A Patient-Centric Tool to Facilitate Goal Attainment Scaling in Neurogenic Bladder and Bowel Dysfunction: Path to Individualization.

OBJECTIVES: People with neurogenic bladder and/or bowel dysfunction experience diverse challenges that can be difficult to evaluate with standardized outcome measures. Goal attainment scaling (GAS) is an individualized, patient-centric outcome measure that enables patients/caregivers to identify and track their own treatment goals. Because creating goals de novo can be cumbersome, we aimed to develop a neurogenic bladder/bowel dysfunction goal menu to facilitate goal attainment scaling uptake and use. METHODS: We conducted a workshop with 6 expert clinicians to develop an initial menu. Individual interviews with 12 people living with neurogenic bladder and/or bowel dysfunction and 2 clinician panels with 5 additional experts aided us in refining the menu. A thematic framework analysis identified emergent themes for analysis and reporting. RESULTS: Interview participants were adults (median = 36 years, range 25-58), most with spinal cord injury (75%; 9/12). Of 24 goals identified initially, 2 (8%) were not endorsed and were removed, and 3 goals were added. Most participants listed "Impact on Life" goals (eg, Exercise, Emotional Well-Being) among their 5 most important goals (58%; 35/60). Three main themes emerged: challenges posed by incontinence, limitations on everyday life, and need for personalized care. CONCLUSIONS: We developed a clinical outcome assessment tool following a multistep process of representative stakeholder engagement. This patient-centric tool consists of 25 goals specific to people living with neurogenic bladder and/or bowel dysfunction. Asking people what matters most to them can identify important constructs that clinicians might have overlooked.

Which factors make clean intermittent (self) catheterisation successful?

AIMS AND OBJECTIVES: To explore which factors determine successful intermittent catheterisation. BACKGROUND: Intermittent catheterisation is a safe, effective treatment and is associated with improved quality of life, although negative issues are reported. Factors which determine adherence are largely unknown. An additional qualitative study was conducted to gain insight into patient's experience with intermittent catheterisation in everyday life. DESIGN: A prospective multicentre study was conducted between March 2012-March 2013 with one year follow-up. METHODS: Patients with a variety of diagnoses referred to the outpatient clinic, ≥18 years, performed catheterisation at least once a day for ≥3 months were included. Data were obtained by patients' specific questionnaire Visual Analog Scale of quality of life regarding voiding problems, a questionnaire about catheterisation in daily practice, King's Health questionnaire, and a short questionnaire after one year. RESULTS: Of the 129 (72 male) patients, mean age 62 (22-86) years, seven died and 63 stopped, 32/63 (50%) due to recovered bladder function. Fifty-nine (47%) continued to perform catheterisation after one year. Forty-seven (86%) patients reported catheterisation had become part of their life or had a positive effect on their life. A weak correlation was found between increasing age and cessation of catheterisation. Visual Analogue Scale - score on quality of life improved for the total group. The King's Health questionnaire identified in the total group that the impact of the bladder problem in daily life, limitations in daily activities and negative emotions decreased over time. CONCLUSION: Adherence of successful intermittent catheterisation can be influenced negatively by increasing age. However, we think catheterisation should be considered as an option for older patients. We could not conform that if intermittent catheterisation was beneficial for the patient, it would positively influence adherence. Further prospective studies on adherence of intermittent catheterisation in larger groups need to be undertaken. RELEVANCE TO CLINICAL PRACTICE: After implementation of the national guideline in 2008, we were able to perform a multicentre study. This prospective study gives insight into patients who were undertaking intermittent catheterisation and which factors determine successful intermittent catheterisation adherence. After following the national guideline, we found no factors for additional interventions in assessment or coaching intermittent catheterisation. Post void residual volume turned out to be not a predictor for the necessity of intermittent catheterisation. A large group of patients could discontinue intermittent catheterisation during follow-up due to bladder function recovery. Although a weak correlation was found between increasing age and ceasing of catheterisation, we think the older can benefit from intermittent catheterisation. In the first period, additional support, for example given by a district nurse, may be necessary for this group to achieve better outcomes.