McKinney Warren T, Schaffhausen Cory R, Bruin Marilyn J, Chu Sauman, Schladt David, Matas Arthur, Snyder Jon, Kasiske Bertram, Israni Ajay K
Hennepin Healthcare Research Institute, Minneapolis, MN.
College of Design, University of Minnesota, Minneapolis, MN.
Transplant Direct. 2020 Jul 17;6(8):e585. doi: 10.1097/TXD.0000000000001036. eCollection 2020 Aug.
Patients face obstacles in finding a transplant program that meets their healthcare needs. Acceptance criteria and waiting times vary by region and program. The Scientific Registry of Transplant Recipients provides program-specific information, but it is unclear what patients and referring physicians need to know.
We examined variability in program-specific characteristics that could influence access to transplantation. We also conducted 20 interviews and 16 focus groups with transplant candidates, recipients, and their family members. Participants were shown prototypes of a patient-specific search tool and evaluated its capacity to identify programs tailored to the needs of individual patients.
The distribution of recipient and donor characteristics that may impact access to transplantation, such as recipients on Medicaid, varied across programs (all with < 0.01). Several themes emerged related to impressions of access to transplantation and the usability of patient-specific search functions. Perceptions of the prototypes and results varied, but were positive overall and support providing an individualized search of program level data. Participants revealed significant barriers to identifying and evaluating transplant programs and suggest that patient-specific search results reduce the anxiety associated with selecting a program.
Providing patient-specific tools is valued by patients and important to maximizing access to transplant.
患者在寻找满足其医疗需求的移植项目时面临障碍。接受标准和等待时间因地区和项目而异。移植受者科学登记处提供特定项目的信息，但尚不清楚患者和转诊医生需要了解哪些内容。
我们研究了可能影响移植可及性的特定项目特征的变异性。我们还对移植候选人、受者及其家庭成员进行了20次访谈和16次焦点小组讨论。向参与者展示了针对患者的搜索工具原型，并评估了其识别适合个体患者需求的项目的能力。
可能影响移植可及性的受者和供者特征分布，如接受医疗补助的受者，在不同项目中存在差异（所有差异均<0.01）。出现了几个与移植可及性印象和针对患者的搜索功能可用性相关的主题。对原型和结果的看法各不相同，但总体上是积极的，并支持提供项目层面数据的个性化搜索。参与者揭示了识别和评估移植项目的重大障碍，并建议针对患者的搜索结果可减少选择项目时的焦虑。
提供针对患者的工具受到患者重视，对于最大限度地提高移植可及性很重要。
