Patient-reported outcome measures used in patients with primary sclerosing cholangitis: a systematic review

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@article{34874dd9bbe447cf9d87df924a1c8cb0,
title = "Patient-reported outcome measures used in patients with primary sclerosing cholangitis: a systematic review",
abstract = "BackgroundPrimary Sclerosing Cholangitis (PSC) is a rare chronic, cholestatic liver condition in which patients can experience a range of debilitating symptoms. Patient reported outcome measures (PROMs) could provide a valuable insight into the impact of PSC on patient quality of life and symptoms. A previous review has been conducted on the quality of life instruments used in liver transplant recipients. However, there has been no comprehensive review evaluating PROM use or measurement properties in PSC patients{\textquoteright} to-date. Aim(a) To identify and categorise which PROMs are currently being used in research involving the PSC population (b) To investigate the measurement properties of PROMs used in PSC. MethodsA systematic review of Medline, EMBASE and CINAHL, from inception to February 2018, was undertaken. The methodological quality of included studies was assessed using the Consensus-based Standards for selection of health Measurement Instruments (COSMIN) checklist. ResultsThirty-seven studies were identified, which included 36 different PROMs. Seven PROMs were generic, 10 disease-specific, 17 symptom-specific measures and 2 measures on dietary intake. The most common PROMs were the Short form-36 (SF-36) (n=15) and Chronic liver disease questionnaire (CLDQ) (n=6). Only three studies evaluated measurement properties, two studies evaluated the National Institute of Diabetes Digestive and Kidney Diseases Liver Transplant (NIDDK-QA) and one study evaluated the PSC PRO; however, according to the COSMIN guidelines, methodological quality was poor for the NIDDK-QA studies and fair for the PSC PRO study. ConclusionA wide variety of PROMs have been used to assess health-related quality of life and symptom burden in patients with PSC; however only two measures (NIDDK-QA and PSC PRO) have been formally validated in this population. The newly developed PSC PRO requires further validation in PSC patients with diverse demographics, comorbidities and at different stages of disease; however this is a promising new measure with which to assess the impact of PSC on patient quality of life and symptoms.",
keywords = "Primary sclerosing cholangitis, Cholestasis, Patient-Reported Outcome Measures, PROMs",
author = "Fatima Isa and Grace Turner and Geetinder Kaur and Derek Kyte and Anita Slade and Melanie Calvert and Tanya Pankhurst and James Ferguson and Larissa Kerecuk and Thomas Keeley",
year = "2018",
month = jul,
day = "5",
doi = "10.1186/s12955-018-0951-6",
language = "English",
volume = "16",
journal = "Health and Quality Life Outcomes",
issn = "1477-7525",
publisher = "Springer",

}

RIS

TY - JOUR

T1 - Patient-reported outcome measures used in patients with primary sclerosing cholangitis: a systematic review

AU - Isa, Fatima

AU - Turner, Grace

AU - Kaur, Geetinder

AU - Kyte, Derek

AU - Slade, Anita

AU - Calvert, Melanie

AU - Pankhurst, Tanya

AU - Ferguson, James

AU - Kerecuk, Larissa

AU - Keeley, Thomas

PY - 2018/7/5

Y1 - 2018/7/5

N2 - BackgroundPrimary Sclerosing Cholangitis (PSC) is a rare chronic, cholestatic liver condition in which patients can experience a range of debilitating symptoms. Patient reported outcome measures (PROMs) could provide a valuable insight into the impact of PSC on patient quality of life and symptoms. A previous review has been conducted on the quality of life instruments used in liver transplant recipients. However, there has been no comprehensive review evaluating PROM use or measurement properties in PSC patients’ to-date. Aim(a) To identify and categorise which PROMs are currently being used in research involving the PSC population (b) To investigate the measurement properties of PROMs used in PSC. MethodsA systematic review of Medline, EMBASE and CINAHL, from inception to February 2018, was undertaken. The methodological quality of included studies was assessed using the Consensus-based Standards for selection of health Measurement Instruments (COSMIN) checklist. ResultsThirty-seven studies were identified, which included 36 different PROMs. Seven PROMs were generic, 10 disease-specific, 17 symptom-specific measures and 2 measures on dietary intake. The most common PROMs were the Short form-36 (SF-36) (n=15) and Chronic liver disease questionnaire (CLDQ) (n=6). Only three studies evaluated measurement properties, two studies evaluated the National Institute of Diabetes Digestive and Kidney Diseases Liver Transplant (NIDDK-QA) and one study evaluated the PSC PRO; however, according to the COSMIN guidelines, methodological quality was poor for the NIDDK-QA studies and fair for the PSC PRO study. ConclusionA wide variety of PROMs have been used to assess health-related quality of life and symptom burden in patients with PSC; however only two measures (NIDDK-QA and PSC PRO) have been formally validated in this population. The newly developed PSC PRO requires further validation in PSC patients with diverse demographics, comorbidities and at different stages of disease; however this is a promising new measure with which to assess the impact of PSC on patient quality of life and symptoms.

AB - BackgroundPrimary Sclerosing Cholangitis (PSC) is a rare chronic, cholestatic liver condition in which patients can experience a range of debilitating symptoms. Patient reported outcome measures (PROMs) could provide a valuable insight into the impact of PSC on patient quality of life and symptoms. A previous review has been conducted on the quality of life instruments used in liver transplant recipients. However, there has been no comprehensive review evaluating PROM use or measurement properties in PSC patients’ to-date. Aim(a) To identify and categorise which PROMs are currently being used in research involving the PSC population (b) To investigate the measurement properties of PROMs used in PSC. MethodsA systematic review of Medline, EMBASE and CINAHL, from inception to February 2018, was undertaken. The methodological quality of included studies was assessed using the Consensus-based Standards for selection of health Measurement Instruments (COSMIN) checklist. ResultsThirty-seven studies were identified, which included 36 different PROMs. Seven PROMs were generic, 10 disease-specific, 17 symptom-specific measures and 2 measures on dietary intake. The most common PROMs were the Short form-36 (SF-36) (n=15) and Chronic liver disease questionnaire (CLDQ) (n=6). Only three studies evaluated measurement properties, two studies evaluated the National Institute of Diabetes Digestive and Kidney Diseases Liver Transplant (NIDDK-QA) and one study evaluated the PSC PRO; however, according to the COSMIN guidelines, methodological quality was poor for the NIDDK-QA studies and fair for the PSC PRO study. ConclusionA wide variety of PROMs have been used to assess health-related quality of life and symptom burden in patients with PSC; however only two measures (NIDDK-QA and PSC PRO) have been formally validated in this population. The newly developed PSC PRO requires further validation in PSC patients with diverse demographics, comorbidities and at different stages of disease; however this is a promising new measure with which to assess the impact of PSC on patient quality of life and symptoms.

KW - Primary sclerosing cholangitis

KW - Cholestasis

KW - Patient-Reported Outcome Measures

KW - PROMs

U2 - 10.1186/s12955-018-0951-6

DO - 10.1186/s12955-018-0951-6

M3 - Article

VL - 16

JO - Health and Quality Life Outcomes

JF - Health and Quality Life Outcomes

SN - 1477-7525

M1 - 133

ER -