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Poverty status was found to be a significant factor in health-related quality of life (HRQOL) scores in children with sickle cell disease (SCD) due to parenting stress, according to a study published in Pediatric Blood & Cancer.
The most common genetic disorder in the United States is SCD, which affects patients of African descent most often. Symptoms of SCD could affect both children and their parents due to their unpredictability and intensity and could decrease a child’s HRQOL. This study aimed to assess the relationship between poverty and HRQOL in children with SCD using parental stress as a mediating effect.
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Patient/parent duos were recruited from a children’s hospital in Virginia from July 2018 to February 2019. Patients needed to be able to speak and read English, be aged 8 to 17 years, have no developmental disabilities, and have a current diagnosis of SCD. Parents needed to be older than 18 years, be able to speak and read English, and identify themselves as the parent or guardian of the patient.
All parents were asked to provide household income and family size to gather information on the patient’s poverty level. The Parental Stress Scale was used to evaluate stress level of all parents, which ranged from 18 to 90 with higher scores indicating more stress. The Pediatric Quality of Life Scale 3.0 (PedsQL) was used to evaluate HRQOL, with higher scores on a scale of 100 indicating lower problems. All patients took the PedsQL test and their parent filled out demographic information.
There were 150 children included in this study, of which 52% were female and 29% lived below the federal poverty line. After the children filled out the PedsQL module, Communication II (45.22 [29.30]) and Pain Impact (49.48 [26.15]) had the lowest mean (SD) scores. The highest mean score was reported in Worry II (81.16 [23.15]), which indicated the least struggle in this area.
The mean score for the Parental Stress Scale was 39.61 (9.95). A linear regression test was used to assess whether poverty predicted HRQOL. The test found that children who had SCD who lived below the federal poverty line may have lower HRQOL (B, –7.01). The role of parental stress on poverty and HRQOL was found to be significant (B, –1.05) as a regression coefficient.
There were some limitations to this study. The HRQOL scores and poverty status were only collected once, which could not account for any changes thereafter. The association and causality between the 3 factors of poverty, HRQOL, and parental stress remain unclear due to the cross-sectional nature of the study. Comorbidities were not collected in the sample. A possibility of bias could be due to it being a convenience sample.
The researchers concluded that poverty in children with SCD was associated with HRQOL. Parental stress was also found to play a mediating role in lower HRQOL in these children. Resource deprivation in families with children who have SCD should be assessed by public health officials and clinicians to improve HRQOL in this subset of children.
Reference
Moody KL, Cain G, Worthy J. Poverty and the wellbeing of children with sickle cell disease: the mediating role of parenting stress. Pediatr Blood Cancer. Published online November 15, 2023. doi:10.1002/pbc.30770
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