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Is treatment adherence associated with better quality of life in children with sickle cell disease?
Lamia P Barakat1, Meredith Lutz, Kim Smith-Whitley
1Department of Psychology, Drexel University, Philadelphia, PA 19104, USA. Lamia.P.Barakat@drexel.edu
Insights
Better treatment adherence in children with sickle cell disease was linked to lower quality of life (QOL). Further research is needed to understand this unexpected association and guide care.
Area of Science:
- Pediatric Hematology
- Quality of Life Research
- Chronic Disease Management
Background:
- Sickle cell disease (SCD) significantly impacts children's lives.
- Understanding factors influencing quality of life (QOL) in pediatric SCD is crucial.
- Treatment adherence is a key component of managing chronic conditions.
Purpose of the Study:
- To investigate the relationship between treatment adherence and QOL in children with SCD.
- To explore the potential role of SCD complications in this association.
- To identify factors influencing adherence and QOL in pediatric SCD.
Main Methods:
- Cross-sectional study involving primary caregivers of 43 children (≥5 years) and 21 children (≥8 years) with SCD.
- Quality of life (QOL) assessed using a standardized measure during acute care admissions.
- Treatment adherence evaluated via medical staff ratings, caregiver reports, and comparison to standard care recommendations.
Main Results:
- A significant negative correlation was found between treatment adherence and overall QOL.
- Sickle cell disease complications were associated with adherence but did not mediate the negative QOL-adherence link.
- Higher adherence may potentially detract from QOL-contributing activities for some children.
Conclusions:
- Treatment adherence in pediatric sickle cell disease is paradoxically associated with poorer quality of life.
- Sickle cell disease complications do not fully explain this negative relationship.
- Further research into psychosocial factors and SCD complications is recommended to clarify adherence-QOL dynamics.
Abstract:
The association of treatment adherence with quality of life (QOL) and the role of sickle cell disease complications were explored in children with sickle cell disease. Primary caregivers of 43 children, ages 5 years and older, and 21 children, ages 8 years and older, completed a standardized measure of QOL during an admission for pain or fever to the hematology acute care unit. Adherence was measured through medical staff ratings, caregiver-report of sickle cell disease-related care activities, and matching of medical staff standard recommendations for treatment of pain and fever with sickle cell disease-related care activities. Sickle cell disease complications were assessed via medical file review. Pearson correlation coefficients indicated that better adherence was associated with poorer overall QOL. In follow-up analyses, although sickle cell disease complications were associated with adherence, it did not explain the negative correlation of adherence with QOL. Higher treatment adherence may interfere with activities that contribute to QOL for some children. Further research to investigate the role of sickle cell disease complications, as well as psychosocial factors, in determining both treatment adherence and QOL is suggested.
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