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Disease-specific health related quality of life patient reported outcome measures in Genodermatoses: a systematic review and critical evaluation

Overview of attention for article published in Orphanet Journal of Rare Diseases, December 2017
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Title
Disease-specific health related quality of life patient reported outcome measures in Genodermatoses: a systematic review and critical evaluation
Published in
Orphanet Journal of Rare Diseases, December 2017
DOI 10.1186/s13023-017-0739-5
Pubmed ID
Authors

John W. Frew, Mark Davidson, Dedee F. Murrell

Abstract

Health Related Quality of Life (HR-QoL) Patient reported outcome measures (PROMs) have high utility in evaluation of new interventions in genodermatoses, however inconsistent standards of development and validation have hampered widespread acceptance and adoption. To identify all published HR-QoL PROMs in genodermatoses and critically evaluate their development and measurement properties. This systematic review was registered with PROSPERO (CRD42016053301). Ovid Medline, Embase and PsycINFO databases were utilised for literature review using predefined inclusion and exclusion criteria. PROM development was assessed using the COSMIN Checklist and measurement properties were assessed against quality criteria for measurement properties of health standard questionnaires. 15 HRQoL PROMs in genodermatoses were identified. Major areas of deficiency in development were internal consistency, reliability and structural validity. No PROM satisfied measurement property standards for agreement, responsiveness or floor and ceiling effects. Four PROMs included Minimal Important Change scores for interpretability. Issues regarding the generalisability of the evaluated PROMs in culturally diverse and paediatric populations remain unresolved. The overall standards of development and measurement properties in PROMs in genodermatoses is fair, despite no single instrument meeting all requirements. None are perfectly validated according to COSMIN criteria but seven of the fifteen PROMs may be appropriate pending further validation. The development of culturally appropriate and child-specific variants of PROMs should be a priority in order to increase the utility of patient based outcome measures in genodermatoses in various patient populations.

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Mendeley readers

Mendeley readers

The data shown below were compiled from readership statistics for 26 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 26 100%

Demographic breakdown

Readers by professional status Count As %
Researcher 5 19%
Student > Master 4 15%
Student > Ph. D. Student 2 8%
Other 1 4%
Student > Doctoral Student 1 4%
Other 2 8%
Unknown 11 42%
Readers by discipline Count As %
Medicine and Dentistry 6 23%
Nursing and Health Professions 3 12%
Psychology 3 12%
Neuroscience 2 8%
Pharmacology, Toxicology and Pharmaceutical Science 1 4%
Other 0 0%
Unknown 11 42%
Attention Score in Context

Attention Score in Context

This research output has an Altmetric Attention Score of 1. 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 30 December 2017.
All research outputs
#15,487,739
of 23,015,156 outputs
Outputs from Orphanet Journal of Rare Diseases
#1,818
of 2,640 outputs
Outputs of similar age
#269,375
of 441,864 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#26
of 34 outputs
Altmetric has tracked 23,015,156 research outputs across all sources so far. This one is in the 22nd percentile – i.e., 22% of other outputs scored the same or lower than it.
So far Altmetric has tracked 2,640 research outputs from this source. They typically receive more attention than average, with a mean Attention Score of 7.6. This one is in the 22nd percentile – i.e., 22% of its peers scored the same or lower than it.
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We're also able to compare this research output to 34 others from the same source and published within six weeks on either side of this one. This one is in the 14th percentile – i.e., 14% of its contemporaries scored the same or lower than it.