P31 Patient-led digital health assessment to capture key care metrics is accepted by patients with Primary Biliary Cholangitis translating into high levels of pruritus and fatigue assessment independent of clinician input

a:2:{s:4:"lang";s:2:"en";s:7:"content";s:4827:"<h3></h3> Primary Biliary Cholangitis(PBC) is a progressive, lifelong autoimmune condition, affecting 35 per 100,000 in the UK, characterised by intrahepatic bile duct cholangitis causing chronic cholestasis and progressive fibrosis.¹ There is no cure, with current therapies attempting to improve quality-of-life(QoL) and slow progression.² International guidance is clear on targets to optimise care.³ A recent UK audit highlighted PBC care to be suboptimal against all guideline metrics nationally.⁴ PBC disrupts QoL by intrusive symptoms, including pruritus and fatigue, however a lack of regular assessment of these is a major deficiency of care.⁵ Validated QoL tools are useful to identify these challenges and are accepted by patients, however, are not embedded in care due to the onus being on clinicians.⁵ Empowering people with chronic conditions is important to deliver holistic care which caters to the needs of each individual and enriches clinician-patient interactions⁶. To support this ethos, the PBC Everyday Assessment(PBC-EA) was developed to capture aspects of care important to patients. The purpose of this digital patient-led PBC assessment is to support individualised evaluation against international care standards, QoL metrics and encourage patient-centred conversations. Adults (&gt;18years) with PBC were identified retrospectively at a UK tertiary care centre (Nottingham University Hospitals NHS Trust) using clinical coding, existing specialist care databases and hospital pharmacy dispensing records between 01-May-2022 to 30-April-2024. Patients referred to the PBC second-line therapy MDT were included (n=44). A combination of guidelines and QoL metrics informed development of a digital PBC-EA. Using a digital patient interface, PBC-EA was linked to patient appointments and delivered to a mobile device. PBC-EA was sent to patients prior to an appointment. Once completed, results from PBC-EA were immediately available in the patient’s digital health record. Over the study period, a total of 129(89%) PBC-EA requests were sent to 39(89%) patients. Of these, PBC-EA was completed on 110(85%) occasions by 35(90%) patients. On average PBC-EA was completed 12 days prior to an appointment on 106(82%) occasions; 4(3%) were completed during the appointment. This translated to symptomatic assessment (fatigue and pruritus) and accurate ursodeoxycholic acid dosing information for 106(84%) appointments independent of clinician input and in a 100% of those completing PBC-EA. Patient-led digital health assessment is acceptable to PBC patients with high uptake independent of clinician input. PBC-EA empowered patients to direct the discussion of their care whilst supporting clinicians to easily review relevant individualised information to raise the standard of PBC care. <h3>References</h3> Carbone M, Milani C, Gerasim A, Ronca V, Cristofer L, Invernizzi P. Primary biliary cholangitis: a multifaceted pathogenesis with potential therapeutic targets. <i>J Hepatol</i>. 2020 Oct;<b>73</b>(4):965–966. doi: 10.1016/j.jhep.2020.05.041. Epub 2020 Jul 21. PMID: 32709365. James OF, Bhopal R, Howel D, Gray J, Burt AD, Metcalf JV. Primary biliary cirrhosis once rare, now common in the United Kingdom? <i>Hepatology</i>. 1999 Aug;<b>30</b>(2):390–4. doi:10.1002/hep.510300213. PMID: 10421645. European association for the study of the liver. Electronic address: easloffice{at}easloffice.eu; European association for the study of the liver. EASL Clinical Practice Guidelines: The diagnosis and management of patients with primary biliary cholangitis. <i>J Hepatol</i>. 2017 Jul;<b>67</b>(1):145–172. doi: 10.1016/j.jhep.2017.03.022. Epub 2017 Apr 18. PMID: 28427765. Abbas N, Smith R, Flack S, Bains V, Aspinall RJ, Jones RL, Burke L, Thorburn D, Heneghan M, Yeoman A, Leithead J, Braniff C, Robertson A, Mitchell C, Thain C, Mitchell-Thain R, Jones D, Trivedi PJ, Mells GF, Alrubaiy L; UK-PBC audit group. Critical shortfalls in the management of PBC: Results of a UK-wide, population-based evaluation of care delivery. <i>JHEP Rep</i>. 2023 Oct 16;<b>6</b>(1):100931. doi: 10.1016/j.jhepr.2023.100931. PMID: 38089546; PMCID: PMC10711474. Jacoby A, Rannard A, Buck D, Bhala N, Newton JL, James OF, Jones DE. Development, validation, and evaluation of the PBC-40, a disease specific health related quality of life measure for primary biliary cirrhosis. <i>Gut</i>. 2005 Nov;<b>54</b>(11):1622–9. doi: 10.1136/gut.2005.065862. Epub 2005 Jun 16. PMID: 15961522; PMCID: PMC1774759. Hirschfield G, Lleo A, Jones D, Dyson. <i>JKM EMJ Hepatol</i>. 2022;<b>10</b>(1):22–31. DOI/10.33590/emjhepatol/10166227. https://doi.org/10.33590/emjhepatol/10166227. ";}