source: American Society of Pediatric Hematology/Oncology

year: 2017

authors: Steven J. Hardy, Jasmine Holt, Sarah Bills, Shane Wise, Kristina Hardy

Background:
Children with Sickle Cell Disease (SCD) often experience pain, fatigue, and a host of other stressors that could affect their quality of life. A subset of the population will also manage a second chronic illness; the most prevalent comorbid chronic disease is asthma (15-28% of youth with SCD).

Objectives:
We compared children with SCD only to children with comorbid SCD and asthma to explore differences in quality of life and academic disruption.

Results:
Nineteen children (30%) had SCD and asthma. When comparing caregiver-rated PedsQL-SCD Total Scores, the SCD and asthma group demonstrated lower quality of life (M=55.04, SD=21.34) than the SCD-only group (M=71.00, SD=20.54), t(46)=2.47, p=0.017. The SCD and asthma group had more problems with pain-related functional impairment, pain management, anxiety, and communication with medical providers (p’s=0.010-0.030). The SCD and asthma group also missed significantly more days of school (M=20.42, SD=26.89) than the SCD-only group (M=10.52, SD=10.76), t(57)=-2.03, p= 0.047. Higher IQ was associated with better child-rated quality of life for children with SCD and asthma (r=0.467, p=0.019) but not for those with SCD only. Better parent-rated child quality of life was also correlated with having more material resources in the SCD and asthma group (r=0.463, p=0.035) but not in the SCD-only group.

Conclusion:
Caregivers of children with SCD and asthma feel their children experience poorer quality of life compared to children with SCD only. Adding to evidence of increased functional impairment, children with SCD and asthma also missed more days of school. Child IQ and family resources were associated with quality of life for children with SCD and asthma but not for children with SCD only, suggesting that cognitive and family resources may have a heightened role in moderating disease outcomes on quality of life among children with multiple chronic conditions. Results highlight the increased complexity of managing multiple chronic conditions, but could also reflect cumulative physiological factors influencing disease severity. Youth with SCD and asthma may benefit from disease self-management interventions.

Share

Discuss in Social Wall

Twitter

Share to SCDteam

+myBinder