Methods: A cross-sectional survey research design was used for this quantitative study. to gather data on 150 patient/parent dyads recruited for this study. One hundred-fifty patients between the ages of 8-17 years old and their caregivers were enrolled from an outpatient comprehensive sickle cell program at a local children’s hospital. Patients completed the Pediatric Quality of Life scale (PedsQL) 3.0 SCD module, while parents completed the Parental Stress Scale and demographic information questionnaire. An analysis of variance (ANOVA) was used to examine the association between disease severity indicators (e.g., pain frequency and symptom frequency) and HRQOL scores. This study also used multiple regression analysis to determine whether pain frequency and symptom frequency predicted HRQOL scores after controlling for sociodemographic variables.
Results: For hypothesis #1, the ANOVA for pain frequency revealed statistically significant results, F(2, 147) = 29.16, p < .001. Patients who experienced pain sometimes (M = 55.21, SD=16.59) or often or almost always (M = 45.32, SD=15.16) reported lower mean scores than the participants who did not experience pain over the past month (M = 74.45, SD=17.48). This is suggestive that, as participants reported more pain, they experienced lower HRQOL. Concerning symptom frequency, the ANOVA also reported statistically significant results, F(3,146) = 19.25, p < .001, which infers that as patients report more SCD symptoms, they also experienced lower HRQOL. For hypothesis #2, multiple regression analysis showed that pain frequency (p = <001) and symptom frequency (p = <001) predicted HRQOL scores in this sample after controlling for sociodemographic variables.
Implications: The results of this study, which saw an association between disease severity indicators and HRQOL scores in youth with SCD, provide implications for social work research. Despite increasingly favorable opinions regarding studies on SCD, research in this area is limited, which many attribute to stigma and racism associated with this disease. Increasing awareness surrounding the association between the pathology of SCD and the wellbeing of youth diagnosed with this disease may aid in improving implicit and explicit bias towards individuals diagnosed with SCD. Future studies should build upon the biopsychosocial model to examine longitudinal data in relation to this topic, as there are many elements to include when analyzing predicting factors associated with the HRQOL in youth with SCD. Assessing these variables may improve social attitudes related to this disease.