TOP 13 - Putting Power in Their Hands: The Personalized Bleeding Plan

Publication Number: 3741.TOP 13

Art T. Kulatti, Rady Children's Hospital San Diego, San Diego, CA, United States; Kelly A. Bush, Rady Children's Hospital San Diego, San Diego, CA, United States; Paula Aristizabal, University of California San Diego, San Diego, CA, United States; Hilda Ding, https://www.rchsd.org/programs-services/cancer-blood-disorders/services/hemophilia-treatment/, San Diego, CA, United States; Eric Won, University of California, San Diego, San Diego, CA, United States

Background: A major goal for the transition from pediatric to adult care for children with hemophilia and other bleeding disorders is to gain knowledge and achieve independence in managing their underlying condition. Building on our prior successful quality improvement (QI) experience with Pain Action Plans for children with sickle cell disease, we created a "Personalized Bleeding Plan" (PBP) for the Hemophilia/Bleeding Disorder Comprehensive Clinic (CC) to empower patients and caregivers to address bleeding at home and enhance independent knowledge of bleed management prior to transitioning to adult care.

Objective: Global

Aim: Improve management and quality of life in patients with bleeding disorders.

Smart

Aim: From Feb 10-Nov 1, 2025, the percentage of patients with bleeding disorders seen for their annual CC visit who are provided with a PBP will increase from a baseline of 0% to 50%.

Design/Methods: Our study was granted a QI exemption by our institution's institutional review board.
We formed an interprofessional QI team: pediatric hematologists/fellows, case managers, nurse practitioners, and Epic builders. Our team met with CC staff and discussed barriers/facilitators to PBP implementation during CC visits, which informed our QI tools (process map, key driver/Ishikawa diagrams) used to design our PDSA cycles. We created a new SmartBlock in Epic adapted from the Pain Action Plan that was incorporated into the note template for CC visits. Once filled out, the PBP is used to create a colored letter that is sent to patients in MyChart. The PBP includes green, yellow, and red zones to indicate different levels of bleed management. We surveyed caregivers 2-4 months post-CC visit and queried their familiarity with the PBP for managing bleeds at home. We surveyed CC staff after PDSA 1 (2/10-4/30/25) to assess their attitudes towards this intervention. PDSA Cycles 2 (5/1-7/31/25) & 3 (8/1-10/31/25) focused on detailed review of the PBP with caregivers to improve familiarity. Next steps include continued analyses of outcome measures across PDSA cycles using run charts. We will assess caregiver/patient utilization of the PBP and whether it is helpful in preparing children with bleeding disorders and their caregivers for transition to adult care.

Primary outcome measure: percentage of patients who received a PBP at their CC visit.

Secondary outcome measure: caregiver familiarity with PBP.

Balancing measures: providers' perceived burden in incorporating the PBP into their workflow and perceived benefit of PBPs to patients.

Barriers to the Success of a Personalized Bleeding Plan.
Ishikawa diagram of factors that may influence the successful implementation of a Personalized Bleeding Plan to the Hemophilia/Bleeding Disorder Comprehensive Clinic.

Example of Personalized Bleeding Plan in MyChart.
The PBP includes green, yellow, and red zones to indicate various levels of bleed management depending on severity or degree of injury.

Run Chart of Percentage of Comp Clinic Visits with PBP's Sent to Patient/Caregiver.
Data from PDSA cycles 1-3 with highlighted interventions. The telephone icons indicate when caregivers were surveyed about their familiarity with the PBP.