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Healthcare system supports for internists caring for young adultpatients with pediatric onset chronic illness: a qualitati...
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Healthcare System Supports for Internists Caring for Young Adult Patients with Pediatric Onset Chronic Illness: A Qualitative Study 4_24_13 Sophia Jan


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Healthcare System Supports for Internists Caring for Young Adult Patients with Pediatric Onset Chronic Illness: A Qualitative Study 4_24_13 Sophia Jan

  1. 1. Healthcare system supports for internists caring for young adultpatients 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 ELong2, Amelia Ni2, Judy A Shea, PhD2,31Department of Pediatrics, 2Department of Medicine, 3Leonard Davis Institute of Health Economics, 4CHOP PolicyLab, Perelman Schoolof Medicine of the University of Pennsylvania We conducted semi-structured interviews witha convenience sample of internal medicinephysicians We sampled participants based on known orreported experience with young adults withpediatric onset chronic illness using snowballstrategy We recorded, transcribed, and coded interviewsuntil thematic saturation We identified themes using modified groundedtheoryMethodsResults Internists who see many adult patients withchildhood-onset chronic illnesses continue toexperience significant barriers and disincentives toassume care for medically complex adult patientstransitioning from pediatric care, which may partlyexplain why adult providers are unable or unwilling toassume their care. We will need to study the impact of expansion ofmedical homes, bundled payments, and healthinformation technology on care access for thispopulation.Conclusions and Policy Implications Over 90% of pediatric patients with specialhealthcare needs are living into adulthoodnecessitating internists to care for a newvariety of diagnosis and disease processes. Young adults with pediatric onset chronicillness have significant difficulties identifyingadult clinicians willing to assume their care.Background1. Examine current practices in the care ofadolescents and young adults with specialhealthcare needs by internists2. Identify barriers and potential interventionsto improve careObjectivesTable 1: Major themes within perceived healthcare system burdens or needed supports by internistscaring for young adults with pediatric onset chronic illnessTheme and example responseDifficulty 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] andother specialists have been transitions and I’m, of course, on the adult side trying to figure out what the acuteillness 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 appointmentsregardless of whatever they are told….I just have to be creative with my time management to make sure I getthem 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 authorizationsrequired for medicines, I have letters of medical necessities at least once a month for nursing, the equipmentfor home, things like that, and each visit, usually there’s a form that has to be filled out for their school or theirprogram which adds to the documentation thing so they really do require a higher level of consistency for theircare.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 mightneed.”Financial constraints and billing“That’s sort of why I’m never gonna leave academic medicine....I don’t know how any practice could stayafloat if they saw even more than like, I don’t know, three percent, five percent of their patients that are sohigh risk, so complex.” Twenty-one practicing physicians in 4 different states (PA, NJ, DE, DC) in both academic and privatepractices 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 improvehealthcare system supportsThemesSetting policies to formalize processes around new patienttransfers“Getting everybody to agree when this young person who isgoing to leave an institution, and what is the understandingwhen they come to the institution”Maximizing efficiency and proficiency with electronicmedical records and electronic communication“Electronic medical records make things easier...there’sways of using it so it is clear for your nighttime/ weekendcolleague [of] what’s going on, who is this person, what’ssupposed to happen if A, B or C goes wrong”Leveraging the patient-centered medical home andbundling payments“I think we should do what is being done in the medicalhome....if you do readiness assessments, if you havepolicies–if you do these things, then you get higherreimbursement, because all of these things take time.”