Access to care for blood cancer: Allogeneic hematopoietic cell transplant caregiver requirements.

Abstract

e13515 Background: Caregiver requirements can be a major barrier to treatment access for many patients with cancer, especially those patients with blood cancer when alloHCT is a potential cure. This can be illustrated with allogeneic hematopoietic cell transplant (alloHCT). Patients are generally required to have a caregiver to proceed with alloHCT, often for at least 100 days. However, as different family and social structures evolve, the availability of a caregiver may lead to more access barriers. The aim of this study was to learn more about caregiver requirements and perspectives on those requirements from social workers, patients, and caregivers. Methods: We conducted interviews and focus groups from May 2022-February 2023 with 50 stakeholders, including social workers (n = 22), patients (n = 12), and caregivers (n = 16) in the United States (U.S.). Focus groups and interviews were recorded and transcribed for analysis by two independent reviewers. Results: All 22 social workers said their transplant center (TC) required a patient to have a caregiver to proceed to HCT; though requirements varied from 60 to 100 days post-HCT. One participant noted, “ I do have worries that patients aren't being referred who don't have caregivers and we just don't know about them and they're falling through the cracks.” Most patients and caregivers said their TC required a caregiver to proceed to alloHCT, but the length of time varied (from no requirement up to 180 days post-HCT). All patients who participated had a caregiver. Patients and caregivers had differing perspectives on the requirements, with some saying it was too short and they needed more time, and others saying it was too long and they could have used less time. Many said the amount of time a caregiver was needed depended on the patient’s recovery. All participants identified several solutions to help patients who did not have a caregiver; including a volunteer caregiver registry, having the patient stay in the hospital, using technology solutions (e.g., telehealth visits), changing/removing the requirements, having a shared caregiver in a community setting, having funding available for patients and caregivers, and/or home visits and checks. Conclusions: Patients with cancer face many barriers to treatment; for alloHCT and many other treatments, the need to have a caregiver is one of those barriers. This study found variation across TCs, suggesting a lack of evidence informing the requirements. These requirements can also lead to equity issues. This study was limited to patients who received an alloHCT; further research is needed to learn about the perspectives of patients who are unable to receive an alloHCT due to not having a caregiver available.