Dataset Information

Synthesis and summary of patient-reported outcome measures to inform the development of a core outcome set in colorectal cancer surgery.

ABSTRACT:

Aim

Patient-reported outcome (PRO) measures (PROMs) are standard measures in the assessment of colorectal cancer (CRC) treatment, but the range and complexity of available PROMs may be hindering the synthesis of evidence. This systematic review aimed to: (i) summarize PROMs in studies of CRC surgery and (ii) categorize PRO content to inform the future development of an agreed minimum 'core' outcome set to be measured in all trials.

Method

All PROMs were identified from a systematic review of prospective CRC surgical studies. The type and frequency of PROMs in each study were summarized, and the number of items documented. All items were extracted and independently categorized by content by two researchers into 'health domains', and discrepancies were discussed with a patient and expert. Domain popularity and the distribution of items were summarized.

Results

Fifty-eight different PROMs were identified from the 104 included studies. There were 23 generic, four cancer-specific, 11 disease-specific and 16 symptom-specific questionnaires, and three ad hoc measures. The most frequently used PROM was the EORTC QLQ-C30 (50 studies), and most PROMs (n = 40, 69%) were used in only one study. Detailed examination of the 50 available measures identified 917 items, which were categorized into 51 domains. The domains comprising the most items were 'anxiety' (n = 85, 9.2%), 'fatigue' (n = 67, 7.3%) and 'physical function' (n = 63, 6.9%). No domains were included in all PROMs.

Conclusion

There is major heterogeneity of PRO measurement and a wide variation in content assessed in the PROMs available for CRC. A core outcome set will improve PRO outcome measurement and reporting in CRC trials.

SUBMITTER: McNair AG

PROVIDER: S-EPMC4744711 | biostudies-literature | 2015 Nov

REPOSITORIES: biostudies-literature

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Publications

Synthesis and summary of patient-reported outcome measures to inform the development of a core outcome set in colorectal cancer surgery.

McNair A G K AG Whistance R N RN Forsythe R O RO Rees J J Jones J E JE Pullyblank A M AM Avery K N L KN Brookes S T ST Thomas M G MG Sylvester P A PA Russell A A Oliver A A Morton D D Kennedy R R Jayne D G DG Huxtable R R Hackett R R Dutton S J SJ Coleman M G MG Card M M Brown J J Blazeby J M JM

Colorectal disease : the official journal of the Association of Coloproctology of Great Britain and Ireland 20151101 11

<h4>Aim</h4>Patient-reported outcome (PRO) measures (PROMs) are standard measures in the assessment of colorectal cancer (CRC) treatment, but the range and complexity of available PROMs may be hindering the synthesis of evidence. This systematic review aimed to: (i) summarize PROMs in studies of CRC surgery and (ii) categorize PRO content to inform the future development of an agreed minimum 'core' outcome set to be measured in all trials.<h4>Method</h4>All PROMs were identified from a systemati ...[more]

PMID: 26058878

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Project description:ObjectiveThe objectives of the study were to (1) map questions in epilepsy-specific patient-reported outcome measures (PROMs) of children's health-related quality of life (HRQoL) to a proposed core outcome set (COS) for childhood epilepsy research and (2) gain insight into the acceptability of two leading candidate PROMs.MethodWe identified 11 epilepsy-specific PROMs of children's HRQoL (17 questionnaire versions) in a previous systematic review. Each item from the PROMs was mapped to 38 discrete outcomes across 10 domains of the COS: seizures, sleep, social functioning, mental health, cognition, physical functioning, behavior, adverse events, family life, and global quality of life. We consulted with three children with epilepsy and six parents of children with epilepsy in Patient Public Involvement and Engagement (PPIE) work to gain an understanding of the acceptability of the two leading PROMs from our review of measurement properties: Quality of Life in Childhood Epilepsy (QOLCE-55) and Health-Related Quality of Life Measure for Children with Epilepsy (CHEQOL).ResultsSocial Functioning is covered by all PROMs except DISABKIDS and G-QOLCE and Mental Health is covered by all PROMs except G-QOLCE and Hague Restrictions in Childhood Epilepsy Scale (HARCES). Only two PROMs (Epilepsy and Learning Disability Quality of Life (ELDQOL) and Glasgow Epilepsy Outcome Scale (GEOS-YP)) have items that cover the Seizure domain. The QOLCE-55 includes items that cover the domains of Physical Functioning, Social Functioning, Behavior, Mental Health, and Cognition. The CHEQOL parent and child versions cover the same domains as QOLCE-55 except for Physical Functioning and Behavior, and the child version has one item that covers the discrete outcome of Overall Quality of Life and one item that covers the discrete outcome of Relationship with parents and siblings. The QOLCE-55 parent version was acceptable to the parents we consulted with, and CHEQOL parent and child versions were described as acceptable to our child and parent advisory panel members.SignificanceMapping items from existing epilepsy-specific PROMs for children is an important step in operationalizing our COS for childhood epilepsy research, alongside evaluation of their measurement properties. Two leading PROMS, QOLCE-55 and CHEQOL, cover a wide range of domains from our COS and would likely be used in conjunction with assessment tools selected for specific study objectives. The PPIE work provided practical insights into the administration and acceptability of candidate PROMs in appropriate context. We promote our COS as a framework for selecting outcomes and PROMs for future childhood epilepsy evaluative research.

Project description:BackgroundThere is growing interest in using patient-reported outcome measures to support value-based care in colorectal surgery. To draw valid conclusions regarding patient-reported outcomes data, measures with robust measurement properties are required.ObjectiveThe purpose of this study was to assess the use and quality of patient-reported outcome measures in colorectal surgery.Data sourcesThree major databases were searched for studies using patient-reported outcome measures in the context of colorectal surgery.Study selectionArticles that used patient-reported outcome measures as outcome for colorectal surgical intervention in a comparative effectiveness analysis were included. Exclusion criteria included articles older than 11 years, non-English language, age <18 years, fewer than 40 patients, case reports, review articles, and studies without comparison.Main outcome measuresThis was a quality assessment using a previously reported checklist of psychometric properties.ResultsFrom 2007 to 2018, 368 studies were deemed to meet inclusion criteria. These studies used 165 distinct patient-reported outcome measures. Thirty were used 5 or more times and were selected for quality assessment. Overall, the measures were generally high quality, with 21 (70%) scoring ≥14 on an 18-point scale. Notable weaknesses included management of missing data (14%) and description of literacy level (0%).LimitationsThe study was limited by its use of original articles for quality assessment. Measures were selected for quality analysis based on frequency of use rather than other factors, such as impact of the article or number of patients in the study.ConclusionsPatient-reported outcome measures are widely used in colorectal research. There was a wide range of measures available, and many were used only once. The most frequently used measures are generally high quality, but a majority lack details on how to deal with missing data and information on literacy levels. As the use of patient-reported outcome measures to assess colorectal surgical intervention increases, researchers and practitioners need to become more knowledgeable about the measures available and their quality.

Dataset Information

Synthesis and summary of patient-reported outcome measures to inform the development of a core outcome set in colorectal cancer surgery.

Aim

Method

Results

Conclusion

Publications

Synthesis and summary of patient-reported outcome measures to inform the development of a core outcome set in colorectal cancer surgery.

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