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

  • Jackie FosterEmail author
  • Heather Moore
  • Jaime M. Preussler
  • Linda J. Burns
  • Jenna Hullerman Umar
  • Brett Glotzbecker
  • Shirley Johnson
  • Hannah MacDougall
  • Lih-Wen Mau
  • Elizabeth A. Murphy
  • Celalettin Ustun
  • Stacy Stickney Ferguson
  • Ellen Denzen
Article
  • 45 Downloads

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.

Keywords

Treatment decision-making Hematopoietic cell transplant Older patients Caregivers 

Notes

Acknowledgments

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

Compliance with Ethical Standards

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.

Supplementary material

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Copyright information

© American Association for Cancer Education 2019

Authors and Affiliations

  • Jackie Foster
    • 1
    Email author
  • Heather Moore
    • 1
  • Jaime M. Preussler
    • 1
    • 2
  • Linda J. Burns
    • 1
    • 2
  • Jenna Hullerman Umar
    • 1
    • 2
  • Brett Glotzbecker
    • 3
  • Shirley Johnson
    • 4
  • Hannah MacDougall
    • 5
  • Lih-Wen Mau
    • 1
    • 2
  • Elizabeth A. Murphy
    • 1
  • Celalettin Ustun
    • 5
  • Stacy Stickney Ferguson
    • 1
  • Ellen Denzen
    • 1
    • 2
  1. 1.National Marrow Donor Program®/Be The Match®MinneapolisUSA
  2. 2.Center for International Blood and Marrow Transplant ResearchMinneapolisUSA
  3. 3.Dana Farber Cancer InstituteBostonUSA
  4. 4.City of Hope Comprehensive Cancer CenterDurateUSA
  5. 5.University of MinnesotaMinneapolisUSA

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