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      Patient reported outcome measures in neurogenic bladder

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          Abstract

          Many interventions for neurogenic bladder patients are directed towards improving quality of life (QOL). Patient reported outcome measures (PROMs) are the primary method of evaluating QOL, and they provide an important quantification of symptoms which can’t be measured objectively. Our goal was to review general measurement principles, and identify and discuss PROMs relevant to neurogenic bladder patients. We identify two recent reviews of the state of the literature and updated the results with an additional Medline search up to September 1, 2015. Using the previous identified reviews, and our updated literature review, we identified 16 PROMs which are used for the assessment of QOL and symptoms in neurogenic bladder patients. Several are specifically designed for neurogenic bladder patients, such as the Qualiveen (for neurogenic bladder related QOL), and the Neurogenic Bladder Symptom Score (NBSS) (for neurogenic bladder symptoms). We also highlight general QOL measures for patients with multiple sclerosis (MS) and spinal cord injury (SCI) which include questions about bladder symptoms, and incontinence PROMs which are commonly used, but not specifically designed for neurogenic bladder patients. It is essential for clinicians and researchers with an interest in neurogenic bladder to be aware of the current PROMs, and to have a basic understanding of the principals of measurement in order to select the most appropriate one for their purpose.

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          The Multiple Sclerosis Impact Scale (MSIS-29): a new patient-based outcome measure.

          J. Höbart (2001)
          Changes in health policy have underlined the importance of evidence-based clinical practice and rigorous evaluation of patient-based outcomes. As patient-based outcome measurement is particularly important in treatment trials of multiple sclerosis, a number of disease-specific instruments have been developed recently. One limitation of these instruments is that none was developed using the standard psychometric approach of reducing a large item pool generated from people with multiple sclerosis. Consequently, an outcome measure for clinical trials of multiple sclerosis that is disease specific and combines patient perspective with rigorous psychometric methods will complement existing instruments. The aim of this study was to develop such a measure. Standard psychometric methods were used. A pool of 129 questionnaire items was generated from interviews with 30 people with multiple sclerosis, expert opinion and literature review. The questionnaire was administered by postal survey to 1530 people selected randomly from the Multiple Sclerosis Society membership database. Redundant items and those with limited measurement properties were removed. The remaining items (n = 41) were grouped into scales using factor analysis, and then refined to form the Multiple Sclerosis Impact Scale (MSIS-29), an instrument measuring the physical (20 items) and psychological (nine items) impact of multiple sclerosis. Five psychometric properties of the MSIS-29 (data quality, scaling assumptions, acceptability, reliability and validity) were examined in a separate postal survey of 1250 Multiple Sclerosis Society members. A preliminary responsiveness study of the MSIS-29 was undertaken in 55 people admitted for rehabilitation and intravenous steroid treatment of relapses. The MSIS-29 satisfied all psychometric criteria. Data quality was excellent, missing data were low (maximum 3.9%), item test-re-test reliability was high (r = 0.65-0.90) and scale scores could be generated for >98% of respondents. Item descriptive statistics, item convergent and discriminant validity, and factor analysis indicated that it was legitimate to generate scores for MSIS-29 scales by summing items. MSIS-29 scales showed good variability, small floor and ceiling effects, high internal consistency (Cronbach's alpha
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            A new questionnaire to assess the quality of life of urinary incontinent women

            C Kelleher, L Cardozo, V Khullar … (1997)
            To design and validate a condition-specific quality of life questionnaire for the assessment of women with urinary incontinence, and to use the questionnaire to assess the quality of life of women with specific urodynamic diagnoses.
            Article 0 comments Cited 150 times – based on 0 reviews     Review now
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              Validation of the functional assessment of multiple sclerosis quality of life instrument.

              D Cella, V A Reder, G karabatsos … (1996)
              Based on scientific literature and interviews with clinicians and patients, we developed a quality of life instrument for use with people with MS called the Functional Assessment of Multiple Sclerosis (FAMS). The initial item pool consisted of 88 questions: 28 from the general version of the Functional Assessment of Cancer Therapy quality of life instrument, plus 60 generated by patients, providers, and literature review. The validation samples comprised a mail survey cohort (N = 377) and a clinical cohort (N = 56). Both cohorts provides evidence for internal consistency of the derived subscales, test-retest reliability, content validity, concurrent validity, and construct validity. Principal components and Rasch measurement model analyses were applied sequentially to survey sample data, reducing test length to 44 questions, divided into six subscales: mobility, symptoms, emotional well-being (depression), general contentment, thinking/fatigue, and family/social well-being. Fifteen initially rejected questions were added back as miscellaneous (unscored) questions for their potential clinical and empirical value. The mobility subscale was strongly predictive of the Kurtzke Extended Disability Status Scale and the Scripps Neurologic Rating Scales. The other five subscales were not, indicating they measure aspects of patient quality of life not captured by the neurologic exam. The final 59-item English language instrument (FAMS version 2) is available for inclusion in clinical trials and clinical practice.
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                Author and article information

                Journal
                Journal ID (nlm-ta): Transl Androl Urol
                Journal ID (iso-abbrev): Transl Androl Urol
                Journal ID (publisher-id): TAU
                Title: Translational Andrology and Urology
                Publisher: AME Publishing Company
                ISSN (Electronic): 2223-4691
                Publication date (Print and electronic): February 2016
                Publication date (Print): February 2016
                Volume: 5
                Issue: 1
                Pages: 22-30
                Affiliations
                Department of Surgery, Western University, London, ON N6A 4V2, Ontario, Canada; Department of Epidemiology and Biostatistics, Western University, London, Ontario, Canada
                Author notes

                Contributions: (I) Conception and design: All authors; (II) Administrative support: None; (III) Provision of study materials or patients: None; (IV) Collection and assembly of data: R Clark; (V) Data analysis and interpretation: All authors; (VI) Manuscript writing: All authors; (VII) Final approval of manuscript: All authors.

                Correspondence to: Dr. Blayne Welk, MD, FRCSC, M.Sc. Western University, Room B4-667, St Joseph’s Health Care, 268 Grosvenor St., London, ON N6A 4V2, Ontario, Canada. Email: Blayne.Welk@ 123456sjhc.london.on.ca .
                Article
                Publisher ID: tau-05-01-022
                DOI: 10.3978/j.issn.2223-4683.2015.12.05
                PMC ID: 4739978
                PubMed ID: 26904409
                SO-VID: 998efb29-b7aa-4e70-855d-02fe4b8c2db8
                Copyright © 2016 Translational Andrology and Urology. All rights reserved.
                History
                Date received : 03 September 2015
                Date accepted : 16 December 2015
                Categories
                Subject: Review Article

                Keywords: patient reported outcomes,urinary bladder,neurogenic,urinary incontinence,quality of life (qol)
                Data availability:
                Keywords: patient reported outcomes, urinary bladder, neurogenic, urinary incontinence, quality of life (qol)

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