Abstract
Objectives
To survey continence specialists (CSs) about their assessment practice including their use of quality of life (QoL) information, perceived barriers, benefits and training needs.
Methods
Cross-sectional national postal survey of 624 practicing CSs in the UK. The questionnaire included open and closed questions relating to assessment practice.
Results
Completed questionnaires were returned by 299 (49%) CSs. Although 80% routinely assessed QoL, fewer than 54% demonstrated awareness of published questionnaires. The majority used structured questions (41%) many of which were non-standardised single items (26%) or locally developed questionnaires (19%). Only 22% used standardised patient-completed questionnaires such as the King’s Health Questionnaire and the Incontinence Quality of Life questionnaire. Perceived assessment barriers included the availability of appropriate questionnaires, patient disability, limited guidance, resources and time. Of those routinely assessing QoL, 77% wanted more support; the most useful media cited being the internet, followed by professional guidance and training courses.
Conclusion
Although QoL measurement is highly valued, there was wide variation in assessment practice with few adopting standardised approaches. Most CSs require greater guidance and support that takes account of their diverse needs. Familiar assessment barriers exist which the use of web-based information, in association with professional guidance might help overcome. Clear mechanisms are required to direct standardised and appropriate assessment practice.
Similar content being viewed by others
References
Norton, N. J. (2004). The perspective of the patient. Gastroenterology, 126, S175–S179. doi:10.1053/j.gastro.2003.10.081.
Miner, P. B., Jr. (2004). Economic and personal impact of fecal and urinary incontinence. Gastroenterology, 126, S8–S13. doi:10.1053/j.gastro.2003.10.056.
Department-of-Health. (2000). Good practice in continence services. UK Department of Health. http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4005851. Accessed 2 Mar 2009.
Scottish-Intercollegiate-Guidelines-Network SIGN 79. (2004). Management of urinary incontinence in primary care. A national clinical guideline. Edinburgh: Scottish-Intercollegiate-Guidelines-Network.
Winder, A. (1996). Assessment and investigation of urinary incontinence. In C. Norton (Ed.), Nursing for continence (2nd ed., pp. 33–75). Beaconsfield: Beaconsfield Publishers Ltd.
Getliffe, K., & Dolman, M. (1997). Normal and abnormal bladder function. In K. Getliffe & M. Dolman (Eds.), Promoting continence: A clinical and research resource (pp. 22–67). London: Bailliere Tindall.
Skevington, S. M., Day, R., Chisholm, A., & Trueman, P. (2005). How much do doctors use quality of life information in primary care? Testing the trans-theoretical model of behaviour change. Quality of Life Research, 14, 911–922. doi:10.1007/s11136-004-3710-6.
Bezjak, A., Ng, P., Skeel, R., Depetrillo, A. D., Comis, R., & Taylor, K. M. (2001). Oncologists’ use of quality of life information: Results of a survey of Eastern Cooperative Oncology Group Physicians. Quality of Life Research, 10, 1–13. doi:10.1023/A:1016692804023.
Morris, J., Perez, D., & McNoe, B. (1998). The use of quality of life data in clinical practice. Quality of Life Research, 7, 85–91. doi:10.1023/A:1008893007068.
Bellamy, N., Kaloni, S., Pope, J., Coulter, K., & Campbell, J. (1998). Quantitative rheumatology: A survey of outcome measurement procedures in routine rheumatology outpatient practice in Canada. The Journal of Rheumatology, 25, 852–858.
Burke, L., Stifano, T., Dawisha, S. (2006). Guidance for industry—patient-reported outcome measures: Use in medical product development to support labelling claims. Rockville, MD: U.S Department of Health and Human Sciences, Food and Drug Administration.
Garratt, A., Schmidt, L., Mackintosh, A., & Fitzpatrick, R. (2002). Quality of life measurement: Bibliographic study of patient assessed health outcome measures. British Medical Journal (Clinical Research Ed.), 324, 1417–1421. doi:10.1136/bmj.324.7351.1417.
McDowell, I. (2006). Measuring health: A guide to rating scales and questionnaires (3rd ed.). New York: Oxford University Press.
Bowling, A. (1995). Measuring disease: A review of disease-specific quality of life measurement scales. Buckingham: Open University Press.
Ganz, P. A. (2002). What outcomes matter to patients: A physician-researcher point of view. Medical Care, 40, III11–III19. doi:10.1097/00005650-200206001-00003.
Greenhalgh, J., Long, A. F., & Flynn, R. (2005). The use of patient reported outcome measures in routine clinical practice: Lack of impact or lack of theory? Social Science and Medicine, 60, 833–843. doi:10.1016/j.socscimed.2004.06.022.
Haywood, K., Marshall, S., & Fitzpatrick, R. (2006). Patient participation in the consultation process: A structured review of intervention strategies. Patient Education and Counseling, 63(1–2), 12–23. doi:10.1016/j.pec.2005.10.005.
Naughton, M. J., Donovan, J., Badia, X., Corcos, J., Gotoh, M., et al. (2004). Symptom severity and QoL scales for urinary incontinence. Gastroenterology, 126, S114–S123. doi:10.1053/j.gastro.2003.10.059.
Symonds, T. (2003). A review of condition-specific instruments to assess the impact of urinary incontinence on health-related quality of life. European Urology, 43, 219–225. doi:10.1016/S0302-2838(03)00045-9.
Fitzpatrick, R., Davey, C., Buxton, M. J., Jones, D. R. (1998). Evaluating patient-based outcome measures for use in clinical trials. Health Technology Assessment 2, I–Iv, 1–74.
Marshall, S., Haywood, K., & Fitzpatrick, R. (2006). Impact of patient-reported outcome measures on routine practice: A structured review. Journal of Evaluation in Clinical Practice, 12(5), 559–568. doi:10.1111/j.1365-2753.2006.00650.x.
Gough, I. R., & Dalgleish, L. I. (1991). What value is given to quality of life assessment by health professionals considering response to palliative chemotherapy for advanced cancer? Cancer, 68, 220–225. doi:10.1002/1097-0142(19910701)68:1<220::AID-CNCR2820680140>3.0.CO;2-H.
Meadows, K. A., Rogers, D., & Greene, T. (1998). Attitudes to the use of health outcome questionnaires in the routine care of patients with diabetes: A survey of general practitioners and practice nurses. The British Journal of General Practice, 48, 1555–1559.
Funk, S. G., Champagne, M. T., Wiese, R. A., & Tornquist, E. M. (1991). Barriers to using research findings in practice: The clinician’s perspective. Applied Nursing Research, 4(2), 90–95.
Estabrooks, C. A. (1999). Mapping the research utilization field in nursing. Canadian Journal of Nursing Research, 30(4), 273–294.
Gosling, S. A., Westabrook, J. I., & Spencer, R. (2004). Nurses’ use of online clinical evidence. Journal of Advanced Nursing, 47(2), 201–211. doi:10.1111/j.1365-2648.2004.03079.x.
National Institute of Health and Clinical Excellence (NICE). (2006). Guideline. Urinary incontinence: The management of urinary incontinence in women. Draft for consultation. http://guidance.nice.org.uk/page.aspx?o=311453. Accessed 2 Mar 2009.
Dillman, D. A. (2000). Mail and internet surveys. The tailored design method (2nd ed.). Chichester: John Wiley and Sons Inc.
McColl, E., Jacoby, A., Thomas, L., et al. (2001). Design and use of questionnaires: A review of best practice applicable to surveys of health service staff and patients. Health Technology Assessment, 5(31).
Ritchie, J., & Spencer, L. (1994). Chapter 9. Qualitative data analysis for applied policy research. In A. Bryman & R. G. Burgess (Eds.), Analyzing qualitative data. London: Routledge.
Kelleher, C., Cardozo, L. D., Khullar, C., & Salvatore, S. (1997). A new questionnaire to assess the quality of life of urinary incontinence women. BJOG, 104, 1374–1379. doi:10.1111/j.1471-0528.1997.tb11006.x.
Patrick, D. L., Martin, M. L., Bushnell, D. M., Yalcin, I., Wagner, T. H., & Buesching, D. P. (1999). Quality of life of women with urinary incontinence: Further development of the incontinence quality of life instrument (I-QoL). Urology, 53, 71–76. doi:10.1016/S0090-4295(98)00454-3.
Bayliss, V., & Slater, L. (2004). Pathways for evidence-based continence care. Nursing Standard, 19(9), 45–51.
The WHOQol Group. (1994). The development of the World Health Organisation Quality of Life Assessment Instrument (The WHOQoL). In J. Orley & W. Kuyken (Eds.), Quality of life assessment: International perspectives (pp. 41–47). Berlin: Springer-Verlag.
Ware, J. E. (1997). SF-36 Health Survey Manual and Interpretation Guide. The medical outcomes trust. Boston, USA: Nimrod Press.
The EuroQol-Group. (1990). EuroQol—A new facility for the measurement of health-related quality of life. The EuroQol Group. Health Policy (Amsterdam), 16, 199–208. doi:10.1016/0168-8510(90)90421-9.
Donovan, J. L., Kay, H. E., Peters, T. J., et al. (1997). Using ICSQoL to measure the impact of lower urinary tract symptoms on quality of life: Evidence from the ICS-“BHP” study. International Continence Society—Benign Prostate Hyperplasia. British Journal of Urology, 80, 712–721.
Jackson, S., Donovan, J., Eckford, B. S., Swithenbank, L., & Abrams, P. (1996). The Bristol Female Lower Urinary Tract Symptoms Questionnaire: Development and psychometric testing. British Journal of Urology, 77, 805–812.
Shumaker, S. A., Wyman, J. F., Uebersax, J. S., McClish, D., & Fantl, J. A. (1994). Health-related quality of life measures for women with urinary incontinence: The incontinence impact questionnaire and the urogenital distress inventory. Quality of Life Research, 3, 291–306. doi:10.1007/BF00451721.
Taylor, K. M., Macdonald, K. G., Bezjak, A., Ng, P., De Petrillo, A. D. (1996). Physician’s perspective on quality of life: An exploratory study of oncologists. Quality of Life Research, 5, 5–14. doi:10.1007/BF00435963.
Streiner, D., & Norman, G. (2003). Health measurement scales: A practical guide to their development and use (3rd ed.). Oxford: Oxford Medical Publications.
Hibbard, J. H. (2003). Engaging healthcare consumers to improve the quality of care. Medical Care, 41, I-61–I-70. doi:10.1097/00005650-200301001-00007.
Velikova, G., Booth, L., Smith, A. B., Brown, P. M., Lynch, P., Brown, J. M., et al. (2004). Measuring quality of life in routine oncology practice improves communication and patient well-being: A randomized controlled trial. Journal of Clinical Oncology, 22, 714–724. doi:10.1200/JCO.2004.06.078.
Haywood, K. L. (2006). Patient-reported outcome I: Measuring what matters in musculoskeletal care. Musculoskeletal Care, 4(4), 187–203. doi:10.1002/msc.94.
Jacobsen, P. B., Davis, K., Cella, D. (2002). Assessing quality of life in research and clinical practice. Oncology (Williston Park), 16(9, Suppl 10), 133–139.
Varni, J. W., Burwinkle, T. M., & Lane, M. M. (2005). Health-related quality of life measurement in pediatric clinical practice: An appraisal and precept for future research and application. Health and Quality of Life Outcomes, 16(3), 34. doi:10.1186/1477-7525-3-34.
Bellamy, N. (2005). Science of assessment. Annals of the Rheumatic Diseases, 64(Suppl 2), ii42–ii45. doi:10.1136/ard.2004.031567.
Author information
Authors and Affiliations
Corresponding author
Electronic supplementary material
Below is the link to the electronic supplementary material.
Rights and permissions
About this article
Cite this article
Haywood, K.L., Garratt, A.M., Carrivick, S. et al. Continence specialists use of quality of life information in routine practice: a national survey of practitioners. Qual Life Res 18, 423–433 (2009). https://doi.org/10.1007/s11136-009-9459-1
Received:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s11136-009-9459-1