Biopsychosocial Predictors of Quality of Life in Paediatric Patients With Sickle Cell Disease

Background/objective: Youth diagnosed with sickle cell disease (SCD) are at increased risk of poor health-related quality of life (HRQOL) due to the complexities associated with this disease. The literature notes that predictors such as pain and poor mental health are associated with increased healthcare access; however, the connection between healthcare use and their overall well-being has been understudied. This study investigates whether healthcare utilization predicts the HRQOL in youth with SCD.Design/methods: Patients completed the Pediatric Quality of Life (PedsQL) 3.0 SCD module, whereas the researcher conducted a retrospective chart review to gather patient characteristics such as emergency room (ER) and hospitalization occurrences over the past 12 months. Results:The study consisted of 150 pediatric patients with SCD, ages 8-17 years old, and their parents. Patients with ≥ 4 ER visits and hospitalizations reported worse HRQOL scores than their respective counterparts. Additionally, a higher frequency of ER visits (P = 0.05) and hospitalizations (P = 0.005) predicted lower HRQOL scores.Age (P = 0.04) also emerged as a significant predictor for both regression models, as increased healthcare access among older patients with SCD was associated with poorer HRQOL. Conclusion:This study found that as youth with SCD require ER treatment and/or hospital admission, they are at increased risk for lower HRQOL, specifically as they get older. Findings suggest that attention should be paid to patients who require more frequent healthcare intervention. Improvement in outpatient care of pediatric patients with SCD may help to mitigate ER and inpatient use.

Section: Discussionmentioning

confidence: 99%

Healthcare utilization and the quality of life of children and adolescents with sickle cell disease

Moody

2022

“…Regarding the connection between poverty and HRQOL, our findings were comparable to previous research. 20,21 Even markers for poverty, such as parenting education level 22 and low income, 23 have been associated with decreased HRQOL in pediatric SCD. Factors associated with the connection between poverty and child HRQOL outcomes may in part be rooted in the long-term consequences of living in poverty.…”

Section: Discussionmentioning

confidence: 99%

Poverty and the wellbeing of children with sickle cell disease: The mediating role of parenting stress

Moody,

Cain,

Worthy

2023

BackgroundLiving in poverty in the midst of caring for a child with sickle cell disease (SCD) presents with challenges that may be overwhelming for caregivers. Prior research has shown a relationship between poverty and poor outcomes in children; however, no study has investigated the mediating role of parenting stress on health‐related quality of life (HRQOL) for such children.ProcedureA total of 150 patients, ages 8–17 years and their parents, were enrolled and completed measures of parenting stress (caregivers) and HRQOL (patients). Caregivers also completed a demographic information questionnaire, which was used to determine poverty status. The Sobel test was used to analyze the association between poverty and HRQOL by way of parenting stress.ResultsThe series of linear regression results show poverty was a significant predictor for decreased HRQOL (B = −7.01, p = .05) among pediatric patients with SCD. Moreover, the regression coefficient measuring the indirect effect of the model measuring the mediating role of parenting stress was statistically significant (B = −1.05, p = .05).ConclusionThe current study found an association between poverty status and HRQOL scores by way of parenting stress. Findings highlight the need for appropriate resource allocation to caregivers in addition to pediatric patients living with SCD.

“…61 In several studies, SCD severity and complications were associated with worse HRQoL. 44,60,65 In the association between hospitalization for VOC and HRQoL, the severity of hospitalization has not been taken into account before. According to our subanalysis, severity of hospitalization could have affected total HRQoL, but only until 3 months after hospitalization.…”

Section: Discussionmentioning

confidence: 99%

Impact of hospitalization for vaso‐occlusive crisis on health‐related quality of life in children with sickle cell disease

Vuong,

Moussa,

van Muilekom

et al. 2023

BackgroundSickle cell disease (SCD) is characterized by vaso‐occlusive crises (VOCs) that impair the health‐related quality of life (HRQoL). The aim of this study is to evaluate the impact of hospitalization for VOCs on HRQoL in children with SCD over time.MethodsIn this longitudinal cohort study, children aged 8–18 years diagnosed with SCD at the Amsterdam UMC were included between 2012 and 2021. HRQoL was annually measured as part of standard care using the Pediatric Quality of Life Inventory. The impact of hospitalization for VOC on HRQoL was evaluated using linear mixed models 3, 6, 9, and 12 months after hospitalization. The effect of frequency of hospitalization for VOC on HRQoL was evaluated over the last 12 months.ResultsIn total, 94 children with SCD were included with a median age of 11.8 years (interquartile range [IQR]: 9–14). Thirty‐seven patients (39%) had been hospitalized for a VOC. Hospitalization for VOC led to a decrease of 3.2–4.8 points in total HRQoL compared to patients without hospitalization, most pronounced 3 months after hospitalization. Recurrent admission for VOC in the last 12 months was associated with a decrease of 2.3 points in total HRQoL (p = .04). The most affected subscale was physical functioning.ConclusionThe adverse effects of hospitalization for VOC in children with SCD persist up to 12 months after hospitalization. After hospitalization for VOC, extra attention and support for its negative impact on HRQoL are recommended. This study also underlines the importance of systematically measuring HRQoL, allowing clinicians to intervene accordingly.