Empowering Pediatric Palliative Homecare Patients and Caregivers with Symptom Management Plans

Title

Empowering Pediatric Palliative Homecare Patients and Caregivers with Symptom Management Plans

Creator

Larrow A; Doshi A; Fisher E; Patel A; Marc-Aurele K; Rhee KE; Beauchamp-Walters J

Publisher

Journal of Pain and Symptom Management

Date

2022

Subject

Electronic health record; Home care; Pediatric palliative care; Quality improvement; Symptom management

Description

Pediatric palliative home-based care has been shown to improve symptoms, quality of life, and coordination of care. Despite these successes, hospital utilization in our own palliative home-based care population remained high as some caregivers lacked confidence to manage symptoms at home and had difficulty in recalling or accessing "sick care plans." Our team developed the Symptom Management Plan (SMP), a multi-system "sick care plan," as a quality improvement project with the aim of improving caregiver confidence to manage symptoms at home. An Electronic Health Record-based SMP template was created for common symptoms: respiratory distress, seizures, feeding intolerance, and constipation with core subspecialists' input. Individualized SMPs were created and reviewed with caregivers at every subsequent palliative home nursing visit. Caregivers were surveyed on their confidence 3 and 6-months post-implementation. Resource utilization was analyzed throughout implementation. At 6 months, 73% of caregivers reported "better" or "much better" confidence in managing their child's symptoms after using the SMP, and 76% of caregivers perceived the SMP prevented urgent care or emergency department (ED) visits. After the SMP was launched, the rate of ED visits decreased from 0.86 to 0.47 per 100 patient-days, and admissions decreased from 0.56 to 0.39 per 100 patient-days. These rates further decreased to 0.31 ED visits and 0.19 admissions per 100 patient-days within 4 and 6 months. Introducing the SMP for our home-based palliative care patients was associated with improved caregiver confidence in managing acute symptoms at home and a reduction in hospital utilization.

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

October 2022 List

Collection

Citation

Larrow A; Doshi A; Fisher E; Patel A; Marc-Aurele K; Rhee KE; Beauchamp-Walters J, “Empowering Pediatric Palliative Homecare Patients and Caregivers with Symptom Management Plans,” Pediatric Palliative Care Library, accessed May 28, 2024, https://pedpalascnetlibrary.omeka.net/items/show/18393.