@article{2a576a01c6fb490e83e9b6ba5dcbdc7b,
title = "A Conceptual Framework and Key Research Questions in Educational Needs of Blood and Marrow Transplantation Patients, Caregivers, and Families",
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",
author = "Schoemans, {Helene M.} and L. Finn and Jackie Foster and Alva Roche-Green and Margaret Bevans and S. Kullberg and Everett Lee and C. Sargeant and Schatz, {Barry A.} and Kristin Scheeler and Shaw, {Bronwen E.} and Evan Shereck and Murphy, {Elizabeth A.} and Burns, {Linda J.} and Kim Schmit-Pokorny",
note = "Funding Information: Advances in blood and marrow transplantation (BMT) outcomes are increasing the number of survivors, with an estimated one-half million survivors by 2030 in the United States [1]. Several care models are being used to address the specific needs of this population [2], many relying on patient-reported outcomes of self-management techniques. Emerging literature suggests that including patients as active team members in the recovery process has a positive impact on transplantation outcomes [3-5]. The National Marrow Donor Program(NMDP)/Be The Match developed an initiative to engage patients in setting a patient-centered BMT research agenda that was supported by the Patient-Centered Outcomes Research Institute (PCORI) [6]. This initiative was coordinated through 6 different working groups. The Patient, Caregiver, and Family Education and Support Working Group (?Working Group? hereinafter) was based on the postulate that BMT is a highly complex therapy requiring lifelong follow-up and care, which naturally implies that patients, caregivers, and their families must understand what is at stake to play active roles at all stages of the recovery process. The Working Group's aims were to review the current evidence and identify gaps in knowledge relative to patient/caregiver BMT education and to design and prioritize future relevant research questions on this topic.We thank the PCORI Program Officer, Yasmeen Long, for her assistance throughout the project. We thank all the patients, their caregivers and family members who participated in this project, with a special thank you to Everett Lee and his family for their dedication to the completion of this project. Financial disclosure: This project was supported in part by a Patient-Centered Outcomes Research Institute Eugene Washington Engagement Award (PCORI EAIN-2956). Conflict of interest statement: There are no relevant conflicts of interest to report. Authorship statement: L.J.B. designed the project and recruited the members of the project. All authors participated in the discussion, critically reviewed the literature and the manuscript. H.M.S. suggested the conceptual model and manuscript structure. H.M.S. L.F. L.J.B. and K.S.P. wrote the manuscript. All authors approved the final version of the manuscript before submission. H.M.S and L.F. contributed equally to this work and should be considered co-first authors. Financial disclosure: See Acknowledgments on page 1422. Funding Information: Financial disclosure: This project was supported in part by a Patient-Centered Outcomes Research Institute Eugene Washington Engagement Award ( PCORI EAIN-2956 ). Publisher Copyright: {\textcopyright} 2019",
year = "2019",
month = jul,
doi = "10.1016/j.bbmt.2019.02.017",
language = "English (US)",
volume = "25",
pages = "1416--1423",
journal = "Biology of Blood and Marrow Transplantation",
issn = "1083-8791",
publisher = "Elsevier Inc.",
number = "7",
}