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[Quality of life in children with sickle cell disease in Amsterdam area]
A P Kater1, H Heijboer, M Peters
1Academisch Medisch Centrum (AMC), Amsterdam.
Insights
Children with sickle cell disease experience significantly lower quality of life, particularly in physical functioning and daily independence. Their psychological well-being may also be affected, but cognitive and social aspects remain comparable to healthy peers.
Area of Science:
- Pediatric Hematology
- Quality of Life Research
- Child Psychology
Background:
- Sickle cell disease (SCD) is a genetic blood disorder impacting children's health.
- Understanding the quality of life (QoL) in children with SCD is crucial for comprehensive care.
- Previous research has not fully elucidated the specific QoL domains affected in pediatric SCD patients compared to healthy controls.
Purpose of the Study:
- To compare the quality of life between children diagnosed with sickle cell disease and a healthy cohort of immigrant children.
- To identify specific areas of QoL that are significantly different between these two groups.
Main Methods:
- A descriptive, comparative study design was employed.
- Quality of life was assessed using the TNO-AZL Children's Quality of Life Questionnaire (TACQOL) parent and child forms.
- Data were collected from 45 children with SCD (aged 5-15) and compared to a healthy immigrant reference group.
Main Results:
- Children with SCD and their parents reported significantly lower scores in general physical functioning, motor skills, and independent daily functioning.
- The occurrence of negative emotions was significantly higher in children with SCD.
- No significant differences were found in cognitive functioning, school performance, social functioning, or the occurrence of positive emotions.
Conclusions:
- Sickle cell disease negatively impacts physical well-being and daily independence in children.
- Psychological well-being may also be compromised, indicated by increased negative emotions.
- Cognitive and social aspects of quality of life appear unaffected by sickle cell disease in this pediatric cohort.
Objective:
To determine the differences in quality of life between children with sickle cell disease and healthy immigrant children.
Design:
Descriptive, comparative.
Method:
The quality of life of children with sickle cell disease between 5 and 15 years old being treated in the Emma Children's Hospital AMC in Amsterdam, the Netherlands, was assessed by using a questionnaire for parents (TNO-AZL Children's Quality of Life Questionnaire (TACQOL) parent form) if the child was between 5 and 11 years old and a questionnaire for children (TACQOL child form) if the child was between 8 and 15 years old. The study period was April-October 1998. The questionnaires were completed by 45 (parents of) patients. The results were compared with a healthy reference group of immigrant children. Statistical analysis was performed using the Student t-Test.
Results:
Children with sickle cell disease as well as their parents scored significantly lower on the items general physical, motor and independent daily functioning and on occurrence of negative emotions. No significance was observed for the items cognitive functioning and school performance nor for social functioning or occurrence of positive emotions.
Conclusion:
In children, sickle cell disease leads to compromised physical and possibly also psychological wellbeing, as well as the experience of decreased independence in daily functioning, but not to compromised cognitive or social aspects of the quality of life.
