Abstract
Aim: The Adult Sickle Cell Quality of life Measure (ASCQ-Me) is a relatively new tool with increasing frequency of use, but no published reports of its long-term stability. The aim of this study was to examine reliability of ASCQ-Me in a sample of adults with sickle cell disease (SCD). Evidence of reliability of this new tool is important for credible use in longitudinal studies of SCD, especially those with interventions intended to improve quality of life (QOL) for patients with SCD.
Methods: In a comparative study, 141 adults with SCD (mean age 37±11 years [ranged from 19 to 74 years]; 100% African ancestry; 60% female; 74% SS, 20% SC and 6% Other) provided demographic information and completed the ASCQ-Me questionnaire twice, separated by 1 year so that data were collected in the same season. The 30-item ASCQ-Me has 6 subscales focused on: pain episodes (frequency and severity), pain impact, emotional impact, sleep impact, social functioning impact, and stiffness impact. Its scores range from (0 low QOL) to 100 (high QOL) and are normed at a mean of 50 and SD of 10. Because the scores are reversed for pain episodes (frequency, severity), higher scores indicate more suffering. Descriptive and bivariate statistical analysis were conducted using the R statistical software package.
Results: Table 1 presents the complete findings for the ASCQ-Me subscale domains, mean (SD) scores at baseline and one-year, intra-class coefficients (ICC), and Cronbach's alphas at baseline and one-year. Generally in this sample, the subscale scores across time did not differ by more than 2.4 points (Table 1). The internal consistency alphas at baseline ranged from 0.64 to 0.93 and at one-year ranged from 0.62 to 0.93. The long-term stability (ICC) ranged from 0.43 to 0.64.
Conclusions: Over a one-year time span, the stability of the ASCQ-Me subscale scores was fair to good, with pain severity being less stable as would be expected for a condition known for recurrent pain episodes as well as chronic pain. Mean scores in this sample are similar to published scores associated with moderate to high severity SCD. Several domains showed ICC of 0.53 and higher, suggesting adequate stability for use of ASCQ-Me as a treatment outcome measure. While worsening disease has been associated with an increased number of pain episodes, in this sample, over the one-year period, the quality of life remained relatively stable. ASCQ-Me may be used to help describe chronic pain phenotypes in patients with SCD and as a longitudinal measure of treatment outcomes.
No relevant conflicts of interest to declare.
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