UC Irvine

Background: Patients with neurogenic bladder require lifelong management and close follow-up to prevent upper tract damage and renal deterioration. To date, urodynamics is the gold standard test to properly assess bladder pressures and volumes. Home bladder manometry is a novel technique that provides a low-cost and simple method to evaluate bladder pressures and volumes during clean intermittent catheterizations. Previous literature has shown that home manometry measurements predict urodynamic and ultrasound findings; however, no literature has been published on challenges and barriers faced by caregivers with the process.Objective: This study serves as Phase 1 of a two-phase study to identify common themes concerning parent/caregiver attitudes surrounding home bladder manometry. We investigate the perspectives of home manometry through representative stakeholder engagement using key informant interviews and focus group discussions to explore perceptions and experiences with home manometry and to identify barriers and challenges with the process. Materials and Methods: We performed a qualitative study through interviews and focus group discussions with twenty-three stakeholders. Stakeholders included parents/caregivers, providers, and nursing staff. Parents were asked questions related to their home manometry education, experience with provided materials, technique when performing the procedure, and overall evaluative criteria. Nursing staff and providers were asked questions related to experiences teaching home manometry and their perspectives on family understanding. Grounded Theory Methods were used to analyze transcripts and identify preliminary concepts that described attitudes towards the current home bladder manometry process. Results: Twenty-three interview participants were adults (median age = 39 years, range 26-66): 10 were parents (43%), 9 (40%) providers, and 4 (17%) nursing staff. The six preliminary themes identified during discussions were an Evaluative measure, Maturation/Patient-Specific Characteristics, Sources of Error, Materials/Technology, Home Environment/Context, and Education/Learning Experience. The emergent concepts of improvement strategies and need for standardization became evident. Discussion: Home bladder manometry is a feasible and beneficial way for neurogenic bladder patients to monitor their bladder pressures and volumes at home. However, our study identified barriers that impact families and patient care. There is a need for standardization of instructions and modification of materials to improve these patient/family experiences. The way that home manometry is presented and taught to families can impact their understanding and ability to execute the procedure at home. The perspectives of all important stakeholders helped to highlight barriers and identify solutions that can be implemented to improve the home manometry process.