{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,8,19]],"date-time":"2026-08-19T17:49:39Z","timestamp":1787161779666,"version":"build-2736575974"},"reference-count":34,"publisher":"Springer Science and Business Media LLC","issue":"10","license":[{"start":{"date-parts":[[2020,11,8]],"date-time":"2020-11-08T00:00:00Z","timestamp":1604793600000},"content-version":"tdm","delay-in-days":0,"URL":"https:\/\/www.springer.com\/tdm"},{"start":{"date-parts":[[2020,11,8]],"date-time":"2020-11-08T00:00:00Z","timestamp":1604793600000},"content-version":"vor","delay-in-days":0,"URL":"https:\/\/www.springer.com\/tdm"}],"funder":[{"DOI":"10.13039\/501100007602","name":"Programme Grants for Applied Research","doi-asserted-by":"publisher","award":["PB-PG-0613-31033"],"award-info":[{"award-number":["PB-PG-0613-31033"]}],"id":[{"id":"10.13039\/501100007602","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["link.springer.com"],"crossmark-restriction":false},"short-container-title":["Dig Dis Sci"],"published-print":{"date-parts":[[2021,10]]},"DOI":"10.1007\/s10620-020-06698-1","type":"journal-article","created":{"date-parts":[[2020,11,8]],"date-time":"2020-11-08T12:02:36Z","timestamp":1604836956000},"page":"3330-3342","update-policy":"https:\/\/doi.org\/10.1007\/springer_crossmark_policy","source":"Crossref","is-referenced-by-count":34,"title":["Patient Strategies for Managing the Vicious Cycle of Fatigue, Pain and Urgency in Inflammatory Bowel Disease: Impact, Planning and Support"],"prefix":"10.1007","volume":"66","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-7964-7672","authenticated-orcid":false,"given":"Lesley","family":"Dibley","sequence":"first","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Bernadette","family":"Khoshaba","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Micol","family":"Artom","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Victoria","family":"Van Loo","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Louise","family":"Sweeney","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Jonathan","family":"Syred","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sula","family":"Windgassen","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Georgia","family":"Moffatt","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Christine","family":"Norton","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]},{"name":"and members of the IBD-BOOST PPI team","sequence":"additional","affiliation":[],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"297","published-online":{"date-parts":[[2020,11,8]]},"reference":[{"key":"6698_CR1","doi-asserted-by":"publisher","first-page":"1281","DOI":"10.1016\/j.crohns.2014.03.005","volume":"8","author":"S L\u00f6nnfors","year":"2014","unstructured":"L\u00f6nnfors S, Vermeire S, Greco M, Hommes D, Bell C, Avedano L. IBD and health-related quality of life: discovering the true impact. J Crohn\u2019s Colitis. 2014;8:1281\u20131286. https:\/\/doi.org\/10.1016\/j.crohns.2014.03.005.","journal-title":"J Crohn\u2019s Colitis"},{"key":"6698_CR2","doi-asserted-by":"publisher","first-page":"2769","DOI":"10.1016\/S0140-6736(17)32448-0","volume":"390","author":"SC Ng","year":"2017","unstructured":"Ng SC, Shi HY, Hamidi N, et al. Worldwide incidence and prevalence of inflammatory bowel disease in the 21st century: a systematic review of population-based studies. Lancet. 2017;390:2769\u20132778. https:\/\/doi.org\/10.1016\/S0140-6736(17)32448-0.","journal-title":"Lancet"},{"key":"6698_CR3","doi-asserted-by":"publisher","first-page":"769","DOI":"10.1093\/ecco-jcc\/jjx009","volume":"11","author":"M Harbord","year":"2017","unstructured":"Harbord M, Eliakim R, Bettenworth D, et al. Third European evidence-based consensus on diagnosis and management of ulcerative colitis. Part 2: current management. J Crohn\u2019s Colitis. 2017;11:769\u2013784. https:\/\/doi.org\/10.1093\/ecco-jcc\/jjx009.","journal-title":"J Crohn\u2019s Colitis"},{"key":"6698_CR4","doi-asserted-by":"publisher","first-page":"3","DOI":"10.1093\/ecco-jcc\/jjw168","volume":"11","author":"F Gomoll\u00f3n","year":"2016","unstructured":"Gomoll\u00f3n F, Dignass A, Annese V, et al. 3rd European evidence-based consensus on the diagnosis and management of Crohn\u2019s disease 2016: part 1: diagnosis and medical management. J Crohn\u2019s Colitis. 2016;11:3\u201325. https:\/\/doi.org\/10.1093\/ecco-jcc\/jjw168.","journal-title":"J Crohn\u2019s Colitis"},{"key":"6698_CR5","doi-asserted-by":"publisher","first-page":"760","DOI":"10.1093\/ecco-jcc\/jjy020","volume":"12","author":"K Kemp","year":"2018","unstructured":"Kemp K, Dibley L, Chauhan U, et al. Second N-ECCO consensus statements on the european nursing roles in caring for patients with Crohn\u2019s disease or ulcerative colitis. J Crohn\u2019s Colitis. 2018;12:760\u2013776. https:\/\/doi.org\/10.1093\/ecco-jcc\/jjy020.","journal-title":"J Crohn\u2019s Colitis"},{"key":"6698_CR6","doi-asserted-by":"publisher","first-page":"505","DOI":"10.1111\/apt.12205","volume":"37","author":"W Czuber-Dochan","year":"2013","unstructured":"Czuber-Dochan W, Ream E, Norton C. Review article: description and management of fatigue in inflammatory bowel disease. Aliment Pharmacol Ther. 2013;37:505\u2013516. https:\/\/doi.org\/10.1111\/apt.12205.","journal-title":"Aliment Pharmacol Ther"},{"key":"6698_CR7","doi-asserted-by":"publisher","first-page":"778","DOI":"10.1002\/ibd.20848","volume":"15","author":"K Bielefeldt","year":"2009","unstructured":"Bielefeldt K, Davis B, Binion DG. Pain and inflammatory bowel disease. Inflamm Bowel Dis. 2009;15:778\u2013788. https:\/\/doi.org\/10.1002\/ibd.20848.","journal-title":"Inflamm Bowel Dis"},{"key":"6698_CR8","doi-asserted-by":"publisher","first-page":"e302","DOI":"10.1016\/j.crohns.2012.11.004","volume":"7","author":"C Norton","year":"2013","unstructured":"Norton C, Dibley LB, Bassett P. Faecal incontinence in inflammatory bowel disease: associations and effect on quality of life. J Crohn\u2019s Colitis. 2013;7:e302\u2013e311. https:\/\/doi.org\/10.1016\/j.crohns.2012.11.004.","journal-title":"J Crohn\u2019s Colitis"},{"key":"6698_CR9","doi-asserted-by":"publisher","first-page":"571","DOI":"10.1136\/gut.2010.224154","volume":"60","author":"C Mowat","year":"2011","unstructured":"Mowat C, Cole A, Windsor A, et al. Guidelines for the management of inflammatory bowel disease in adults. Gut. 2011;60:571\u2013607. https:\/\/doi.org\/10.1136\/gut.2010.224154.","journal-title":"Gut"},{"key":"6698_CR10","doi-asserted-by":"publisher","first-page":"204","DOI":"10.1093\/ecco-jcc\/jjw144","volume":"11","author":"AL Hart","year":"2016","unstructured":"Hart AL, Lomer M, Verjee A, et al. What are the top 10 research questions in the treatment of inflammatory bowel disease? A priority setting partnership with the James Lind Alliance. J Crohn\u2019s Colitis. 2016;11:204\u2013211. https:\/\/doi.org\/10.1093\/ecco-jcc\/jjw144.","journal-title":"J Crohn\u2019s Colitis"},{"key":"6698_CR11","doi-asserted-by":"publisher","DOI":"10.1093\/ecco-jcc\/jjw164","author":"L Dibley","year":"2017","unstructured":"Dibley L, Bager P, Czuber-Dochan W, et al. Identification of research priorities for inflammatory bowel disease nursing in Europe: a nurses-European Crohn\u2019s and Colitis Organisation Delphi Survey. J Crohn\u2019s & Colitis. 2017. https:\/\/doi.org\/10.1093\/ecco-jcc\/jjw164.","journal-title":"J Crohn\u2019s & Colitis"},{"key":"6698_CR12","doi-asserted-by":"publisher","first-page":"1893","DOI":"10.1007\/s11135-017-0574-8","volume":"52","author":"B Saunders","year":"2018","unstructured":"Saunders B, Sim J, Kingstone T, et al. Saturation in qualitative research: exploring its conceptualization and operationalization. Qual Quant. 2018;52:1893\u20131907. https:\/\/doi.org\/10.1007\/s11135-017-0574-8.","journal-title":"Qual Quant"},{"key":"6698_CR13","doi-asserted-by":"publisher","first-page":"201","DOI":"10.1177\/2049463719844539","volume":"13","author":"L Sweeney","year":"2019","unstructured":"Sweeney L, Moss-Morris R, Czuber-Dochan W, Belotti L, Kabeli Z, Norton C. \u201dIt\u2019s about willpower in the end. You\u2019ve got to keep going\u201d: a qualitative study exploring the experience of pain in inflammatory bowel disease. Br J Pain. 2019;13:201\u2013213. https:\/\/doi.org\/10.1177\/2049463719844539.","journal-title":"Br J Pain"},{"key":"6698_CR14","doi-asserted-by":"publisher","DOI":"10.1111\/jan.12060","author":"W Czuber-Dochan","year":"2013","unstructured":"Czuber-Dochan W, Dibley LB, Terry H, Ream E, Norton C. The experience of fatigue in people with inflammatory bowel disease: an exploratory study. J Adv Nurs. 2013. https:\/\/doi.org\/10.1111\/jan.12060.","journal-title":"J Adv Nurs"},{"key":"6698_CR15","doi-asserted-by":"publisher","DOI":"10.1097\/mib.0b013e318281327f","author":"L Dibley","year":"2013","unstructured":"Dibley L, Norton C. Experiences of fecal incontinence in people with inflammatory bowel disease: self-reported experiences among a community sample. Inflamm Bowel Dis. 2013. https:\/\/doi.org\/10.1097\/mib.0b013e318281327f.","journal-title":"Inflamm Bowel Dis"},{"key":"6698_CR16","doi-asserted-by":"publisher","first-page":"115","DOI":"10.1111\/apt.14108","volume":"46","author":"C Norton","year":"2017","unstructured":"Norton C, Czuber-Dochan W, Artom M, Sweeney L, Hart A. Systematic review: interventions for abdominal pain management in inflammatory bowel disease. Aliment Pharmacol Ther. 2017;46:115\u2013125. https:\/\/doi.org\/10.1111\/apt.14108.","journal-title":"Aliment Pharmacol Ther"},{"key":"6698_CR17","doi-asserted-by":"publisher","first-page":"1476","DOI":"10.1080\/00365521.2018.1543451","volume":"53","author":"H Proudfoot","year":"2018","unstructured":"Proudfoot H, Norton C, Artom M, Didymus E, Kubasiewicz S, Khoshaba B. Targets for interventions for faecal incontinence in inflammatory bowel disease: a systematic review. Scand J Gastroenterol. 2018;53:1476\u20131483. https:\/\/doi.org\/10.1080\/00365521.2018.1543451.","journal-title":"Scand J Gastroenterol"},{"key":"6698_CR18","doi-asserted-by":"publisher","first-page":"715","DOI":"10.1111\/apt.14493","volume":"47","author":"L Sweeney","year":"2018","unstructured":"Sweeney L, Moss-Morris R, Czuber-Dochan W, Meade L, Chumbley G, Norton C. Systematic review: psychosocial factors associated with pain in inflammatory bowel disease. Aliment Pharmacol Ther. 2018;47:715\u2013729. https:\/\/doi.org\/10.1111\/apt.14493.","journal-title":"Aliment Pharmacol Ther"},{"key":"6698_CR19","doi-asserted-by":"publisher","first-page":"415","DOI":"10.1016\/j.brat.2012.03.001","volume":"50","author":"R Moss-Morris","year":"2012","unstructured":"Moss-Morris R, McCrone P, Yardley L, van Kessel K, Wills G, Dennison L. A pilot randomised controlled trial of an Internet-based cognitive behavioural therapy self-management programme (MS Invigor8) for multiple sclerosis fatigue. Behav Res Ther. 2012;50:415\u2013421. https:\/\/doi.org\/10.1016\/j.brat.2012.03.001.","journal-title":"Behav Res Ther"},{"key":"6698_CR20","doi-asserted-by":"publisher","first-page":"68","DOI":"10.1186\/1471-230X-13-68","volume":"13","author":"H Everitt","year":"2013","unstructured":"Everitt H, Moss-Morris R, Sibelli A, et al. Management of irritable bowel syndrome in primary care: the results of an exploratory randomised controlled trial of mebeverine, methylcellulose, placebo and a self-management website. BMC Gastroenterol. 2013;13:68. https:\/\/doi.org\/10.1186\/1471-230X-13-68.","journal-title":"BMC Gastroenterol"},{"key":"6698_CR21","doi-asserted-by":"publisher","DOI":"10.1136\/bmjopen-2016-011286","author":"JL Hudson","year":"2016","unstructured":"Hudson JL, Moss-Morris R, Game D, et al. Improving distress in dialysis (iDiD): A feasibility two-arm parallel randomised controlled trial of an online cognitive behavioural therapy intervention with and without therapist-led telephone support for psychological distress in patients undergoing haemodialysis. BMJ Open. 2016. https:\/\/doi.org\/10.1136\/bmjopen-2016-011286.","journal-title":"BMJ Open"},{"key":"6698_CR22","volume-title":"Qualitative research practice: a guide for social science students and researchers","author":"J Ritchie","year":"2003","unstructured":"Ritchie J, Lewis J. Qualitative research practice: a guide for social science students and researchers. London: Sage; 2003."},{"key":"6698_CR23","doi-asserted-by":"publisher","first-page":"935","DOI":"10.1007\/s10865-016-9782-2","volume":"39","author":"H Leventhal","year":"2016","unstructured":"Leventhal H, Phillips LA, Burns E. The common-sense model of self-regulation (CSM): a dynamic framework for understanding illness self-management. J Behav Med. 2016;39:935\u2013946. https:\/\/doi.org\/10.1007\/s10865-016-9782-2.","journal-title":"J Behav Med"},{"key":"6698_CR24","doi-asserted-by":"publisher","first-page":"117","DOI":"10.1186\/1471-2288-13-117","volume":"13","author":"NK Gale","year":"2013","unstructured":"Gale NK, Heath G, Cameron E, Rashid S, Redwood S. Using the framework method for the analysis of qualitative data in multi-disciplinary health research. BMC Med Res Methodol. 2013;13:117. https:\/\/doi.org\/10.1186\/1471-2288-13-117.","journal-title":"BMC Med Res Methodol"},{"key":"6698_CR25","doi-asserted-by":"publisher","first-page":"687","DOI":"10.1177\/2050640616674654","volume":"5","author":"LP Jelsness-J\u00f8rgensen","year":"2017","unstructured":"Jelsness-J\u00f8rgensen LP, Frigstad SO, Moum B, et al. Pain may be an important factor to consider in inflammatory bowel disease patients troubled by fatigue. United Eur Gastroenterol J. 2017;5:687\u2013693. https:\/\/doi.org\/10.1177\/2050640616674654.","journal-title":"United Eur Gastroenterol J"},{"key":"6698_CR26","doi-asserted-by":"publisher","first-page":"48","DOI":"10.1002\/nur.21985","volume":"43","author":"K Kamp","year":"2020","unstructured":"Kamp K, Dudley-Brown S, Heitkemper M, Wyatt G, Given B. Symptoms among emerging adults with inflammatory bowel disease: a descriptive study. Res Nurs Health. 2020;43:48\u201355. https:\/\/doi.org\/10.1002\/nur.21985.","journal-title":"Res Nurs Health"},{"key":"6698_CR27","doi-asserted-by":"publisher","first-page":"424","DOI":"10.1002\/nur.21813","volume":"40","author":"S Conley","year":"2017","unstructured":"Conley S, Proctor DD, Jeon S, Sandler RS, Redeker NS. Symptom clusters in adults with inflammatory bowel disease. Res Nurs Health. 2017;40:424\u2013434. https:\/\/doi.org\/10.1002\/nur.21813.","journal-title":"Res Nurs Health"},{"key":"6698_CR28","doi-asserted-by":"publisher","first-page":"42","DOI":"10.1097\/01.NAJ.0000431911.65473.35","volume":"113","author":"JK Anastasi","year":"2013","unstructured":"Anastasi JK, Capili B, Chang M. Managing irritable bowel syndrome. Am J Nurs. 2013;113:42\u201352. https:\/\/doi.org\/10.1097\/01.NAJ.0000431911.65473.35.","journal-title":"Am J Nurs"},{"key":"6698_CR29","doi-asserted-by":"publisher","first-page":"1","DOI":"10.1207\/S15324796ABM2601_01","volume":"26","author":"KR Lorig","year":"2003","unstructured":"Lorig KR, Holman HR. Self-management education: history, definition, outcomes, and mechanisms. Ann Behav Med. 2003;26:1\u20137. https:\/\/doi.org\/10.1207\/S15324796ABM2601_01.","journal-title":"Ann Behav Med"},{"key":"6698_CR30","doi-asserted-by":"publisher","first-page":"239","DOI":"10.1016\/j.phr.2004.04.002","volume":"119","author":"K Lorig","year":"2013","unstructured":"Lorig K. Patient self-management : a key to effectiveness and efficiency in care of chronic disease in care to effectiveness of chronic disease. Public Health Rep. 2013;119:239\u2013243. https:\/\/doi.org\/10.1016\/j.phr.2004.04.002.","journal-title":"Public Health Rep"},{"key":"6698_CR31","doi-asserted-by":"publisher","first-page":"838","DOI":"10.1111\/jan.13492","volume":"74","author":"L Dibley","year":"2018","unstructured":"Dibley L, Norton C, Whitehead E. The experience of stigma in inflammatory bowel disease: an interpretive (hermeneutic) phenomenological study. J Adv Nurs. 2018;74:838\u2013851. https:\/\/doi.org\/10.1111\/jan.13492.","journal-title":"J Adv Nurs"},{"key":"6698_CR32","doi-asserted-by":"publisher","first-page":"126","DOI":"10.1097\/SGA.0000000000000030","volume":"37","author":"DO Frohlich","year":"2014","unstructured":"Frohlich DO. Support often outweighs stigma for people with inflammatory bowel disease. Gastroenterol Nurs. 2014;37:126\u2013136.","journal-title":"Gastroenterol Nurs"},{"key":"6698_CR33","doi-asserted-by":"publisher","first-page":"920","DOI":"10.1111\/bjhp.12262","volume":"22","author":"FM Sirois","year":"2017","unstructured":"Sirois FM, Hirsch JK. A longitudinal study of the profiles of psychological thriving, resilience, and loss in people with inflammatory bowel disease. Br J Health Psychol. 2017;22:920\u2013939. https:\/\/doi.org\/10.1111\/bjhp.12262.","journal-title":"Br J Health Psychol"},{"key":"6698_CR34","first-page":"1408","volume":"20","author":"P Fusch","year":"2015","unstructured":"Fusch P, Ness L. Are we there yet? Data saturation in qualitative research. Qual Rep. 2015;20:1408\u20131416.","journal-title":"Qual Rep"}],"container-title":["Digestive Diseases and Sciences"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s10620-020-06698-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/article\/10.1007\/s10620-020-06698-1\/fulltext.html","content-type":"text\/html","content-version":"vor","intended-application":"text-mining"},{"URL":"https:\/\/link.springer.com\/content\/pdf\/10.1007\/s10620-020-06698-1.pdf","content-type":"application\/pdf","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2021,9,18]],"date-time":"2021-09-18T10:13:28Z","timestamp":1631960008000},"score":1,"resource":{"primary":{"URL":"https:\/\/link.springer.com\/10.1007\/s10620-020-06698-1"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,11,8]]},"references-count":34,"journal-issue":{"issue":"10","published-print":{"date-parts":[[2021,10]]}},"alternative-id":["6698"],"URL":"https:\/\/doi.org\/10.1007\/s10620-020-06698-1","relation":{},"ISSN":["0163-2116","1573-2568"],"issn-type":[{"value":"0163-2116","type":"print"},{"value":"1573-2568","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,11,8]]},"assertion":[{"value":"19 June 2020","order":1,"name":"received","label":"Received","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"24 October 2020","order":2,"name":"accepted","label":"Accepted","group":{"name":"ArticleHistory","label":"Article History"}},{"value":"8 November 2020","order":3,"name":"first_online","label":"First Online","group":{"name":"ArticleHistory","label":"Article History"}},{"order":1,"name":"Ethics","group":{"name":"EthicsHeading","label":"Compliance with Ethical Standards"}},{"value":"LD: speaker fees from Janssen, AbbVie and Eli-Lilly; consultancy fees from GL Assessments and Crohn\u2019s & Colitis UK, CN: speaker fees from Ferring, Takeda, and Tillotts Pharma, All other authors declare no conflicts of interest.","order":2,"name":"Ethics","group":{"name":"EthicsHeading","label":"Conflict of interest"}},{"value":"Approval was granted by the UK National Research Ethics Service (Wales Research Ethics Committee 4; Ref: 17\/WA\/0349). Respondents to recruitment calls received the Participant Information Sheet. Participants agreed to a group consent statement read out at the start of each focus group, and also provided written informed consent immediately before data collection. Participants were reimbursed for expenses incurred by attending the focus groups.","order":3,"name":"Ethics","group":{"name":"EthicsHeading","label":"Ethical approval"}}]}}