Health, Nutrition and Living Arrangements (completed)
We want to describe nutritional-related health challenges and lifestyle for persons with Prader-Willis syndrome, Williams’ syndrome and Down’s syndrome 16 to 40 years of age.
We will compare persons living in community-based care homes for persons with intellectual disabilities, with those living with relatives.
About the project
The study has a cross-sectional design and we want to investigate nutritional-related health, physical activity and nutritional intakes in persons affected by Prader-Willis syndrome, Williams’ syndrome and Down's syndrome. A total of 96 participants are included in the study.
Primary outcomes will be prevalence of metabolic syndrome, diabetes mellitus, anemia and obesity. We will use standard clinically accepted definitions for these conditions.
The following lifestyle factors will be described:
- Food intakes, measured by biomarkers in blood and by questionnaire on consumption frequency of fruit, fruit juices, vegetables, fish, soft-drinks and pre-processed foods.
- Daily physical activity will be measured by use of accelerometer and physical capacity by six-minute-walk-test. Information on sedentary behaviors, sleeping patterns, smoking and alcohol consumption will be collected by questionnaire.
We will describe the following conditions related to living arrangements:
- The participants living arrangement, hours of community-based support per week, hours of support for leisure activities, participation in decisions and preparations of their own food and if the participant has restrictions in their access to food. This will be collected by web-based questionnaire.
The study is approved by The Regional Committees for Medical and Health Research Ethics (REC). Data will be collected at Frambu – Centre for Rare Disorders, from week 41 in 2012 to week 4 in 2013.
For more information please go to the webpage of the study (Norwegian website).
- To describe the prevalence of metabolic syndrome, diabetes mellitus, anemia and obesity for persons with Prader-Willis syndrome, Williams’ syndrome and Down’s syndrome in Norway for 16 to 40 years of age in Norway, and to investigate similarities and differences when comparing persons living in community-based care homes for persons with intellectual disabilities with those living with relatives.
- To describe physical capacity and physical activity patterns.
- To describe intakes of selected foods and participation in decisions related to their own food consumption.
Adolescents and adults with physical and intellectual disabilities have a higher prevalence of obesity than their non-disabled peers. Health issues for people with developmental and intellectual disabilities have traditionally focused on diseases and disability directly related to the diagnosis, whereas prevention of secondary conditions has received less attention.
Increased knowledge on nutritional-related health challenges in relation to living arrangements and primary diagnosis are important fundaments for health promotion and to develop preventative strategies for secondary condition in these groups.
The project is funded by ExtraStiftelsen through The Norwegian Association for Persons with Developmental Disabilities (NFU). In addition Frambu contributes with financial resources and facilitation of the study.
There is in the study a collaboration between Norsk forbund for utviklingshemmede (NFU), University of Oslo, Department of Nutrition and Frambu -Centre for Rare Disorders.
NFU and Frambu have a signed agreement where Frambu will be the institution accountable and formal administrator for this project. The project will report annually to NFU regarding economics and progress. There is also a signed agreement between Frambu and University of Oslo, Department of nutrition.
The study is organized as a doctorate at the Faculty of Medicine, University of Oslo for Cand. Scient. in Clinical Nutrition Marianne Nordstrøm. She is permanently employed at Frambu. Supervisor and responsible for the research will be Professor Svein Olav Kolset, employed at the Department of Nutrition, at the Faculty of Medicine, University of Oslo. Co-supervisor will be Dr. Med. Benedicte Paus, employed at Department of Medical Genetics, Oslo University Hospital.
The study is carried out in collaboration with the national patient organizations:
- Norwegian Network for Down's syndrome
- The National Association for Prader-Willis syndrome
- Norwegian Association for Williams syndrome
Start - finish
October 3rd 2011 - September 31st 2014