Experiences and barriers with home bladder manometry in the pediatric neurogenic bladder population: A qualitative study

Background: Patients with neurogenic bladder are at risk of developing renal deterioration secondary to increased intravesical pressures. To date, urodynamics is the gold standard test to properly assess bladder dynamics. Home bladder manometry is a low-cost and simple method to evaluate bladder pressures and volumes during clean intermittent catheterization (CIC). Previous literature has shown that home manometry measurements correlate with urodynamic pressures and hydronephrosis on ultrasound. However, no studies have evaluated the challenges and barriers faced by caregivers with the process.

Objective: Our objective was to investigate the experiences and perceptions of caregivers, healthcare providers, and nurses with home manometry.

Study design: We conducted semi-structured interviews and focus group discussions with 23 stakeholders. Stakeholders included caregivers of pediatric spina bifida neurogenic bladder patients, providers, and nursing staff. Grounded Theory Methods were used to analyze transcripts and identify preliminary concepts that described attitudes towards the current home bladder manometry process.

Results: Interview participants were composed of 10 (43 %) caregivers, 9 (40 %) healthcare providers, and 4 (17 %) nursing staff. The mean age was 39 years (range 26-66). The four themes identified during discussions were perspectives on home manometry, patient-specific characteristics, challenges with home manometry, and learning experience. All caregivers expressed understanding and agreement with the purpose and importance of home manometry. Emergent concepts identified as targets for improvement were the need for standardization of teaching processes with focus on hands-on practice, understanding of patient characteristics and the home environment that make the process more challenging, and the need for appropriate materials including extension tubing and catheters.

Conclusions: Home bladder manometry is a feasible and beneficial way for neurogenic bladder patients to monitor their bladder pressures and volumes at home. This qualitative study offers valuable insights into the experiences and viewpoints of caregivers, healthcare providers, and nurses regarding both home manometry and the general experience with CIC.