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Caregiver availability and patient access to hematopoietic cell transplantation: social worker perspectives inform practice

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Abstract

Purpose

Hematopoietic cell transplantation (HCT) often involves a long hospitalization and recovery period, with patients generally required to have a caregiver. This study aimed to identify transplant center (TC) requirements for a caregiver, describe challenges that impact caregiver availability, and identify potential solutions.

Methods

An exploratory sequential mixed-methods approach was used. Qualitative data was obtained from focus groups of TC social workers in the United States (US) (three focus groups; n = 15 total participants). Results informed the development of a national, web-based survey that was administered to the primary social worker contact at TCs in the National Marrow Donor Program (NMDP)/Be The Match Network (n = 133).

Results

Respondents included social workers from adult (n = 47) and pediatric (n = 19) TCs (response rate = 49%). The majority (89%) of both adult and pediatric TCs required a caregiver for a patient to proceed to transplant, but requirements varied in length of time, formality, transplant type, and HCT setting. Regardless of transplant type or patient population, social workers identified loss of caregiver income as the greatest challenge to caregiver availability, with the most common solution being allowing patients to have multiple caregivers throughout the transplant course.

Discussion

Caregiver availability is an important concern for patients considering and receiving HCT, and may be a barrier proceeding to HCT when a caregiver is unavailable. Results from this study highlight caregiver availability barriers and solutions of TCs across the US. These results can inform TCs about other center experiences with caregiver availability and identify potential practice changes for individual TCs.

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Acknowledgements

We thank the National Marrow Donor Program’s System Capacity Initiative Program for supporting this study. We also thank William Vaughn, MD (University of Alabama), for participating in the study protocol team; Diane W. Carr, MPH (NMDP), and Viengneesee Thao, MS, for their help in reaching out to potential survey participants; Tammy Payton (NMDP) for her coding of focus group responses; and Linda J. Burns, MD, for critical review of the manuscript. Finally, we thank the social workers who participated in the focus groups and survey.

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Authors and Affiliations

  1. National Marrow Donor Program®/Be The Match®, 500 N. 5th St., Minneapolis, MN, USA

    Jaime M. Preussler, Lih-Wen Mau, Emilie Clancy, Kate A. Pederson, Stacy Stickney Ferguson, Elizabeth A. Murphy & Ellen M. Denzen

  2. Center for International Blood and Marrow Transplant Research, Minneapolis, MN, USA

    Jaime M. Preussler, Lih-Wen Mau & Ellen M. Denzen

  3. Blood and Marrow Transplant Program, Cleveland Clinic, Cleveland, OH, USA

    Navneet S. Majhail

  4. National Institutes of Health Office of Research on Women’s Health, Bethesda, MD, USA

    Margaret Bevans

  5. CancerCare, New York, NY, USA

    Carolyn Messner

  6. University of Minnesota Medical Center, Minneapolis, MN, USA

    Leslie Parran

  7. The University of Texas M.D. Anderson Cancer Center, Houston, TX, USA

    Kent Walters

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  1. Jaime M. Preussler
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Correspondence to Jaime M. Preussler.

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Disclosure

CIBMTR® (Center for International Blood and Marrow Transplant Research®) is a research collaboration between the National Marrow Donor Program®/Be The Match® and Medical College of Wisconsin. The CIBMTR is supported by Public Health Service Grant/Cooperative Agreement U24-CA76518 from the National Cancer Institute (NCI), the National Heart, Lung and Blood Institute (NHLBI), and the National Institute of Allergy and Infectious Diseases (NIAID); a Grant/Cooperative Agreement 5U01HL069294 from NHLBI and NCI; a contract HHSH234200637015C with Health Resources and Services Administration (HRSA/DHHS); two Grants N00014-06-1-0704 and N00014-08-1-0058 from the Office of Naval Research; and grants from AABB; Allos, Inc.; Amgen, Inc.; Anonymous donation to the Medical College of Wisconsin; Astellas Pharma US, Inc.; Be The Match Foundation; Biogen IDEC; BioMarin Pharmaceutical, Inc.; Biovitrum AB; BloodCenter of Wisconsin; Blue Cross and Blue Shield Association; Bone Marrow Foundation; Buchanan Family Foundation; CaridianBCT; Celgene Corporation; CellGenix, GmbH; Children’s Leukemia Research Association; ClinImmune Labs; CTI Clinical Trial and Consulting Services; Eisai, Inc.; Genentech, Inc.; Genzyme Corporation; Histogenetics, Inc.; HKS Medical Information Systems; Hospira, Inc.; Kirin Brewery Co., Ltd.; The Leukemia & Lymphoma Society; Merck & Company; The Medical College of Wisconsin; Millennium Pharmaceuticals, Inc.; Miller Pharmacal Group; Milliman USA, Inc.; Miltenyi Biotec, Inc.; National Marrow Donor Program; Nature Publishing Group; Novartis Oncology; Oncology Nursing Society; Osiris Therapeutics, Inc.; Otsuka America Pharmaceutical, Inc.; Pall Life Sciences; Pfizer Inc.; Schering Corporation; Sigma-Tau Pharmaceuticals; Soligenix, Inc.; StemCyte, Inc.; StemSoft Software, Inc.; Sysmex America, Inc.; THERAKOS, Inc.; Vidacare Corporation; ViraCor Laboratories; ViroPharma, Inc.; and Wellpoint, Inc. The views expressed in this article do not reflect the official policy or position of the National Institutes of Health, the Department of the Navy, the Department of Defense, or any other agency of the U.S. Government. The Health Services Research Program is supported in part by Health Resources and Services Administration Contract No. HHSH234200637018C. The views expressed in this article do not reflect the official policy or position of the Health Resources and Services Administration or the National Marrow Donor Program/Be The Match®.

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Preussler, J.M., Mau, LW., Majhail, N.S. et al. Caregiver availability and patient access to hematopoietic cell transplantation: social worker perspectives inform practice. Support Care Cancer 27, 4253–4264 (2019). https://doi.org/10.1007/s00520-019-04696-2

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