{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,27]],"date-time":"2026-08-27T11:18:43Z","timestamp":1787829523197,"version":"build-2784847793"},"reference-count":24,"publisher":"Springer Science and Business Media LLC","issue":"11","license":[{"start":{"date-parts":[[2024,8,14]],"date-time":"2024-08-14T00:00:00Z","timestamp":1723593600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"},{"start":{"date-parts":[[2024,8,14]],"date-time":"2024-08-14T00:00:00Z","timestamp":1723593600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/creativecommons.org\/licenses\/by\/4.0"}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Qual Life Res"],"published-print":{"date-parts":[[2024,11]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec>\n                <jats:title>Purpose<\/jats:title>\n                <jats:p>Faecal incontinence (FI) is a prevalent and debilitating anorectal problem causing embarrassment, anxiety, and social isolation, diminishing quality of life. At present there is no optimal treatment option for FI. Consequently, treatments primarily focus on symptom reduction and improving quality of life. Understanding patient experiences and outcomes they seek from treatment is crucial for improving care. This study aims to explore how FI impacts patients\u2019 lives and identify important treatment outcomes as part of the development of a Core Outcome Set (COS).<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Methods<\/jats:title>\n                <jats:p>Patients with FI were recruited from outpatient clinics in the Netherlands. Semi-structured interviews were performed, audio recorded, transcribed per verbatim and coded. Thematic analysis was performed to identify (sub)themes and categories relevant to the patients.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Results<\/jats:title>\n                <jats:p>Twelve interviews were conducted before saturation was reached (75% female, 25% male, mean age 63, range 39\u201383 year). Four main themes emerged \u2018Physical symptoms\u2019, \u2018Impact on daily life\u2019, \u2018Emotional impact\u2019 and \u2018Coping\u2019. Patients expressed how FI severely limits daily activities and emotional wellbeing. Treatment priorities centred on resuming normal activities rather than solely on symptom reduction.<\/jats:p>\n              <\/jats:sec><jats:sec>\n                <jats:title>Conclusion<\/jats:title>\n                <jats:p>The impact of FI extends far beyond uncontrolled loss of faeces, affecting psychological, emotional, and social wellbeing. Patients prioritise outcomes focussed on reclaiming normalcy and independence rather than focusing on physical symptoms alone. Integrating these patient-centered outcomes in future studies could enhance treatment satisfaction and patient-perceived treatment success. Furthermore, the outcomes identified in this study can be included in a Delphi survey alongside other relevant outcomes, paving the way for the development of a COS.<\/jats:p>\n              <\/jats:sec>","DOI":"10.1007\/s11136-024-03756-3","type":"journal-article","created":{"date-parts":[[2024,8,14]],"date-time":"2024-08-14T18:02:16Z","timestamp":1723658536000},"page":"3121-3129","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":23,"title":["Living with faecal incontinence: a qualitative investigation of patient experiences and preferred outcomes through semi-structured interviews"],"prefix":"10.1007","volume":"33","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-8740-7916","authenticated-orcid":false,"given":"S. L.","family":"Assmann","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-9856-9980","authenticated-orcid":false,"given":"D.","family":"Keszthelyi","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5445-4011","authenticated-orcid":false,"given":"S. O.","family":"Breukink","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0002-5717-5704","authenticated-orcid":false,"given":"M. L.","family":"Kimman","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2024,8,14]]},"reference":[{"issue":"6","key":"3756_CR1","doi-asserted-by":"publisher","first-page":"1430","DOI":"10.1053\/j.gastro.2016.02.009","volume":"150","author":"SS Rao","year":"2016","unstructured":"Rao, S. S., Bharucha, A. E., Chiarioni, G., Felt-Bersma, R., Knowles, C., Malcolm, A., & Wald, A. (2016). Anorectal disorders. Gastroenterology, 150(6), 1430\u20131442. e1434.","journal-title":"Gastroenterology"},{"issue":"12","key":"3756_CR2","doi-asserted-by":"publisher","first-page":"1194","DOI":"10.1097\/DCR.0000000000000514","volume":"58","author":"KS Ng","year":"2015","unstructured":"Ng, K. S., Sivakumaran, Y., Nassar, N., & Gladman, M. A. (2015). Fecal incontinence: Community prevalence and associated factors\u2014a systematic review. Diseases of the Colon & Rectum, 58(12), 1194\u20131209.","journal-title":"Diseases of the Colon & Rectum"},{"issue":"3","key":"3756_CR3","doi-asserted-by":"publisher","first-page":"220","DOI":"10.2166\/washdev.2024.199","volume":"14","author":"C Rosato-Scott","year":"2024","unstructured":"Rosato-Scott, C., Adjorlolo, S., Farrington, M., & Barrington, D. J. (2024). Do not forget us\u2019: The shared experiences and needs of people living with incontinence in humanitarian contexts. Journal of Water Sanitation and Hygiene for Development, 14(3), 220\u2013228.","journal-title":"Journal of Water Sanitation and Hygiene for Development"},{"issue":"1","key":"3756_CR4","doi-asserted-by":"publisher","first-page":"11","DOI":"10.3748\/wjg.v23.i1.11","volume":"23","author":"NS Ruiz","year":"2017","unstructured":"Ruiz, N. S., & Kaiser, A. M. (2017). Fecal incontinence-challenges and solutions. World Journal of Gastroenterology, 23(1), 11.","journal-title":"World Journal of Gastroenterology"},{"issue":"1","key":"3756_CR5","doi-asserted-by":"publisher","first-page":"127","DOI":"10.1038\/ajg.2014.396","volume":"110","author":"AE Bharucha","year":"2015","unstructured":"Bharucha, A. E., Dunivan, G., Goode, P. S., Lukacz, E. S., Markland, A. D., Matthews, C. A., Mott, L., Rogers, R. G., Zinsmeister, A. R., & Whitehead, W. E. (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. Official Journal of the American College of Gastroenterology| ACG, 110(1), 127\u2013136.","journal-title":"Official Journal of the American College of Gastroenterology| ACG"},{"key":"3756_CR6","doi-asserted-by":"crossref","unstructured":"Knowles, C. H., Dinning, P., Scott, S. M., Swash, M., & de Wachter, S. (2022). New concepts in the pathophysiology of fecal incontinence. Annals of Laparoscopic and Endoscopic Surgery, 1\u201319.","DOI":"10.21037\/ales-2022-02"},{"issue":"1","key":"3756_CR7","doi-asserted-by":"publisher","first-page":"61","DOI":"10.1097\/WON.0b013e31823fe246","volume":"39","author":"M Gray","year":"2012","unstructured":"Gray, M., Beeckman, D., Bliss, D. Z., Fader, M., Logan, S., Junkin, J., Selekof, J., Doughty, D., & Kurz, P. (2012). Incontinence-associated dermatitis: A comprehensive review and update. Journal of Wound Ostomy & Continence Nursing, 39(1), 61\u201374.","journal-title":"Journal of Wound Ostomy & Continence Nursing"},{"key":"3756_CR8","doi-asserted-by":"crossref","unstructured":"Peden-McAlpine, C., Northwood, M., & Bliss, D. Z. (2018). Fecal incontinence: Definition and impact on quality of life. Management of Fecal Incontinence for the Advanced Practice Nurse: Under the Auspices of the International Continence Society, 1\u201314.","DOI":"10.1007\/978-3-319-90704-8_1"},{"issue":"9","key":"3756_CR9","doi-asserted-by":"publisher","first-page":"927","DOI":"10.1111\/j.1463-1318.2008.01717.x","volume":"11","author":"Y Maeda","year":"2009","unstructured":"Maeda, Y., Vaizey, C., Hollington, P., Stern, J., & Kamm, M. (2009). Physiological, psychological and behavioural characteristics of men and women with faecal incontinence. Colorectal Disease, 11(9), 927\u2013932.","journal-title":"Colorectal Disease"},{"issue":"26","key":"3756_CR10","doi-asserted-by":"publisher","first-page":"3276","DOI":"10.3748\/wjg.15.3276","volume":"15","author":"L Bartlett","year":"2009","unstructured":"Bartlett, L., Nowak, M., & Ho, Y. H. (2009). Impact of fecal incontinence on quality of life. World Journal of Gastroenterology: WJG, 15(26), 3276.","journal-title":"World Journal of Gastroenterology: WJG"},{"issue":"3","key":"3756_CR11","doi-asserted-by":"publisher","first-page":"251","DOI":"10.1002\/ueg2.12213","volume":"10","author":"SL Assmann","year":"2022","unstructured":"Assmann, S. L., Keszthelyi, D., Kleijnen, J., Anastasiou, F., Bradshaw, E., Brannigan, A. E., Carrington, E. V., Chiarioni, G., Ebben, L. D., & Gladman, M. A. (2022). Guideline for the diagnosis and treatment of faecal Incontinence\u2014A UEG\/ESCP\/ESNM\/ESPCG collaboration. United European Gastroenterology Journal, 10(3), 251\u2013286.","journal-title":"United European Gastroenterology Journal"},{"key":"3756_CR12","unstructured":"World Health Organization. (2004). The world health organization quality of life (WHOQOL)-BREF. World Health Organization."},{"issue":"1","key":"3756_CR13","doi-asserted-by":"publisher","first-page":"108","DOI":"10.1111\/j.1471-6712.2009.00693.x","volume":"24","author":"JL Rasmussen","year":"2010","unstructured":"Rasmussen, J. L., & Ringsberg, K. C. (2010). Being involved in an everlasting fight\u2013a life with postnatal faecal incontinence. A qualitative study. Scandinavian Journal of Caring Sciences, 24(1), 108\u2013115.","journal-title":"Scandinavian Journal of Caring Sciences"},{"key":"3756_CR14","doi-asserted-by":"publisher","first-page":"102044","DOI":"10.1016\/j.ejon.2021.102044","volume":"55","author":"C Krook","year":"2021","unstructured":"Krook, C., Hagelin, C. L., & Dunberger, G. (2021). Living in limbo: Meanings of living with fecal incontinence as narrated by women after treatment for pelvic cancer. European Journal of Oncology Nursing, 55, 102044.","journal-title":"European Journal of Oncology Nursing"},{"issue":"1\u20132","key":"3756_CR15","doi-asserted-by":"publisher","first-page":"141","DOI":"10.1111\/jocn.12617","volume":"24","author":"F Olsson","year":"2015","unstructured":"Olsson, F., & Berter\u00f6, C. (2015). Living with faecal incontinence: Trying to control the daily life that is out of control. Journal of Clinical Nursing, 24(1\u20132), 141\u2013150.","journal-title":"Journal of Clinical Nursing"},{"issue":"7","key":"3756_CR16","doi-asserted-by":"publisher","first-page":"817","DOI":"10.1177\/0193945907312974","volume":"30","author":"C Peden-McAlpine","year":"2008","unstructured":"Peden-McAlpine, C., Bliss, D., & Hill, J. (2008). The experience of community-living women managing fecal incontinence. Western Journal of Nursing Research, 30(7), 817\u2013835.","journal-title":"Western Journal of Nursing Research"},{"key":"3756_CR17","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/s13063-017-1978-4","volume":"18","author":"PR Williamson","year":"2017","unstructured":"Williamson, P. R., Altman, D. G., Bagley, H., Barnes, K. L., Blazeby, J. M., Brookes, S. T., Clarke, M., Gargon, E., Gorst, S., & Harman, N. (2017). The COMET handbook: Version 1.0. Trials, 18, 1\u201350.","journal-title":"Trials"},{"key":"3756_CR18","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1186\/1745-6215-13-132","volume":"13","author":"PR Williamson","year":"2012","unstructured":"Williamson, P. R., Altman, D. G., Blazeby, J. M., Clarke, M., Devane, D., Gargon, E., & Tugwell, P. (2012). Developing core outcome sets for clinical trials: Issues to consider. Trials, 13, 1\u20138.","journal-title":"Trials"},{"key":"3756_CR19","doi-asserted-by":"publisher","first-page":"114523","DOI":"10.1016\/j.socscimed.2021.114523","volume":"292","author":"M Hennink","year":"2022","unstructured":"Hennink, M., & Kaiser, B. N. (2022). Sample sizes for saturation in qualitative research: A systematic review of empirical tests. Social Science & Medicine, 292, 114523.","journal-title":"Social Science & Medicine"},{"key":"3756_CR20","unstructured":"Ritchie, J., Lewis, J., Nicholls, C. M., & Ormston, R. (2013). Qualitative research practice: A guide for social science students and researchers: sage."},{"key":"3756_CR21","doi-asserted-by":"publisher","first-page":"9","DOI":"10.1007\/BF02237236","volume":"43","author":"TH Rockwood","year":"2000","unstructured":"Rockwood, T. H., Church, J. M., Fleshman, J. W., Kane, R. L., Mavrantonis, C., Thorson, A. G., Wexner, S. D., Bliss, D., & Lowry, A. C. (2000). Fecal incontinence quality of Life Scale: Quality of life instrument for patients with fecal incontinence. Diseases of the Colon & Rectum, 43, 9\u201316.","journal-title":"Diseases of the Colon & Rectum"},{"key":"3756_CR22","doi-asserted-by":"publisher","first-page":"617","DOI":"10.1007\/s00384-021-03865-2","volume":"36","author":"S Assmann","year":"2021","unstructured":"Assmann, S., Keszthelyi, D., Kleijnen, J., Kimman, M., Anastasiou, F., Bradshaw, E., Carrington, E., Chiarioni, G., Maeda, Y., & Muris, J. (2021). The development of a faecal incontinence core outcome set: An international Delphi study protocol. International Journal of Colorectal Disease, 36, 617\u2013622.","journal-title":"International Journal of Colorectal Disease"},{"issue":"1","key":"3756_CR23","doi-asserted-by":"publisher","first-page":"120","DOI":"10.1080\/13814788.2017.1375092","volume":"24","author":"I Korstjens","year":"2018","unstructured":"Korstjens, I., & Moser, A. (2018). Series: Practical guidance to qualitative research. Part 4: Trustworthiness and publishing. European Journal of General Practice, 24(1), 120\u2013124.","journal-title":"European Journal of General Practice"},{"key":"3756_CR24","doi-asserted-by":"crossref","unstructured":"Assmann, S. L., Mulders, E., Kimman, M. L., Keszthelyi, D., & Breukink, S. O. (2024). Toward a core outcome set for faecal incontinence\u2014A systematic review of outcomes reported in the literature. Colorectal Disease.","DOI":"10.1111\/codi.17075"}],"container-title":["Quality of Life Research"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-024-03756-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s11136-024-03756-3\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s11136-024-03756-3.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2024,11,6]],"date-time":"2024-11-06T12:16:08Z","timestamp":1730895368000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s11136-024-03756-3"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2024,8,14]]},"references-count":24,"journal-issue":{"issue":"11","published-print":{"date-parts":[[2024,11]]}},"alternative-id":["3756"],"URL":"https:\/\/doi.org\/10.1007\/s11136-024-03756-3","relation":{},"ISSN":["0962-9343","1573-2649"],"issn-type":[{"value":"0962-9343","type":"print"},{"value":"1573-2649","type":"electronic"}],"subject":[],"published":{"date-parts":[[2024,8,14]]},"assertion":[{"value":"2 August 2024","order":1,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"14 August 2024","order":2,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Declarations"}},{"value":"The ethical committee of Maastricht University Medical Centre and Maastricht University, The Netherlands, has reviewed and approved this study proposal (METC 2019-1143-A-10), confirming at the same time that the Dutch Medical Research Involving Human Subjects Act (WMO) does not apply to the above-mentioned study. In addition, the Board of Directors of the Maastricht University Medical Center also approved the study.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethics approval"}},{"value":"Informed consent was obtained from all individual participants included in the study.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Consent to participate"}},{"value":"The authors have no relevant financial or non-financial interests related to the work to disclose.","order":4,"name":"Ethics","group":{"name":"EthicsHeading","label":"Competing interests"}}]}}