People with neurogenic bladder and/or bowel dysfunction often suffer from highly individualized symptoms. It can be difficult to quantify change in an individual’s symptoms using standardized measurement tools, and points to the value of Patient—Centered Outcome Measures.
As a relatively new concept, Patient—Centered Outcome Measures (PCOM) aims to place patients, their families and carers at the heart of the decision making that concerns their health, rather than leave these assessments solely to the clinician.
Although PCOM and quality of life measures are often used for people with neurogenic bladder and bowel dysfunction, few assessment tools have been designed specifically for this population.
The aims of the current study were to describe the lived experiences and challenges faced by people affected by neurogenic bladder and/or bowel dysfunction and develop a clinically meaningful assessment tool for this population.
Interestingly, many indirectly related Impact on Life goals, including exercise and emotional well—being, were identified the most often as important
In this study, a multistep process, with input from both clinicians and patient stakeholders, was used to develop a menu of goals specifically tailored to the needs of people with neurogenic bladder and/or bowel dysfunction. Although some menu items are directly related to the condition e.g., difficulty with catheterization, others are indirectly related e.g., embarrassment and low self—esteem. Interestingly, many indirectly related Impact on Life goals, including exercise and emotional well—being, were identified the most often as important, and for these individuals, there was a direct relationship to their bowel and bladder dysfunction. Despite their importance, these outcomes frequently elude capture in standardized outcome measures.
The findings from this study show that, as in many other disease areas in which heterogeneity of needs and desires are common, an individualized approach based on patients’ preferences and expressed as goals, allows for a diverse range of outcomes to be measured. This can be achieved efficiently by having people who live with the disorder discuss what is important to them, as well as the potential generalizability of the resulting menu.
I never really actually had something like this where I could break down all different sections and just make goals.
Adult living with bladder and bowel dysfunction after SCI