Perspectives of caregivers of older adults with acute myeloid leukemia during initial hypomethylating agents and venetoclax chemotherapy

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Abstract

Background

Older adults with AML commonly receive a hypomethylating agent (HMA) as first-line therapy. The addition of venetoclax (VEN) to HMAs has been shown to improve remission rates and overall survival. The use of combination therapy (HMA + VEN) requires frequent follow-up, results in longer infusion times, and likely increases caregiver responsibility at home. We describe experiences of informal caregivers (family/friends) providing care to older adults with AML receiving HMA + VEN.

Methods

Fourteen caregivers of older adults with AML receiving HMA + VEN (September 2020 to September 2021) were recruited as part of a control group of an ongoing NIH-funded clinical trial. Semi-structured interviews were conducted to gain initial insight into caregiver experiences at the start of HMA + VEN treatment. Two researchers analyzed the data using thematic content analysis. Data saturation occurred when no new themes were found in subsequent interviews, but all interviews were coded and synthesized.

Results

Of the 14 caregivers interviewed, the majority were spouses ( n = 10), female ( n = 13), and aged 45 to 83 (median age 65). We identified five themes: (1) the impact of an AML diagnosis in older adulthood, (2) care recipient condition changes, (3) perspectives of caregiving roles and tasks, (4) factors influencing caregiving experiences, and (5) support system roles.

Conclusions and implications

Caregivers for older adults with AML report a range of experiences navigating health systems, caregiving responsibilities, and resource needs. The risk for caregiver burden and unmet needs should be addressed to improve caregivers' abilities to provide care.

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Most cited references 20

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Using thematic analysis in psychology

Virginia Braun, Victoria Clarke (2015)

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Venetoclax combined with decitabine or azacitidine in treatment-naive, elderly patients with acute myeloid leukemia

Courtney D DiNardo, Keith W. Pratz, Vinod Pullarkat … (2018)

Older patients with acute myeloid leukemia (AML) respond poorly to standard induction therapy. B-cell lymphoma 2 (BCL-2) overexpression is implicated in survival of AML cells and treatment resistance. We report safety and efficacy of venetoclax with decitabine or azacitidine from a large, multicenter, phase 1b dose-escalation and expansion study. Patients (N = 145) were at least 65 years old with treatment-naive AML and were ineligible for intensive chemotherapy. During dose escalation, oral venetoclax was administered at 400, 800, or 1200 mg daily in combination with either decitabine (20 mg/m2, days 1-5, intravenously [IV]) or azacitidine (75 mg/m2, days 1-7, IV or subcutaneously). In the expansion, 400 or 800 mg venetoclax with either hypomethylating agent (HMA) was given. Median age was 74 years, with poor-risk cytogenetics in 49% of patients. Common adverse events (>30%) included nausea, diarrhea, constipation, febrile neutropenia, fatigue, hypokalemia, decreased appetite, and decreased white blood cell count. No tumor lysis syndrome was observed. With a median time on study of 8.9 months, 67% of patients (all doses) achieved complete remission (CR) + CR with incomplete count recovery (CRi), with a CR + CRi rate of 73% in the venetoclax 400 mg + HMA cohort. Patients with poor-risk cytogenetics and those at least 75 years old had CR + CRi rates of 60% and 65%, respectively. The median duration of CR + CRi (all patients) was 11.3 months, and median overall survival (mOS) was 17.5 months; mOS has not been reached for the 400-mg venetoclax cohort. The novel combination of venetoclax with decitabine or azacitidine was effective and well tolerated in elderly patients with AML (This trial was registered at www.clinicaltrials.gov as #NCT02203773).

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Quality of Life of Caregivers of Older Patients with Advanced Cancer

Lee Kehoe, Huiwen Xu, Paul Duberstein … (2019)

To evaluate the relationships between aging-related domains captured by geriatric assessment (GA) for older patients with advanced cancer and caregivers’ emotional health and quality of life (QoL). In this analysis of baseline data from a nationwide investigation of older patients and their caregivers, patients completed a GA that included validated tests to evaluate eight domains of health (e.g., function, cognition). Enrolled patients were aged 70+, had ≥1 GA domain impaired, and had an incurable solid tumor malignancy or lymphoma; each could choose one caregiver to enroll. Caregivers completed the Generalized Anxiety Disorder-7, Distress Thermometer, Patient Health Questionnaire-2 (depression), and Short Form Health Survey-12 (SF-12 for QoL). Separate multivariate linear or logistic regression models were used to examine the association of the number and type of patient GA impairments with caregiver outcomes, controlling for patient and caregiver covariates. In total, 541 patients were enrolled, 414 with a caregiver. Almost half (43.5%) of caregivers screened positive for distress, 24.4% for anxiety, and 18.9% for depression. Higher numbers of patient GA domain impairments were associated with caregiver depression [Adjusted Odds Ratio (AOR)=1.29, p <0.001], caregiver physical health on SF-12 (regression coefficient (β)=−1.24, p <0.001), and overall caregiver QoL (β=−1.14, p <0.01). Impaired patient function was associated with lower caregiver QoL (β=−4.11, p <0.001). Impaired patient nutrition was associated with caregiver depression (AOR=2.08, p<0.01). Lower caregiver age, caregiver comorbidity, and patient distress were also associated with worse caregiver outcomes. Patient GA impairments were associated with poorer emotional health and lower QoL of caregivers.

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Author and article information

Contributors

Kelly R. Tan: krtan@email.unc.edu

Journal

Journal ID (nlm-ta): Support Care Cancer

Journal ID (iso-abbrev): Support Care Cancer

Title: Supportive Care in Cancer

Publisher: Springer Berlin Heidelberg (Berlin/Heidelberg )

ISSN (Print): 0941-4355

ISSN (Electronic): 1433-7339

Publication date (Electronic): 4 January 2023

Publication date (Print): 2023

Volume: 31

Issue: 1

Electronic Location Identifier: 95

Affiliations

[1 ]GRID grid.10698.36, ISNI 0000000122483208, Lineberger Comprehensive Cancer Center, , University of North Carolina at Chapel Hill, ; Chapel Hill, NC USA

[2 ]GRID grid.10698.36, ISNI 0000000122483208, School of Nursing, , University of North Carolina at Chapel Hill, ; Chapel Hill, NC USA

[3 ]GRID grid.266860.c, ISNI 0000 0001 0671 255X, School of Nursing, , University of North Carolina at Greensboro, ; Greensboro, NC USA

[4 ]GRID grid.189509.c, ISNI 0000000100241216, Duke University Hospital, ; Durham, NC USA

[5 ]GRID grid.10698.36, ISNI 0000000122483208, Division of Occupational Science and Occupational Therapy, , University of North Carolina at Chapel Hill, ; Chapel Hill, NC USA

[6 ]Select Medical, ReVital Cancer Rehabilitation Program, Mechanicsburg, PA USA

[7 ]GRID grid.10698.36, ISNI 0000000122483208, Department of Health Policy and Management, Gillings School of Global Public Health, , University of North Carolina at Chapel Hill, ; Chapel Hill, NC USA

[8 ]GRID grid.10698.36, ISNI 0000000122483208, Cecil G. Sheps Health Services Research Center, , University of North Carolina at Chapel Hill, ; Chapel Hill, NC USA

[9 ]GRID grid.10698.36, ISNI 0000000122483208, Department of Biostatistics, Gillings School of Global Public Health, , University of North Carolina at Chapel Hill, ; Chapel Hill, NC USA

Article

Publisher ID: 7565

DOI: 10.1007/s00520-022-07565-7

PMC ID: 9811045

PubMed ID: 36598590

SO-VID: 1113c7ce-7115-4599-801e-f41343fbd6e7

Copyright © © The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature 2023, Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

License:

This article is made available via the PMC Open Access Subset for unrestricted research re-use and secondary analysis in any form or by any means with acknowledgement of the original source. These permissions are granted for the duration of the World Health Organization (WHO) declaration of COVID-19 as a global pandemic.

History

Date received : 26 May 2022

Date accepted : 26 December 2022

Funding

Funded by: FundRef http://dx.doi.org/10.13039/100000054, National Cancer Institute;

Award ID: T32CA116339

Award Recipient : Kelly R. Tan

Funded by: FundRef http://dx.doi.org/10.13039/100000048, American Cancer Society;

Funded by: FundRef http://dx.doi.org/10.13039/100012400, Sigma Theta Tau International;

Funded by: School of Nursing, University of North Carolina at Chapel Hill

Funded by: FundRef http://dx.doi.org/10.13039/100000056, National Institute of Nursing Research;

Award ID: T32NR007091

Award ID: R34NR019131

Award Recipient : Stephanie Betancur Todd Schwartz Ashley Leak Bryant

Funded by: FundRef http://dx.doi.org/10.13039/100017234, Rita and Alex Hillman Foundation;

Funded by: FundRef http://dx.doi.org/10.13039/100018034, Jonas Philanthropies;

Funded by: FundRef http://dx.doi.org/10.13039/100008615, Lineberger Comprehensive Cancer Center, University of North Carolina at Chapel Hill;

Custom metadata

ScienceOpen disciplines: Oncology & Radiotherapy

Keywords: acute myeloid leukemia,informal caregivers,qualitative research,lower-intensity chemotherapy

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ScienceOpen disciplines: Oncology & Radiotherapy

Keywords: acute myeloid leukemia, informal caregivers, qualitative research, lower-intensity chemotherapy

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Perspectives of caregivers of older adults with acute myeloid leukemia during initial hypomethylating agents and venetoclax chemotherapy

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Abstract

Background

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Conclusions and implications

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Karger: Oncology

Most cited references 20

Using thematic analysis in psychology

Venetoclax combined with decitabine or azacitidine in treatment-naive, elderly patients with acute myeloid leukemia

Quality of Life of Caregivers of Older Patients with Advanced Cancer

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