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

Foster, Jackie; Moore, Heather; Preussler, Jaime M.; Burns, Linda J.; Umar, Jenna Hullerman; Glotzbecker, Brett; Johnson, Shirley; MacDougall, Hannah; Mau, Lih‐Wen; Murphy, Elizabeth A.; Üstün, Celalettin; Ferguson, Stacy Stickney; Denzen, Ellen M.

doi:10.1007/s13187-019-01506-5

Cited by 5 publications

(2 citation statements)

References 14 publications

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“…31 Despite the detailed information hematologists often provide, 23 many studies have indicated patients perceive that their information needs are not met. [32][33][34][35][36][37][38][39][40][41] In particular, many patients express surprise and unpreparedness for the impact of transplant side effects and complications on their daily lives and identity. 28,30,32,35,36,42,43 In combination with observations from our hematologist-focused study, these findings highlight a delicate balance for patients considering transplant among education, information processing, and actual experience.…”

Section: Discussionmentioning

confidence: 99%

Communication Strategies of Transplant Hematologists in High-Risk Decision-Making Conversations

Rodenbach,

Thordardottir,

Brauer

et al. 2024

JCO Oncol Pract

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PURPOSE Shared decision making (SDM) is essential to empower patients with blood cancers to make goal-concordant decisions about allogeneic hematopoietic cell transplantation. This study characterizes communication strategies used by hematologists to discuss treatment options and facilitate SDM with patients in this high-risk, high-reward setting. METHODS AND MATERIALS We recruited US hematologists who routinely perform allogeneic hematopoietic cell transplant through email. Participants conducted up to an hour-long video-recorded encounter with an actor portraying a 67-year-old man with recently diagnosed high-risk myelodysplastic syndrome. We transcribed and qualitatively analyzed video-recorded data. RESULTS The mean age of participants (N = 37) was 44 years, 65% male, and 68% White. Many hematologists included similar key points in this initial consultation, although varied in how much detail they provided. Their discussion of treatment options included transplant and chemotherapy and less commonly supportive care or clinical trials. They often emphasized transplant's potential for cure, discussed transplant chronologically from pretransplant considerations through the post-transplant course, and outlined risks, complications, and major outcomes. Hematologists referred to several elements that formed the basis of treatment decision making. The strength of their treatment recommendations ranged from strong recommendations for transplant or chemotherapy to deferrals pending more information. Hematologists also varied in the extent to which they indicated the decision was physician-driven, patient-led, or shared. CONCLUSION The transplant decision-making discussion is complex. Identification of similar content areas used by hematologists can be used as the basis for a communication tool to help hematologists discuss allogeneic hematopoietic cell transplant with patients.

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Section: Discussionmentioning

confidence: 99%

Communication Strategies of Transplant Hematologists in High-Risk Decision-Making Conversations

Rodenbach,

Thordardottir,

Brauer

et al. 2024

JCO Oncol Pract

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“…Although patient education is critical, patients frequently describe needing types of information and emotional support that are not typically available from providers 1,2 (e.g., insight into day-to-day treatment and recovery experiences, 3 realistic information about side effects and management strategies 4 ), but that are best provided by patients with a similar diagnosis or treatment-that is, peer support. 1,5,6 Informational and emotional support from peers 7,8 can reduce patients' distress 9,10 and social isolation 8,11 ; increase hope and optimism 12 ; help patients feel more informed, 8 empowered, 8 and prepared 10 ; normalize their reactions and experiences 4,8 ; alert them to available resources 13 ; support and inform their decision making 14 ; and model new ways of coping with potential problems. 4,8 Despite these benefits, peers may provide inaccurate information, reinforce unhelpful health behaviors, and increase distress and anxiety through negative stories.…”

Section: Introductionmentioning

confidence: 99%

Optimizing use of written peer support as a supportive resource in cancer: Focus group insights

et al. 2022

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Purpose: Cancer survivors frequently describe wanting to learn from others who have had similar diagnoses or treatments (peer support). We conducted focus groups to investigate hematopoietic stem cell transplant survivors' attitudes and preferences regarding accessing written peer support through a website. Although written peer support does not allow for interpersonal interactions with peers, it could increase transplant recipients' access to evidence-based benefits of informational and emotional peer support. Methods:We conducted four videoconference focus groups with 34 adult transplant survivors who were diverse in their medical and sociodemographic characteristics and geographic location. Discussions were recorded, transcribed, and content analyzed. Results: Many participants reported need for information about transplant beyondwhat they received from their healthcare providers. Needs varied across participants, as did preferences for characteristics and timing of information optimallyThis is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.

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Health-Related Quality of Life Outcomes in Older Hematopoietic Cell Transplantation Survivors

Hong

Zhao

Wang

et al. 2023

Transplantation and Cellular Therapy

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

Cited by 5 publications

References 14 publications

Communication Strategies of Transplant Hematologists in High-Risk Decision-Making Conversations

Communication Strategies of Transplant Hematologists in High-Risk Decision-Making Conversations

Optimizing use of written peer support as a supportive resource in cancer: Focus group insights

Health-Related Quality of Life Outcomes in Older Hematopoietic Cell Transplantation Survivors

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