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A pilot test of the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) and the Jenerette Self-Care Assessment (J-SAT) Tools in adults with sickle cell disease.

Publication ,  Journal Article
Bulgin, D; Douglas, C; Tanabe, P
Published in: Pilot and feasibility studies
January 2019

The purpose of this study was to pilot test two sickle cell-specific instruments, the Adult Sickle Cell Quality of Life Measurement Information System (ASCQ-Me) and Jenerette Self-Care Assessment Tool (J-SAT), to determine recruitment rate, percent completion of the instrument battery, and patient perceptions of health-related quality of life outcomes and self-care activities in a convenience sample of adults with sickle cell disease (SCD).A cross-sectional pilot study was conducted. Participants were recruited from a sickle cell clinic and conference on SCD. Subjects completed self-administered assessments including demographic and clinical characteristics, ASCQ-Me, and the J-SAT.Twenty of 22 participants completed the instruments (2 refusals) and most instruments had 100% completion rates. Participants reported average to healthier status on ASCQ-Me measures than a normative referent population of 556 individuals with SCD. Participants also reported high disease severity and high J-SAT scores (mean = 30.2), indicating frequent participation in self-care activities.There was good participation, low refusal rates, and subjects completed the instruments and items without difficulty. Based on this work, a multi-method, multi-site study in Jamaica and the USA will be conducted to understand the relationships between health-related quality of life, stigma, and self-management in adults with SCD.

Duke Scholars

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Published In

Pilot and feasibility studies

DOI

EISSN

2055-5784

ISSN

2055-5784

Publication Date

January 2019

Volume

5

Start / End Page

85

Related Subject Headings

  • 4203 Health services and systems
 

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Chicago
ICMJE
MLA
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Journal cover image

Published In

Pilot and feasibility studies

DOI

EISSN

2055-5784

ISSN

2055-5784

Publication Date

January 2019

Volume

5

Start / End Page

85

Related Subject Headings

  • 4203 Health services and systems