Clinical Profiles and Symptom Burden Estimates to Support Decision-Making Using the Urinary Symptom Questionnaire for People with Neurogenic Bladder (USQNB) using Intermittent Catheters.

Autor: Tractenberg RE; Collaborative for Research on Outcomes and -Metrics, Silver Spring, MD, USA.; Departments of Neurology and Biostatistics, Bioinformatics & Biomathematics, Georgetown University, Washington, DC, USA., Groah SL; Department of Rehabilitation Medicine, Georgetown University, Washington, DC, USA.; MedStar National Rehabilitation Hospital, Washington, DC, USA., Rounds AK; MedStar National Rehabilitation Hospital, Washington, DC, USA., Davis EF; MedStar National Rehabilitation Hospital, Washington, DC, USA., Ljungberg IH; MedStar National Rehabilitation Hospital, Washington, DC, USA.; MedStar Health Research Health Institute, Hyattsville, MD, USA., Frost JK; Collaborative for Research on Outcomes and -Metrics, Silver Spring, MD, USA., Schladen MM; Department of Rehabilitation Medicine, Georgetown University, Washington, DC, USA.; MedStar National Rehabilitation Hospital, Washington, DC, USA.; MedStar Health Research Health Institute, Hyattsville, MD, USA.
Jazyk: angličtina
Zdroj: PM & R : the journal of injury, function, and rehabilitation [PM R] 2021 Mar; Vol. 13 (3), pp. 229-240. Date of Electronic Publication: 2020 Oct 28.
DOI: 10.1002/pmrj.12479
Abstrakt: 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).
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.
Setting: A new set of patient-centered PROs enable monitoring and decision-making around urinary signs and symptoms among people with neurogenic bladder (NB).
Participants: Classifications of USQNB-IC items by subject matter experts. 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.
Interventions: Not applicable.
Main Outcome Measures: Classification of the 29 symptoms resulted in four categories with exchangeability within-category and nonexchangeability across categories. The 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 according to symptoms, representing a categorical approach to scoring the USQNB-IC.
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.
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.
(© 2020 American Academy of Physical Medicine and Rehabilitation.)
Databáze: MEDLINE
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