1. A Patient-Centric Tool to Facilitate Goal Attainment Scaling in Neurogenic Bladder and Bowel Dysfunction: Path to Individualization
- Author
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Jimena Goldstine, Susan E. Howlett, Hanny Cobussen-Boekhorst, Mikel Gray, Gary Inglese, Joke Beekman, Stephanie Vaughn, Kenneth Rockwood, Kari Knox, Alessio Conti, Amanda England, Gianna M. Rodriguez, and Justin Stanley
- Subjects
Adult ,Diarrhea ,Male ,Stakeholder engagement ,Outcome assessment ,Patient Care Planning ,Goal Attainment Scaling ,03 medical and health sciences ,All institutes and research themes of the Radboud University Medical Center ,0302 clinical medicine ,Nursing ,Surveys and Questionnaires ,Outcome Assessment, Health Care ,Humans ,Medicine ,030212 general & internal medicine ,Urinary Bladder, Neurogenic ,Everyday life ,Spinal cord injury ,business.industry ,030503 health policy & services ,Health Policy ,Public Health, Environmental and Occupational Health ,Outcome measures ,Middle Aged ,medicine.disease ,Bowel dysfunction ,Reconstructive and regenerative medicine Radboud Institute for Molecular Life Sciences [Radboudumc 10] ,Patient centric ,Female ,0305 other medical science ,business ,Constipation - Abstract
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.
- Published
- 2021
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