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Researchers at the School of Medicine at Trinity have studied the effects of the rare genetic disorder Prader-Willi Syndrome on the quality of life of the affected child and their family.
In the study of caregivers for children aged less than 1 year to 18 years of age, diet and pediatric researchers examined the effects of weight gain on health and well-being in patients with Prader-Willi syndrome. The study was conducted in collaboration with a research team from Children’s Health Ireland (CHI) at Tallaght University Hospital.
Prader-Willi syndrome is a complex genetic disorder that causes neurological, hormonal, behavioral, developmental, and cognitive problems. The condition was first described in 1956 and is caused by the lack of certain genes on chromosome 15. It can lead to overeating and life-threatening obesity, as well as compulsive behavior. More than 100 cases of this syndrome have been diagnosed in Ireland.
Edna Roche, Professor of Pediatrics at Trinity College, said: “We have found that Prader-Willi Syndrome has a significant impact on the quality of life of both the affected child and the family. We have also determined the quality of life of the patient and the entire family is negatively influenced by increased weight. “
The results showed that parents of teenage children with Prader-Willi syndrome reported increased care loads exacerbated by psychological difficulties and when the child’s routine or social activities were disrupted and restricted. The results also showed that parents perceived an increased weight and age of their child as significantly negative for their child’s psychosocial health and social functioning.
The study highlighted the need for adequate relief services for affected families.
Professor Roche stated: “Providing adequate relief care for children and adolescents with Prader-Willi Syndrome and increased support for their families will not only improve the health outcomes of the affected patients, but also improve their quality of life and that of their families. It is also important that Families can still be cared for in the home environment. “
The study was funded by the National Children’s Hospital Foundation and was a collaboration between researchers from the Department of Nutrition and Dietetics and the Department of Pediatric Growth, Diabetes and Endocrinology at CHI Tallaght and the Department of Pediatrics at the School of Medicine, Trinity College Dublin .
Commenting on the research, Marguerite Hughes of the Prader-Willi International Organization said: “This study is a welcome addition to the growing body of research highlighting the quality of life impact of Prader-Willi Syndrome and the need for assistance, not alone Children with the syndrome, but also their parents and entire families. The impact on families suggests that families may need social care services (such as rest time) at an early stage. The complex needs of children with Prader-Willi Das Syndrome also suggests that social services must be specifically tailored to the needs of people with the syndrome to be effective. ”
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Christina Meade et al. Prader-Willi Syndrome in Children: Quality of Life and Stress on Caregivers, Acta Paediatrica (2020). DOI: 10.1111 / apa.15738 Provided by Trinity College Dublin
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