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Health-Related Social Needs in Children With Sickle Cell Disease Are Associated With Worse Health-Related Quality of
Sarah J Marks1, Molly Sonenklar2,3, Cerelia Donald4
1Department of Health Policy and Medical Scientist Training Program, Virginia Commonwealth University, Richmond, Virginia, USA.
Insights
Health-related social needs (HRSNs) negatively impact quality of life for children with sickle cell disease (SCD). Addressing these needs in clinics is crucial for improving patient outcomes.
Area of Science:
- Pediatric Hematology
- Social Determinants of Health
- Patient-Reported Outcomes
Background:
- Children with sickle cell disease (SCD) experience significant medical complications affecting their quality of life.
- Health-related social needs (HRSNs), including food and housing insecurity, are prevalent in individuals with SCD.
- The link between HRSNs and quality of life in pediatric SCD patients remains understudied.
Purpose of the Study:
- To investigate the association between health-related social needs (HRSNs) and patient-reported quality-of-life outcomes in children with sickle cell disease (SCD).
- To determine if HRSNs impact various domains of quality of life as reported by both pediatric patients with SCD and their parents/guardians.
Main Methods:
- A cross-sectional study involving 81 parents/guardians and 64 children (ages 5-18) with SCD.
- Data collection included demographic questionnaires, an HRSN screener, and the PROMIS Pediatric and Parent-Proxy 25 Profiles.
- Statistical analysis involved descriptive statistics and nested linear regression models, adjusting for clinical and demographic factors.
Main Results:
- Children with at least one reported HRSN demonstrated significantly worse quality of life across multiple domains.
- Parent/guardian reports indicated more pronounced differences in quality of life compared to child self-reports.
- These associations remained significant after controlling for the child's age, gender, SCD genotype, and recent acute care utilization.
Conclusions:
- Health-related social needs are significantly associated with poorer quality of life in pediatric patients with sickle cell disease.
- Findings highlight the importance of routine screening for HRSNs in clinical settings.
- The study supports the implementation of systematic referral systems to connect families with community resources to address identified social needs.
Background:
Children with sickle cell disease (SCD) face multiple acute and chronic medical complications that may impact their quality of life as reported by patients themselves. Health-related social needs (HRSNs), such as food and housing insecurity, are common in people with SCD, but the association between HRSNs and patient-reported quality-of-life outcomes in pediatric SCD patients has not been examined.
Methods:
In this cross-sectional study, parents/guardians of children 5-18 completed a demographic questionnaire, an HRSN screener, and the PROMIS Pediatric Parent-Proxy 25 Profile v2.0, while children 8 and older completed the PROMIS Pediatric-25 Profile v2.0 during routine SCD clinical appointments. To examine the association of HRSN and the six PROMIS domains reported by both parents/guardians and children, we looked at unadjusted descriptive statistics as well as fit-nested linear regression models that adjusted for clinical and demographic characteristics.
Results:
Respondents included 81 parents/guardians and 64 children. Generally, across multiple domains, children with at least one parentally reported HRSN evidenced worse clinically significant quality of life, with guardians reporting greater differences than children. These differences persisted even when accounting for the child's age, gender, SCD genotype, and acute care utilization in the past 12 months.
Conclusions:
HRSNs are associated with worse patient-reported quality-of-life outcomes in a pediatric SCD population, even after accounting for patient and demographic factors. These findings underscore the need for routine HRSN screening in clinics and support the development of systematic referral pathways to community resources to address identified needs.
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