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Published on: November 5, 2019
Quality of life in children with sickle cell hemoglobinopathy
Archana B Patel1, Habib G Pathan
1Indira Gandhi Medical College, Nagpur, India. archana@giasbm01.vsnl.net.in
Insights
Quality of life (QOL) is significantly impacted in children with sickle cell anemia (SCA) and sickle cell trait (SCT). Interventions should address physical, psychosocial, and cognitive domains affected by these conditions.
Area of Science:
- Pediatric Hematology
- Quality of Life Research
- Genetics
Background:
- Sickle cell disease (SCD) and sickle cell trait (SCT) are genetic blood disorders with significant health implications.
- Understanding the impact of SCD and SCT on children's daily lives is crucial for effective management.
- Previous research has highlighted various challenges faced by individuals with SCD, but comprehensive QOL assessments in pediatric populations require further investigation.
Purpose of the Study:
- To evaluate and compare the quality of life (QOL) domains in children with sickle cell anemia (SCA), sickle cell trait (SCT), and healthy controls.
- To identify specific areas of physical, psychosocial, and cognitive functioning most affected by SCA and SCT in children aged 8-14 years.
Main Methods:
- A cross-sectional study involving 52 children aged 8-14 years at a regional hemoglobinopathy center.
- Participants were categorized into three groups: 25 with SCA, 12 with SCT, and 15 as normal controls.
- Quality of life (QOL) was assessed using a multidimensional interview-based questionnaire.
Main Results:
- Children with SCA experienced significant impairments across all QOL domains, particularly in physical activities like playing and mobility.
- Psychosocial aspects, including sadness, lack of teacher support, and reduced participation in social/cultural activities, were also affected in SCA.
- Notably, children with SCT also exhibited affected QOL across all domains compared to controls, potentially due to disease stigma.
Conclusions:
- Quality of life (QOL) is demonstrably reduced in children with sickle cell disease (SCD) and, to a lesser extent, in those with sickle cell trait (SCT).
- Targeted interventions focusing on identified QOL deficits are recommended for children with SCD.
- Enhancing awareness about SCD and SCT manifestations can help mitigate the psychosocial burden on affected children, especially those with SCT.
Objective:
To identify specific domains and traits that are most affected in patients with sickle cell anemia and traits with respect to normal children.
Methods:
Children attending the regional hemoglobinopathy center at IGMC, Nagpur in age group of 8-14 years were assessed. Of 52 children studied, 25 had sickle cell anemia (SCA), 12 had sickle cell trait (SCT) and 15 wre normal control. The (quality of life (QOL) was assessed using multidimensional interview based questionnaire.
Results:
All domains, physical, psychosocial, cognitive and morbidity were affected. In SCA playing and mobility were most affected. There was feeling of sadness or disinterest and lack of support from teachers. The school attendance, vocational achievement perception, entertainment and participation in cultural activities were also affected. The intensity of weakness and pain was greater in SCA children who left that they were affected by a major illness. The unusual finding was that the SCT children also showed affection of all domains as compared to normal children, which was perhaps due to the stigma of the disease.
Conclusion:
QOL is affected in children with sickle cell disease (SCD) and to a lesser extent in SCT. Interventions to improve QOL should target the affected items. Improving awareness of the disease and its manifestation will help to alleviate the psychosocial affliction of children with SCT.
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