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.