Research ExplorerPublicationsPatient-reported quality of care in primary sclerosing chola...

Patient-reported quality of care in primary sclerosing cholangitis

Standard

Patient-reported quality of care in primary sclerosing cholangitis. / Walmsley, Martine; Tornai, Dávid; Cazzagon, Nora; Leburgue, Angela; Mrzljak, Anna; Lenzen, Henrike; Carbone, Marco; Madaleno, João; Lleo, Ana; Junge, Norman; Schramm, Christoph; Bergquist, Annika.

In: LIVER INT, Vol. 43, No. 8, 08.2023, p. 1654-1662.

Research output: SCORING: Contribution to journal › SCORING: Journal article › Research › peer-review

Harvard

Walmsley, M, Tornai, D, Cazzagon, N, Leburgue, A, Mrzljak, A, Lenzen, H, Carbone, M, Madaleno, J, Lleo, A, Junge, N, Schramm, C & Bergquist, A 2023, 'Patient-reported quality of care in primary sclerosing cholangitis', LIVER INT, vol. 43, no. 8, pp. 1654-1662. https://doi.org/10.1111/liv.15650

APA

Walmsley, M., Tornai, D., Cazzagon, N., Leburgue, A., Mrzljak, A., Lenzen, H., Carbone, M., Madaleno, J., Lleo, A., Junge, N., Schramm, C., & Bergquist, A. (2023). Patient-reported quality of care in primary sclerosing cholangitis. LIVER INT, 43(8), 1654-1662. https://doi.org/10.1111/liv.15650

Vancouver

Walmsley M, Tornai D, Cazzagon N, Leburgue A, Mrzljak A, Lenzen H et al. Patient-reported quality of care in primary sclerosing cholangitis. LIVER INT. 2023 Aug;43(8):1654-1662. https://doi.org/10.1111/liv.15650

Bibtex

@article{3cbbc58cb1854800a4cfe2fc145b43f9,
title = "Patient-reported quality of care in primary sclerosing cholangitis",
abstract = "BACKGROUND: Management and follow-up strategies for primary sclerosing cholangitis (PSC) vary. The aim of the present study was to assess patient-reported quality of care to identify the most important areas for improvement.METHODS: Data were collected via an online survey hosted on the EU Survey platform in 11 languages between October 2021 and January 2022. Questions were asked about the disease, symptoms, treatment, investigations and quality of care.RESULTS: In total, 798 nontransplanted people with PSC from 33 countries responded. Eighty-six per cent of respondents reported having had at least one symptom. Twenty-four per cent had never undergone an elastography, and 8% had not had a colonoscopy. Nearly half (49%) had never undergone a bone density scan. Ursodeoxycholic acid (UDCA) was used in 90-93% in France, Netherlands and Germany, and 49-50% in the United Kingdom and Sweden. Itch was common (60%), and 50% of those had received any medication. Antihistamines were taken by 27%, cholestyramine by 21%, rifampicin by 13% and bezafibrate by 6.5%. Forty-one per cent had been offered participation in a clinical trial or research. The majority (91%) reported that they were confident with their care although half of the individuals reported the need for more information on disease prognosis and diet.CONCLUSION: Symptom burden in PSC is high, and the most important areas of improvement are disease monitoring with more widespread use of elastography, bone density scan and appropriate treatment for itch. Personalised prognostic information should be offered to all individuals with PSC and include information on how they can improve their health.",
keywords = "Humans, Cholangitis, Sclerosing/diagnosis, Ursodeoxycholic Acid/therapeutic use, Prognosis, Pruritus/drug therapy, Patient Reported Outcome Measures, Quality of Health Care",
author = "Martine Walmsley and D{\'a}vid Tornai and Nora Cazzagon and Angela Leburgue and Anna Mrzljak and Henrike Lenzen and Marco Carbone and Jo{\~a}o Madaleno and Ana Lleo and Norman Junge and Christoph Schramm and Annika Bergquist",
note = "{\textcopyright} 2023 The Authors. Liver International published by John Wiley & Sons Ltd.",
year = "2023",
month = aug,
doi = "10.1111/liv.15650",
language = "English",
volume = "43",
pages = "1654--1662",
journal = "LIVER INT",
issn = "1478-3223",
publisher = "Wiley-Blackwell",
number = "8",

}

RIS

TY - JOUR

T1 - Patient-reported quality of care in primary sclerosing cholangitis

AU - Walmsley, Martine

AU - Tornai, Dávid

AU - Cazzagon, Nora

AU - Leburgue, Angela

AU - Mrzljak, Anna

AU - Lenzen, Henrike

AU - Carbone, Marco

AU - Madaleno, João

AU - Lleo, Ana

AU - Junge, Norman

AU - Schramm, Christoph

AU - Bergquist, Annika

N1 - © 2023 The Authors. Liver International published by John Wiley & Sons Ltd.

PY - 2023/8

Y1 - 2023/8

N2 - BACKGROUND: Management and follow-up strategies for primary sclerosing cholangitis (PSC) vary. The aim of the present study was to assess patient-reported quality of care to identify the most important areas for improvement.METHODS: Data were collected via an online survey hosted on the EU Survey platform in 11 languages between October 2021 and January 2022. Questions were asked about the disease, symptoms, treatment, investigations and quality of care.RESULTS: In total, 798 nontransplanted people with PSC from 33 countries responded. Eighty-six per cent of respondents reported having had at least one symptom. Twenty-four per cent had never undergone an elastography, and 8% had not had a colonoscopy. Nearly half (49%) had never undergone a bone density scan. Ursodeoxycholic acid (UDCA) was used in 90-93% in France, Netherlands and Germany, and 49-50% in the United Kingdom and Sweden. Itch was common (60%), and 50% of those had received any medication. Antihistamines were taken by 27%, cholestyramine by 21%, rifampicin by 13% and bezafibrate by 6.5%. Forty-one per cent had been offered participation in a clinical trial or research. The majority (91%) reported that they were confident with their care although half of the individuals reported the need for more information on disease prognosis and diet.CONCLUSION: Symptom burden in PSC is high, and the most important areas of improvement are disease monitoring with more widespread use of elastography, bone density scan and appropriate treatment for itch. Personalised prognostic information should be offered to all individuals with PSC and include information on how they can improve their health.

AB - BACKGROUND: Management and follow-up strategies for primary sclerosing cholangitis (PSC) vary. The aim of the present study was to assess patient-reported quality of care to identify the most important areas for improvement.METHODS: Data were collected via an online survey hosted on the EU Survey platform in 11 languages between October 2021 and January 2022. Questions were asked about the disease, symptoms, treatment, investigations and quality of care.RESULTS: In total, 798 nontransplanted people with PSC from 33 countries responded. Eighty-six per cent of respondents reported having had at least one symptom. Twenty-four per cent had never undergone an elastography, and 8% had not had a colonoscopy. Nearly half (49%) had never undergone a bone density scan. Ursodeoxycholic acid (UDCA) was used in 90-93% in France, Netherlands and Germany, and 49-50% in the United Kingdom and Sweden. Itch was common (60%), and 50% of those had received any medication. Antihistamines were taken by 27%, cholestyramine by 21%, rifampicin by 13% and bezafibrate by 6.5%. Forty-one per cent had been offered participation in a clinical trial or research. The majority (91%) reported that they were confident with their care although half of the individuals reported the need for more information on disease prognosis and diet.CONCLUSION: Symptom burden in PSC is high, and the most important areas of improvement are disease monitoring with more widespread use of elastography, bone density scan and appropriate treatment for itch. Personalised prognostic information should be offered to all individuals with PSC and include information on how they can improve their health.

KW - Humans

KW - Cholangitis, Sclerosing/diagnosis

KW - Ursodeoxycholic Acid/therapeutic use

KW - Prognosis

KW - Pruritus/drug therapy

KW - Patient Reported Outcome Measures

KW - Quality of Health Care

U2 - 10.1111/liv.15650

DO - 10.1111/liv.15650

M3 - SCORING: Journal article

C2 - 37312635

VL - 43

SP - 1654

EP - 1662

JO - LIVER INT

JF - LIVER INT

SN - 1478-3223

IS - 8

ER -