Development and validation of SIMS

An instrument for measuring quality of life of adults with sickle cell disease

Patricia Adams-Graves, Kimberly Lamar, Cage Johnson, Pat Corley

Research output: Contribution to journalArticle

9 Citations (Scopus)

Abstract

In recent years, there has been a growing interest in the assessment of quality of life (QOL) issues, particularly in chronic debilitating conditions. Several instruments have been developed, tested, and validated in the general population and in other chronic diseases; however, few studies have examined QOL issues in adults with sickle cell disease (SCD). We developed Sickle Cell Impact Measurement Scale (SIMS), an instrument for measuring the QOL of adults with SCD. The 142-item multi-dimensional SIMS questionnaire was developed using 4 validated instruments and additional questions based upon recommendations of patient focus groups. The SIMS was self-administered to 106 SCD and 45 rheumatoid arthritis (RA) patients over 4 sites. SIMS was evaluated on measures of both internal consistency and construct validity. Item reduction was performed based on results of factor analysis. The SIMS achieved good internal consistency, with a Cronbach's alpha coefficient reported of 0.86, and distinguished between patients with SCD and RA. Overall, QOL did not differ significantly among SCD and RA patients. However, SCD patients scored higher in both physical and social domains, which was expected and reflected the differences in the pathophysiology of each disease. The SIMS is a reliable, valid, and responsive questionnaire, which functions well as a discriminative instrument for the measure of health-related QOL (HRQOL) of adults with SCD. The SIMS is currently being administered to adults with SCD across several centers for further validation to become a disease-specific, global QOL instrument.

Original languageEnglish (US)
Pages (from-to)558-562
Number of pages5
JournalAmerican Journal of Hematology
Volume83
Issue number7
DOIs
StatePublished - Jul 1 2008

Fingerprint

Sickle Cell Anemia
Quality of Life
Rheumatoid Arthritis
Focus Groups
Statistical Factor Analysis
Chronic Disease
Population

All Science Journal Classification (ASJC) codes

  • Hematology

Cite this

Development and validation of SIMS : An instrument for measuring quality of life of adults with sickle cell disease. / Adams-Graves, Patricia; Lamar, Kimberly; Johnson, Cage; Corley, Pat.

In: American Journal of Hematology, Vol. 83, No. 7, 01.07.2008, p. 558-562.

Research output: Contribution to journalArticle

@article{7caa41e89d3f409ebc4cc4de94a68d90,
title = "Development and validation of SIMS: An instrument for measuring quality of life of adults with sickle cell disease",
abstract = "In recent years, there has been a growing interest in the assessment of quality of life (QOL) issues, particularly in chronic debilitating conditions. Several instruments have been developed, tested, and validated in the general population and in other chronic diseases; however, few studies have examined QOL issues in adults with sickle cell disease (SCD). We developed Sickle Cell Impact Measurement Scale (SIMS), an instrument for measuring the QOL of adults with SCD. The 142-item multi-dimensional SIMS questionnaire was developed using 4 validated instruments and additional questions based upon recommendations of patient focus groups. The SIMS was self-administered to 106 SCD and 45 rheumatoid arthritis (RA) patients over 4 sites. SIMS was evaluated on measures of both internal consistency and construct validity. Item reduction was performed based on results of factor analysis. The SIMS achieved good internal consistency, with a Cronbach's alpha coefficient reported of 0.86, and distinguished between patients with SCD and RA. Overall, QOL did not differ significantly among SCD and RA patients. However, SCD patients scored higher in both physical and social domains, which was expected and reflected the differences in the pathophysiology of each disease. The SIMS is a reliable, valid, and responsive questionnaire, which functions well as a discriminative instrument for the measure of health-related QOL (HRQOL) of adults with SCD. The SIMS is currently being administered to adults with SCD across several centers for further validation to become a disease-specific, global QOL instrument.",
author = "Patricia Adams-Graves and Kimberly Lamar and Cage Johnson and Pat Corley",
year = "2008",
month = "7",
day = "1",
doi = "10.1002/ajh.21146",
language = "English (US)",
volume = "83",
pages = "558--562",
journal = "American Journal of Hematology",
issn = "0361-8609",
publisher = "Wiley-Liss Inc.",
number = "7",

}

TY - JOUR

T1 - Development and validation of SIMS

T2 - An instrument for measuring quality of life of adults with sickle cell disease

AU - Adams-Graves, Patricia

AU - Lamar, Kimberly

AU - Johnson, Cage

AU - Corley, Pat

PY - 2008/7/1

Y1 - 2008/7/1

N2 - In recent years, there has been a growing interest in the assessment of quality of life (QOL) issues, particularly in chronic debilitating conditions. Several instruments have been developed, tested, and validated in the general population and in other chronic diseases; however, few studies have examined QOL issues in adults with sickle cell disease (SCD). We developed Sickle Cell Impact Measurement Scale (SIMS), an instrument for measuring the QOL of adults with SCD. The 142-item multi-dimensional SIMS questionnaire was developed using 4 validated instruments and additional questions based upon recommendations of patient focus groups. The SIMS was self-administered to 106 SCD and 45 rheumatoid arthritis (RA) patients over 4 sites. SIMS was evaluated on measures of both internal consistency and construct validity. Item reduction was performed based on results of factor analysis. The SIMS achieved good internal consistency, with a Cronbach's alpha coefficient reported of 0.86, and distinguished between patients with SCD and RA. Overall, QOL did not differ significantly among SCD and RA patients. However, SCD patients scored higher in both physical and social domains, which was expected and reflected the differences in the pathophysiology of each disease. The SIMS is a reliable, valid, and responsive questionnaire, which functions well as a discriminative instrument for the measure of health-related QOL (HRQOL) of adults with SCD. The SIMS is currently being administered to adults with SCD across several centers for further validation to become a disease-specific, global QOL instrument.

AB - In recent years, there has been a growing interest in the assessment of quality of life (QOL) issues, particularly in chronic debilitating conditions. Several instruments have been developed, tested, and validated in the general population and in other chronic diseases; however, few studies have examined QOL issues in adults with sickle cell disease (SCD). We developed Sickle Cell Impact Measurement Scale (SIMS), an instrument for measuring the QOL of adults with SCD. The 142-item multi-dimensional SIMS questionnaire was developed using 4 validated instruments and additional questions based upon recommendations of patient focus groups. The SIMS was self-administered to 106 SCD and 45 rheumatoid arthritis (RA) patients over 4 sites. SIMS was evaluated on measures of both internal consistency and construct validity. Item reduction was performed based on results of factor analysis. The SIMS achieved good internal consistency, with a Cronbach's alpha coefficient reported of 0.86, and distinguished between patients with SCD and RA. Overall, QOL did not differ significantly among SCD and RA patients. However, SCD patients scored higher in both physical and social domains, which was expected and reflected the differences in the pathophysiology of each disease. The SIMS is a reliable, valid, and responsive questionnaire, which functions well as a discriminative instrument for the measure of health-related QOL (HRQOL) of adults with SCD. The SIMS is currently being administered to adults with SCD across several centers for further validation to become a disease-specific, global QOL instrument.

UR - http://www.scopus.com/inward/record.url?scp=45749140941&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=45749140941&partnerID=8YFLogxK

U2 - 10.1002/ajh.21146

DO - 10.1002/ajh.21146

M3 - Article

VL - 83

SP - 558

EP - 562

JO - American Journal of Hematology

JF - American Journal of Hematology

SN - 0361-8609

IS - 7

ER -