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Toolkit guides care for children with Acute Myeloid Leukemia (AML) so they can recover at home
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By Atyia Collins and Alix E. Seif, MD, MPH

Finding Optimal Recovery Strategies

Pediatric patients with Acute Myeloid Leukemia (AML), a rare cancer that affects bone marrow and blood, receive multiple courses of intensive chemotherapy treatment, which can induce severe neutropenia and mucositis. Symptoms can include pain, nausea, vomiting, and diarrhea, and due to the risk of life-threatening infections, inpatient care is currently recommended for children with AML experiencing severe neutropenia, recommendations which have remained in place for over 20 years.

“The long-standing presence of these recommendations by the Children’s Oncology Group has led to pervasive and fixed beliefs that mandatory admission for the duration of severe neutropenia is optimal care. Even if outpatient observation were acceptable to clinicians, routine implementation of outpatient observation faces substantial logistical hurdles. To address these challenges, we developed the AML Care at Home outpatient management toolkit and implementation strategies to facilitate toolkit use,” said Alix E. Seif, MD, MPH, Clinical Futures Core Faculty member and lead investigator on the study.

Personalizing the care setting for pediatric patients with AML can have profound impacts on their treatment experience and outcomes. This toolkit allows patients, caregivers, and clinicians to choose a care setting collaboratively that balances clinical status, practical factors, and patient/caregiver preferences.  

The research study team, which includes Clinical Futures experts, Alix E. Seif, MD, MPH, Lisa A. Schwartz, PhD, Caitlin Elgarten, MD, MSCE, Regina Myers, MD, Brian T. Fisher, DO, MSCE, MPH, Kelly D. Getz, PhD, MPH, and Richard Aplenc, MD, PhD, MSCE, now present findings from "AML Care at Home: An Evidence-Based Toolkit to Personalize the Care Setting for Recovery From Pediatric AML Chemotherapy." The team developed and implemented an AML care-at-home toolkit that can identify and guide support for patients eligible for early patient discharge.  

This work builds on a past study released 2021, which found that selected patients discharged before neutrophil recovery have similar chemotherapy course-specific bacteremia and mortality rates to those who remain hospitalized. That study, titled ‘Medical Outcomes, Quality of Life, and Family Perceptions for Outpatient vs Inpatient Neutropenia Management After Chemotherapy for Pediatric Acute Myeloid Leukemia’,’ included experts Kelly D. Getz, PhD, MPH, Julia E. Szymczak, PhD, Brian T. Fisher, DO, MSCE, MPH, and Richard Aplenc, MD, PhD, MSCE.

The Toolkit
The AML Care at Home toolkit includes a discharge eligibility assessment tool and outpatient management guidelines for pediatric patients with AML. The core components of the toolkit include;

  • Outpatient Neutropenia Care: Personalized Approach to Treatment at Home (ONC-PATH) tool. The ONC-PATH tool is comprised of an overview summary, a center-level assessment worksheet to be used at the time of implementation of AML Care at Home at a center, three patient-level worksheets to be used at each course of chemotherapy to assess clinical and logistical criteria for discharge eligibility, data sources supporting each criterion, and a table summarizing publications serving as the evidence for the recommendations in the tool.
  • AML Care at Home Manual of Operations (MOP). The AML Care at Home MOP is a document outlining in detail eligibility and center-specific procedures to guide the use of the ONC-PATH tool and the management of patients recovering as outpatients.
  • Supportive implementation tools that guide and facilitate the implementation of AML Care at Home.

The AML toolkit was evaluated during a single-institution pilot implementation at CHOP between November 15, 2022, and May 31, 2024. The cohort identified as eligible for toolkit use included 48 chemotherapy courses among 22 patients. The results of the AML Care at Home toolkit are as follows:

  • Toolkit used as intended and led to early discharge in 21 courses (11 patients)
  • Toolkit used as intended and led to inpatient-only care in 11 courses (9 patients)
  • Toolkit not used as intended in 16 courses (9 patients)

Median total inpatient days were markedly fewer for toolkit-guided early-discharge courses, with patients only spending a median of 8 days in the hospital per course; 18-23 days less than patients hospitalized through neutropenia recovery. Readmissions occurred in one-third of courses with toolkit-guided early discharge. The total inpatient days per course and readmission rates were much lower than in prior reports of non-toolkit-guided early discharge, in which patients spent a median of 7-9 days at home and more than 80% were readmitted. The proportions of ICU-level events were similar among toolkit-guided early discharge (9.5%) and inpatient-only courses (9.1%) and higher among courses without intended toolkit use (14.3%). There was one death in the cohort, occurring in a course without toolkit use. The proportions of courses with bloodstream infections were higher among toolkit-guided early discharge courses (19.1%) than among toolkit-guided inpatient-only courses (0%) and courses without intended toolkit use (12.5%), and infection rates were lower in all groups than in prior reports.

Personalizing Care

The results of this pilot implementation study showed that an evidence-based toolkit can be used to identify patients who are discharge-eligible and guide their management in the outpatient setting, with no impact on clinical safety. During implementation, inpatient stay was decreased for patients whose care was guided by the toolkit, allowing them to recover at home or other outpatient settings. This represents an innovation in personalizing the care setting for pediatric patients with AML.  

“This toolkit can help decrease inpatient days by identifying and supporting patients appropriate patients for early hospital discharge and safe outpatient monitoring,” Richard Aplenc, study co-author, said.

Personalized settings consider not just the medical, but also the social, educational, and logistical needs of pediatric patients and their caregivers, leading to more comprehensive care. As pressure increases to shorten hospitalizations, these results have important implications for determining discharge practices in pediatric AML.  

Further plans for this toolkit include the development of a multisite hybrid implementation-effectiveness study of AML Care at Home and conducting a mixed methods study to assess expected disparities by social determinants of health with quantitative measures of the burdens of each care setting and purposive sampling of patients and caregivers who indicate difficulty with managing care at home or have borderline eligibility to contextualize outcomes and identify addressable barriers qualitatively. “The long-term goal is to establish an evidence-based framework to personalize care and provide patients and caregivers with more choices for where to recover safely from chemotherapy,” Dr. Seif said.

Funding for this work was provided by a CHOP Clinical Futures Healthcare Delivery Science Research Grant (AES). 

Seif AE, McDonough SL, Becker-Haimes EM, Oranges KE, Clerico D, Hartman J, Rodock K, Schwartz LA, Elgarten CW, Myers RM, Puszczynski RO, Rheingold SR, Stern JW, Jubelirer TF, Armideo EA, Evageliou NF, Randall RJ, Bernt KM, Reilly AF, Tasian SK, Diamant RK, Fisher BT, Getz KD, Aplenc R. AML Care at Home: An Evidence-Based Toolkit to Personalize the Care Setting for Recovery From Pediatric AML Chemotherapy. JCO Oncol Pract. 2025 Sep 19:OP2500314. doi: 10.1200/OP-25-00314. Epub ahead of print. PMID: 40971769