Health Outcomes Division, College of Pharmacy.
Department of Internal Medicine, Dell Medical School, University of Texas at Austin, Texas.
Pediatrics. 2024 Jun 1;153(6). doi: 10.1542/peds.2023-064207.
To identify the most important attributes related to the process of achieving, and outcomes associated with, successful care for differences of sex development (DSD).
We developed a best-worst scaling survey administered to 520 DSD stakeholders, including individuals or family members of those with DSD, health care specialists, and patient support and advocacy representatives. Fourteen process-related attributes and 16 outcome-related attributes were identified through qualitative research. We estimated relative importance scores and coefficients from regression analysis to understand the relative importance of attributes and conducted latent class analysis to explore heterogeneity in preferences.
The 3 most important process attributes were (1) good communication between care team and patient/family, (2) care team educated patient/family about condition, and (3) care team incorporates the values of patient/family. The 3 most important outcome attributes were (1) patient satisfaction, (2) patient mental health, and (3) treatment maintains physical health. Latent class analyses showed that respondents had heterogeneous preferences. For process-related attributes, we identified 3 respondent groups: "Patient autonomy and support" (46% of respondents), "Education and care transitions" (18%), and "Shared decision-making" (36%). For outcome-related attributes, we identified 2 respondent groups: "Preserving function and appearance" (59% of respondents) and "Patient health and satisfaction" (41%).
Outcomes such as patient satisfaction and health were the most important outcome attributes, and good communication and education from the care team were the most important process attributes. Respondents expressed heterogeneous preferences for selected DSD care attributes that providers should consider to improve satisfaction with and quality of DSD care.
确定与性别发育差异（DSD）的治疗成功相关的过程属性和结果属性中最重要的属性。
我们开发了最佳最差标度调查，对 520 名 DSD 利益相关者进行了调查，包括 DSD 患者或其家庭成员、医疗保健专家、患者支持和宣传代表。通过定性研究确定了 14 个与过程相关的属性和 16 个与结果相关的属性。我们从回归分析中估计相对重要性得分和系数，以了解属性的相对重要性，并进行潜在类别分析以探索偏好的异质性。
最重要的 3 个过程属性为（1）治疗团队与患者/家庭之间的良好沟通，（2）治疗团队向患者/家庭教育病情，以及（3）治疗团队纳入患者/家庭的价值观。最重要的 3 个结果属性为（1）患者满意度，（2）患者心理健康，以及（3）治疗保持身体健康。潜在类别分析表明，受访者的偏好存在异质性。对于与过程相关的属性，我们确定了 3 个受访者群体：“患者自主权和支持”（46%的受访者）、“教育和护理过渡”（18%）和“共同决策”（36%）。对于与结果相关的属性，我们确定了 2 个受访者群体：“维持功能和外观”（59%的受访者）和“患者健康和满意度”（41%）。
患者满意度和健康等结果是最重要的结果属性，而治疗团队的良好沟通和教育是最重要的过程属性。受访者对选定的 DSD 护理属性表达了不同的偏好，提供者应考虑这些属性以提高 DSD 护理的满意度和质量。
