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

Mar 1, 2021, 00:00
10.1016/j.jval.2020.10.023
https://www.valueinhealthjournal.com/article/S1098-3015(20)34504-6/fulltext
Title : A Patient-Centric Tool to Facilitate Goal Attainment Scaling in Neurogenic Bladder and Bowel Dysfunction: Path to Individualization
Citation : https://www.valueinhealthjournal.com/action/showCitFormats?pii=S1098-3015(20)34504-6&doi=10.1016/j.jval.2020.10.023
First page : 413
Section Title : PATIENT-REPORTED OUTCOMES
Open access? : Yes
Section Order : 413

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.

Categories :
  • Gastrointestinal Disorders
  • Patient-Centered Research
  • Patient-reported Outcomes & Quality of Life Outcomes
  • Specialized Treatment Areas
  • Specific Diseases & Conditions
  • Stated Preference & Patient Satisfaction
Tags :
  • goal attainment scaling
  • neurogenic lower urinary tract dysfunction
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