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Clin Colon Rectal Surg 2023; 36(04): 240-251
DOI: 10.1055/s-0043-1761607
Review Article

Patient-Reported Outcomes in Colorectal Surgery

Marianna Maspero
1   Department of Colon and Rectal Surgery, Cleveland Clinic Foundation, Cleveland, Ohio
,
Tracy Hull
1   Department of Colon and Rectal Surgery, Cleveland Clinic Foundation, Cleveland, Ohio
› Author Affiliations
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Abstract

Given the increased life expectancy and improvements in the treatment of colorectal patients, the success of a treatment course can no longer be determined only by objective outcomes. Health care providers ought to take into consideration the impact an intervention will have on the quality of life of patients. Endpoints that take into account the patient's perspective are defined as patient-reported outcomes (PROs). PROs are assessed through patient-reported outcome measures (PROMs), usually in the form of questionnaires.

PROs are especially important in colorectal surgery, whose procedures can often be associated with some degree of postoperative functional impairment.

Several PROMs are available for colorectal surgery patients. However, while some scientific societies have offered recommendations, there is no standardization in the field and PROMs are seldom implemented in clinical practice. The routine use of validated PROMs can guarantee that functional outcomes are followed over time; this way, they can be addressed in case of worsening.

This review will provide an overview of the most commonly used PROMs in colorectal surgery, both generic and disease specific, as well as a summary of the available evidence in support of their routine utilization.

Keywords

patient-reported outcomes - patient-reported outcome measures - colorectal surgery


Publication History

Article published online:
08 February 2023

© 2023. Thieme. All rights reserved.

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  • References

  • 1 Kuenzig ME, Manuel DG, Donelle J, Benchimol EI. Life expectancy and health-adjusted life expectancy in people with inflammatory bowel disease. CMAJ 2020; 192 (45) E1394-E1402
    CrossrefPubMedGoogle Scholar
  • 2 Soerjomataram I, Thong MSY, Ezzati M, Lamont EB, Nusselder WJ, van de Poll-Franse LV. Most colorectal cancer survivors live a large proportion of their remaining life in good health. Cancer Causes Control 2012; 23 (09) 1421-1428
    CrossrefPubMedGoogle Scholar
  • 3 Kluetz PG, Slagle A, Papadopoulos EJ. et al. Focusing on core patient-reported outcomes in cancer clinical trials: symptomatic adverse events, physical function, and disease-related symptoms. Clin Cancer Res 2016; 22 (07) 1553-1558
    CrossrefPubMedGoogle Scholar
  • 4 Porter ME. What is value in health care?. N Engl J Med 2010; 363 (26) 2477-2481
    CrossrefPubMedGoogle Scholar
  • 5 Steele SR. (2013). Complications, considerations, and consequences of colorectal surgery. The Surgical clinics of North America, 93 (01) xv-xvi https://doi.org/10.1016/j.suc.2012.10.001
    CrossrefPubMedGoogle Scholar
  • 6 Complications, Considerations and Consequences of Colorectal Surgery, An ... - Scott R. Steele - Google Books. Accessed June 25, 2022 at: https://books.google.com/books?id=JcpOccjZGrwC&pg=PT546&lpg=PT546&dq=complications+colorectal+surgery&source=bl&ots=P_d6MPCEs2&sig=ACfU3U1pQ4hwJMe6dvah6vu8aa5YeSiBqw&hl=en&sa=X&ved=2ahUKEwiJ3fyzqMn4AhWAJ0QIHRDzB9wQ6AF6BAgGEAM#v=onepage&q=complications_colorectal_surgery&f=false
    PubMed
  • 7 Giglia MD, Stein SL. Overlooked long-term complications of colorectal surgery. Clin Colon Rectal Surg 2019; 32 (03) 204-211
    Article in Thieme ConnectPubMedGoogle Scholar
  • 8 Caldwell, Brittany. Value and Use of Patient-Reported Outcomes (PROs) in Assessing Effects of Medical Devices. 2016. Accessed June 25, 2022 at: https://www.fda.gov/regulatory-information/search-fda-guidance-documents/core-patient-reported-outcomes-cancer-clinical-trials
    PubMed
  • 9 Rees JR, Whale K, Fish D. et al. Patient-reported outcomes in randomised controlled trials of colorectal cancer: an analysis determining the availability of robust data to inform clinical decision-making. J Cancer Res Clin Oncol 2015; 141 (12) 2181-2192
    CrossrefPubMedGoogle Scholar
  • 10 Stucky CCH, Pockaj BA, Novotny PJ. et al. Long-term follow-up and individual item analysis of quality of life assessments related to laparoscopic-assisted colectomy in the COST trial 93-46-53 (INT 0146). Ann Surg Oncol 2011; 18 (09) 2422-2431
    CrossrefPubMedGoogle Scholar
  • 11 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. Guidance for industry: patient-reported outcome measures: use in medical product development to support labeling claims: draft guidance. Health Qual Life Outcomes 4, 79 (2006). https://doi.org/10.1186/1477-7525-4-79
    CrossrefPubMedGoogle Scholar
  • 12 Prinsen CAC, Vohra S, Rose MR. et al. Core Outcome Measures in Effectiveness Trials (COMET) initiative: protocol for an international Delphi study to achieve consensus on how to select outcome measurement instruments for outcomes included in a ‘core outcome set’. Trials 2014; 15 (01) 247
    CrossrefPubMedGoogle Scholar
  • 13 Williamson PR, Altman DG, Blazeby JM. et al. Developing core outcome sets for clinical trials: issues to consider. Trials 2012; 13: 132
    CrossrefPubMedGoogle Scholar
  • 14 Kim AH, Roberts C, Feagan BG. et al. Developing a standard set of patient-centred outcomes for inflammatory bowel disease—an International, Cross-Disciplinary Consensus. J Crohn's Colitis 2018; 12 (04) 408-418
    CrossrefPubMedGoogle Scholar
  • 15 McNair AGK, Whistance RN, Forsythe RO. et al. Core outcomes for colorectal cancer surgery: a consensus study. PLoS Med 2016; 13 (08) e1002071
    CrossrefPubMedGoogle Scholar
  • 16 Zerillo JA, Schouwenburg MGM, van Bommel ACM. et al; Colorectal Cancer Working Group of the International Consortium for Health Outcomes Measurement (ICHOM). An international collaborative standardizing a comprehensive patient-centered outcomes measurement set for colorectal cancer. JAMA Oncol 2017; 3 (05) 686-694
    CrossrefPubMedGoogle Scholar
  • 17 Chapman SJ, Lee MJ, Blackwell S. et al; Tripartite Gastrointestinal Recovery Group. Establishing core outcome sets for gastrointestinal recovery in studies of postoperative ileus and small bowel obstruction: protocol for a nested methodological study. Colorectal Dis 2020; 22 (04) 459-464
    CrossrefPubMedGoogle Scholar
  • 18 Pearson I, Blackwell S, Fish R. et al. Defining standards in colorectal optimisation: a Delphi study protocol to achieve international consensus on key standards for colorectal surgery prehabilitation. BMJ Open 2021; 11 (03) e047235
    CrossrefPubMedGoogle Scholar
  • 19 Detmar SB, Muller MJ, Schornagel JH, Wever LDV, Aaronson NK. Health-related quality-of-life assessments and patient-physician communication: a randomized controlled trial. JAMA 2002; 288 (23) 3027-3034
    CrossrefPubMedGoogle Scholar
  • 20 Chen J, Ou L, Hollis SJ. A systematic review of the impact of routine collection of patient reported outcome measures on patients, providers and health organisations in an oncologic setting. BMC Health Serv Res 2013; 13 (01) 211
    CrossrefPubMedGoogle Scholar
  • 21 Kotronoulas G, Kearney N, Maguire R. et al. What is the value of the routine use of patient-reported outcome measures toward improvement of patient outcomes, processes of care, and health service outcomes in cancer care? A systematic review of controlled trials. J Clin Oncol 2014; 32 (14) 1480-1501
    CrossrefPubMedGoogle Scholar
  • 22 Basch E, Barbera L, Kerrigan CL, Velikova G. Implementation of patient-reported outcomes in routine medical care. Am Soc Clin Oncol Educ Book 2018; 38 (38) 122-134
    CrossrefPubMedGoogle Scholar
  • 23 Velikova G, Booth L, Smith AB. et al. Measuring quality of life in routine oncology practice improves communication and patient well-being: a randomized controlled trial. J Clin Oncol 2004; 22 (04) 714-724
    CrossrefPubMedGoogle Scholar
  • 24 Snyder CF, Aaronson NK. Use of patient-reported outcomes in clinical practice. Lancet 2009; 374 (9687): 369-370
    CrossrefPubMedGoogle Scholar
  • 25 Laugsand EA, Sprangers MAG, Bjordal K, Skorpen F, Kaasa S, Klepstad P. Health care providers underestimate symptom intensities of cancer patients: a multicenter European study. Health Qual Life Outcomes 2010; 8: 104
    CrossrefPubMedGoogle Scholar
  • 26 Basch E, Jia X, Heller G. et al. Adverse symptom event reporting by patients vs clinicians: relationships with clinical outcomes. J Natl Cancer Inst 2009; 101 (23) 1624-1632
    CrossrefPubMedGoogle Scholar
  • 27 Panattoni L, Fedorenko C, Greenwood-Hickman MA. et al. Characterizing potentially preventable cancer- and chronic disease-related emergency department use in the year after treatment initiation: a regional study. J Oncol Pract 2018; 14 (03) e176-e185
    CrossrefPubMedGoogle Scholar
  • 28 Mayer DK, Travers D, Wyss A, Leak A, Waller A. Why do patients with cancer visit emergency departments? Results of a 2008 population study in North Carolina. J Clin Oncol 2011; 29 (19) 2683-2688
    CrossrefPubMedGoogle Scholar
  • 29 Basch E, Deal AM, Kris MG. et al. Symptom monitoring with patient-reported outcomes during routine cancer treatment: a randomized controlled trial. J Clin Oncol 2016; 34 (06) 557-565
    Google Scholar
  • 30 Washington AE, Lipstein SH. The Patient-Centered Outcomes Research Institute—promoting better information, decisions, and health. N Engl J Med 2011; 365 (15) e31
    CrossrefPubMedGoogle Scholar
  • 31 The SF-36 Health Survey: Development and Use in Mental Health Research and the IQOLA Project on JSTOR. Accessed July 15, 2022 at: https://www.jstor.org/stable/41344687
    PubMedGoogle Scholar
  • 32 EuroQol Group. EuroQol—a new facility for the measurement of health-related quality of life. Health Policy 1990; 16 (03) 199-208
    Google Scholar
  • 33 Devlin NJ, Appleby J, Buxton M. et al. Getting the most out of PROMs: health outcomes and NHS decision-making, Nancy Devlin and John Appleby, The King's Fund, March 2010. Accessed July 18, 2022 at: www.kingsfund.org.uk/publications
    PubMedGoogle Scholar
  • 34 Hawthorne G, Richardson J, Day NA. A comparison of the Assessment of Quality of Life (AQoL) with four other generic utility instruments. Ann Med 2001; 33 (05) 358-370
    CrossrefPubMedGoogle Scholar
  • 35 Coons SJ, Rao S, Keininger DL, Hays RD. A comparative review of generic quality-of-life instruments. PharmacoEconomics 2000; 17 (01) 13-35
    CrossrefPubMedGoogle Scholar
  • 36 Ware Jr J, Kosinski M, Keller SDA. A 12-Item Short-Form Health Survey: construction of scales and preliminary tests of reliability and validity. Med Care 1996; 34 (03) 220-233
    CrossrefPubMedGoogle Scholar
  • 37 Mierzynska J, Piccinin C, Pe M. et al. Prognostic value of patient-reported outcomes from international randomised clinical trials on cancer: a systematic review. Lancet Oncol 2019; 20 (12) e685-e698
    CrossrefPubMedGoogle Scholar
  • 38 Gupta A, Jensen EH, Virnig BA, Beg MS. Time-related burdens of cancer care. JCO Oncol Pract 2022; 18 (04) 245-246
    CrossrefPubMedGoogle Scholar
  • 39 McNair AGK, Whistance RN, Forsythe RO. et al; CONSENSUS-CRC (Core Outcomes and iNformation SEts iN SUrgical Studies - ColoRectal Cancer) Working Group. Synthesis and summary of patient-reported outcome measures to inform the development of a core outcome set in colorectal cancer surgery. Colorectal Dis 2015; 17 (11) O217-O229
    PubMedGoogle Scholar
  • 40 Ward WL, Hahn EA, Mo F, Hernandez L, Tulsky DS, Cella D. Reliability and validity of the Functional Assessment of Cancer Therapy-Colorectal (FACT-C) quality of life instrument. Qual Life Res 1999; 8 (03) 181-195
    CrossrefPubMedGoogle Scholar
  • 41 Sprangers MAG, te Velde A, Aaronson NK. European Organization for Research and Treatment of Cancer Study Group on Quality of Life. The construction and testing of the EORTC colorectal cancer-specific quality of life questionnaire module (QLQ-CR38). Eur J Cancer 1999; 35 (02) 238-247
    CrossrefPubMedGoogle Scholar
  • 42 Gujral S, Conroy T, Fleissner C. et al; European Organisation for Research and Treatment of Cancer Quality of Life Group. Assessing quality of life in patients with colorectal cancer: an update of the EORTC quality of life questionnaire. Eur J Cancer 2007; 43 (10) 1564-1573
    CrossrefPubMedGoogle Scholar
  • 43 Aaronson NK, Ahmedzai S, Bergman B. et al. The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 1993; 85 (05) 365-376
    CrossrefPubMedGoogle Scholar
  • 44 Ganesh V, Agarwal A, Popovic M. et al. Comparison of the FACT-C, EORTC QLQ-CR38, and QLQ-CR29 quality of life questionnaires for patients with colorectal cancer: a literature review. Support Care Cancer 2016; 24 (08) 3661-3668
    CrossrefPubMedGoogle Scholar
  • 45 Temple LK, Bacik J, Savatta SG. et al. The development of a validated instrument to evaluate bowel function after sphincter-preserving surgery for rectal cancer. Dis Colon Rectum 2005; 48 (07) 1353-1365
    CrossrefPubMedGoogle Scholar
  • 46 Romberg-Camps MJL, Bol Y, Dagnelie PC. et al. Fatigue and health-related quality of life in inflammatory bowel disease: results from a population-based study in the Netherlands: the IBD-South Limburg cohort. Inflamm Bowel Dis 2010; 16 (12) 2137-2147
    CrossrefPubMedGoogle Scholar
  • 47 Haapamäki J, Roine RP, Sintonen H, Turunen U, Färkkilä MA, Arkkila PET. Health-related quality of life in inflammatory bowel disease measured with the generic 15D instrument. Qual Life Res 2010; 19 (06) 919-928
    CrossrefPubMedGoogle Scholar
  • 48 Johnston RD, Logan RFA. What is the peak age for onset of IBD?. Inflamm Bowel Dis 2008; 14 (Suppl. 02) S4-S5
    CrossrefPubMedGoogle Scholar
  • 49 Lönnfors S, Vermeire S, Greco M, Hommes D, Bell C, Avedano L. IBD and health-related quality of life—discovering the true impact. J Crohn's Colitis 2014; 8 (10) 1281-1286
    CrossrefPubMedGoogle Scholar
  • 50 Kappelman MD, Long MD, Martin C. et al. Evaluation of the patient-reported outcomes measurement information system in a large cohort of patients with inflammatory bowel diseases. Clin Gastroenterol Hepatol 2014; 12 (08) 1315-23.e2
    CrossrefPubMedGoogle Scholar
  • 51 de Dombal FT, Softley A. International Organisation for the Study of Inflammatory Bowel Disease. IOIBD report no 1: observer variation in calculating indices of severity and activity in Crohn's disease. Gut 1987; 28 (04) 474-481
    CrossrefPubMedGoogle Scholar
  • 52 Rederived values of the eight coefficients of the Crohn's Disease Activity Index (CDAI)—PubMed. Accessed June 13, 2022 at: https://pubmed.ncbi.nlm.nih.gov/467941/
    PubMedGoogle Scholar
  • 53 Schroeder KW, Tremaine WJ, Ilstrup DM. Coated oral 5-aminosalicylic acid therapy for mildly to moderately active ulcerative colitis. A randomized study. N Engl J Med 1987; 317 (26) 1625-1629
    CrossrefPubMedGoogle Scholar
  • 54 Williet N, Sandborn WJ, Peyrin-Biroulet L. Patient-reported outcomes as primary end points in clinical trials of inflammatory bowel disease. Clin Gastroenterol Hepatol 2014; 12 (08) 1246-56.e6
    CrossrefPubMedGoogle Scholar
  • 55 van Andel EM, Koopmann BDM, Crouwel F. et al. Systematic review of development and content validity of patient-reported outcome measures in inflammatory bowel disease: do we measure what we measure?. J Crohn's Colitis 2020; 14 (09) 1299-1315
    CrossrefPubMedGoogle Scholar
  • 56 McColl E, Han SW, Barton JR, Welfare MR. A comparison of the discriminatory power of the Inflammatory Bowel Disease Questionnaire and the SF-36 in people with ulcerative colitis. Qual Life Res 2004; 13 (04) 805-811
    CrossrefPubMedGoogle Scholar
  • 57 The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection—PubMed. Accessed June 13, 2022 at: https://pubmed.ncbi.nlm.nih.gov/1593914/
    PubMed
  • 58 Guyatt G, Mitchell A, Irvine EJ. et al. A new measure of health status for clinical trials in inflammatory bowel disease. Gastroenterology 1989; 96 (03) 804-810
    CrossrefPubMedGoogle Scholar
  • 59 Bodger K, Ormerod C, Shackcloth D, Harrison M. IBD Control Collaborative. Development and validation of a rapid, generic measure of disease control from the patient's perspective: the IBD-control questionnaire. Gut 2014; 63 (07) 1092-1102
    CrossrefPubMedGoogle Scholar
  • 60 Carter MJ, Lobo AJ, Travis SPL. IBD Section, British Society of Gastroenterology. Guidelines for the management of inflammatory bowel disease in adults. Gut 2004; 53 (Suppl 5, Suppl 5): V1-V16
    CrossrefPubMedGoogle Scholar
  • 61 Kiran RP, Delaney CP, Senagore AJ. et al. Prospective assessment of Cleveland Global Quality of Life (CGQL) as a novel marker of quality of life and disease activity in Crohn's disease. Am J Gastroenterol 2003; 98 (08) 1783-1789
    CrossrefPubMedGoogle Scholar
  • 62 D'Ugo S, Romano F, Sibio S. et al. Impact of surgery on quality of life in Crohn's disease: short- and mid-term follow-up. Updates Surg 2020; 72 (03) 773-780
    CrossrefPubMedGoogle Scholar
  • 63 Cavallaro P, Fearnhead N, Bissett I. et al; PROPS Delphi Study Expert Panels. Patients undergoing ileoanal pouch surgery experience a constellation of symptoms and consequences representing a unique syndrome: a report from the Patient-Reported Outcomes After Pouch Surgery (PROPS) Delphi Consensus Study. Ann Surg 2021; 274 (01) 138-145
    CrossrefPubMedGoogle Scholar
  • 64 Talking To Your Doctor About Health Apps for Inflammatory Bowel Disease | MyCrohnsAndColitisTeam. Accessed June 13, 2022 at: https://www.mycrohnsandcolitisteam.com/resources/talking-to-your-doctor-about-health-apps-for-inflammatory-bowel-disease?utm_source=google&utm_term=ibd_apps&utm_campaign=crohns-colitis_tc_stelara_janssen_telemedicine&utm_content=134664464863&utm_medium=ppc&gclid=Cj0KCQjwwJuVBhCAARIsAOPwGARG5VQ5U5UPbTsNH_J9m9e8TNQ7OTdyJFqgrkiKhZ_hLmcvImv5QbwaAlnaEALw_wcB
    PubMed
  • 65 Davis SP, Ross MSH, Adatorwovor R, Wei H. Telehealth and mobile health interventions in adults with inflammatory bowel disease: a mixed-methods systematic review. Res Nurs Health 2021; 44 (01) 155-172
    CrossrefPubMedGoogle Scholar
  • 66 Pérez-Jover V, Sala-González M, Guilabert M, Mira JJ. Mobile apps for increasing treatment adherence: systematic review. J Med Internet Res 2019; 21 (06) e12505
    CrossrefPubMedGoogle Scholar
  • 67 Bordeianou LG, Anger JT, Boutros M. et al; MEMBERS OF THE PELVIC FLOOR DISORDERS CONSORTIUM WORKING GROUPS ON PATIENT-REPORTED OUTCOMES. 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. Dis Colon Rectum 2020; 63 (01) 6-23
    CrossrefPubMedGoogle Scholar
  • 68 Liao C, Qin Y. Factors associated with stoma quality of life among stoma patients. Int J Nurs Sci 2014; 1 (02) 196-201
    PubMedGoogle Scholar
  • 69 Nugent KP, Daniels P, Stewart B, Patankar R, Johnson CD. Quality of life in stoma patients. Dis Colon Rectum 1999; 42 (12) 1569-1574
    CrossrefPubMedGoogle Scholar
  • 70 Prieto L, Thorsen H, Juul K. Development and validation of a quality of life questionnaire for patients with colostomy or ileostomy. Health Qual Life Outcomes 2005; 3: 62
    CrossrefPubMedGoogle Scholar
  • 71 Grant M, Ferrell B, Dean G, Uman G, Chu D, Krouse R. Revision and psychometric testing of the City of Hope Quality of Life-Ostomy Questionnaire. Qual Life Res 2004; 13 (08) 1445-1457
    CrossrefPubMedGoogle Scholar
  • 72 Regenbogen SE, Hardiman KM, Hendren S, Morris AM. Surgery for diverticulitis in the 21st century: a systematic review. JAMA Surg 2014; 149 (03) 292-303
    CrossrefPubMedGoogle Scholar
  • 73 Spiegel BMR, Reid MW, Bolus R. et al. Development and validation of a disease-targeted quality of life instrument for chronic diverticular disease: the DV-QOL. Qual Life Res 2015; 24 (01) 163-179
    CrossrefPubMedGoogle Scholar
  • 74 Hawkins AT, Rothman RL, Geiger TM. et al. Patient-reported outcome measures in colon and rectal surgery: a systematic review and quality assessment. Dis Colon Rectum 2020; 63 (08) 1156-1167
    CrossrefPubMedGoogle Scholar
  • 75 Smith LE, Marcio J, Jorge N, Wexner SD. . CURRENT STATUS Etiology and Management of Fecal Incontinence.
    PubMed
  • 76 Rockwood TH, Church JM, Fleshman JW. et al. Patient and surgeon ranking of the severity of symptoms associated with fecal incontinence: the fecal incontinence severity index. Dis Colon Rectum 1999; 42 (12) 1525-1532
    CrossrefPubMedGoogle Scholar
  • 77 Rockwood TH, Church JM, Fleshman JW. et al. Fecal Incontinence Quality of Life Scale: quality of life instrument for patients with fecal incontinence. Dis Colon Rectum 2000; 43 (01) 9-16 , discussion 16–17
    CrossrefPubMedGoogle Scholar
  • 78 Knowles CH, Eccersley AJ, Scott SM, Walker SM, Reeves B, Lunniss PJ. Linear discriminant analysis of symptoms in patients with chronic constipation: validation of a new scoring system (KESS). Dis Colon Rectum 2000; 43 (10) 1419-1426
    CrossrefPubMedGoogle Scholar
  • 79 Agachan F, Chen T, Pfeifer J, Reissman P, Wexner SD. A constipation scoring system to simplify evaluation and management of constipated patients. Dis Colon Rectum 1996; 39 (06) 681-685
    CrossrefPubMedGoogle Scholar
  • 80 Marquis P, De La Loge C, Dubois D, McDermott A, Chassany O. Development and validation of the Patient Assessment of Constipation Quality of Life questionnaire. Scand J Gastroenterol 2009; 40 (05) 540-551
    CrossrefPubMedGoogle Scholar
  • 81 Chen TYT, Emmertsen KJ, Laurberg S. What are the best questionnaires to capture anorectal function after surgery in rectal cancer?. Curr Colorectal Cancer Rep 2015; 11 (01) 37-43
    CrossrefPubMedGoogle Scholar
  • 82 Emmertsen KJ, Laurberg S. Low anterior resection syndrome score: development and validation of a symptom-based scoring system for bowel dysfunction after low anterior resection for rectal cancer. Ann Surg 2012; 255 (05) 922-928
    CrossrefPubMedGoogle Scholar
  • 83 Keane C, Fearnhead NS, Bordeianou L. et al; LARS International Collaborative Group. International consensus definition of low anterior resection syndrome. Colorectal Dis 2020; 22 (03) 331-341
    CrossrefPubMedGoogle Scholar
  • 84 Desnoo L, Faithfull S. A qualitative study of anterior resection syndrome: the experiences of cancer survivors who have undergone resection surgery. Eur J Cancer Care (Engl) 2006; 15 (03) 244-251
    CrossrefPubMedGoogle Scholar
  • 85 Attaallah W, Ertekin C, Tinay I, Yegen C. High rate of sexual dysfunction following surgery for rectal cancer. Ann Coloproctol 2014; 30 (05) 210-215
    CrossrefPubMedGoogle Scholar
  • 86 Gklavas A, Kyprianou C, Exarchos G, Metaxa L, Dellis A, Papaconstantinou I. Sexual function after proctectomy in patients with inflammatory bowel disease: a prospective study. Turk J Gastroenterol 2019; 30 (11) 943-950
    CrossrefPubMedGoogle Scholar
  • 87 Hueting WE, Gooszen HG, van Laarhoven CJHM. Sexual function and continence after ileo pouch anal anastomosis: a comparison between a meta-analysis and a questionnaire survey. Int J Colorectal Dis 2004; 19 (03) 215-218
    CrossrefPubMedGoogle Scholar
  • 88 Park ER, Norris RL, Bober SL. Sexual health communication during cancer care: barriers and recommendations. Cancer J 2009; 15 (01) 74-77
    CrossrefPubMedGoogle Scholar
  • 89 Attaallah W, Ertekin SC, Yegen C. Prospective study of sexual dysfunction after proctectomy for rectal cancer. Asian J Surg 2018; 41 (05) 454-461
    CrossrefPubMedGoogle Scholar
  • 90 Rosen RC, Riley A, Wagner G, Osterloh IH, Kirkpatrick J, Mishra A. The International Index of Erectile Function (IIEF): a multidimensional scale for assessment of erectile dysfunction. Urology 1997; 49 (06) 822-830
    CrossrefPubMedGoogle Scholar
  • 91 Rosen R, Brown C, Heiman J. et al. The Female Sexual Function Index (FSFI): a multidimensional self-report instrument for the assessment of female sexual function. J Sex Marital Ther 2000; 26 (02) 191-208
    CrossrefPubMedGoogle Scholar
  • 92 Wu AW, Kharrazi H, Boulware LE, Snyder CF. Measure once, cut twice—adding patient-reported outcome measures to the electronic health record for comparative effectiveness research. J Clin Epidemiol 2013; 66 (8, Suppl): S12-S20
    CrossrefPubMedGoogle Scholar
  • 93 Sibert NT, Kowalski C, Pfaff H, Wesselmann S, Breidenbach C. Clinicians' knowledge and attitudes towards patient reported outcomes in colorectal cancer care – insights from qualitative interviews. BMC Health Serv Res 2021; 21 DOI: 10.1186/s12913-021-06361-z.
    CrossrefPubMedGoogle Scholar
  • 94 Graham ID, Logan J, Harrison MB. et al. Lost in knowledge translation: time for a map?. J Contin Educ Health Prof 2006; 26 (01) 13-24
    CrossrefPubMedGoogle Scholar
  • 95 Atherton PJ, Burger KN, Pederson LD, Kaggal S, Sloan JA. Patient-reported outcomes questionnaire compliance in Cancer Cooperative Group Trials (Alliance N0992). Clin Trials 2016; 13 (06) 612-620
    CrossrefPubMedGoogle Scholar
  • 96 Foster A, Croot L, Brazier J, Foster A, Croot L, Brazier J, Harris J, O'Cathain A. The facilitators and barriers to implementing patient reported outcome measures in organisations delivering health related services: a systematic review of reviews. J Patient Rep Outcomes 2018; 2: 46 . Published 2018 Oct 3. DOI: 10.1186/s41687-018-0072-3.
    CrossrefPubMedGoogle Scholar
  • 97 Howell D, Molloy S, Wilkinson K. et al. Patient-reported outcomes in routine cancer clinical practice: a scoping review of use, impact on health outcomes, and implementation factors. Ann Oncol 2015; 26 (09) 1846-1858
    CrossrefPubMedGoogle Scholar
  • 98 Horsman J, Furlong W, Feeny D, Torrance G. The Health Utilities Index (HUI): concepts, measurement properties and applications. Health Qual Life Outcomes 2003; 1 (01) 54 . Published 2003 Oct 16. DOI: 10.1186/1477-7525-1-54.
    CrossrefPubMedGoogle Scholar
  • 99 WHOQOL - Files| The World Health Organization. Accessed July 28, 2022 at: https://www.who.int/tools/whoqol/whoqol-bref
    PubMedGoogle Scholar
  • 100 Bergner M, Bobbitt RA, Carter WB, Gilson BS. The Sickness Impact Profile: development and final revision of a health status measure. Med Care 1981; 19 (08) 787-805
    CrossrefPubMedGoogle Scholar
  • 101 The Nottingham Health Profile–a measure of health-related quality of life - PubMed. Accessed July 28, 2022 at: https://pubmed.ncbi.nlm.nih.gov/2100359/
    PubMed
  • 102 Hays RD, Bjorner JB, Revicki DA, Spritzer KL, Cella D. Development of physical and mental health summary scores from the Patient-Reported Outcomes Measurement Information System (PROMIS) global items. Qual Life Res 2009; 18 (07) 873-880
    CrossrefPubMedGoogle Scholar
  • 103 Author I. Instrument Title: Quality of Life Patient/Cancer Survivor Version (QOL-CSV). Accessed July 28, 2022 at: https://www.midss.org/sites/default/files/qol-cs.pdf
    PubMedGoogle Scholar
  • 104 Baker F, Denniston M, Zabora JR, Marcellus D. Cancer problems in living and quality of life after bone marrow transplantation. J Clin Psychol Med Settings 2003; 6 (01) 50
    PubMedGoogle Scholar
  • 105 Jowett SL, Seal CJ, Barton JR, Welfare MR. The short inflammatory bowel disease questionnaire is reliable and responsive to clinically important change in ulcerative colitis. Am J Gastroenterol 2001; 96 (10) 2921-2928
    CrossrefPubMedGoogle Scholar
  • 106 Alcalá MJ, Casellas F, Fontanet G, Prieto L, Malagelada JR. Shortened questionnaire on quality of life for inflammatory bowel disease. Inflamm Bowel Dis 2004; 10 (04) 383-391
    CrossrefPubMedGoogle Scholar
  • 107 Drossman DA, Leserman J, Li ZM, Mitchell CM, Zagami EA, Patrick DL. The rating form of IBD patient concerns: a new measure of health status. Psychosom Med 1991; 53 (06) 701-712
    CrossrefPubMedGoogle Scholar
  • 108 Fazio VW, O'Riordain MG, Lavery IC. et al. Long-term functional outcome and quality of life after stapled restorative proctocolectomy. Ann Surg 1999; 230 (04) 575-584 , discussion 584–586
    CrossrefPubMedGoogle Scholar
  • 109 Wilburn J, McKenna SP, Twiss J, Kemp K, Campbell S. Assessing quality of life in Crohn's disease: development and validation of the Crohn's Life Impact Questionnaire (CLIQ). Qual Life Res 2015; 24 (09) 2279-2288
    CrossrefPubMedGoogle Scholar
  • 110 Alrubaiy L, Cheung WY, Dodds P. et al. Development of a short questionnaire to assess the quality of life in Crohn's disease and ulcerative colitis. J Crohn's Colitis 2015; 9 (01) 66-76
    CrossrefPubMedGoogle Scholar
  • 111 Peyrin-Biroulet L, Cieza A, Sandborn WJ. et al; International Programme to Develop New Indexes for Crohn's Disease (IPNIC) group. Development of the first disability index for inflammatory bowel disease based on the international classification of functioning, disability and health. Gut 2012; 61 (02) 241-247
    CrossrefPubMedGoogle Scholar
  • 112 Wilcox AR, Concepcion M, Dragnev C, Darcey CJ, Siegel CA. A new tool to measure the burden of Crohn's disease and its treatment: do patient and physician perceptions match?. Inflamm Bowel Dis 2010; 16 (04) 645-650
    CrossrefPubMedGoogle Scholar
  • 113 Barber MD, Walters MD, Bump RC. 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 2005; 193 (01) 103-113
    CrossrefPubMedGoogle Scholar
  • 114 Burckhardt CS. The Ostomy Adjustment Scale: further evidence of reliability and validity. Rehabil Psychol 1991; 35 (03) 149
    CrossrefPubMedGoogle Scholar
  • 115 Baxter NN, Novotny PJ, Jacobson T, Maidl LJ, Sloan J, Young-Fadok TM. A stoma quality of life scale. Dis Colon Rectum 2006; 49 (02) 205-212 DOI: 10.1007/S10350-005-0275-6.
    CrossrefPubMedGoogle Scholar
  • 116 Villa G, Vellone E, Sciara S. et al. Two new tools for self-care in ostomy patients and their informal caregivers: psychosocial, clinical, and operative aspects. Int J Urol Nurs 2019; 13 (01) 23-30
    CrossrefPubMedGoogle Scholar
  • 117 Browning GGP, Parks AG. Postanal repair for neuropathic faecal incontinence: correlation of clinical result and anal canal pressures. Br J Surg 1983; 70 (02) 101-104
    CrossrefPubMedGoogle Scholar
  • 118 Vaizey CJ, Carapeti E, Cahill JA, Kamm MA. Prospective comparison of faecal incontinence grading systems. Gut 1999; 44 (01) 77-80
    CrossrefPubMedGoogle Scholar
  • 119 Keller A, McGarvey EL, Clayton AH. Reliability and construct validity of the Changes in Sexual Functioning Questionnaire short-form (CSFQ-14). J Sex Marital Ther 2006; 32 (01) 43-52
    CrossrefPubMedGoogle Scholar
  • 120 Derogatis LR. The Derogatis Interview for Sexual Functioning (DISF/DISF-SR): an introductory report. J Sex Marital Ther 1997; 23 (04) 291-304
    CrossrefPubMedGoogle Scholar
  • 121 Smets EMA, Garssen B, Bonke B, De Haes JCJM. The Multidimensional Fatigue Inventory (MFI) psychometric qualities of an instrument to assess fatigue. J Psychosom Res 1995; 39 (03) 315-325
    CrossrefPubMedGoogle Scholar
  • 122 Webster K, Cella D, Yost K. The Functional Assessment of Chronic Illness Therapy (FACIT) Measurement System: properties, applications, and interpretation. Health Qual Life Outcomes 2003; 1: 79
    CrossrefPubMedGoogle Scholar
  • 123 Reeve BB, Stover AM, Alfano CM. et al. The Piper Fatigue Scale-12 (PFS-12): psychometric findings and item reduction in a cohort of breast cancer survivors. Breast Cancer Res Treat 2012; 136 (01) 9-20
    CrossrefPubMedGoogle Scholar
  • 124 Larson RD. Psychometric properties of the modified fatigue impact scale. Int J MS Care 2013; 15 (01) 15-20
    CrossrefPubMedGoogle Scholar
  • 125 Beck AT, Ward CH, Mendelson M, Mock J, Erbaugh J. An inventory for measuring depression. Arch Gen Psychiatry 1961; 4 (06) 561-571
    CrossrefPubMedGoogle Scholar
  • 126 Spielberger CD, Gorsuch RL, Lushene RE. . (1970) STAI Manual for the State-Trait Anxiety Inventory. Consulting Psychologists Press, Palo Alto. - References - Scientific Research Publishing. Accessed July 28, 2022 at: https://www.scirp.org/(S(lz5mqp453edsnp55rrgjct55))/reference/ReferencesPapers.aspx?ReferenceID=2100663
    PubMed