{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,1,28]],"date-time":"2026-01-28T07:29:39Z","timestamp":1769585379202,"version":"3.49.0"},"reference-count":10,"publisher":"BMJ","issue":"5","content-domain":{"domain":["bmj.com"],"crossmark-restriction":true},"short-container-title":["Frontline Gastroenterol"],"accepted":{"date-parts":[[2020,4,30]]},"published-print":{"date-parts":[[2021,9]]},"abstract":"<jats:sec>\n                  <jats:title>Objective<\/jats:title>\n                  <jats:p>Patient ownership of disease is vital in rare diseases like primary biliary cholangitis (PBC). This survey of UK members of the PBC foundation aimed to assess patients\u2019 perception of their disease management, focusing on key biomarkers and problematic symptoms.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Design<\/jats:title>\n                  <jats:p>Registered PBC foundation members were surveyed on their experiences on their most recent clinic visit, covering the type of hospital and clinician and whether biochemical response and symptom burden were discussed, including who initiated these conversations. Respondents were also asked about their willingness to initiate these conversations.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Results<\/jats:title>\n                  <jats:p>Across 633 respondents, 42% remembered discussing alkaline phosphatase, the key biochemical response measure, and the majority of discussions were initiated by the healthcare provider. 56% of respondents remembered discussing itch, a key PBC symptom. There was no distinction between the grade of healthcare professional, but both patients and clinicians were significantly more likely to discuss symptoms over disease progression. Reassuringly, 84% of respondents felt willing to initiate conversations about their illness, regardless of the grade of managing clinician.<\/jats:p>\n               <\/jats:sec>\n               <jats:sec>\n                  <jats:title>Conclusions<\/jats:title>\n                  <jats:p>This work lays a positive foundation for patient education and empowerment projects, likely to improve clinical outcomes. Key aspects of management (biochemical response to treatment and symptom burden) should be emphasised as topics of discussion to both patients and clinicians managing PBC. We suggest a simple cue card to prompt patient-led discussion.<\/jats:p>\n               <\/jats:sec>","DOI":"10.1136\/flgastro-2019-101324","type":"journal-article","created":{"date-parts":[[2020,6,1]],"date-time":"2020-06-01T17:15:38Z","timestamp":1591031738000},"page":"370-373","update-policy":"https:\/\/doi.org\/10.1136\/crossmarkpolicy","source":"Crossref","is-referenced-by-count":7,"title":["Patient ownership of primary biliary cholangitis long-term management"],"prefix":"10.1136","volume":"12","author":[{"ORCID":"https:\/\/orcid.org\/0000-0002-6027-8026","authenticated-orcid":false,"given":"Jessica","family":"Leighton","sequence":"first","affiliation":[{"name":"ICM, Newcastle University, Newcastle upon Tyne, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Collette","family":"Thain","sequence":"additional","affiliation":[{"name":"PBC Foundation, Edinburgh, Edinburgh, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Robert","family":"Mitchell-Thain","sequence":"additional","affiliation":[{"name":"PBC Foundation, Edinburgh, Edinburgh, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Jessica K","family":"Dyson","sequence":"additional","affiliation":[{"name":"ICM, Newcastle University, Newcastle upon Tyne, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"David E","family":"Jones","sequence":"additional","affiliation":[{"name":"ICM, Newcastle University, Newcastle upon Tyne, UK"}],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"239","published-online":{"date-parts":[[2020,6,1]]},"reference":[{"key":"2025090709175010000_12.5.370.1","doi-asserted-by":"publisher","DOI":"10.7326\/0003-4819-143-6-200509200-00007"},{"key":"2025090709175010000_12.5.370.2","unstructured":"Expert Patients Programme Community Interest Company . Self Care Reduces Costs and Improved Health - The Evidence. Available: http:\/\/www.touchpointcare.com\/documents\/Self%20Care%20Reduces%20Cost%20and%20Improves%20Health.pdf"},{"key":"2025090709175010000_12.5.370.3","unstructured":"All Party Parliamentary Groups on Global Health . HIV\/Aids; population, development and reproductive health; global tuberculosis; and patient and public involvement in health and social care. patient empowerment: for better quality, more sustainable health services globally, 2014. Available: http:\/\/www.appg-globalhealth.org.uk\/download\/i\/mark_dl\/u\/4009611296\/4609762637\/APPG%20Patient%20Empowerment%20Report.pdf"},{"key":"2025090709175010000_12.5.370.4","unstructured":"Department of Health . UK strategy for rare diseases, 2013. Available: https:\/\/assets.publishing.service.gov.uk\/government\/uploads\/system\/uploads\/attachment_data\/file\/260562\/UK_Strategy_for_Rare_Diseases.pdf [Accessed 30 Apr 2018]."},{"key":"2025090709175010000_12.5.370.5","doi-asserted-by":"crossref","first-page":"2547","DOI":"10.1007\/s10620-018-5074-8","article-title":"Are clinicians ready for safe use of stratified therapy in primary biliary cholangitis (pBC)? A study of educational awareness","volume":"63","author":"Jopson","year":"2018","journal-title":"Dig Dis Sci"},{"key":"2025090709175010000_12.5.370.6","doi-asserted-by":"crossref","first-page":"A269.2","DOI":"10.1136\/gutjnl-2016-312388.507","article-title":"PTH-103\u2005Clinician Confidence in Stratifying Risk in Primary Biliary Cirrhosis - A UK-PBC Survey","volume":"65","author":"Corrigan","year":"2016","journal-title":"Gut"},{"key":"2025090709175010000_12.5.370.7","doi-asserted-by":"publisher","DOI":"10.1056\/NEJMoa1509840"},{"key":"2025090709175010000_12.5.370.8","doi-asserted-by":"crossref","first-page":"626-634","DOI":"10.1016\/S2468-1253(18)30163-8","article-title":"Pretreatment prediction of response to ursodeoxycholic acid in primary biliary cholangitis: development and validation of the UDCA response score","volume":"3","author":"Carbone","year":"2018","journal-title":"Lancet Gastroenterol Hepatol"},{"key":"2025090709175010000_12.5.370.9","doi-asserted-by":"publisher","DOI":"10.1053\/j.gastro.2012.12.005"},{"key":"2025090709175010000_12.5.370.10","doi-asserted-by":"crossref","first-page":"1379","DOI":"10.1016\/j.cgh.2018.12.007","article-title":"Pruritus is common and undertreated in patients with primary biliary cholangitis in the United Kingdom","volume":"17","author":"Hegade","year":"2019","journal-title":"Clin Gastroenterol Hepatol"}],"container-title":["Frontline Gastroenterology"],"original-title":[],"language":"en","link":[{"URL":"https:\/\/syndication.highwire.org\/content\/doi\/10.1136\/flgastro-2019-101324","content-type":"unspecified","content-version":"vor","intended-application":"similarity-checking"}],"deposited":{"date-parts":[[2025,9,7]],"date-time":"2025-09-07T16:17:58Z","timestamp":1757261878000},"score":1,"resource":{"primary":{"URL":"https:\/\/fg.bmj.com\/lookup\/doi\/10.1136\/flgastro-2019-101324"}},"subtitle":[],"short-title":[],"issued":{"date-parts":[[2020,6,1]]},"references-count":10,"journal-issue":{"issue":"5","published-online":{"date-parts":[[2021,8,6]]},"published-print":{"date-parts":[[2021,9]]}},"alternative-id":["10.1136\/flgastro-2019-101324"],"URL":"https:\/\/doi.org\/10.1136\/flgastro-2019-101324","relation":{},"ISSN":["2041-4137","2041-4145"],"issn-type":[{"value":"2041-4137","type":"print"},{"value":"2041-4145","type":"electronic"}],"subject":[],"published":{"date-parts":[[2020,6,1]]}}}