An online survey of ways to best promote a healthier lifestyle among people with Prader-Willi syndrome (PWS) is being conducted by the University of Cambridge with support from the International Prader-Willi Syndrome Organisation (IPWSO).
Recommendations are expected by early 2021, and will be made available through the IPWSO’s website.
The survey, “The use of restrictive practices in the care of people with Prader-Willi syndrome,” focuses on the balance between allowing people with PWS, a disease marked by an insatiable appetite, to make their own choices and having to curtail freedoms to make sure they are healthy, particularly with regard to diet.
Researchers want to hear from people with PWS, their caregivers and family members, as well as people who work in health and social care, and those studying and supporting the rights of people with disabilities.
Survey questions cover views of different ways to support PWS patients avoid overeating and maintain a proper diet. They also address the acceptability of restricting access to food in different scenarios, and placing children and adults with PWS in special schools or dedicated homes, even if they do not agree.
Also asked is whether it is acceptable not to let adults with PWS go out unless with supervision to prevent excessive eating or unhealthy food choices. The team also wants to know if respondents agree with hiding food from adults and children with this disorder. Other questions ask participants to rate possible public health measures to encourage adopting a healthy diet, and whether patients should be hospitalized if their weight puts their health at serious risk.
For some questions, participants can choose the statement they most agree with, while for others their views need be given in a typed answer.
Completing the survey should take about 30 minutes, but participants may choose not to answer all questions. All data will be stored anonymously, and participants will not be asked for personal information that might identify them.
Once ready, survey respondents can ask to see a copy of the final guidelines. Researchers plan to present their findings at conferences and in publications in scientific journals. IPWSO plans to hold discussions when results are out.