1. ConCaRe™ Continence Care Registry: Using Longitudinal Data to Better Understand the Intermittent Self Catheterization User Experience.
- Author
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Simmons, Jessica, Newman, Diane, Gordon, Daniel, and Riemer, Mike
- Subjects
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REPORTING of diseases , *HEALTH outcome assessment , *CONFERENCES & conventions , *INCONTINENCE management , *CATHETERIZATION - Abstract
Purpose: While intermittent catheterization is the "gold-standard" to manage lower urinary tract dysfunction (LUTD), limited data exist on the daily experiences of individuals using intermittent self-catheterization (ISC).1,2 A longitudinal study collecting self-reported data from individuals who perform ISC to manage bladder emptying would provide insight into their daily use, habits, and experiences.3,4 This study aims to build an electronic patient-reported outcomes registry of adults who use ISC long-term. Methodology: ConCaReTM continence care registry is a multinational registry designed as a prospective, observational longitudinal study among individuals who perform ISC. Questionnaires are electronically distributed monthly for one year, then quarterly for up to five years and include the Intermittent Self- Catheterization Questionnaire, EuroQoL-5D, and RAND modified Medical Outcomes Study Social Support Survey, which explore quality of life and satisfaction, health care utilization, and factors influencing catheter choice.5,6,7 Results: To date, baseline data from 93 (71.0% US; 29.0% CA) participants aged 20-86 years (average=51.4; median=53) (73.1% male) are presented. Eighty (80) of the 93 participants (86.0%) reported having conditions associated with neurogenic LUTD. Out of 42 participants with NLUTD surveyed, 45.2% reported a urologist recommended starting ISC. Out of all 80 subjects with NLUTD, most received their initial ISC training from a nurse (71.3%). Fifty-seven (57) of the 80 subjects with neurogenic bladder (71.3%) reported having a spinal cord injury (SCI). Average time since SCI was 9.9 years (range= [1.7, 39.2]; median=5.8). Conclusions: As recruitment approaches the target [600 participants], outcomes will continue to be monitored over time. Data yielded from the ConCaReTM continence care registry will help to characterize ISC utilization in different populations by gender, age, location, and comorbidities. Implications for Practice: A better understanding of the ISC user's experience will help to inform clinical practice to identify areas of unmet patient needs and opportunities for clinician support. [WIRB;IRB Study #: 1304189; ClinicalTrial.gov Identifier NCT04924569] [ABSTRACT FROM AUTHOR]
- Published
- 2023