O2046: "Keep Your Eyes on the Long Game”: Advice from Pediatric Palliative Care Program Leaders on Outpatient Development

Background: As the field of pediatric palliative care (PPC) expands, development of outpatient PPC services is increasingly recognized as a growing need. Presently, guidance on building sustainable and resilient outpatient programs is lacking.

Methods: As part of a larger study on outpatient PPC services (OPPCS), 48 free-standing children’s hospitals with inpatient PPC programs identified by the 2019 State by State Report Card on Access to Palliative Care in Our Nation’s Hospitals were invited to complete an internet-based survey describing their PPC program. Respondents who participated in their program’s outpatient development were asked permission to be contacted for a free-text follow-up survey describing their experience. Quantitative data were analyzed with descriptive statistics. Qualitative data were inductively coded by two coders to identify emerging themes.

Results: Thirty-six of 48 hospitals completed the initial survey (36/48, 75%), and 28 reported practicing outpatient PPC (28/36, 78%). Twenty-two of 28 participants (79%) were involved in outpatient programmatic development and responded to historical development questions within the initial OPPCS survey.
Half of participants (11/22, 50%) reported that their clinic originated in one or more subspecialty clinic(s). Hematology/Oncology was the most reported site of initiation (9/11, 82%), followed by General Pediatrics/Complex Chronic Care (4/11, 36%). Half of participants (11/22, 50%) reported intentional stepwise growth of their outpatient program to mitigate risk of burnout. Some programs created intentional boundaries on volume control by restricting the clinic schedule (7/11, 64%), while others restricted referrals to a specific sub-specialty patient population (3/11, 27%). No programs required hospice eligibility or specific goals of care as referral criteria.
More than half (12/22, 55%) believed programs should have a minimum billing full-time equivalent (FTE) ≥3 (12/22, 55%) before growing outpatient and a minimum billing FTE ≥4 (14/22, 64%) before offering 24/7 coverage to provide high quality and sustainable PPC services. Several respondents (9/22, 41%) noted that FTE should be considered in the context of hospital size and patient volume.
Thirteen of 22 (59%) respondents self-identified as willing to participate in the follow up survey, and 46% (6/13) shared more about their development experiences. Participants offered advice across four main themes: Scheduling, Program Logistics, Staffing, and Workflow Efficiency (Table 1). Many programs continue to explore possible metrics to demonstrate programmatic success, and participants identified patient satisfaction, symptom screening tools, and readmission rates as promising outcome measures for future exploration.

Conclusion: PPC clinicians with experience in outpatient PPC programmatic development offer salient advice for PPC programs looking to expand into the outpatient setting. Future work is needed to help PPC programs leverage these findings for their own on-site advocacy to grow outpatient PPC programs.