DISCUSSION
This study examined the HRQOL of children and adolescents diagnosed with SCD using a disease-specific measurement tool and to investigate the relationship between healthcare utilization and HRQOL in this population. Comparing the results of this study with previous research (Beverung et al., 2015), it was discovered that youth in this sample experienced impairment in their HRQOL. This information mirrors the results found in the literature. Wrotniak et al., 2014, for example, studied compared HRQOL scores of children with SCD with normative scores of non-White children and found that the scores of children with SCD were lower. Similar results were even noted in studies where the HRQOL of children with SCD were compared with children diagnosed with other chronic illness (Bhagat et al., 2014). The complex nature of SCD makes it difficult to pinpoint a sole culprit for impairment in HRQOL; rather, there have been many biopsychosocial factors that have been associated with their wellbeing such as disease severity, depression, anxiety, and parenting stress (Barakat et al., 2008; Goldstein-Leever et al., 2020).
Participants in this study noted communication to be the most challenging. This was not unusual and, in fact, other studies have reported how youth are cautious about disclosing their diagnosis of SCD to others. Many children with SCD do not want to continuously explain their illness to others and some even feel emotional, as it reminds them of the hardship they face managing their disease (Forrester et al., 2015).
Concerning the relationship between healthcare utilization and HRQOL, this study found that the frequency in healthcare utilization predicted HRQOL scores, suggesting that the more patients accessed the ER or were admitted to the hospital, they may expect to have lower HRQOL. This finding is consistent with previous, but scant, literature that examined healthcare utilization and HRQOL among youth with SCD (Ahmed et al., 2016). Interestingly, research on this topic within other chronic illness groups such as cancer (Choo et al., 2019) and arthritis (Moorthy et al., 2010) have comparable results. In SCD specifically, prior research has shown pain to be the main reason for hospitalizations and ER visits (Cacciotti et al., 2017; Kidwell et al., 2021), and has been linked to decreased HRQOL (Badawy et al.,2018). Moreover, research has shown that the frequency and intensity of pain increases in severity as children grow older (Zempsky et al., 2016). Perhaps this rise in pain severity as children age is linked to the connection between age and healthcare utilization. This association has been found in previous studies (Fosdal & Wojner-Alexandrov, 2007; Panepinto et al., 2005) and was a significant predictor for HRQOL in the current study.