A Conceptual Framework and Key Research Questions in Educational Needs of Blood and Marrow Transplantation Patients, Caregivers, and Families

Helene M Schoemans; Laura Finn; Jackie Foster; Alva Roche-Green; Margaret Bevans; Susan Kullberg; Everett Lee; Cindy Sargeant; Barry A Schatz; Kristin Scheeler; Bronwen E Shaw; Evan Shereck; Elizabeth A Murphy; Linda J Burns; Kim Schmit-Pokorny

doi:10.1016/j.bbmt.2019.02.017

A Conceptual Framework and Key Research Questions in Educational Needs of Blood and Marrow Transplantation Patients, Caregivers, and Families

Biol Blood Marrow Transplant. 2019 Jul;25(7):1416-1423. doi: 10.1016/j.bbmt.2019.02.017. Epub 2019 Feb 20.

Authors

Affiliations

¹ Department of Hematology, University Hospital Leuven and KU Leuven, Leuven, Belgium. Electronic address: helene.schoemans@uzleuven.be.
² Division of Hematology and Bone Marrow Transplant, Ochsner Health System, New Orleans, Louisiana.
³ National Marrow Donor Program/Be The Match, Minneapolis, Minnesota.
⁴ Department of Family and Palliative Medicine, Mayo Clinic, Jacksonville, Florida.
⁵ Office of Research on Women's Health, National Institutes of Health, Bethesda, Maryland.
⁶ Minneapolis, Minnesota.
⁷ Dallas, Texas.
⁸ Woodbine, Maryland.
⁹ Cancer Center Administration, Loyola University Chicago, Chicago, Illinois.
¹⁰ Information Resource Center, The Leukemia & Lymphoma Society, Rye Brook, New York.
¹¹ Center for Blood and Marrow Transplant Research and the Medical College of Wisconsin, Milwaukee, Wisconsin.
¹² Department of Pediatrics, Oregon Health & Science University, Portland, Oregon.
¹³ National Marrow Donor Program/Be The Match, Minneapolis, Minnesota; Center for International Blood and Marrow Transplant Research, Minneapolis, Minnesota.
¹⁴ Nebraska Medicine, Omaha, Nebraska.

PMID: 30796997
DOI: 10.1016/j.bbmt.2019.02.017

Abstract

Patient, caregiver, and family education and support was 1 of 6 key areas of interest identified by the National Marrow Donor Program/Be The Match 2-year project to prioritize patient-centered outcomes research (PCOR) goals for the blood and marrow transplantation (BMT) community. PCOR focuses on research to help patients and their caregivers make informed decisions about health care. Therefore, each area of interest was assigned to a working group with broad representation, including patients, caregivers, and clinicians. Each working group was charged with identifying gaps in knowledge and making priority recommendations for critical research to fill those gaps. The report from this working group presents a conceptual framework to address gaps in knowledge regarding patient and caregiver education in BMT and recommendations for priority research questions on this topic.

Keywords: Blood and marrow transplantation; Caregivers; Education needs; Patients; Self-management.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Bone Marrow Transplantation*
Bone Marrow*
Caregivers*
Family*
Female
Humans
Male
Patient Education as Topic*
Patient Outcome Assessment*