Background Individuals living with sickle cell disease (SCD) may benefit from a variety of disease-modifying therapies, including hydroxyurea, voxelotor, crizanlizumab, L-glutamine, and chronic blood transfusions. However, allogeneic hematopoietic stem cell transplantation (HCT) remains the only nonexperimental treatment with curative intent. As HCT outcomes can be influenced by the complex interaction of several risk factors, HCT can be a difficult decision for health care providers to make for their patients with SCD. Objective The aim of this study is to determine the acceptability and usability of a prototype decision support tool for health care providers in decision-making about HCT for SCD, together with patients and their families. Methods On the basis of published transplant registry data, we developed the Sickle Options Decision Support Tool for Children, which provides health care providers with personalized transplant survival and risk estimates for their patients to help them make informed decisions regarding their patients’ management of SCD. To evaluate the tool for its acceptability and usability, we conducted beta tests of the tool and surveys with physicians using the Ottawa Decision Support Framework and mobile health app usability questionnaire, respectively. Results According to the mobile health app usability questionnaire survey findings, the overall usability of the tool was high (mean 6.15, SD 0.79; range 4.2-7). According to the Ottawa Decision Support Framework survey findings, acceptability of the presentation of information on the decision support tool was also high (mean 2.94, SD 0.63; range 2-4), but the acceptability regarding the amount of information was mixed (mean 2.59, SD 0.5; range 2-3). Most participants expressed that they would use the tool in their own patient consults (13/15, 87%) and suggested that the tool would ease the decision-making process regarding HCT (8/9, 89%). The 4 major emergent themes from the qualitative analysis of participant beta tests include user interface, data content, usefulness during a patient consult, and potential for a patient-focused decision aid. Most participants supported the idea of a patient-focused decision aid but recommended that it should include more background on HCT and a simplification of medical terminology. Conclusions We report the development, acceptability, and usability of a prototype decision support tool app to provide individualized risk and survival estimates to patients interested in HCT in a patient consultation setting. We propose to finalize the tool by validating predictive analytics using a large data set of patients with SCD who have undergone HCT. Such a tool may be useful in promoting physician-patient collaboration in making shared decisions regarding HCT for SCD. Further incorporation of patient-specific measures, including the HCT comorbidity index and the quality of life after transplant, may improve the applicability of the decision support tool in a health care setting.

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BACKGROUND Individuals living with sickle cell disease (SCD) may benefit from a variety of disease-modifying therapies including hydroxyurea, voxelotor, crizanlizumab, L-Glutamine, and chronic blood transfusions, but allogenic hematopoietic stem cell transplantation (HCT) remains the only treatment with curative intent. Since HCT outcomes can be influenced by the complex interaction of several risk factors, HCT can be a difficult decision for healthcare providers to make for their SCD patients. OBJECTIVE The objective of this study was to determine the acceptability and usability of a prototype decision support tool to healthcare providers in decision making about HCT for SCD in conjunction with patients and their families. METHODS Based on published transplant registry data, we developed the Sickle Options decision support tool which provides healthcare providers with personalized transplant survival and risk estimates for their patients to help them make informed decisions regarding their patients’ management of SCD. To evaluate the tool for its acceptability and usability, we conducted beta-tests of the tool and surveys with physicians using the Ottawa Decision Support framework (ODSF) and mHealth App Usability Questionnaire (MAUQ) respectively. RESULTS On the MAUQ survey, the overall usability of the tool was high (mean 6.15, SD 0.79, 4.2-7). On the ODSF survey, acceptability of the decision support tool’s presentation of information was also high (mean 2.94, SD 0.63, 2-4) but mixed regarding the tool’s amount of it (mean 2.59, SD 0.5, 2-3). 87% of participants expressed that they would use the tool in their own patient consults, with 89% suggesting that the tool would ease the decision-making process regarding HCT. The four major emergent themes from the qualitative analysis of participant beta-tests include user interface, data content, usefulness during a patient consult, and potential for a patient-focused decision aid. A majority of participants welcomed the idea of a patient-focused decision aid but suggested to provide more background on HCT and a simplification of medical terminology. CONCLUSIONS We report the development, acceptability, and usability of a prototype decision support tool app to provide individualized risk and survival estimates to patients interested in HCT. The use of such a tool may encourage better physician-patient collaboration regarding the decision-making process and help to deliver evidence-based care to patients. Further incorporation of patient-specific measures including the HCT co-morbidity index and quality of life (QoL) post-transplant may improve the applicability of the decision support tool in a healthcare setting.