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Study Detail

Study ID 1030
Name Adult Sickle Cell Quality of Life Measurement Information System Field Test
Contact Email sankeller@air.org
Acronym ASCQ-Me
Period 2016
Design Field Test
Study PI San Keller
Institution American Institutes of Research
URL https://dataverse.harvard.edu/dataset.xhtml?persistentId=doi:10.7910/DVN/8OFSL3
CTGovID NA
Funding Agency NHLBI
Grant Number HHSN-268-2005-74264C
Overview ASCQ-MeSM (Adult Sickle Cell Quality of Life Measurement Information System) is a patient-reported outcome measurement system that evaluates and monitors the physical, mental, and social well-being of adults with sickle cell disease. Measure development began with a comprehensive literature review that identified important aspects of HRQOL for assessment including pain and its management, emotional distress, functioning in social, family, sexual, and work-related roles, overall quality of life, and quality of care. Field testing of items was conducted with 556 adults recruited through seven geographically diverse US clinics.
Focus Areas 1. Pain
2. Emotional distress
3. Social-role functioning
4. Overall quality of life
5. Quality of care
Outcomes 1. Pain Impact
2. Emotional Impact
3. Sleep Quality
4. Social Functioning
5. Physical Functioning
Data Location Harvard Dataverse
Biospecimen Available N/A
Data Consent Harvard Dataverse
Biospecimen Consent No sample
Contact Consent NA
Genomic Data No
Age Range 18-64
No. Participants 561
Inclusion Criteria 1. Had a confirmed diagnosis of sickle cell disease (SCD).
2. Were 18 years of age or older.
3. Were able to provide informed consent.
4. Did not have significant cognitive impairments that would interfere with their ability to complete the survey.
Exclusion Criteria 1. Did not have a confirmed diagnosis of sickle cell disease (SCD).
2. Were under the age of 18.
3. Were unable to provide informed consent.
4. Had a significant cognitive impairment that would interfere with their ability to complete the survey.
Study Documentation
  Select All 		   1. ASCQ-Me-Field-Test-ASCQ-Me-Data-Dictionary
   2. ASCQ-Me-Field-Test-PROMIS-Scores-Data-Dictionary_v2
Forms
  Select All

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