Development of Specialty-Based Pediatric Palliative Care Clinics

Title

Development of Specialty-Based Pediatric Palliative Care Clinics

Creator

Jersak T; Steinfeldt L; Velasquez AL; Ellis KL; Gunya EK; Brooks JV; Sinclair C

Publisher

Journal of Pain and Symptom Management

Date

2024

Subject

child; diagnosis; adult; human; palliative therapy; needs assessment; young adult; Kansas; congenital heart disease; medical specialist; patient referral; adolescent; therapy; conference abstract; pediatric hospital; telehealth; neuromuscular disease; clinician; pharmaceutics

Description

Outcomes: 1. Utilizing a case-based approach, participants will be able to identify three different models to develop pediatric palliative care clinics. 2. Utilizing the examples and framework from this presentation, participants will be able to start and grow pediatric palliative care clinics at their own institutions. Key Message: Pediatric palliative care is primarily delivered in home-based and inpatient settings, leaving a gap in outpatient pediatric PC models. Outpatient adult PC is rapidly growing, but there are unique aspects to growing pediatric clinics. This presentation highlights the development and growth of pediatric PC clinics within specialty clinics for children with medical complexity, neuromuscular disorders, and adult congenital heart disease. Palliative care clinics are a key area for growth for pediatric palliative care in the next decade. The growth of pediatric palliative care has primarily been in home-based and inpatient settings. Home-based and inpatient teams rarely have a specialty focus and usually take referrals from many different specialties. Because of the limitations of clinic space, new strategies and models need to be developed for palliative care clinicians to access patients in the clinic setting. At the University of Kansas Health System, we have developed three different specialty-focused pediatric palliative care clinics in conjunction with our specialist partners working with children with medical complexity, adolescents and young adults with neuromuscular disorders, and adult congenital heart disease. Using a formal needs-based assessment, the team was able to identify the population most likely to benefit, match the population to our staff in clinic, develop referral processes, and create collaborative relationships with the specialty care teams to ensure good communication in the outpatient setting. Because of limited physical space to begin new clinics, these new palliative care clinics made use of telehealth and co-located clinics to best serve the community. When barriers to referral were discovered, the needs assessment document served as a foundation in which to return and refocus the collaborative efforts. Keywords: Models of Palliative Care Delivery / Disease specific managementCopyright © 2024

Rights

Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).

Citation List Month

June List 2024

Collection

Citation

Jersak T; Steinfeldt L; Velasquez AL; Ellis KL; Gunya EK; Brooks JV; Sinclair C, “Development of Specialty-Based Pediatric Palliative Care Clinics,” Pediatric Palliative Care Library, accessed February 8, 2025, https://pedpalascnetlibrary.omeka.net/items/show/19619.