Development and initial validation of the quality of life questionnaire for persons with polyhandicap (PolyQoL)

Assessment of motor and cognitive functions is recommended before clean intermittent catheterization training. Two validated instruments, the Functional Independence Measure (FIM) and the Pencil and Paper Test (PP-Test), are associated with the ability to learn self-catheterization in people with multiple sclerosis.We aimed to compare the performance of these tools in predicting the outcome of clean intermittent catheterization training in multiple sclerosis.All people with multiple sclerosis attending a tertiary neuro-urology department between 2011 and 2019 and eligible for clean intermittent catheterization were included in this retrospective study. The reference standard was the ability to perform at least 2 trials of self-catheterization at the end of the training session. The 2 index tests, the FIM and PP-Test, were administered before the teaching session. Their diagnostic performance was estimated by calculating sensitivity, specificity, and area under the receiver operating characteristic curve (AUC). The AUC values were compared by a two-sided DeLong test.We included 395 individuals (mean [SD] age 49.8 [12] years; 70% women). At the end of the session, 87% of the patients succeeded in learning self-catheterization. The optimal cut-offs for the FIM (107) and PP-Test (13) were estimated, resulting in sensitivity of 73% (95% confidence interval [68–77) and 73% (67–77) and specificity 73% (59–84) and 63% (49–76), respectively. The AUC values for the FIM and PP-Test were significantly different (0.79 vs 0.73, p = 0.049). The effect size was large for both the FIM (Cohen's d = 1.14) and PP-Test (Cohen's d = 0.87).An FIM value ≥107 has the best specificity to predict outcome after clean intermittent catheterization training for people with multiple sclerosis. The sensitivity of the FIM and PP-Test is similar, and both have a large effect size for the outcome of self-catheterization training in multiple sclerosis.