Development of a tool to describe overall health, social independence and activity limitation of adolescents and young adults with disability

Deroche, Chelsea B.; Holland, Margaret M.; McDermott, Suzanne; Royer, Julie A.; Hardin, James W.; Mann, Joshua R.; Salzberg, Deborah; Ozturk, Orgul; Ouyang, Lijing

doi:10.1016/j.ridd.2014.12.009

i

Development of a tool to describe overall health, social independence and activity limitation of adolescents and young adults with disability

Supporting Files

Jan 09 2015
By Deroche, Chelsea B. ; Holland, Margaret M. ; McDermott, Suzanne ; ...

Details

Alternative Title:

Res Dev Disabil
Personal Author:

Deroche, Chelsea B. ; Holland, Margaret M. ; McDermott, Suzanne ; Royer, Julie A. ; Hardin, James W. ; Mann, Joshua R. ; Salzberg, Deborah ; Ozturk, Orgul ; Ouyang, Lijing
Description:

There is a need for research that focuses on the correlation between self-perceived quality of life (QoL) and the health outcomes of adolescents with disability transitioning to adulthood. To better understand the transition experience of adolescents and young adults with disability, we developed a questionnaire to assess the impact of disability on QoL. We recruited 174 participants who were 15-24 years old and diagnosed with Fragile X syndrome (FXS), spina bifida (SB) or muscular dystrophy (MD) and conducted an exploratory factor analysis to identify factors that characterize QoL. Five factors emerged: emotional health, physical health, independence, activity limitation, and community participation. To validate the tool, we linked medical claims and other administrative data records and examined the association of the factor scores with health care utilization and found the questionnaire can be utilized among diverse groups of young people with disability.
Subjects:

Activities Of Daily Living Adolescent Article Disabled Persons Factor Analysis Factor Analysis, Statistical Female Fragile X Syndrome Health Status Humans Male Muscular Dystrophies Muscular Dystrophy Quality Of Life Rare Conditions Reproducibility Of Results Social Behavior Spina Bifida Spinal Dysraphism Survey Instrument Surveys And Questionnaires Young Adult
Source:

Res Dev Disabil. 38:288-300.
Pubmed ID:

25577179
Pubmed Central ID:

PMC4591546
Document Type:

Journal Article
Funding:

1U01DD000776-1/DD/NCBDD CDC HHS/United States ; CC999999/Intramural CDC HHS/United States ; U01 DD000776/DD/NCBDD CDC HHS/United States
Volume:

38
Collection(s):

CDC Public Access
Main Document Checksum:

urn:sha256:497db28c7baafb6f897ca9642ca73b87416a90034fd46cd64e8464b46881be1b
Download URL:

https://stacks.cdc.gov/view/cdc/34663/cdc_34663_DS1.pdf
File Type:

[PDF - 3.54 MB ]

ON THIS PAGE

Details Supporting Files

CDC STACKS serves as an archival repository of CDC-published products including scientific findings, journal articles, guidelines, recommendations, or other public health information authored or co-authored by CDC or funded partners.

As a repository, CDC STACKS retains documents in their original published format to ensure public access to scientific information.