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Information Needs for Treatment Decision-making of Hematopoietic Cell Transplant Patients 65 Years or Older and Caregivers

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Abstract

Hematopoietic cell transplantation (HCT) is a complex and potentially life-threatening treatment option for patients with hematologic malignant and non-malignant diseases. Advances have made HCT a potentially curative treatment option for patients 65 years of age and older (older patients), and patient education resources should be adapted to meet their needs. To better understand the information needs of older patients and their caregivers for HCT treatment decision-making, the National Marrow Donor Program® (NMDP)/Be The Match® conducted a qualitative comprehensive needs assessment. Focus groups, offered in person or by phone, were conducted with older HCT patients and primary caregivers of older HCT patients at three transplant centers in the USA that were selected based on the number of older adults treated and geographic diversity. The one-hour, semi-structured discussions were recorded and transcribed verbatim. The analysis was performed with the NVivo 10 software for identification of conceptual themes. Five telephone and six in person focus groups of patients (n = 35) and caregivers (n = 10) were conducted. Themes that emerged included the following: (1) the need for tailored resources with age-specific recovery expectations; (2) the need for the right amount of information at the right times; and (3) the benefit of peer support. Effective patient education supports learning and treatment decision-making. As HCT increasingly becomes a treatment option for older patients, tailored educational resources are needed. These focus group results can inform and guide the development of new educational resources for older adults with hematologic diseases considering and planning for HCT.

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Acknowledgments

The study investigators thank the focus group participants for their thoughtful and candid reflection on their information needs and treatment decision-making process.

Author information

Authors and Affiliations

  1. National Marrow Donor Program®/Be The Match®, 500 N 5th Street, Minneapolis, MN, 55401-1206, USA

    Jackie Foster, Heather Moore, Jaime M. Preussler, Linda J. Burns, Jenna Hullerman Umar, Lih-Wen Mau, Elizabeth A. Murphy, Stacy Stickney Ferguson & Ellen Denzen

  2. Center for International Blood and Marrow Transplant Research, 500 N 5th Street, Minneapolis, MN, 55401-1206, USA

    Jaime M. Preussler, Linda J. Burns, Jenna Hullerman Umar, Lih-Wen Mau & Ellen Denzen

  3. Dana Farber Cancer Institute, 400 Brookline Ave, Boston, MA, 02215, USA

    Brett Glotzbecker

  4. City of Hope Comprehensive Cancer Center, 1500 East Durate Road, Durate, CA, 91010, USA

    Shirley Johnson

  5. University of Minnesota, 420 Delaware Street SE, Minneapolis, MN, 55455, USA

    Hannah MacDougall & Celalettin Ustun

Authors
  1. Jackie Foster
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  2. Heather Moore
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  3. Jaime M. Preussler
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  4. Linda J. Burns
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  6. Brett Glotzbecker
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  7. Shirley Johnson
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  8. Hannah MacDougall
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  9. Lih-Wen Mau
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  10. Elizabeth A. Murphy
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  11. Celalettin Ustun
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  12. Stacy Stickney Ferguson
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  13. Ellen Denzen
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Corresponding author

Correspondence to Jackie Foster.

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Conflicts of Interest

The authors declare that they have no conflicts of interest.

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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Appendix

Appendix

Focus Group Questions

  • Before [your/your loved ones] diagnosis, did you have any knowledge about transplant?

HCT Topic Areas for Older Adults

  • What information was of interest to you?

  • What information wasn’t of interest to you?

  • What are the most important things for older adults to know about transplant?

  • What do you know now about transplant that you wished you knew before transplant?

HCT Educational Format for Older Adults

  • Where did you go to get information about transplant?

  • What is the best way to inform older adults about transplant?

  • How did you prefer to learn about transplant?

  • What are some of the challenges you experienced when trying to learn about transplant?

  • Where would you expect to find information about transplant?

Treatment Decision-making Process

  • Please walk us through your decision-making process to go ahead with a transplant.

  • How did you evaluate and sort through the different treatment options your doctor recommended?

  • When considering treatment options for you, what did you need to know to make the best decision?

  • When making a decision to have transplant, did you seek additional advice? From whom? How long did you need to make your final decision?

  • Who was involved in your decision-making process and what role did they play? Who or what was instrumental in helping you decide?

  • Has your [loved one/caregiver] ever brought you information about transplant? Where did he/she get it? What was your response?

Conclusion

  • What one piece of advice would you give to other older adults who are learning about transplant as a treatment option for their disease?

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Foster, J., Moore, H., Preussler, J.M. et al. Information Needs for Treatment Decision-making of Hematopoietic Cell Transplant Patients 65 Years or Older and Caregivers. J Canc Educ 35, 651–660 (2020). https://doi.org/10.1007/s13187-019-01506-5

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  • DOI: https://doi.org/10.1007/s13187-019-01506-5

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