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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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1 tweeter

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3 Dimensions

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14 Mendeley
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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.

Twitter Demographics

The data shown below were collected from the profile of 1 tweeter who shared this research output. Click here to find out more about how the information was compiled.

Mendeley readers

The data shown below were compiled from readership statistics for 14 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 14 100%

Demographic breakdown

Readers by professional status Count As %
Researcher 3 21%
Student > Master 2 14%
Student > Ph. D. Student 1 7%
Student > Bachelor 1 7%
Student > Doctoral Student 1 7%
Other 2 14%
Unknown 4 29%
Readers by discipline Count As %
Medicine and Dentistry 5 36%
Psychology 2 14%
Nursing and Health Professions 2 14%
Neuroscience 1 7%
Unknown 4 29%

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
#7,724,428
of 12,361,048 outputs
Outputs from Orphanet Journal of Rare Diseases
#938
of 1,335 outputs
Outputs of similar age
#195,918
of 350,564 outputs
Outputs of similar age from Orphanet Journal of Rare Diseases
#37
of 58 outputs
Altmetric has tracked 12,361,048 research outputs across all sources so far. This one is in the 23rd percentile – i.e., 23% of other outputs scored the same or lower than it.
So far Altmetric has tracked 1,335 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 7.0. This one is in the 22nd percentile – i.e., 22% of its peers scored the same or lower than it.
Older research outputs will score higher simply because they've had more time to accumulate mentions. To account for age we can compare this Altmetric Attention Score to the 350,564 tracked outputs that were published within six weeks on either side of this one in any source. This one is in the 34th percentile – i.e., 34% of its contemporaries scored the same or lower than it.
We're also able to compare this research output to 58 others from the same source and published within six weeks on either side of this one. This one is in the 25th percentile – i.e., 25% of its contemporaries scored the same or lower than it.