Skip to main content

Advertisement

SpringerLink
Log in

Measuring pelvic floor disorder symptoms using patient-reported instruments: proceedings of the consensus meeting of the pelvic floor consortium of the American Society of Colon and Rectal Surgeons, the International Continence Society, the American Urogynecologic Society, and the Society of Urodynamics, Female Pelvic Medicine and Urogenital Reconstruction

  • CONSENSUS STATEMENT
  • Published:
Techniques in Coloproctology Aims and scope Submit manuscript

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

References

  1. McLeod LD, Coon CD, Martin SA, Fehnel SE, Hays RD (2011) Interpreting patient-reported outcome results: US FDA guidance and emerging methods. Expert Rev Pharmacoecon Outcomes Res 11:163–169

    PubMed  PubMed Central  Google Scholar 

  2. Karnofsky DA, Abelmann WH, Craver LF, Burchenal JH (1948) The use of the nitrogen mustards in the palliative treatment of carcinoma. With particular reference to bronchogenic carcinoma. Cancer. 1:634–656

    Google Scholar 

  3. Fayers P, Machin D (2007) Quality of life: the assessment, analysis and interpretation of patient-reported outcomes, 2nd edn. Wiley, Chichester

    Google Scholar 

  4. Rockwood TH, Church JM, Fleshman JW et al (1999) Patient and surgeon ranking of the severity of symptoms associated with fecal incontinence: the fecal incontinence severity index. Dis Colon Rectum 42:1525–1532

    CAS  PubMed  Google Scholar 

  5. U.S. Department of Health and Human Services FDA Center for Drug Evaluation and Research; U.S. Department of Health and Human Services FDA Center for Biologics Evaluation and Research; U.S. Department of Health and Human Services FDA Center for Devices and Radiological Health (2006) Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance. Health Qual Life Outcomes 4:79

  6. Kyte DG, Calvert M, van der Wees PJ, ten Hove R, Tolan S, Hill JC (2015) An introduction to patient-reported outcome measures (PROMs) in physiotherapy. Physiotherapy 101:119–125

    CAS  PubMed  Google Scholar 

  7. Keane C, Wells C, O’Grady G, Bissett IP (2017) Defining low anterior resection syndrome: a systematic review of the literature. Colorectal Dis 19:713–722

    CAS  PubMed  Google Scholar 

  8. Norton NJ (2004) The perspective of the patient. Gastroenterology 126(1 suppl 1):S175–S179

    PubMed  Google Scholar 

  9. Rockwood TH, Church JM, Fleshman JW et al (2000) Fecal Incontinence Quality of Life Scale: quality of life instrument for patients with fecal incontinence. Dis Colon Rectum 43:9–16

    CAS  PubMed  Google Scholar 

  10. Bharucha AE, Locke GR 3rd, Seide BM, Zinsmeister AR (2004) A new questionnaire for constipation and faecal incontinence. Aliment Pharmacol Ther 20:355–364

    CAS  PubMed  Google Scholar 

  11. Bharucha AE, Zinsmeister AR, Locke GR et al (2005) Prevalence and burden of fecal incontinence: a population-based study in women. Gastroenterology 129:42–49

    PubMed  Google Scholar 

  12. Bharucha AE, Zinsmeister AR, Locke GR, Schleck C, McKeon K, Melton LJ (2006) Symptoms and quality of life in community women with fecal incontinence. Clin Gastroenterol Hepatol 4:1004–1009

    PubMed  Google Scholar 

  13. Bharucha AE, Fletcher JG, Camilleri M, Edge J, Carlson P, Zinsmeister AR (2014) Effects of clonidine in women with fecal incontinence. Clin Gastroenterol Hepatol. 12:843–851 (quiz e44)

    CAS  PubMed  Google Scholar 

  14. Bharucha AE, Dunivan G, Goode PS et al (2015) Epidemiology, pathophysiology, and classification of fecal incontinence: state of the science summary for the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) workshop. Am J Gastroenterol 110:127–136

    PubMed  Google Scholar 

  15. Jorge JM, Wexner SD (1993) Etiology and management of fecal incontinence. Dis Colon Rectum 36:77–97

    CAS  PubMed  Google Scholar 

  16. Vaizey CJ, Carapeti E, Cahill JA, Kamm MA (1999) Prospective comparison of faecal incontinence grading systems. Gut 44:77–80

    CAS  PubMed  PubMed Central  Google Scholar 

  17. Hussain ZI, Lim M, Stojkovic S (2014) The test-retest reliability of fecal incontinence severity and quality-of-life assessment tools. Dis Colon Rectum 57:638–644

    PubMed  Google Scholar 

  18. Brown HW, Wexner SD, Lukacz ES (2013) Factors associated with care seeking among women with accidental bowel leakage. Female Pelvic Med Reconstr Surg 19:66–71

    PubMed  Google Scholar 

  19. Rothbarth J, Bemelman WA, Meijerink WJ et al (2001) What is the impact of fecal incontinence on quality of life? Dis Colon Rectum 44:67–71

    CAS  PubMed  Google Scholar 

  20. Bharucha AE, Seide BM, Zinsmeister AR, Melton LJ 3rd (2008) Relation of bowel habits to fecal incontinence in women. Am J Gastroenterol 103:1470–1475

    PubMed  PubMed Central  Google Scholar 

  21. Frank L, Kleinman L, Farup C, Taylor L, Miner P Jr (1999) Psychometric validation of a constipation symptom assessment questionnaire. Scand J Gastroenterol 34:870–877

    CAS  PubMed  Google Scholar 

  22. Spiegel BM, Hays RD, Bolus R et al (2014) Development of the NIH Patient-Reported Outcomes Measurement Information System (PROMIS) gastrointestinal symptom scales. Am J Gastroenterol 109:1804–1814

    PubMed  PubMed Central  Google Scholar 

  23. Marquis P, De La Loge C, Dubois D, McDermott A, Chassany O (2005) Development and validation of the Patient Assessment of Constipation Quality of Life questionnaire. Scand J Gastroenterol 40:540–551

    PubMed  Google Scholar 

  24. Heaton KW, O’Donnell LJ (1994) An office guide to whole-gut transit time. Patients’ recollection of their stool form. J Clin Gastroenterol. 19:28–30

    CAS  PubMed  Google Scholar 

  25. Cameron AP, Smith AR, Lai HH, LURN Study Group et al (2018) Bowel function, sexual function, and symptoms of pelvic organ prolapse in women with and without urinary incontinence. Neurourol Urodyn 37:2586–2596

    PubMed  PubMed Central  Google Scholar 

  26. Khanna D, Hays RD, Shreiner AB et al (2017) Responsiveness to change and minimally important differences of the patient-reported outcomes measurement information system gastrointestinal symptoms scales. Dig Dis Sci 62:1186–1192

    PubMed  PubMed Central  Google Scholar 

  27. Varma MG, Wang JY, Berian JR, Patterson TR, McCrea GL, Hart SL (2008) The constipation severity instrument: a validated measure. Dis Colon Rectum 51:162–172

    PubMed  Google Scholar 

  28. Rao SS, Bharucha AE, Chiarioni G et al (2016) Functional anorectal disorders. Gastroenterology. https://doi.org/10.1053/j.gastro.2016.02.009(Epub ahead of print)

    Article  PubMed  Google Scholar 

  29. Avery K, Donovan J, Peters TJ, Shaw C, Gotoh M, Abrams P (2004) ICIQ: a brief and robust measure for evaluating the symptoms and impact of urinary incontinence. Neurourol Urodyn 23:322–330

    PubMed  Google Scholar 

  30. Lemack GE, Zimmern PE (1999) Predictability of urodynamic findings based on the Urogenital Distress Inventory-6 questionnaire. Urology 54:461–466

    CAS  PubMed  Google Scholar 

  31. Donovan JL, Peters TJ, Abrams P, Brookes ST, de Rosette JJ, Schäfer W (2000) Scoring the short form ICSmaleSF questionnaire. International Continence Society. J Urol. 164:1948–1955

    CAS  PubMed  Google Scholar 

  32. Brookes ST, Donovan JL, Wright M, Jackson S, Abrams P (2004) A scored form of the Bristol Female Lower Urinary Tract Symptoms questionnaire: data from a randomized controlled trial of surgery for women with stress incontinence. Am J Obstet Gynecol 191:73–82

    PubMed  Google Scholar 

  33. Barry MJ, Fowler FJ Jr, O’Leary MP et al (1992) The American Urological Association symptom index for benign prostatic hyperplasia. The Measurement Committee of the American Urological Association. J Urol 148:1549–1564

    CAS  PubMed  Google Scholar 

  34. Jackson S, Donovan J, Brookes S, Eckford S, Swithinbank L, Abrams P (1996) The bristol female lower urinary tract symptoms questionnaire: development and psychometric testing. Br J Urol 77:805–812

    CAS  PubMed  Google Scholar 

  35. Uebersax JS, Wyman JF, Shumaker SA, McClish DK, Fantl JA (1995) Short forms to assess life quality and symptom distress for urinary incontinence in women: the Incontinence Impact Questionnaire and the Urogenital Distress Inventory. Continence Program for Women Research Group. Neurourol Urodyn 14:131–139

    CAS  PubMed  Google Scholar 

  36. Choi EPH, Lam CLK, Chin W-Y (2014) Validation of the International Prostate Symptom Score in Chinese males and females with lower urinary tract symptoms. Health Qual Life Outcomes 12:1

    PubMed  PubMed Central  Google Scholar 

  37. Bordeianou L, Hicks CW, Olariu A et al (2015) Effect of coexisting pelvic floor disorders on fecal incontinence quality of life scores: a prospective, survey-based study. Dis Colon Rectum 58:1091–1097

    PubMed  Google Scholar 

  38. Barber MD, Kuchibhatla MN, Pieper CF, Bump RC (2001) Psychometric evaluation of 2 comprehensive condition-specific quality of life instruments for women with pelvic floor disorders. Am J Obstet Gynecol 185:1388–1395

    CAS  PubMed  Google Scholar 

  39. Shumaker SA, Wyman JF, Uebersax JS, McClish D, Fantl JA, Continence Program in Women (CPW) Research Group (1994) Health-related quality of life measures for women with urinary incontinence: the Incontinence Impact Questionnaire and the Urogenital Distress Inventory. Qual Life Res 3:291–306

    CAS  PubMed  Google Scholar 

  40. Barber MD, Walters MD, Bump RC (2005) Short forms of two condition-specific quality-of-life questionnaires for women with pelvic floor disorders (PFDI-20 and PFIQ-7). Am J Obstet Gynecol 193:103–113

    CAS  PubMed  Google Scholar 

  41. Rosen RC, Riley A, Wagner G, Osterloh IH, Kirkpatrick J, Mishra A (1997) The international index of erectile function (IIEF): a multidimensional scale for assessment of erectile dysfunction. Urology 49:822–830

    CAS  PubMed  Google Scholar 

  42. Rosen RC, Cappelleri JC, Smith MD, Lipsky J, Peña BM (1999) Development and evaluation of an abridged, 5-item version of the International Index of Erectile Function (IIEF-5) as a diagnostic tool for erectile dysfunction. Int J Impot Res 11:319–326

    CAS  PubMed  Google Scholar 

  43. Wei JT, Dunn RL, Litwin MS, Sandler HM, Sanda MG (2000) Development and validation of the expanded prostate cancer index composite (EPIC) for comprehensive assessment of health-related quality of life in men with prostate cancer. Urology 56:899–905

    CAS  PubMed  Google Scholar 

  44. Unger JM, Vaidya R, Gore JL (2019) Key design and analysis principles for quality of life and patient-reported outcomes in clinical trials. Urol Oncol 37(324–330):8

    Google Scholar 

  45. Cappelleri JC, Rosen RC, Smith MD, Mishra A, Osterloh IH (1999) Diagnostic evaluation of the erectile function domain of the International Index of Erectile Function. Urology 54:346–351

    CAS  PubMed  Google Scholar 

  46. Rosen R, Brown C, Heiman J et al (2000) The Female Sexual Function Index (FSFI): a multidimensional self-report instrument for the assessment of female sexual function. J Sex Marital Ther 26:191–208

    CAS  PubMed  Google Scholar 

Download references

Acknowledgements

The authors thank Cameron W. Hunt, Brandeis University, Massachusetts; Sean Mc Walters, MPH, Massachusetts General Hospital Center for Quality, Massachusetts; and Ann Adams, BS, Department of Surgery at the Massachusetts General Hospital, Massachusetts. See Table 3 for members of The Pelvic Floor Disorders Consortium Working Group on Patient-Reported Outcomes. Some participated in more than one workgroup and are listed twice. The Pelvic Floor Disorders Consortium (PFDC) is a multidisciplinary organization of colorectal surgeons, urogynecologists, urologists, gynecologists, gastroenterologists, physiotherapists, and other advanced care practitioners. These practitioners, along with their respective societies, research foundations, and committees, are committed to enhancing the care of patients with pelvic floor disorders. The PFDC’s goal is to collaborate through clinical care and research to develop and evaluate educational programs, create clinical guidelines and algorithms, and promote overall quality of care in this unique population. The recommendations arising from this effort below represent the work product of the PFDC Working Group on Patient-Reported Outcomes. The objective of this workgroup, which included specialists from 12 countries, was to generate inclusive, rather than prescriptive, guidelines for all practitioners, irrespective of discipline, in the care and treatment of patients with pelvic floor disorders.

Funding

Pelvic Floor Consortium Consensus Meeting on Patient-Reported Outcomes was supported by the American Society of Colon and Rectal Surgeons (ASCRS) and the American Urogynecologic Society (AUGS). Reviewed and Endorsed by the American Society of Colon and Rectal Surgeons (ASCRS); the American Urogynecologic Society (AUGS) and the International Continence Society (ICS) and the Society of Urodynamics, Female Pelvic Medicine & Urogenital Reconstruction (SUFU). Reviewed and are supported by the Society of Gynecologic Surgeons (SGS).

Author information

Authors and Affiliations

  1. Section Colorectal Surgery, Center for Pelvic Floor Disorders, Massachusetts General Hospital and Harvard Medical School, 15 Parkman St, ACC 460, Boston, MA, 02114, USA

    L. G. Bordeianou

  2. Department of Urology, California School of Health Sciences, Los Angeles, CA, USA

    J. Anger

  3. Department Colorectal Surgery, McGill University, Montreal, Canada

    M. Boutros

  4. Department of Colorectal Surgery, University of Colorado, Denver, CO, USA

    E. Birnbaum

  5. Division of Colon and Rectal Surgery, University of California Irvine, Irvine, CA, USA

    J. C. Carmichael

  6. Department of Female Pelvic Floor Medicine and Reconstruction, University of Colorado, Denver, CO, USA

    K. Connell

  7. Department of Urology, Center for Pelvic Floor Disorders, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA

    E. J. B. De

  8. Department of Colorectal Surgery, University of Illinois, Chicago, IL, USA

    A. Mellgren

  9. Division of Gastroenterology, Center for Pelvic Floor Disorders, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA

    K. Staller

  10. Department of Colorectal Surgery, Pelvic Floor Center, University of Minnesota, Minneapolis, MN, USA

    S. A. Vogler

  11. Department of Female Pelvic Floor Medicine and Reconstruction Center for Pelvic Floor Disorders, Massachusetts General Hospital and Harvard Medical School, Boston, MA, USA

    M. M. Weinstein

  12. Department of Urology, Center for Men’s Health, University of California Irvine, Irvine, CA, USA

    F. A. Yafi

  13. Department of Colorectal Surgery, Cleveland Clinic Hospitals, Cleveland, OH, USA

    T. Hull

Authors
  1. L. G. Bordeianou
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. J. Anger
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. M. Boutros
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. E. Birnbaum
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. J. C. Carmichael
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. K. Connell
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. E. J. B. De
    View author publications

    You can also search for this author in PubMed Google Scholar

  8. A. Mellgren
    View author publications

    You can also search for this author in PubMed Google Scholar

  9. K. Staller
    View author publications

    You can also search for this author in PubMed Google Scholar

  10. S. A. Vogler
    View author publications

    You can also search for this author in PubMed Google Scholar

  11. M. M. Weinstein
    View author publications

    You can also search for this author in PubMed Google Scholar

  12. F. A. Yafi
    View author publications

    You can also search for this author in PubMed Google Scholar

  13. T. Hull
    View author publications

    You can also search for this author in PubMed Google Scholar

Consortia

Members of the Pelvic Floor Disorders Consortium Working Groups on Patient-Reported Outcomes

Corresponding author

Correspondence to L. G. Bordeianou.

Ethics declarations

Conflict of interest

The authors declare that they have no conflict of interest.

Ethical approval

This article does not contain any studies with human participants or animals performed by any of the authors

Informed consent

For this type of study formal consent is not required.

Additional information

Publisher's Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

This article is being published concurrently in Diseases of the Colon & Rectum, Female Pelvic Medicine and Reconstructive Surgery, and Techniques in Coloproctology. The articles are identical except for minor stylistic and spelling differences in keeping with each journal’s style. Citation from any of the 3 journals can be used when citing this article.

Supplemental digital content is available for this article. Direct URL citations appear in the printed text, and links to the digital files are provided in HTML and PDF versions of this article on the journal’s Web site (http://www.dcrjournal.com).

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Bordeianou, L.G., Anger, J., Boutros, M. et al. Measuring pelvic floor disorder symptoms using patient-reported instruments: proceedings of the consensus meeting of the pelvic floor consortium of the American Society of Colon and Rectal Surgeons, the International Continence Society, the American Urogynecologic Society, and the Society of Urodynamics, Female Pelvic Medicine and Urogenital Reconstruction. Tech Coloproctol 24, 5–22 (2020). https://doi.org/10.1007/s10151-019-02125-4

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s10151-019-02125-4

Search

Navigation