scholarly journals Engaging Patients in Setting a Patient-Centered Outcomes Research Agenda in Hematopoietic Cell Transplantation

2018 ◽  
Vol 24 (6) ◽  
pp. 1111-1118 ◽  
Author(s):  
Linda J. Burns ◽  
Beatrice Abbetti ◽  
Stacie D. Arnold ◽  
Jeffrey Bender ◽  
Susan Doughtie ◽  
...  
2017 ◽  
Vol 1 (19) ◽  
pp. 1617-1627 ◽  
Author(s):  
Nandita Khera ◽  
Patricia Martin ◽  
Kristen Edsall ◽  
Anthony Bonagura ◽  
Linda J. Burns ◽  
...  

Abstract Hematopoietic cell transplantation (HCT) is an expensive, resource-intensive, and medically complicated modality for treatment of many hematologic disorders. A well-defined care coordination model through the continuum can help improve health care delivery for this high-cost, high-risk medical technology. In addition to the patients and their families, key stakeholders include not only the transplantation physicians and care teams (including subspecialists), but also hematologists/oncologists in private and academic-affiliated practices. Initial diagnosis and care, education regarding treatment options including HCT, timely referral to the transplantation center, and management of relapse and late medical or psychosocial complications after HCT are areas where the referring hematologists/oncologists play a significant role. Payers and advocacy and community organizations are additional stakeholders in this complex care continuum. In this article, we describe a care coordination framework for patients treated with HCT within the context of coordination issues in care delivery and stakeholders involved. We outline the challenges in implementing such a model and describe a simplified approach at the level of the individual practice or center. This article also highlights ongoing efforts from physicians, medical directors, payer representatives, and patient advocates to help raise awareness of and develop access to adequate tools and resources for the oncology community to deliver well-coordinated care to patients treated with HCT. Lastly, we set the stage for policy changes around appropriate reimbursement to cover all aspects of care coordination and generate successful buy-in from all stakeholders.


2020 ◽  
Vol 30 (2) ◽  

Abstract Purpose: The purpose of this study was to qualitatively analyze metacommunication during the digital storytelling (DST) workshop process for patients undergoing hematopoietic cell transplantation (HCT). Methods: HCT survivors who had undergone transplant within the past 2 years were recruited at a cancer center in the Phoenix Metropolitan area. Participants (M age = 51.5 years) attended a 3-day DST workshop telling and creating digital stories around their HCT experiences. Using a constructivist grounded theory approach, line by line coding and content analysis were conducted with four research team members. Results: Four themes emerged from the data: (1) communal connection; (2) expressing and processing emotions; (3) self-empowerment; and (4) multi-dimensional coping. Participants described telling and sharing their story with other HCT patients as therapeutic. Conclusion: DST shows promise as a potential coping tool and offers multiple dimensions of the role of narrative as a coping technique, in community building, and in patient-centered contexts within HCT.


Hematology ◽  
2021 ◽  
Vol 2021 (1) ◽  
pp. 570-577
Author(s):  
David Buchbinder ◽  
Nandita Khera

Abstract With improvement in survival after hematopoietic cell transplantation (HCT), it has become important to focus on survivors' psychosocial issues in order to provide patient-centered care across the transplant continuum. The goals of this article are to describe updates in the literature on certain psychosocial domains (emotional/mental health and social/financial) in HCT survivors, offer a brief overview of the status of the screening and management of these complications, and identify opportunities for future practice and research. An evidence-based approach to psychosocial care can be broken down as primary (promoting health, raising awareness, and addressing risk factors), secondary (screening and directing early pharmacological and nonpharmacological interventions), and tertiary (rehabilitating, limiting disability, and improving quality of life) prevention. Implementing such an approach requires close coordination between multiple stakeholders, including transplant center staff, referring hematologist/oncologists, and other subspecialists in areas such as palliative medicine or psychiatry. Innovative models of care that leverage technology can bring these stakeholders together to fulfill unmet needs in this area by addressing barriers in the delivery of psychosocial care.


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