Clinical Profiles and symptom burden estimates to Support Decision-Making using the Urinary Symptom Questionnaire for People with Neurogenic Bladder (USQNB).

MedStar author(s):
Citation: Pm & R. 13(3):229-240, 2021 03.PMID: 32860333Institution: MedStar National Rehabilitation NetworkForm of publication: Journal ArticleMedline article type(s): Journal ArticleSubject headings: *Urinary Bladder, Neurogenic | Catheters | Humans | Pilot Projects | Surveys and Questionnaires | Urinary Bladder, Neurogenic/di [Diagnosis] | Urinary Bladder, Neurogenic/et [Etiology] | Urinary Bladder, Neurogenic/th [Therapy] | Urinary CatheterizationYear: 2021ISSN:
  • 1934-1482
Name of journal: PM & R : the journal of injury, function, and rehabilitationAbstract: CONCLUSIONS: "Profiling" promotes valid and interpretable decisions by patients and clinicians, based on a patient's urinary symptoms with the USQNB-IC cross-sectionally and longitudinally. Alternatively, four subsets of the 29 USQNB-IC symptoms can be used as continuous outcomes representing "burden" in clinical management or research. This article is protected by copyright. All rights reserved. Copyright This article is protected by copyright. All rights reserved.DESIGN: Subject matter experts (researchers, clinicians, a consumer, a psychometrician) classified USQNB-IC items. Profiles were then composed based on self-management decisions made by patients; patient management decisions made by clinicians; and research-oriented decisions made by investigators. Participants in an 18-month pilot study completed the USQNB-IC every week. Differences in decisions based on traditional "total scores" and profiles were examined. Validity was defined based on alignment of scoring method with decisions.INTERVENTIONS: Not Applicable.MAIN OUTCOME MEASURES: Classification of the 29 symptoms resulted in 4 categories with exchangeability within-category and non-exchangeability across categories. Burden of each symptom type is one approach to scoring the USQNB-IC. Five profiles, based on these categories, emerged based on- and supportive of - decisions to be made based on symptoms, representing a categorical approach to scoring the USQNB-IC.OBJECTIVE: To describe the scoring approach, considering interpretability, validity, and use, of a new patient-centered patient reported outcome (PRO), the Urinary Symptom Questionnaire for Neurogenic Bladder-Intermittent Catheter version (USQNB-IC).PARTICIPANTS: Subject matter experts' classifications USQNB-IC items. Utility of the classifications and profiles that were created was assessed using weekly responses from the 6-month baseline period from 103 participants in a pilot study.RESULTS: USQNB-IC items are not all exchangeable. Four symptom classifications comprise within-class exchangeable items. Five profiles emerged to summarize these items to promote decision-making and identification of change over time. Both ways to "score" the USQNB-IC are described and discussed.SETTING: A new set of patient-centered PROs enable monitoring and decision-making around urinary signs and symptoms among people with neurogenic bladder (NB).All authors: Davis EF, Frost JK, Groah SL, Ljungberg IH, Rounds AK, Schladen MM, Tractenberg REOriginally published: Pm & R. 2020 Aug 29Fiscal year: FY2021Digital Object Identifier: Date added to catalog: 2020-10-06
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Journal Article MedStar Authors Catalog Article 32860333 Available 32860333

CONCLUSIONS: "Profiling" promotes valid and interpretable decisions by patients and clinicians, based on a patient's urinary symptoms with the USQNB-IC cross-sectionally and longitudinally. Alternatively, four subsets of the 29 USQNB-IC symptoms can be used as continuous outcomes representing "burden" in clinical management or research. This article is protected by copyright. All rights reserved. Copyright This article is protected by copyright. All rights reserved.

DESIGN: Subject matter experts (researchers, clinicians, a consumer, a psychometrician) classified USQNB-IC items. Profiles were then composed based on self-management decisions made by patients; patient management decisions made by clinicians; and research-oriented decisions made by investigators. Participants in an 18-month pilot study completed the USQNB-IC every week. Differences in decisions based on traditional "total scores" and profiles were examined. Validity was defined based on alignment of scoring method with decisions.

INTERVENTIONS: Not Applicable.

MAIN OUTCOME MEASURES: Classification of the 29 symptoms resulted in 4 categories with exchangeability within-category and non-exchangeability across categories. Burden of each symptom type is one approach to scoring the USQNB-IC. Five profiles, based on these categories, emerged based on- and supportive of - decisions to be made based on symptoms, representing a categorical approach to scoring the USQNB-IC.

OBJECTIVE: To describe the scoring approach, considering interpretability, validity, and use, of a new patient-centered patient reported outcome (PRO), the Urinary Symptom Questionnaire for Neurogenic Bladder-Intermittent Catheter version (USQNB-IC).

PARTICIPANTS: Subject matter experts' classifications USQNB-IC items. Utility of the classifications and profiles that were created was assessed using weekly responses from the 6-month baseline period from 103 participants in a pilot study.

RESULTS: USQNB-IC items are not all exchangeable. Four symptom classifications comprise within-class exchangeable items. Five profiles emerged to summarize these items to promote decision-making and identification of change over time. Both ways to "score" the USQNB-IC are described and discussed.

SETTING: A new set of patient-centered PROs enable monitoring and decision-making around urinary signs and symptoms among people with neurogenic bladder (NB).

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