspec-
tives on the health care transition, representation is largely
skewed toward pediatrics (Berg Kelly, 2011; Burke et al.,
2008; Davidson et al., 2015; Geenen et al., 2003; Kuhlthau
et al., 2015; Okumura et al., 2008). The objective of this
study was to assess current medical practices for transition-
ing patients with ASD and other SHCN from the broader
perspective of both pediatric and adult care providers within
an integrated US health care delivery system.
Methods
Study overview
A brief online survey was conducted of pediatric and adult
health care providers at Kaiser Permanente Northern
California (KPNC), a large, integrated health care delivery
system serving over 4.3 million residents of the metro
Sacramento and San Francisco areas and surrounding 14
counties (Croen et al., 2017; Zerbo et al., 2015). The pro-
viders’ survey was developed by the KPNC Autism in
Adults Workgroup in consultation with “Got Transition,” a
partnership of the Health Resources and Services
Administration’s Maternal and Child Health Bureau and
the National Alliance to Advance Adolescent Health to
promote smoother transitions between pediatric and adult
health care. The ad hoc interdisciplinary Workgroup,
described in more detail elsewhere (Zerbo et al., 2015),
included KPNC pediatric and adult primary care and men-
tal health providers, caregivers, community service pro-
viders, and researchers.
Prior to starting study procedures, we obtained protocol
approval and a waiver for the need for written consent
from the Kaiser Foundation Research Institute Institutional
Review Board. However, before beginning the survey,
respondents were provided consenting language to inform
them about confidentiality and voluntary participation.
Study population
KPNC pediatric providers in the departments of pediatric
medicine and mental health (n = 818) and KPNC adult pro-
viders in the departments of adult medicine, family medi-
cine, and adult mental health (n = 2373) were eligible to
participate. Eligibility was inclusive of physicians, psy-
chologists, nurses, and social workers with pediatric or
adult care specialties.
Instrument
The online survey inquired about departmental and per-
sonal practices surrounding the planning, communication,
and implementation of the health care transition process
for patients with ASD and other SHCN. Examples of
SHCN provided at the outset of the survey reiterated ASD
and additionally included other neurodevelopmental disa-
bilities, diabetes, and epilepsy. Several questions addressed
specific actions by the provider, based on the Got
Transition’s Six Core Elements of Health Care Transition
(Got Transition Center for Health Care Transition
Improvement, 2014). Each question also included a com-
ments section. Respondents could write freely, but they
were encouraged to focus comments on whether their
departmental or personal approaches differed between
neurodevelopmental (e.g. ASD or attention deficit and
hyperactivity disorder) or medical diagnoses (e.g. diabetes
Ames et al. 3

or epilepsy). The survey questions were pilot tested for Table 1.  Survey respondents by medical title, Kaiser
readability and completion time by six KPNC pediatric Permanente Northern California.
and adult physicians who were not involved in the Provider title Pediatric survey Adult survey
Workgroup.
We designed separate surveys for pediatric and adult   (N = 354) (N = 715)
providers (Supplementary Figure 1). The pediatric provider   n (%) n (%)
survey had 20 questions and the adult provider survey had
Pediatrician 245 (69.2) 0 (0)
15 questions. Nine questions were identical or complemen-
Pediatric specialty physician 11 (3.1) 0 (0)
tarily phrased across the two surveys and formatted using
Internal medicine/pediatrics 2 (0.6) 54 (7.6)
either Likert-type scale (n = 5) or multiple choice (n = 4). (Med-Peds) physician
Questions unique to the pediatric survey addressed prac- Internal medicine specialist 0 (0) 256 (35.8)
tices in assisting with medical documentation for educa- Family practice physician 0 (0) 229 (32.0)
tional and vocational programs and in helping families Psychiatrist 13 (3.7) 33 (4.6)
identify an adult provider and plan the optimal timing of the Psychologist 35 (9.9) 51 (7.1)
transition. We also queried pediatric providers in primary Licensed Clinical Social 16 (4.5) 38 (5.3)
care on self-rated knowledge, skills, and resources for pro- Worker (LCSW)
viding care to people with ASD and their estimates of the Marriage and Family 20 (5.7) 38 (5.3)
number of patients with ASD in their panels, similar to Therapist (MFT)
questions asked in a prior survey of adult providers (Zerbo Nurse 6 (1.7) 6 (1.0)
et al., 2015). Some of these questions not directly related to Other 4 (1.1) 10 (1.4)
the health care transition will be reported in a separate arti-
cle. Questions unique to the adult survey addressed pro-
vider approaches to welcoming and orienting new patients mental health departments. In a secondary analysis, we
with SHCN, confirming the transfer with the pediatric pro- also examined survey responses in samples stratified by
vider, and soliciting patient feedback on the transition. providers with Medical Degrees (MDs) and other health-
Providers typically completed the surveys in 5–10 min. related degrees. We used an alpha level of 0.05 to assess
statistical significance in comparison tests. In the subset of
pediatric primary care providers, we compared their self-
Procedures reported estimates to the actual number of patients with
The final survey instrument was administered online via ASD in their panel as recorded in the KPNC electronic
DatStat Illume software. Following a recruitment strategy administrative databases (Zerbo et al., 2015).
that proved effective in our earlier survey of adult provid-
ers at KPNC (Zerbo et al., 2015), we first approached
Results
department chiefs to ask their permission and enlist their
help in contacting their care teams about the survey study. Of the 818 pediatric providers invited to take the online
We received permission from every chief we reached out survey, 407 (49.8%) started the survey and of those, 354
to and sent emails to all care teams we had permission to (87.0%) completed all survey questions. Of the 2373 adult
contact. Providers then received an email from the study care providers invited to take the survey, 897 (37.8%)
team, on behalf of their department chief, encouraging started the survey and of those, 715 (79.7%) answered all
them to complete a forthcoming brief survey about autism survey questions. Responses from partially completed sur-
spectrum disorders and transitioning adolescents with spe- veys were excluded from subsequent analyses. The major-
cial health care needs to adult care. A week after the initial ity of pediatric and adult respondents were primary care
email, each provider received a second email from our providers: 69.2% of pediatric providers were general pedia-
team, on behalf of their chief, with an invitation to com- tricians or internal medicine-pediatrics (med-peds) physi-
plete the survey, a unique individual link to the online sur- cians, and 67.8% of adult providers were internal medicine
vey, and consenting language. To improve participation or family practice physicians (Table 1). Specialty care
rates, email reminders were sent to those who had not yet respondents included pediatric subspecialists and mental
completed the survey at 2 and 4 weeks. health providers. Pediatric and adult providers represented
27 and 38 departments across KPNC, respectively. The
majority of pediatric providers worked in departments of
Data analysis pediatric medicine (71%) or mental health (25%), and <5%
We compared survey responses across pediatric and adult worked in a pediatric specialty department such as develop-
providers using chi-square tests. Among pediatric provid- mental pediatrics, pediatric oncology, and pediatric cardiol-
ers and separately among adult providers we also assessed ogy. Adult providers spanned 10 different departments with
differences in survey responses between primary care and most housed in adult medicine (59.7%), family medicine
4 Autism 00(0)
(16.9%), or adult mental health (20.6%). A small number
worked in young adult medicine, adult & family medicine,
adolescent and child mental health, or other clinics (2.8%).
Departmental approaches to transition of care
by provider type
Both pediatric and adult providers often reported that their
departments lacked consistent transition practices and poli-
cies (Table 2). Only about 20% of both pediatric and adult
providers affirmed their department had an established
mechanism for identifying and tracking transitioning adoles-
cent patients with SHCN while the remainder either did not
know or knew that no such mechanism existed. In open
responses, several providers noted the existence of transition
workflows for youth with diabetes but were not aware of
protocols for patients with other SHCN such as ASD. Adult
providers were more likely than pediatric providers to report
having a departmental list of adult providers interested in
caring for young adults with SHCN, but the frequency was
still relatively low (27% vs 10%). Several providers men-
tioned the availability of KPNC’s young adult clinic but
qualified that the clinic was not specific to managing patients
with SHCN. The vast majority (90%) of pediatric and adult
providers reported that their departments did not have writ-
ten recommendations regarding transitioning patients with
SHCN, or they were not aware of one. In the departments
where guidelines existed, 49% of pediatric and 57% of adult
providers reported that staff in their department were trained
regarding this transition policy. Seventy-one percent of pedi-
atric providers said their departments rarely or never con-
firmed the transfer of care of their SHCN patients after their
last pediatric visits while 84% of adult providers either did
not have or did not know of a welcoming process for new
patients with SHCN. Only 10% of pediatric providers indi-
cated that their departments had a process for assisting ado-
lescent patients with medical documentation for college,
vocational rehabilitation, or other programs.
Departmental approaches to transition of care
by department
Among pediatric providers, there were few differences
between pediatric medicine and mental health depart-
ments (Table 2). One exception was that pediatric mental
health providers were significantly less likely than pro-
viders in pediatric medicine to report having departmental
written transition recommendations (5% vs 11%). This
discrepancy held true among adult departments as well,
with only 2% of adult mental health providers compared
with 13% in adult internal medicine and 8% in family
medicine reporting that their departments had written
transition recommendations. Adult mental health provid-
ers were also less likely than adult and family medicine
providers to report having departmental mechanisms for
tracking and welcoming their transitioning patients with
SHCN (7% vs 16%–18%).
Given that providers working under the same department
chief may have had correlated responses regarding depart-
mental approaches, we further examined results accounting
for this departmental clustering by equally weighting
responses across the 27 and 38 unique pediatric and adult
departments sampled. Results were generally similar in
these analyses (data not shown) suggesting that uneven
response rates by department did not appreciably influence
findings. We often found high heterogeneity of responses
even among providers within the same department.
Departmental approaches to transition of care
by provider medical training
Departmental approaches among pediatric providers with
and without MDs were generally similar to each other
with some exceptions (Supplementary Table 1). Pediatric
providers with non-MD training were more likely than
providers with MD training to assist with medical docu-
mentation for outside programs. Among adult providers,
providers with MDs were more likely than providers
without MDs to report having departmental approaches
for transitioning patients.
Personal approaches to transition of care by
provider type
Pediatric and adult providers were unlikely to use many of
the recommended transition strategies in their personal
practices (Figure 1). Over half (55%–64%) of pediatric
and adult providers rarely or never provided resources to
their patients with SHCN or their families to aid in the
transition. Furthermore, about 73% of pediatric and adult
providers rarely/never reviewed legal changes, such as
those concerning conservatorship. In open responses, sev-
eral pediatric and adult providers remarked that they were
not aware of the legal changes associated with the health
care transition or waited for the family to raise the issue.
Adult providers were more likely than pediatric providers
to always/sometimes share a concise medical summary
and emergency care plan with their transitioning patients
with SHCN (56% vs 34%). Among the small proportion of
pediatric (10%) and adult (24%) providers that always/
sometimes used a standardized assessment tool (e.g. tran-
sition readiness or self-care assessment), only 14% of
pediatric providers and 28% of adult providers reported
always incorporating these results into their care plans.
Pediatric providers were more likely to always/sometimes
communicate or consult with adult providers about the
transfer of care than vice versa (57% vs 44%) though a
substantial proportion of both pediatric (43%) and adult
providers (56%) rarely/never had contact with the next/last
provider.
 Ames et al.

Table 2.  Survey responses regarding departmental approaches to the health care transition for patients with SHCN, by provider and department type, Kaiser Permanente
Northern California.

Survey questionsa Pediatric providers Adult providers

Department has: Department Department

All Pediatric Mental Other p-valueb All Adult Family Mental Other p-valueb p-valuec
(N = 354) Medicine Health (n = 14) (N = 715) Medicine Medicine Health (n = 17)
(n = 252) (n = 88) (n = 430) (n = 121) (n = 147)

  n (%) n (%) n (%) n (%) n (%) n (%) n (%) n (%) n (%)  

Established mechanism for identifying and 80 (22.6) 55 (21.8) 21 (23.9) 4 (28.6) 0.80 134 (18.7) 95 (22.1) 23 (19.0) 14 (9.5) 2 (11.8) 0.01 <0.0001
tracking transitioning patients with SHCN?
List of adult providers who are interested in 34 (9.6) 20 (7.9) 10 (11.4) 4 (28.6) 0.03 131 (18.3) 71 (16.5) 25 (20.7) 31 (21.1) 4 (23.5) 0.49 <0.0001
caring for teen patients with SHCN?
Written recommendations (i.e. a transition 35 (9.9) 27 (10.7) 4 (4.5) 4 (28.6) 0.01 71 (9.9) 56 (13.0) 10 (8.3) 3 (2.0) 2 (11.8) 0.002 <0.0001
policy or statement) that describes the
department’s approach to transition for teen
patients with SHCN?
  (a) Staff educated regarding the transition 17 (48.6) 12 (44.4) 2 (50.0) 3 (75.0) 0.52 41 (57.7) 29 (51.8) 7 (70.0) 3 (100) 2 (100) 0.17 0.4
policy or approach?
  (b) Transition policy shared with patients? 13 (37.1) 9 (33.3) 1 (25.0) 3 (75.0) 0.24 35 (49.3) 28 (50.0) 6 (60.0) 1 (33.3) 0 (0.0) 0.44 0.01
Process to assist your teen patients with 37 (10.5) 16 (6.3) 18 (20.5) 3 (21.4) 0.0004 NA  
medical documentation for outside programs?
Established process to welcome and orient NA 108 (15.1) 78 (18.1) 108 (15.1) 11 (7.5) 0 (0.0) 0.01 NA
young adult patients with SHCN?
Way to elicit anonymous patient feedback NA 85 (11.9) 63 (14.6) 85 (11.9) 7 (4.8) 2 (11.8) 0.02 NA
about the transition process?

SHCN: special health care needs.

a
Complete wording of survey questions provided in supplementary material. b p-value from chi-square tests comparing departments; c p-value from chi-square tests comparing pediatric and adult
providers.
5
6 Autism 00(0)

Figure 1.  Survey responses by pediatric and adult providers regarding personal approaches to the health care transition
forpatients with SHCN Kaiser Permanente Northern California. Provides resources to aid teen patients with SHCN and/
or theirfamilies in the transition. (B) Reviews legal changes with teen patients (or their caregivers) related to decision-making.
(C) Sharesconcise medical summary and emergency care plan with teen patients (or their caregivers). (D) Uses a standardized
transitionreadiness assessment tool with teen patients. (E) Plan of care for teen patients incorporates the results from the
transitionreadiness assessment. (F) Gives the plan of care to teen patients (or their caregivers). (G) Helps teen patients identify
adult careprovider(s). (H) Plans the optimal timing of transfer of care to adult providers with patients (or their caregivers). (I)
Communicatesand/or consult with the teen’s selected adult provider(s) regarding transfer of care. (J) Department of confirms
transfer ofresponsibilities to an adult provider within 3 -6 months after last pediatric visit for teen patients. (K) Allows time during
the firstvisit to “get acquainted” with a new young adult patients who has SHCN. (L) Provides young-adult friendly online resources
withinformation about your department.
a
p-value obtained from chi-square test comparing distributions between pediatric and adult providers. Categories collapsed into “Always/
sometimes” and “Rarely/never.”
Ames et al. 7
Many pediatric providers (64%) reported that they
started planning for the transition of their patients to adult
health care services at age 17 or later. Only 2% began the
process when their patients were between the ages of
12-15  years, the age recommended by the American
Academy of Pediatrics et al. (2011). About 67% of pediatric
providers always/sometimes helped their adolescent patients
with SHCN identify an adult care provider (Figure 1).
Likewise, 71% of adult care providers always/sometimes
allowed time to get acquainted with their new young adult
patients with SCHN (Figure 1) but many commented in
open responses that standard 20-min appointments were not
long enough. While some pediatric mental health providers
noted they sometimes continued to see patients into adult-
hood, pediatric medicine providers indicated that age 18
was often a hard stop for their provision of care.
Personal approaches to transition of care by
department
There were notable differences in personal transition prac-
tices by department (Table 3). Pediatric and adult provid-
ers in mental health departments were more likely than
their counterparts in medicine departments to provide
resources to patients with SHCN, to aid in the care transi-
tion, review with them the legal changes associated with
the process, and communicate with their next/last provider
regarding the transfer of care. In addition, pediatric provid-
ers in mental health departments were also more likely
than providers in pediatric medicine to plan the optimal
timing of the transition of care with their patients and to
later confirm the successful transfer of responsibilities
with the adult provider. Among adult providers, those in
mental health were more likely than providers in other
departments to allow time during the visit to get acquainted
with a new young adult patient with SHCN. Adult provid-
ers in mental health and family medicine were also more
likely than providers in adult medicine to communicate
with the youth’s last provider about the transfer of care.
Personal approaches to transition of care by
provider medical training
Among the pediatric sample, providers without MDs were
more likely than providers with MDs to always/sometimes
use several transition best practices including providing
transition resources, planning the optimal timing of the
transition, and communicating with and confirming the
transfer of care with the receiving care team (Supplementary
Table 2). Among the adult care sample, providers without
MDs were more likely than providers with MDs to always/
sometimes provide transition resources, review legal
changes, communicate with the youth’s previous care
team, and allow time in the first visit to get acquainted
with the new patient (Supplementary Table 2).
Pediatric providers’ estimates of number of
patients with ASD
Pediatric providers in primary care (n = 247) often under-
estimated the number of patients with ASD in their panels.
Fifty-seven percent of these pediatric providers reported
having between 1 and 10 patients with ASD when in real-
ity 83% had more than 10 patients in their panel (Figure 2).
Discussion
Surveys of both pediatric and adult care providers offered
key insights into the complex challenges facing adoles-
cents with ASD and other SHCN, their caregivers, and
their providers during the transition process. We found that
a large majority of pediatric and adult providers reported
that their departments did not have transition policies or
resources in place. Even when departmental policies
existed, this information was transferred to medical staff
and patients only about 50%–60% of the time. Furthermore,
most providers did not regularly provide transition
resources, review legal changes, use a standardized assess-
ment tool, or communicate with next/previous provider—
strategies endorsed by the 2002, 2011, and 2018 consensus
statements of the American Academy of Pediatrics, the
American Academy of Family Physicians, and American
College of Physicians-American Society of Internal
Medicine (2002; American Academy of Pediatrics et al.,
2011; White et al., 2018). Even when providers used an
assessment tool, few incorporated the results into a care
plan that was shared with patients and/or their families.
These systematic deficiencies were reported by both pedi-
atric and adult providers. While we noted some variation
by department type and by provider medical training, the
low frequencies of transition practices were apparent in
both primary care and mental health settings and among
providers with both MD and non-MD training.
National trends in health care transition for
youth with SHCN
As documented in our study and others, the health care
transition remains a largely uncoordinated and ambiguous
task for providers of patients with SHCN (Kuhlthau et al.,
2016; Lebrun-Harris et al., 2018; Nicolaidis et al., 2013).
Care continuity is especially important for this subset of
young people who, in addition to managing complex
chronic conditions, may also be more likely to engage in
risky behaviors than healthy peers (Davignon et al., 2018;
Sawyer et al., 2007). Furthermore, poor transition planning
has been linked to an excess of ER visits, medical tests, and
hospital stays among young adults (Brousseau et al., 2010;
Liu et al., 2017). Studies estimate that approximately 17%
of youth with SHCN in the United States receive adequate
transition services, which is comparable or slightly higher
8 Autism 00(0)

Table 3.  Survey responses regarding personal approaches to the health care transition for patients with SHCN, by provider and
department type, Kaiser Permanente Northern California.

Survey Pediatric providers Adults providers

questionsa

  Department Department

  Pediatric Mental Other p-valueb Adult Family Mental Other p-valueb

medicine health (n = 14) medicine medicine health (n = 17)
(n = 252) (n = 88) (n = 430) (n = 121) (n = 147)

  n (%) n (%) n (%) n (%) n (%) n (%) n (%)  

Provides resources to aid teen patients with SHCN and/or their families in the transition
 Always 12 (4.8) 17 (19.3) 3 (21.4) <0.0001 40 (9.3) 9 (7.4) 25 (17.0) 3 (17.6) 0.01
 Sometimes 78 (31.0) 44 (50.0) 6 (42.9) 107 (24.9) 29 (24.0) 51 (34.7) 3 (17.6)
 Rarely 91 (36.1) 19 (21.6) 3 (21.4) 103 (24.0) 32 (26.4) 30 (20.4) 6 (35.3)
 Never 71 (28.2) 8 (9.1) 2 (14.3) 180 (41.9) 51 (42.1) 41 (27.9) 5 (29.4)
Reviews legal changes with your teen patients who have SHCN(or their caregivers) related to decision-making
 Always 15 (6.0) 10 (11.4) 1 (7.1) 0.01 34 (7.9) 4 (3.3) 19 (12.9) 1 (5.9) 0.01
 Sometimes 46 (18.3) 26 (29.5) 2 (14.3) 69 (16.0) 24 (19.8) 34 (23.1) 6 (35.3)
 Rarely 67 (26.6) 29 (33.0) 5 (35.7) 103 (24.0) 30 (24.8) 27 (18.4) 4 (23.5)
 Never 124 (49.2) 23 (26.1) 6 (42.9) 224 (52.1) 63 (52.1) 67 (45.6) 6 (35.3)
Shares a concise medical summary and emergency care plan with patients with SHCN (or their caregivers)
 Always 23 (9.1) 12 (13.6) 2 (14.3) 0.43 121 (28.1) 31 (25.6) 44 (29.9) 3 (17.6) 0.67
 Sometimes 58 (23.0) 22 (25.0) 4 (28.6) 108 (25.1) 41 (33.9) 38 (25.9) 6 (35.3)
 Rarely 78 (31.0) 22 (25.0) 5 (35.7) 77 (17.9) 13 (10.7) 25 (17.0) 3 (17.6)
 Never 93 (36.9) 32 (36.4) 3 (21.4) 124 (28.8) 36 (29.8) 40 (27.2) 5 (29.4)
Uses standardized transition readiness assessment tool with teen patients who have SHCNc
 Always 6 (2.4) 1 (1.1) 0 (0.0) 0.91 37 (8.6) 9 (7.4) 18 (12.2) 1 (5.9) 0.36
 Sometimes 21 (8.3) 8 (9.1) 1 (7.1) 72 (16.7) 15 (12.4) 20 (13.6) 1 (5.9)
 Rarely 31 (12.3) 13 (14.8) 1 (7.1) 80 (18.6) 23 (19.0) 21 (14.3) 5 (29.4)
 Never 194 (77.0) 66 (75.0) 12 (85.7) 241 (56.0) 74 (61.2) 88 (59.9) 10 (58.8)
(a) Plans of care incorporates the results from the transition readiness assessment
 Always 3 (5.2) 2 (9.1) 0 (0.0) 0.59 48 (25.4) 14 (29.8) 20 (33.9) 3 (42.9) 0.35
 Sometimes 12 (20.7) 4 (18.2) 1 (50.0) 80 (42.3) 21 (44.7) 26 (44.1) 2 (28.6)
 Rarely 5 (8.6) 3 (13.6) 0 (0.0) 38 (20.1) 7 (14.9) 8 (13.6) 1 (14.3)
 Never 7 (12.1) 0 (0.0) 0 (0.0) 26 (13.8) 5 (10.6) 5 (8.5) 1 (14.3)
(b) Gives the plan of care to your teen patients with SHCN (or their caregivers)
 Always 5 (8.6) 2 (9.1) 0 (0.0) 0.59 64 (33.9) 15 (31.9) 24 (40.7) 3 (42.9) 0.42
 Sometimes 10 (17.2) 4 (18.2) 1 (50.0) 66 (34.9) 23 (48.9) 17 (28.8) 2 (28.6)
 Rarely 7 (12.1) 3 (13.6) 0 (0.0) 36 (19.0) 4 (8.5) 12 (20.3) 1 (14.3)
 Never 5 (8.6) 0 (0.0) 0 (0.0) 24 (12.7) 5 (10.6) 6 (10.2) 1 (14.3)
Helps teen patients identify adult care provider(s) NA
 Always 61 (24.2) 16 (18.2) 5 (35.7) 0.06  
 Sometimes 117 (46.4) 34 (38.6) 5 (35.7)  
 Rarely 32 (12.7) 17 (19.3) 1 (7.1)  
 Never 42 (16.7) 21 (23.9) 3 (21.4)  
Plans the optimal timing of transfer of care to adult providers with patients who have SHCN (or their caregivers) NA
 Always 40 (15.9) 29 (33.0) 3 (21.4) 0.005  
 Sometimes 93 (36.9) 34 (38.6) 7 (50.0)  
 Rarely 54 (21.4) 14 (15.9) 2 (14.3)  
 Never 65 (25.8) 11 (12.5) 2 (14.3)  
Communicates and/or consults with the teen’s next/last provider(s) regarding transfer of care
 Always 43 (17.1) 37 (42.0) 6 (42.9) 0.006 29 (6.7) 13 (10.7) 21 (14.3) 1 (5.9) <0.0001
 Sometimes 87 (34.5) 26 (29.5) 4 (28.6) 119 (27.7) 54 (44.6) 70 (47.6) 6 (35.3)
 Rarely 53 (21.0) 15 (17.0) 2 (14.3) 124 (28.8) 33 (27.3) 21 (14.3) 4 (23.5)
 Never 69 (27.4) 10 (11.4) 2 (14.3) 158 (36.7) 21 (17.4) 35 (23.8) 6 (35.3)
(Continued)
Ames et al. 9

Table 3. (Continued)

Survey Pediatric providers Adults providers

questionsa

  Department Department
b
  Pediatric Mental Other p-value Adult Family Mental Other p-valueb
medicine health (n = 14) medicine medicine health (n = 17)
(n = 252) (n = 88) (n = 430) (n = 121) (n = 147)

  n (%) n (%) n (%) n (%) n (%) n (%) n (%)  

Department confirms transfer of responsibilities to an adult provider within 3–6 months after last pediatric visit for NA
patients with SHCN
 Always 10 (4.0) 9 (10.2) 5 (35.7) <0.0001  
 Sometimes 40 (15.9) 32 (36.4) 5 (35.7)  
 Rarely 55 (21.8) 18 (20.4) 3 (21.4)  
 Never 147 (58.3) 29 (33.0) 1 (7.1)  
Allows time during the first visit to “get acquainted” NA  
with a new young adult patient who has SHCN
 Always 160 (37.2) 47 (38.8) 94 (63.9) 8 (47.1) 0.001
 Sometimes 128 (29.8) 41 (33.9) 30 (20.4) 3 (17.6)
 Rarely 52 (12.1) 10 (8.3) 9 (6.1) 2 (11.8)
 Never 90 (20.9) 23 (19.0) 14 (9.5) 4 (23.5)
Provides young-adult friendly online resources with NA  
information about your department
 Always 100 (23.3) 31 (25.6) 23 (15.6) 2 (11.8) 0.08
 Sometimes 138 (32.1) 46 (38.0) 50 (34.0) 5 (29.4)
 Rarely 76 (17.7) 17 (14.0) 26 (17.7) 5 (29.4)
 Never 116 (27.0) 27 (22.3) 48 (32.7) 5 (29.4)

SHCN: special health care needs.

a
Complete wording of survey questions provided in supplementary material. b p-value from chi-square tests comparing distributions between
departments. Categories collapsed into “Always/sometimes” and “Rarely/never.” c Survey to adult providers asked “Do you use a self-care
assessment tool (e.g. a tool that helps you learn what your patient already knows about their health, using health care services, and areas they need
to know more about) with your young adult patients with who have SHCN?”

than transition planning services provided for youth with- 100

out SHCN (14%) (Davidson et al., 2015; Lebrun-Harris 84
et al., 2018; Sharma et al., 2018). These national trends are 80
Actual percentage
consistent with our findings that at least half of pediatric 60
Percent

providers report low or irregular compliance with many Reported 43

percentage 38
recommended steps of transition planning for their patients 40
with SHCN. However, in a national survey of youth with 18
20 12
SHCN, youth with ASD were significantly less likely to 2 1 3
receive health care transition services than youth with other 0
SHCN (21.1% vs 42.5%) (Cheak-Zamora et al., 2013). As None 1-5 6-10 > 10
Number of Patients with ASD
demonstrated in the present study and an earlier survey of
KPNC’s adult providers (Zerbo et al., 2015), many pediat-
ric and adult providers markedly underestimated the num- Figure 2.  Percentage of primary care pediatric providers
reported versus actual range of the number of patients with
ber of patients in their care with diagnosed ASD, raising ASD in their panels, Kaiser Permanente Northern California.
concern that lack of awareness could contribute to the dis-
parities in transition planning assistance for youth with
ASD compared with other SHCN. adults with ASD and other SHCN, expanding on previous
literature that has primarily focused on the transition from
Transition of youth with SHCN from the the perspective of pediatric providers (Berg Kelly, 2011;
Burke et al., 2008; Davidson et al., 2015; Geenen et al.,
perspective of adult providers
2003; Kuhlthau et al., 2015; Okumura et al., 2008). In our
Our study contributes new insights to the limited literature study, both pediatric and adult providers reported similarly
on the transition practices of adult providers caring for low use of many transition best practices with some
10 Autism 00(0)
exceptions. Although there was considerable room for
improvement, adult providers were more likely than pediat-
ric providers to always/sometimes use a standardized transi-
tion readiness tool and share a concise medical summary
and care plan with transition-age patients with SHCN. A
large proportion of adult providers (43%) always made time
to get acquainted with a new patient with SHCN. These
findings complement previous research demonstrating that
adult providers recognize their discomfort and lack of train-
ing for caring with young adults with SHCN (Nehring et al.,
2015), including ASD (Zerbo et al., 2015). Thus, it is impor-
tant for the design of successful transition strategies to inte-
grate and address the attitudes, practices, and resources of
both pediatric and adult providers (Okumura et al., 2018;
Peter et al., 2009).
Transition planning starting at age 12
The common practice of delaying transition planning to
late adolescence is recognized as a major barrier to pro-
moting a successful transfer of care (Burke et al., 2008;
Davidson et al., 2015; Sparud-Lundin et al., 2017). About
75% of pediatric providers in our sample reported that
transition planning started after their patients turned 17.
Current guidelines advise that planning should start ear-
lier, ideally by age 12–14 for youth with SCHN, to facili-
tate adequate time for discussions and exchange of
resources between providers and families (White et al.,
2018). However, many doctors prefer to broach the topic
as late as 18–20 years of age for patients with and without
SHCN (Lebrun-Harris et al., 2018; Sharma et al., 2018).
While written transition policies are one approach for
operationalizing the starting age of transition planning
(Lebrun-Harris et al., 2018; Sharma et al., 2018), our study
found that even when a departmental written policy
existed, only half of the providers had received any formal
training in following it.
Communication between forwarding and
receiving care teams
Despite the resources of KPNC’s integrated health care
delivery system, we found that communication between
the pediatric and adult providers occurred inconsistently,
with few systems in place to connect families with adult
providers specializing in SHCN or to connect providers
during the transfer of medical responsibilities. Enhancing
communication between forwarding and receiving care
teams is a valuable target of transition strategies as fami-
lies oftentimes expect the provider to lead transition plan-
ning and consequently report higher satisfaction with the
process when they perceive care coordination between
their child’s providers (Geenen et al., 2003; Lebrun-Harris
et al., 2018; Levy et al., 2016). Providers have also
expressed more ease and preparedness for working with
transitioning patients after speaking to their counterpart in
either pediatric or adult care (Berg Kelly, 2011).
Nevertheless, these communication lines are not well
developed in many US health care systems (Farmer et al.,
2014; Hyman & Johnson, 2012; Rast et al., 2018).
Strategies that could enhance communication include
using a templated medical summary prepared by the pedi-
atric team and facilitating a warm handoff of the patient
between the pediatric and adult care teams.
Discussion of legal changes with transition-age
youth with SHCN
The transition of care also carries legal ramifications,
requiring frank and careful discussions between provider,
patient, and caregivers about plans for conservatorship or
supported decision-making. Caregivers report that losing
guardianship, including the ability to communicate directly
with the provider about their child’s health, is a major
source of stress during the transition and desire greater
clinical support and guidance in managing these changes
(Cheak-Zamora & Teti, 2015; Kuhlthau et al., 2016). In
our study, most pediatric and adult providers did not dis-
cuss or were not aware of these legal changes affecting
their transition-age patients with SHCN. Providers may be
asked to sign capacity assessments that facilitate a conser-
vator taking control of their patient’s health decisions.
Thus, it is important that providers understand the com-
plex human rights implications of these arrangements,
which affect many of their patients with ASD (Gerber
et al., 2017; Gotham et al., 2015), and begin discussions
with families early in transition planning (Demer, 2018).
Finding an adult provider
Two thirds of pediatric providers sometimes/always helped
their patients identify an adult provider, though less than
10% reported that their department kept a list of adult pro-
viders interested in treating young adults with SHCN. This
discrepancy may indicate that, when departmental transi-
tion resources are inadequate, pediatric providers invest
considerable personal time and energy to help. These
logistical barriers to transition planning have been noted in
other studies (Okumura et al., 2008; Scal, 2002).
Identifying an adult primary care provider can prove dif-
ficult given that many adult providers lack training in
autism (Zerbo et al., 2015) and feel that young adults with
SHCN should see a specialist for primary care (Miller
et al., 2005; Okumura et al., 2008).
Strengths and limitations
Our study has several notable strengths compared with pre-
vious studies that have been mostly small, interview-based
assessments focused on pediatric providers only (Kuhlthau
Ames et al. 11
et al., 2016; Nakhla et al., 2017; Okumura et al., 2008;
Warfield et al., 2015). First, we drew our sample from a
large, integrated health system which serves a major metro-
politan region in California. Second, by approaching both
pediatric and adult providers across several departments,
we aimed to capture attitudes and practices surrounding the
transition of youth with autism and other SHCN in a
broader cross-section of the provider population. Response
rates for pediatric and adult providers were 43% and 30%,
respectively, which is comparable with the 33% average
rate reported in online surveys (Nulty, 2008) but higher
than the participation of 6%–25% reported in similar stud-
ies of providers (Bruder et al., 2012; Golnik et al., 2009;
Khanna & Jariwala, 2012; Zerbo et al., 2015).
Nevertheless, the experience, knowledge, and prac-
tices of the participants in our survey sample may not be
representative of all providers within KPNC, other health
care systems, or other regions of the country. With a focus
on evidence-based care models, KPNC’s institutional
investment in youth transition care has increased in recent
years. Thus, these findings at KPNC may overstate the
current implementation of transition practices and trends
in other health care systems. Most of our sample worked
in primary care departments and our findings may not be
generalizable to the practices within subspecialties. We
were not able to collect information on demographic or
professional characteristics of non-respondents with
which to assess selection bias. It is possible that participa-
tion in the survey by providers who care for youth with
SHCN could have been positively influenced by their
heightened interest in the topic or negatively influenced
by their lack of time to participate given their complex
patient panels.
Conclusion
Our findings indicate that most pediatric and adult providers
do not have consistent approaches to the transition of care
for youth with SHCN and may be inadequately prepared to
handle the process for youth with ASD, a sizable and grow-
ing population in their panels. Providers reported low
awareness of departmental transition policies and infrequent
reciprocal communication between forwarding/receiving
care counterparts. Notable deficiencies included starting
transition planning late in adolescence and underutilizing
standardized assessment tools and other resources. These
findings support the urgency of training providers in the best
practices of transition care and enhancing their knowledge
about the specific needs of transitioning patients with ASD.
Health care continuity, rooted in complementary policies in
both pediatric and adult departments, is particularly impor-
tant to helping individuals with ASD manage complex co-
occurring conditions that start in childhood and evolve with
age. As the population of transition-age youth with ASD
continues to grow, more work is needed to understand how
to best implement transition policies that promote early and
clear communication between providers and families and
track outcomes among transitioning patients.
Declaration of conflicting interests
The author(s) declared no potential conflicts of interest with
respect to the research, authorship, and/or publication of this
article.
Funding
The author(s) disclosed receipt of the following financial support
for the research, authorship, and/or publication of this article:
Funded by Autism Speaks and the Working for Inclusive and
Transformative Healthcare (WITH) Foundation.
ORCID iD
Jennifer L Ames https://orcid.org/0000-0003-0906-9162
Supplemental material
Supplemental material for this article is available online.
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