Patient and Provider Perspectives on the Impacts of Unpredictability for Patient Sensemaking: Implications for Intervention Design

Abstract

Patients facing situations with significant unpredictability are met with challenges to expectation formation and preparation. One such context with unpredictable clinical outcomes is bone marrow transplant (BMT) for patients with hematologic malignancies. To understand the experience of unpredictability and opportunities for intervention, semi-structured interviews with patients who had received BMT (n = 7) and transplant providers (n = 8) were conducted. Thematic analysis revealed conflict between the necessity of expectation formation and the unpredictability of transplant. Providers described a tension between adequately informing patients of potential risks of transplant and presenting so much information as to create unnecessary anxiety in patients. Patients described issues with outcome unpredictability (not knowing what particular complications they would experience) and temporal unpredictability (not knowing when complications would appear). Patients struggled to make sense of unexpected complications and resulting limitations post-BMT and plan for the future amid the nonlinear recovery timeline. The challenges of unpredictability warrant a support solution that enables patient sensemaking in their evolving illness journey and facilitates adaptation to new circumstances.

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

“…Additionally, many hematologists acknowledged the prolonged biopsychosocial toll of transplant, highlighted the commitment and sacrifice required, and indicated that no matter what bumps the patient encountered, his life would never be the same. [27][28][29][30] Big-picture statements, such as "Transplant changes your life" (08), framed this content clearly. 31 Despite the detailed information hematologists often provide, 23 many studies have indicated patients perceive that their information needs are not met.…”

“…[] I'm not in a position to make a recommendation until we have all the pieces together. (30) Decision-making strategies Physician-directed I think we should definitely aim for cure in your case, and the only cure for myelodysplastic syndrome is a bone marrow transplant. (22) Patient-driven I think then you may just have to do a little more thinking on your end about whether this is, this is what you want to do.…”

“…6,51,54,56,63,64 Patients need information about transplant that is practical, contextual, and structured around their values and lived experience. 30,32,36 Hematologists can facilitate SDM by encouraging patients to participate in the conversation, inviting them to reflect on content and weigh their current feelings against previously held values, and facilitating ongoing dialogue.…”

“…Additionally, many hematologists acknowledged the prolonged biopsychosocial toll of transplant, highlighted the commitment and sacrifice required, and indicated that no matter what bumps the patient encountered, his life would never be the same. 27-30 Big-picture statements, such as “Transplant changes your life” (08), framed this content clearly. 31…”

Investigating and Supporting Patient and Caregiver Sensemaking in Complex Medical Decisions Using Participatory Design

“…[12][13][14][15] Previous studies have identified significant challenges to decision making and sensemaking support for this population. [16][17][18][19][20][21][22] The trauma of hematologic malignancy may lead patients to take a more passive role in treatment decisions. 23,24 Differences in patient and clinician estimations of BMT outcomes, including likelihood of a cure and treatment-related morbidity, can also affect treatment decisions.…”