Patient Perspectives Regarding Allogeneic Bone Marrow Transplantation in Myelofibrosis.
Adult
Aged
Aged, 80 and over
Allografts
Bone Marrow Transplantation
/ economics
Female
Graft vs Host Disease
/ economics
Hematopoietic Stem Cell Transplantation
/ economics
Humans
Male
Middle Aged
Patient Acceptance of Health Care
Primary Myelofibrosis
/ economics
Quality of Life
Surveys and Questionnaires
Bone marrow transplantation
Myelofibrosis
Patient perspective
Quality of life
Survey
Journal
Biology of blood and marrow transplantation : journal of the American Society for Blood and Marrow Transplantation
ISSN: 1523-6536
Titre abrégé: Biol Blood Marrow Transplant
Pays: United States
ID NLM: 9600628
Informations de publication
Date de publication:
02 2019
02 2019
Historique:
received:
28
06
2018
accepted:
27
09
2018
pubmed:
7
10
2018
medline:
25
12
2019
entrez:
7
10
2018
Statut:
ppublish
Résumé
Hematopoietic stem cell transplantation (HCT) is a curative treatment for patients with myelofibrosis (MF); however, many HCT-eligible patients decline this potentially life-saving procedure. The reasons behind this decision are not clear. We sought to survey patients with MF to understand their perspective on HCT. A 63-question survey was posted on myeloproliferative neoplasm patient advocacy websites. A total of 129 patients with MF responded to the survey. Among these patients, 49 (41%) were referred for HCT, and 41(32%) attended the transplantation consult. Of the patients who attended the transplantation consult, 24 (59%) did not plan on going on to HCT, and 16 (41%) intended to proceed with HCT. Reasons for the decision to not undergo transplantation included the desire to not be ill, desire to not spend time in the hospital, and concerns about overall quality of life. Specifically, concerns related to financial impact and the risk of graft-versus-host disease (GVHD) were expressed. Patients who decided to proceed with HCT felt that this would extend their survival and allow them to be around family for longer. This is the first survey to investigate patient perceptions regarding HCT for MF. Less than one-half of the patients were referred for HCT, and of those, less than one-half planned on proceeding with the transplantation, suggesting that many patients do not receive this life-saving procedure. Further exploration of the basis of patients' reluctance to proceed with HCT is warranted.
Identifiants
pubmed: 30292010
pii: S1083-8791(18)30600-1
doi: 10.1016/j.bbmt.2018.09.033
pmc: PMC8207329
mid: NIHMS1698056
pii:
doi:
Types de publication
Clinical Trial
Journal Article
Research Support, N.I.H., Extramural
Langues
eng
Sous-ensembles de citation
IM
Pagination
398-402Subventions
Organisme : NCI NIH HHS
ID : P30 CA054174
Pays : United States
Informations de copyright
Copyright © 2018. Published by Elsevier Inc.
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