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X Demographics
Mendeley readers
Attention Score in Context
| Title |
HDQLIFE: development and assessment of health-related quality of life in Huntington disease (HD)
|
|---|---|
| Published in |
Quality of Life Research, August 2016
|
| DOI | 10.1007/s11136-016-1386-3 |
| Pubmed ID | |
| Authors |
N. E. Carlozzi, S. G. Schilling, J.-S. Lai, J. S. Paulsen, E. A. Hahn, J. S. Perlmutter, C. A. Ross, N. R. Downing, A. L. Kratz, M. K. McCormack, M. A. Nance, K. A. Quaid, J. C. Stout, R. C. Gershon, R. E. Ready, J. A. Miner, S. K. Barton, S. L. Perlman, S. M. Rao, S. Frank, I. Shoulson, H. Marin, M. D. Geschwind, P. Dayalu, S. M. Goodnight, D. Cella |
| Abstract |
Huntington disease (HD) is a chronic, debilitating genetic disease that affects physical, emotional, cognitive, and social health. Existing patient-reported outcomes (PROs) of health-related quality of life (HRQOL) used in HD are neither comprehensive, nor do they adequately account for clinically meaningful changes in function. While new PROs examining HRQOL (i.e., Neuro-QoL-Quality of Life in Neurological Disorders and PROMIS-Patient-Reported Outcomes Measurement Information System) offer solutions to many of these shortcomings, they do not include HD-specific content, nor have they been validated in HD. HDQLIFE addresses this by validating 12 PROMIS/Neuro-QoL domains in individuals with HD and by using established PROMIS methodology to develop new, HD-specific content. New item pools were developed using cognitive debriefing with individuals with HD, and expert, literacy, and translatability reviews. Existing item banks and new item pools were field tested in 536 individuals with prodromal, early-, or late-stage HD. Moderate to strong relationships between Neuro-QoL/PROMIS measures and generic self-report measures of HRQOL, and moderate relationships between Neuro-QoL/PROMIS and clinician-rated measures of similar constructs supported the validity of Neuro-QoL/PROMIS in individuals with HD. Exploratory and confirmatory factor analysis, item response theory, and differential item functioning analyses were utilized to develop new item banks for Chorea, Speech Difficulties, Swallowing Difficulties, and Concern with Death and Dying, with corresponding six-item short forms. A four-item short form was developed for Meaning and Purpose. HDQLIFE encompasses both validated Neuro-QoL/PROMIS measures, as well as five new scales in order to provide a comprehensive assessment of HRQOL in HD. |
X Demographics
The data shown below were collected from the profiles of 3 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 States | 1 | 33% |
| Unknown | 2 | 67% |
Demographic breakdown
| Type | Count | As % |
|---|---|---|
| Members of the public | 3 | 100% |
Mendeley readers
The data shown below were compiled from readership statistics for 144 Mendeley readers of this research output. Click here to see the associated Mendeley record.
Geographical breakdown
| Country | Count | As % |
|---|---|---|
| Unknown | 144 | 100% |
Demographic breakdown
| Readers by professional status | Count | As % |
|---|---|---|
| Student > Bachelor | 16 | 11% |
| Researcher | 15 | 10% |
| Student > Master | 13 | 9% |
| Student > Ph. D. Student | 12 | 8% |
| Student > Doctoral Student | 11 | 8% |
| Other | 28 | 19% |
| Unknown | 49 | 34% |
| Readers by discipline | Count | As % |
|---|---|---|
| Nursing and Health Professions | 23 | 16% |
| Medicine and Dentistry | 17 | 12% |
| Psychology | 17 | 12% |
| Neuroscience | 10 | 7% |
| Social Sciences | 6 | 4% |
| Other | 18 | 13% |
| Unknown | 53 | 37% |
Attention Score in Context
This research output has an Altmetric Attention Score of 15. 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 20 December 2017.
All research outputs
#2,083,571
of 22,882,389 outputs
Outputs from Quality of Life Research
#128
of 2,851 outputs
Outputs of similar age
#40,177
of 354,866 outputs
Outputs of similar age from Quality of Life Research
#2
of 65 outputs
Altmetric has tracked 22,882,389 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 2,851 research outputs from this source. They receive a mean Attention Score of 4.6. This one has done particularly well, scoring higher than 95% of its peers.
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 354,866 tracked outputs that were published within six weeks on either side of this one in any source. This one has done well, scoring higher than 88% of its contemporaries.
We're also able to compare this research output to 65 others from the same source and published within six weeks on either side of this one. This one has done particularly well, scoring higher than 96% of its contemporaries.