Pruritus in primary biliary cholangitis is under-recorded in patient medical records
Objective Cholestatic pruritus in primary biliary cholangitis (PBC) reduces patients’ health-related quality of life (HRQoL). Despite this, existing research suggests that pruritus is under-recorded in patients’ health records. This study assessed the extent to which pruritus was recorded in medical...
| Main Authors: | , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMJ Publishing Group
2024-07-01
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| Series: | BMJ Open Gastroenterology |
| Online Access: | https://bmjopengastro.bmj.com/content/11/1/e001287.full |
| _version_ | 1826805695491604480 |
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| author | Usha Gungabissoon Haley S Friedler John Logie Jolyon Fairburn-Beech Helen T Smith Robyn von Maltzahn Liyuan Ma Dhirishiya P Ashleigh McGirr Jake N Hunnicutt Christopher L Rowe Meghan Tierney |
| author_facet | Usha Gungabissoon Haley S Friedler John Logie Jolyon Fairburn-Beech Helen T Smith Robyn von Maltzahn Liyuan Ma Dhirishiya P Ashleigh McGirr Jake N Hunnicutt Christopher L Rowe Meghan Tierney |
| author_sort | Usha Gungabissoon |
| collection | DOAJ |
| description | Objective Cholestatic pruritus in primary biliary cholangitis (PBC) reduces patients’ health-related quality of life (HRQoL). Despite this, existing research suggests that pruritus is under-recorded in patients’ health records. This study assessed the extent to which pruritus was recorded in medical records of patients with PBC as compared with patient-reported pruritus, and whether patients reporting mild itch were less likely to have pruritus recorded. We also evaluated clinico-demographic characteristics and HRQoL of patients with medical record-documented and patient-reported pruritus.Design This cross-sectional study used clinical information abstracted from medical records, together with patient-reported (PBC-40) data from patients with PBC in the USA enrolled in the PicnicHealth cohort. Medical record-documented pruritus was classified as ‘recent’ (at, or within 12 months prior to, enrolment) or ‘ever’ (at, or any point prior to, enrolment). Patient-reported pruritus (4-week recall) was assessed using the first PBC-40 questionnaire completed on/after enrolment; pruritus severity was classified by itch domain score (any severity: ≥1; clinically significant itch: ≥7). Patient clinico-demographic characteristics and PBC-40 domain scores were described in patients with medical record-documented and patient-reported pruritus; overlap between groups was evaluated. Descriptive statistics were reported.Results Pruritus of any severity was self-reported by 200/225 (88.9%) patients enrolled; however, only 88/225 (39.1%) had recent medical record-documented pruritus. Clinically significant pruritus was self-reported by 120/225 (53.3%) patients; of these, 64/120 (53.3%) had recent medical record-documented pruritus. Patients reporting clinically significant pruritus appeared to have higher mean scores across PBC-40 domains (indicating reduced HRQoL), versus patients with no/mild patient-reported pruritus or medical-record documented pruritus.Conclusion Compared with patient-reported measures, pruritus in PBC is under-recorded in medical records and is associated with lower HRQoL. Research based only on medical records underestimates the true burden of pruritus, meaning physicians may be unaware of the extent and impact of pruritus, leading to potential undertreatment. |
| first_indexed | 2024-04-24T14:42:20Z |
| format | Article |
| id | doaj.art-0244bd7c24b342f8a0dce921c58a9656 |
| institution | Directory Open Access Journal |
| issn | 2054-4774 |
| language | English |
| last_indexed | 2025-03-17T02:14:32Z |
| publishDate | 2024-07-01 |
| publisher | BMJ Publishing Group |
| record_format | Article |
| series | BMJ Open Gastroenterology |
| spelling | doaj.art-0244bd7c24b342f8a0dce921c58a96562025-02-12T16:50:13ZengBMJ Publishing GroupBMJ Open Gastroenterology2054-47742024-07-0111110.1136/bmjgast-2023-001287Pruritus in primary biliary cholangitis is under-recorded in patient medical recordsUsha Gungabissoon0Haley S Friedler1John Logie2Jolyon Fairburn-Beech3Helen T Smith4Robyn von Maltzahn5Liyuan Ma6Dhirishiya P7Ashleigh McGirr8Jake N Hunnicutt9Christopher L Rowe10Meghan Tierney11GSK, London, UKPicnicHealth, San Francisco, California, USAGSK, London, UKGSK, London, UKGSK, London, UKGSK, London, UKGSK, Collegeville, Pennsylvania, USAGSK, Bangalore, IndiaGSK, Mississauga, Ontario, CanadaGSK, Collegeville, Pennsylvania, USAPicnicHealth, San Francisco, California, USAPicnicHealth, San Francisco, California, USAObjective Cholestatic pruritus in primary biliary cholangitis (PBC) reduces patients’ health-related quality of life (HRQoL). Despite this, existing research suggests that pruritus is under-recorded in patients’ health records. This study assessed the extent to which pruritus was recorded in medical records of patients with PBC as compared with patient-reported pruritus, and whether patients reporting mild itch were less likely to have pruritus recorded. We also evaluated clinico-demographic characteristics and HRQoL of patients with medical record-documented and patient-reported pruritus.Design This cross-sectional study used clinical information abstracted from medical records, together with patient-reported (PBC-40) data from patients with PBC in the USA enrolled in the PicnicHealth cohort. Medical record-documented pruritus was classified as ‘recent’ (at, or within 12 months prior to, enrolment) or ‘ever’ (at, or any point prior to, enrolment). Patient-reported pruritus (4-week recall) was assessed using the first PBC-40 questionnaire completed on/after enrolment; pruritus severity was classified by itch domain score (any severity: ≥1; clinically significant itch: ≥7). Patient clinico-demographic characteristics and PBC-40 domain scores were described in patients with medical record-documented and patient-reported pruritus; overlap between groups was evaluated. Descriptive statistics were reported.Results Pruritus of any severity was self-reported by 200/225 (88.9%) patients enrolled; however, only 88/225 (39.1%) had recent medical record-documented pruritus. Clinically significant pruritus was self-reported by 120/225 (53.3%) patients; of these, 64/120 (53.3%) had recent medical record-documented pruritus. Patients reporting clinically significant pruritus appeared to have higher mean scores across PBC-40 domains (indicating reduced HRQoL), versus patients with no/mild patient-reported pruritus or medical-record documented pruritus.Conclusion Compared with patient-reported measures, pruritus in PBC is under-recorded in medical records and is associated with lower HRQoL. Research based only on medical records underestimates the true burden of pruritus, meaning physicians may be unaware of the extent and impact of pruritus, leading to potential undertreatment.https://bmjopengastro.bmj.com/content/11/1/e001287.full |
| spellingShingle | Usha Gungabissoon Haley S Friedler John Logie Jolyon Fairburn-Beech Helen T Smith Robyn von Maltzahn Liyuan Ma Dhirishiya P Ashleigh McGirr Jake N Hunnicutt Christopher L Rowe Meghan Tierney Pruritus in primary biliary cholangitis is under-recorded in patient medical records BMJ Open Gastroenterology |
| title | Pruritus in primary biliary cholangitis is under-recorded in patient medical records |
| title_full | Pruritus in primary biliary cholangitis is under-recorded in patient medical records |
| title_fullStr | Pruritus in primary biliary cholangitis is under-recorded in patient medical records |
| title_full_unstemmed | Pruritus in primary biliary cholangitis is under-recorded in patient medical records |
| title_short | Pruritus in primary biliary cholangitis is under-recorded in patient medical records |
| title_sort | pruritus in primary biliary cholangitis is under recorded in patient medical records |
| url | https://bmjopengastro.bmj.com/content/11/1/e001287.full |
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