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.