Older adults are living longer with acute myeloid leukemia (AML) due to therapeutic advances such as a treatment regimen of hypomethylating agents and venetoclax (HMA + VEN). Greater survival and remission rates, however, mean a longer-term need for caregivers, which puts an additional burden on caregivers, who are especially vulnerable to psychosocial distress.

A team of researchers interviewed caregivers of older patients with AML undergoing their first cycle of HMA + VEN to learn more about their experiences. Their findings were published in Supportive Care in Cancer.

The researchers recruited 14 caregivers, of whom 10 were spouses and 4 were adult children of the patients they were caring for, as part of a control group for the ongoing Palliative and Supportive Care Intervention (PACT; ClinicalTrials.gov Identifier: NCT04570709) study and conducted semistructured interviews.


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Two questions were asked: “What do you wish you had known about [care recipient’s name]’s acute leukemia?” and “What else might have been helpful to you during the [hospitalization/clinic visit]?” Probing questions were asked to further explore the caregivers’ experiences.

The caregivers’ responses identified 5 major themes:

  • Impact of an AML diagnosis in older adulthood
  • Expected and unexpected patient condition changes
  • Perspectives of caregiving roles and tasks
  • Facilitators and barriers to caregiving
  • Support systems

Early intervention is needed surrounding the initiation of HMA + VEN therapy in terms of information about AML disease characteristics and therapy (eg, what to expect during treatment, expected duration of care), as well as support for managing distress and caregiving burden, the researchers noted.

Older patients with AML may have additional needs that younger patients might not have, which can add to the tasks a caregiver of these patients must manage. For example, older patients may be at higher risk of frailty and have mobility issues. They may also be more susceptible to infectious diseases. “Therefore, caregivers of older adults with AML may require additional training on managing fatigue and mobility issues at home than caregivers of younger adults with AML,” the researchers wrote.

Although advances in AML treatment may increase a person’s life, they may also increase the caregiving-related burden.

“Supportive care interventions should be tailored to the individual caregiver within their context (eg, a spouse vs an adult child). Particular attention should be given to caregiver populations at higher risk for negative effects of caregiving (eg, caregivers who are also older adults) and additional rehabilitative services for older adults with cancer aimed at maintaining or improving quality of life and decreasing caregiver burden,” the researchers wrote.

The study was limited in its generalizability by its qualitative study design and small sample. Additionally, all of the participants were recruited from 1 institution, and with 13 of 14 participants being white, it lacked diversity. Many of the participants did not agree to leave their care recipients during the interviews. “Despite the limitation, the majority of participants openly discussed their emotions and experiences even with the care recipient present,” the researchers added.

Disclosures: Some authors declared affiliations with biotech, pharmaceutical, and/or device companies. Please see the original reference for a full list of disclosures.

Reference

Tan KR, Chan YN, Iadonisi K, et al. Perspectives of caregivers of older adults with acute myeloid leukemia during initial hypomethylating agents and venetoclax chemotherapy. Support Care Cancer. Published online January 4, 2023. doi:10.1007/s00520-022-07565-7