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Measuring Urologic Quality of Life in People with Progressive Neurologic Conditions

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Urological Care for Patients with Progressive Neurological Conditions

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Abstract

Practitioners frequently need to assess a neurogenic bladder patient’s quality of life (QOL) regarding urinary symptoms, particularly when a neurologic condition is progressing. It is important to understand how health-related quality of life (HRQOL) and patient-reported outcome measures (PROMS) can be employed to improve the care of these patients. General QOL questionnaires, such as the Satisfaction with Life Survey (SF 35), can help a practitioner determine how the illness impacts perceptions on daily functioning. Urinary-specific instruments (International Prostate Symptom Score, Michigan Incontinence Severity Index, Incontinence Quality of Life) can be used to focus treatment to specific areas of urinary bother and determine the effectiveness of the interventions. Neurogenic bladder-specific questionnaires (Neurogenic Bladder Symptom Score, Qualiveen) allow practitioners to best appreciate the impact of bladder symptoms as they relate to the underlying disease. More work is needed to integrate QOL assessment into the care of the neurogenic bladder patient with a progressive disease.

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Bibliography

  1. Cox L, Cameron AP, Wittmann D, Papin JE, Mao-Draayer Y, He C, Clemens JQ, Wei JT, Sarma AV, Stoffel JT. Analysis of urinary symptoms and urodynamic findings in multiple sclerosis patients by gender and disease subtype. J Neurol Neurobiol. 2015;1(2). http://dx.doi.org/10.16966/2379-7150.105.

  2. Habashy E, Mahdy AE. Patient-Reported Outcome Measures (PROMs) in pelvic floor disorders. Curr Urol Rep. 2019;20(5):22.

    Article  Google Scholar 

  3. Patel DP, Myers JB, Lenherr SM. How to measure quality-of-life concerns in patients with neurogenic lower urinary tract dysfunction. Urol Clin North Am. 2017;44(3):345–53.

    Article  Google Scholar 

  4. Clark R, Welk B. Patient reported outcome measures in neurogenic bladder. Transl Androl Urol. 2016;5(1):22–30.

    PubMed  PubMed Central  Google Scholar 

  5. Barile JP, Reeve BB, Smith AW, Zack MM, Mitchell SA, Kobau R, et al. Monitoring population health for Healthy People 2020: evaluation of the NIH PROMIS(R) Global Health, CDC Healthy Days, and satisfaction with life instruments. Qual Life Res. 2013;22(6):1201–11.

    Article  Google Scholar 

  6. Cameron AP, Rodriguez GM, Gursky A, He C, Clemens JQ, Stoffel JT. The severity of bowel dysfunction in patients with neurogenic bladder. J Urol. 2015;194(5):1336–41.

    Article  Google Scholar 

  7. Patel DP, Elliott SP, Stoffel JT, Brant WO, Hotaling JM, Myers JB. Patient reported outcomes measures in neurogenic bladder and bowel: a systematic review of the current literature. Neurourol Urodyn. 2016;35(1):8–14.

    Article  Google Scholar 

  8. Burckhardt CS, Anderson KL, Archenholtz B, Hagg O. The Flanagan quality of life scale: evidence of construct validity. Health Qual Life Outcomes. 2003;1:59.

    Article  Google Scholar 

  9. Scarneciu I, Lupu S, Pricop C, Scarneciu C. Morbidity and impact on quality of life in patients with indwelling ureteral stents: a 10-year clinical experience. Pak J Med Sci. 2015;31(3):522–6.

    PubMed  PubMed Central  Google Scholar 

  10. Esnaola I, Benito M, Antonio-Agirre I, Freeman J, Sarasa M. Measurement invariance of the Satisfaction With Life Scale (SWLS)by country, gender and age. Psicothema. 2017;29(4):596–601.

    PubMed  Google Scholar 

  11. Emerson SD, Guhn M, Gadermann AM. Measurement invariance of the satisfaction with life scale: reviewing three decades of research. Qual Life Res. 2017;26(9):2251–64.

    Article  Google Scholar 

  12. Tarlov AR, Ware JE Jr, Greenfield S, Nelson EC, Perrin E, Zubkoff M. The Medical Outcomes Study. An application of methods for monitoring the results of medical care. JAMA. 1989;262(7):925–30.

    Article  CAS  Google Scholar 

  13. Rand SF. 36 https://www.rand.org/health/surveys_tools/mos/mos_core_36item.html.

  14. Lins L, Carvalho FM. SF-36 total score as a single measure of health-related quality of life: scoping review. SAGE Open Med. 2016;4:2050312116671725.

    Article  Google Scholar 

  15. Pavy-Le Traon A, Cotterill N, Amarenco G, Duerr S, Kaufmann H, Lahrmann H, et al. Clinical rating scales for urinary symptoms in Parkinson disease: critique and recommendations. Mov Disord Clin Pract. 2018;5(5):479–91.

    Article  Google Scholar 

  16. Barry MJ, Fowler FJ Jr, O’Leary MP, Bruskewitz RC, Holtgrewe HL, Mebust WK, et al. The American Urological Association symptom index for benign prostatic hyperplasia. The Measurement Committee of the American Urological Association. J Urol. 1992;148(5):1549–57. discussion 64

    Article  CAS  Google Scholar 

  17. Dray E, Crosby E, Grable A, Crescenze I, Stoffel J, Clemens JQ, et al. A retrospective analysis of surgical outcomes and risk factors for persistent post-operative symptoms following synthetic mid-urethral sling revision. J Urol. 2019:101097JU0000000000000246.

    Google Scholar 

  18. Dray E, Cameron AP, Clemens JQ, Qin Y, Covalschi D, Stoffel J. Does post-void residual volume predict worsening urological symptoms in patients with multiple sclerosis? J Urol. 2018;200(4):868–74.

    Article  Google Scholar 

  19. Winge K, Skau AM, Stimpel H, Nielsen KK, Werdelin L. Prevalence of bladder dysfunction in Parkinsons disease. Neurourol Urodyn. 2006;25(2):116–22.

    Article  Google Scholar 

  20. Suskind AM, Dunn RL, Morgan DM, DeLancey JO, McGuire EJ, Wei JT. The Michigan Incontinence Symptom Index (M-ISI): a clinical measure for type, severity, and bother related to urinary incontinence. Neurourol Urodyn. 2014;33(7):1128–34.

    Article  Google Scholar 

  21. Patrick DL, Martin ML, Bushnell DM, Yalcin I, Wagner TH, Buesching DP. Quality of life of women with urinary incontinence: further development of the incontinence quality of life instrument (I-QOL). Urology. 1999;53(1):71–6.

    Article  CAS  Google Scholar 

  22. Bushnell DM, Martin ML, Summers KH, Svihra J, Lionis C, Patrick DL. Quality of life of women with urinary incontinence: cross-cultural performance of 15 language versions of the I-QOL. Qual Life Res. 2005;14(8):1901–13.

    Article  Google Scholar 

  23. Schurch B, Denys P, Kozma CM, Reese PR, Slaton T, Barron R. Reliability and validity of the Incontinence Quality of Life questionnaire in patients with neurogenic urinary incontinence. Arch Phys Med Rehabil. 2007;88(5):646–52.

    Article  Google Scholar 

  24. Eyigor S, Karapolat H, Akkoc Y, Yesil H, Ekmekci O. Quality of life in patients with multiple sclerosis and urinary disorders: reliability and validity of Turkish-language version of Incontinence Quality of Life Scale. J Rehabil Res Dev. 2010;47(1):67–71.

    Article  Google Scholar 

  25. Welk B, Morrow S, Madarasz W, Baverstock R, Macnab J, Sequeira K. The validity and reliability of the neurogenic bladder symptom score. J Urol. 2014;192(2):452–7.

    Article  Google Scholar 

  26. Pariser JJ, Welk B, Kennelly M, Elliott SP, Neurogenic Bladder Research G. Reliability and validity of the neurogenic bladder symptom score in adults with cerebral palsy. Urology. 2019;128:107.

    Article  Google Scholar 

  27. Myers JB, Lenherr SM, Stoffel JT, Elliott SP, Presson AP, Zhang C, et al. Patient reported bladder-related symptoms and quality of life after spinal cord injury with different bladder management strategies. J Urol. 2019:101097JU0000000000000270.

    Google Scholar 

  28. Crescenze IM, Myers JB, Lenherr SM, Elliott SP, Welk B, Mph DO, et al. Predictors of low urinary quality of life in spinal cord injury patients on clean intermittent catheterization. Neurourol Urodyn. 2019.

    Google Scholar 

  29. Costa P, Perrouin-Verbe B, Colvez A, Didier J, Marquis P, Marrel A, et al. Quality of life in spinal cord injury patients with urinary difficulties. Development and validation of qualiveen. Eur Urol. 2001;39(1):107–13.

    Article  CAS  Google Scholar 

  30. Milinis K, Tennant A, C AY, Group TOS. Rasch analysis of SF-Qualiveen in multiple sclerosis. Neurourol Urodyn. 2017;36(4):1161–6.

    Article  CAS  Google Scholar 

  31. Bonniaud V, Bryant D, Parratte B, Guyatt G. Qualiveen, a urinary-disorder specific instrument: 0.5 corresponds to the minimal important difference. J Clin Epidemiol. 2008;61(5):505–10.

    Article  Google Scholar 

  32. Guinet-Lacoste A, Jousse M, Tan E, Caillebot M, Le Breton F, Amarenco G. Intermittent catheterization difficulty questionnaire (ICDQ): a new tool for the evaluation of patient difficulties with clean intermittent self-catheterization. Neurourol Urodyn. 2016;35(1):85–9.

    Article  Google Scholar 

  33. Guinet-Lacoste A, Kerdraon J, Rousseau A, Gallien P, Previnaire JG, Perrouin-Verbe B, et al. Intermittent catheterization acceptance test (I-CAT): a tool to evaluate the global acceptance to practice clean intermittent self-catheterization. Neurourol Urodyn. 2017;36(7):1846–54.

    Article  CAS  Google Scholar 

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Authors and Affiliations

  1. Division of Neurourology and Pelvic Reconstruction, Department of Urology, University of Michigan Medical School, Ann Arbor, MI, USA

    John T. Stoffel

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  1. John T. Stoffel
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Correspondence to John T. Stoffel .

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Editors and Affiliations

  1. Division of Neurourology and Pelvic Reconstruction, Department of Urology, University of Michigan Medical School, Ann Arbor, MI, USA

    John T. Stoffel

  2. Division of Urology, Department of Surgery, Greenville Health System, Greenville, SC, USA

    Elizabeth V. Dray

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Stoffel, J.T. (2020). Measuring Urologic Quality of Life in People with Progressive Neurologic Conditions. In: Stoffel, J.T., Dray, E.V. (eds) Urological Care for Patients with Progressive Neurological Conditions. Springer, Cham. https://doi.org/10.1007/978-3-030-23277-1_4

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  • DOI: https://doi.org/10.1007/978-3-030-23277-1_4

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  • Publisher Name: Springer, Cham

  • Print ISBN: 978-3-030-23276-4

  • Online ISBN: 978-3-030-23277-1

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