| Title |
Patient-reported outcome measures used in patients with primary sclerosing cholangitis: a systematic review
|
|---|---|
| Published in |
Health and Quality of Life Outcomes, July 2018
|
| DOI | 10.1186/s12955-018-0951-6 |
| Pubmed ID | |
| Authors |
Fatima Isa, Grace M. Turner, Geetinder Kaur, Derek Kyte, Anita Slade, Tanya Pankhurst, Larissa Kerecuk, Thomas Keeley, James Ferguson, Melanie Calvert |
| Abstract |
Primary 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. The aim of the systematic review was to: (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. A 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. Thirty-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. A 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. |
X Demographics
The data shown below were collected from the profiles of 11 X users who shared this research output. Click here to find out more about how the information was compiled.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| United Kingdom | 7 | 64% |
| Unknown | 4 | 36% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 7 | 64% |
| Practitioners (doctors, other healthcare professionals) | 2 | 18% |
| Scientists | 2 | 18% |
Mendeley readers
The data shown below were compiled from readership statistics for 60 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 60 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Doctoral Student | 8 | 13% |
| Student > Master | 7 | 12% |
| Other | 5 | 8% |
| Student > Ph. D. Student | 5 | 8% |
| Researcher | 3 | 5% |
| Other | 12 | 20% |
| Unknown | 20 | 33% |
| Readers by discipline | Count | As % |
|---|---|---|
| Medicine and Dentistry | 16 | 27% |
| Social Sciences | 7 | 12% |
| Nursing and Health Professions | 5 | 8% |
| Psychology | 5 | 8% |
| Biochemistry, Genetics and Molecular Biology | 1 | 2% |
| Other | 3 | 5% |
| Unknown | 23 | 38% |
Attention Score in Context
This research output has an Altmetric Attention Score of 14. This is our high-level measure of the quality and quantity of online attention that it has received. This Attention Score, as well as the ranking and number of research outputs shown below, was calculated when the research output was last mentioned on 24 August 2018.
All research outputs
#2,198,217
of 23,094,276 outputs
Outputs from Health and Quality of Life Outcomes
#135
of 2,188 outputs
Outputs of similar age
#47,595
of 327,553 outputs
Outputs of similar age from Health and Quality of Life Outcomes
#11
of 69 outputs
Altmetric has tracked 23,094,276 research outputs across all sources so far. Compared to these this one has done particularly well and is in the 90th percentile: it's in the top 10% of all research outputs ever tracked by Altmetric.
So far Altmetric has tracked 2,188 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 5.5. This one has done particularly well, scoring higher than 93% of its peers.
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We're also able to compare this research output to 69 others from the same source and published within six weeks on either side of this one. This one has done well, scoring higher than 84% of its contemporaries.