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A qualitative study of perceptions of meaningful change in spinal muscular atrophy

Overview of attention for article published in BMC Neurology, April 2017
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61 Mendeley
Title
A qualitative study of perceptions of meaningful change in spinal muscular atrophy
Published in
BMC Neurology, April 2017
DOI 10.1186/s12883-017-0853-y
Pubmed ID
Authors

Sarah McGraw, Ying Qian, Jeff Henne, Jill Jarecki, Kenneth Hobby, Wei-Shi Yeh

Abstract

This qualitative study examined how individuals with Spinal Muscular Atrophy (SMA), their caregivers, and clinicians defined meaningful change, primarily in the Type II and non-ambulant type III patient populations, associated with treatment of this condition. In addition, we explored participants' views about two measures of motor function routinely used in clinical trials for these SMA subtypes, namely the expanded version of the Hammersmith Functional Motor Scale (HFMSE) and the Upper Limb Module (ULM). The 123 participants (21 with SMA, 64 parents, and 11 clinicians), recruited through SMA advocacy organizations, participated in one of 16 focus groups or 37 interviews. The sessions were audio-recorded, and verbatim transcripts were analyzed using a grounded theory approach. For the participants, meaningful change was relative to functional ability, and small changes in motor function could have an important impact on quality of life. Because patients and families feared progressive loss of functional ability, the participants saw maintenance of abilities as a meaningful outcome. They believed that measures of motor function covered important items, but worried that the HFMSE and ULM might not be sensitive enough to capture small changes. In addition, they felt that outcome measures should assess other important features of life with SMA, including the ability to perform daily activities, respiratory function, swallowing, fatigue, and endurance. Given the heterogeneity of SMA, it is important to expand the assessment of treatment effects to a broader range of outcomes using measures sensitive enough to detect small changes.

Mendeley readers

The data shown below were compiled from readership statistics for 61 Mendeley readers of this research output. Click here to see the associated Mendeley record.

Geographical breakdown

Country Count As %
Unknown 61 100%

Demographic breakdown

Readers by professional status Count As %
Researcher 11 18%
Other 9 15%
Student > Master 9 15%
Student > Bachelor 8 13%
Student > Ph. D. Student 8 13%
Other 11 18%
Unknown 5 8%
Readers by discipline Count As %
Medicine and Dentistry 17 28%
Nursing and Health Professions 8 13%
Psychology 6 10%
Biochemistry, Genetics and Molecular Biology 6 10%
Pharmacology, Toxicology and Pharmaceutical Science 5 8%
Other 9 15%
Unknown 10 16%

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 12 April 2017.
All research outputs
#7,469,824
of 9,679,413 outputs
Outputs from BMC Neurology
#1,057
of 1,322 outputs
Outputs of similar age
#186,814
of 260,803 outputs
Outputs of similar age from BMC Neurology
#24
of 26 outputs
Altmetric has tracked 9,679,413 research outputs across all sources so far. This one is in the 12th percentile – i.e., 12% of other outputs scored the same or lower than it.
So far Altmetric has tracked 1,322 research outputs from this source. They typically receive a little more attention than average, with a mean Attention Score of 5.3. This one is in the 9th percentile – i.e., 9% 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 260,803 tracked outputs that were published within six weeks on either side of this one in any source. This one is in the 16th percentile – i.e., 16% of its contemporaries scored the same or lower than it.
We're also able to compare this research output to 26 others from the same source and published within six weeks on either side of this one. This one is in the 7th percentile – i.e., 7% of its contemporaries scored the same or lower than it.