This study examined the healthcare system supports for internists caring for young adult patients with chronic illnesses that began in pediatric care. Semi-structured interviews were conducted with 21 internists across 4 states. The interviews identified 5 major themes of healthcare system burdens experienced by internists, including difficulty identifying patients' medical teams, inadequate time for complex patients, significant administrative burden, lack of social/case management support, and financial constraints. The interviews also identified 3 potential strategies to improve supports, such as formalizing transfer processes, maximizing electronic records/communication, and leveraging patient-centered medical homes and bundled payments.

1. Healthcare system supports for internists caring for young adult
patients with pediatric onset chronic illness: a qualitative study.
Dava E. Szalda, MD1, Sophia Jan, MD, MSHP1,2,3,4, Manuel E Jimenez, MD, MSHP1,3,4, Jeremiah E
Long2, Amelia Ni2, Judy A Shea, PhD2,3
1Department of Pediatrics, 2Department of Medicine, 3Leonard Davis Institute of Health Economics, 4CHOP PolicyLab, Perelman School
of Medicine of the University of Pennsylvania
 We conducted semi-structured interviews with
a convenience sample of internal medicine
physicians
 We sampled participants based on known or
reported experience with young adults with
pediatric onset chronic illness using snowball
strategy
 We recorded, transcribed, and coded interviews
until thematic saturation
 We identified themes using modified grounded
theory
Methods
Results
 Internists who see many adult patients with
childhood-onset chronic illnesses continue to
experience significant barriers and disincentives to
assume care for medically complex adult patients
transitioning from pediatric care, which may partly
explain why adult providers are unable or unwilling to
assume their care.
 We will need to study the impact of expansion of
medical homes, bundled payments, and health
information technology on care access for this
population.
Conclusions and Policy Implications
 Over 90% of pediatric patients with special
healthcare needs are living into adulthood
necessitating internists to care for a new
variety of diagnosis and disease processes.
 Young adults with pediatric onset chronic
illness have significant difficulties identifying
adult clinicians willing to assume their care.
Background
1. Examine current practices in the care of
adolescents and young adults with special
healthcare needs by internists
2. Identify barriers and potential interventions
to improve care
Objectives
Table 1: Major themes within perceived healthcare system burdens or needed supports by internists
caring for young adults with pediatric onset chronic illness
Theme and example response
Difficulty identifying patient’s medical team and appropriate site of care
“I feel like across the board these… complex patients have some providers still at [the children’s hospital] and
other specialists have been transitions and I’m, of course, on the adult side trying to figure out what the acute
illness is and then figuring out, ok, which of their specialists is where, and [then] making a call.”
Inadequate time to address complexity of patients needs
“In primary care I don’t have that luxury, so everyone gets booked 30 minutes for new patient appointments
regardless of whatever they are told….I just have to be creative with my time management to make sure I get
them what the patient needs and give them proper time and then just run behind.”
Significant administrative burden
“It just takes a lot more of everything, the time for, you know, lots of phone calls, a lot of prior authorizations
required for medicines, I have letters of medical necessities at least once a month for nursing, the equipment
for home, things like that, and each visit, usually there’s a form that has to be filled out for their school or their
program which adds to the documentation thing so they really do require a higher level of consistency for their
care.
Inadequate social work and case management to help navigate needed community supports and services
“I think part of the challenge is making sure that they’re connected into service agencies that they might
need.”
Financial constraints and billing
“That’s sort of why I’m never gonna leave academic medicine....I don’t know how any practice could stay
afloat if they saw even more than like, I don’t know, three percent, five percent of their patients that are so
high risk, so complex.”
 Twenty-one practicing physicians in 4 different states (PA, NJ, DE, DC) in both academic and private
practices were interviewed.
 Five major themes were identified as perceived healthcare system burdens or needed supports (Table 1)
 Three additional themes were identified as potential strategies to improve healthcare system supports
(Table 2)
Table 2: Major themes within strategies to improve
healthcare system supports
Themes
Setting policies to formalize processes around new patient
transfers
“Getting everybody to agree when this young person who is
going to leave an institution, and what is the understanding
when they come to the institution”
Maximizing efficiency and proficiency with electronic
medical records and electronic communication
“Electronic medical records make things easier...there’s
ways of using it so it is clear for your nighttime/ weekend
colleague [of] what’s going on, who is this person, what’s
supposed to happen if A, B or C goes wrong”
Leveraging the patient-centered medical home and
bundling payments
“I think we should do what is being done in the medical
home....if you do readiness assessments, if you have
policies–if you do these things, then you get higher
reimbursement, because all of these things take time.”