{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,2]],"date-time":"2026-04-02T11:27:24Z","timestamp":1775129244720,"version":"3.50.1"},"reference-count":28,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2020,10,28]],"date-time":"2020-10-28T00:00:00Z","timestamp":1603843200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"funder":[{"DOI":"10.13039\/100006093","name":"Patient-Centered Outcomes Research Institute","doi-asserted-by":"publisher","award":["AD\u20101310\u201008215"],"award-info":[{"award-number":["AD\u20101310\u201008215"]}],"id":[{"id":"10.13039\/100006093","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["PM&amp;R"],"published-print":{"date-parts":[[2021,3]]},"abstract":"<jats:sec><jats:title>Objective<\/jats:title><jats:p>To describe the scoring approach, considering interpretability, validity, and use, of a new patient\u2010centered patient reported outcome (PRO), the Urinary Symptom Questionnaire for Neurogenic Bladder\u2010Intermittent Catheter version (USQNB\u2010IC).<\/jats:p><\/jats:sec><jats:sec><jats:title>Design<\/jats:title><jats:p>Subject matter experts (researchers, clinicians, a consumer, a psychometrician) classified USQNB\u2010IC items. Profiles were then composed based on self\u2010management decisions made by patients; patient management decisions made by clinicians; and research\u2010oriented decisions made by investigators. Participants in an 18\u2010month pilot study completed the USQNB\u2010IC every week. Differences in decisions based on traditional \u2018total scores\u2019 and profiles were examined. Validity was defined based on alignment of scoring method with decisions.<\/jats:p><\/jats:sec><jats:sec><jats:title>Setting<\/jats:title><jats:p>A new set of patient\u2010centered PROs enable monitoring and decision\u2010making around urinary signs and symptoms among people with neurogenic bladder (NB).<\/jats:p><\/jats:sec><jats:sec><jats:title>Participants<\/jats:title><jats:p>Classifications of USQNB\u2010IC items by subject matter experts. Utility of the classifications and profiles that were created was assessed using weekly responses from the 6\u2010month baseline period from 103 participants in a pilot study.<\/jats:p><\/jats:sec><jats:sec><jats:title>Interventions<\/jats:title><jats:p>Not applicable.<\/jats:p><\/jats:sec><jats:sec><jats:title>Main Outcome Measures<\/jats:title><jats:p>Classification of the 29 symptoms resulted in four categories with exchangeability within\u2010category and nonexchangeability across categories. The burden of each symptom type is one approach to scoring the USQNB\u2010IC. 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\u2010IC.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>USQNB\u2010IC items are not all exchangeable. Four symptom classifications comprise within\u2010class exchangeable items. Five profiles emerged to summarize these items to promote decision\u2010making and identification of change over time. Both ways to \u201cscore\u201d the USQNB\u2010IC are described and discussed.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusions<\/jats:title><jats:p>\u201cProfiling\u201d promotes valid and interpretable decisions by patients and clinicians, based on a patient's urinary symptoms with the USQNB\u2010IC cross\u2010sectionally and longitudinally. Alternatively, four subsets of the 29 USQNB\u2010IC symptoms can be used as continuous outcomes representing \u201cburden\u201d in clinical management or research.<\/jats:p><\/jats:sec>","DOI":"10.1002\/pmrj.12479","type":"journal-article","created":{"date-parts":[[2020,8,29]],"date-time":"2020-08-29T08:25:50Z","timestamp":1598689550000},"page":"229-240","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":5,"title":["Clinical Profiles and Symptom Burden Estimates to Support Decision\u2010Making Using the Urinary Symptom Questionnaire for People with Neurogenic Bladder (USQNB) using Intermittent Catheters"],"prefix":"10.1002","volume":"13","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-1121-2119","authenticated-orcid":false,"given":"Rochelle E.","family":"Tractenberg","sequence":"first","affiliation":[{"name":"Collaborative for Research on Outcomes and \u2013Metrics  Silver Spring MD USA"},{"name":"Departments of Neurology and Biostatistics, Bioinformatics &amp; Biomathematics Georgetown University  Washington DC USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Suzanne L.","family":"Groah","sequence":"additional","affiliation":[{"name":"Department of Rehabilitation Medicine Georgetown University  Washington DC USA"},{"name":"MedStar National Rehabilitation Hospital  Washington DC USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Amanda K.","family":"Rounds","sequence":"additional","affiliation":[{"name":"MedStar National Rehabilitation Hospital  Washington DC USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Elizabeth F.","family":"Davis","sequence":"additional","affiliation":[{"name":"MedStar National Rehabilitation Hospital  Washington DC USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Inger H.","family":"Ljungberg","sequence":"additional","affiliation":[{"name":"MedStar National Rehabilitation Hospital  Washington DC USA"},{"name":"MedStar Health Research Health Institute  Hyattsville MD USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jamie K.","family":"Frost","sequence":"additional","affiliation":[{"name":"Collaborative for Research on Outcomes and \u2013Metrics  Silver Spring MD USA"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Manon M.","family":"Schladen","sequence":"additional","affiliation":[{"name":"Department of Rehabilitation Medicine Georgetown University  Washington DC USA"},{"name":"MedStar National Rehabilitation Hospital  Washington DC USA"},{"name":"MedStar Health Research Health Institute  Hyattsville MD USA"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"311","published-online":{"date-parts":[[2020,10,28]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1177\/2168479015622667"},{"key":"e_1_2_7_3_1","volume-title":"Quality of life: the assessment, analysis, and reporting of patientreported outcomes","author":"Fayers PM","year":"2016"},{"key":"e_1_2_7_4_1","doi-asserted-by":"publisher","DOI":"10.4236\/ojpp.2013.34A005"},{"key":"e_1_2_7_5_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11136-010-9606-8"},{"key":"e_1_2_7_6_1","doi-asserted-by":"publisher","DOI":"10.1186\/1477-7525-4-79"},{"key":"e_1_2_7_7_1","first-page":"13","volume-title":"Educational Measurement","author":"Messick S","year":"1989"},{"key":"e_1_2_7_8_1","doi-asserted-by":"publisher","DOI":"10.1037\/a0026975"},{"key":"e_1_2_7_9_1","doi-asserted-by":"publisher","DOI":"10.1037\/0033-2909.110.2.305"},{"key":"e_1_2_7_10_1","article-title":"Preliminary validation of the urinary symptom questionnaire for individuals with neuropathic bladder using intermittent catheterization (USQNB\u2010IC): a patient\u2010centered patient reported outcome","volume":"13","author":"Tractenberg RE","journal-title":"PLOS ONE"},{"key":"e_1_2_7_11_1","unstructured":"TractenbergR FrostJ RoundsAK LjungbergIH GroahSL.(In Revisions.) 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