Body weight, behaviours of concern, and social contact in adults and adolescents with Prader-Willi syndrome in full-time care services: Findings from pooled international archival data

Hughes, Brian M.; Holland, Anthony; Hödebeck-Stuntebeck, Norbert; Garrick, Lynn; Goldstone, Anthony P.; Lister, Mark; Moore, Craig; Hughes, Marguerite

doi:10.1186/s13023-024-03035-x

Orphanet Journal of Rare Diseases

Table 1 Questions relating to behaviours of concern (BOC)

From: Body weight, behaviours of concern, and social contact in adults and adolescents with Prader-Willi syndrome in full-time care services: Findings from pooled international archival data

Time point	Questions
At entry	Did the person experience problems with temper outbursts (e.g. ‘meltdowns’) when they entered your service? Did the person experience problems with skin-picking when they entered your service? Did the person have problems with egocentrism when they entered your service? (i.e., focusing on themselves and unable to see other people’s point of view) Did the person have problems with inflexibility when they entered your service? (e.g., difficulty with changes in routine) Did the person have problems with striving for dominance when they entered your service? (e.g., wanting to have their own way/insisting on being in control)
After one year	Did the person experience problems with temper outbursts (e.g. ‘meltdowns’) ONE YEAR AFTER they entered your service? Did the person experience problems with skin-picking ONE YEAR AFTER they entered your service? Did the person have problems with egocentrism ONE YEAR AFTER they entered your service? (i.e., focusing on themselves and unable to see other people’s point of view) Did the person have problems with inflexibility ONE YEAR AFTER they entered your service? (e.g., difficulty with changes in routine) Did the person have problems with striving for dominance ONE YEAR AFTER they entered your service? (e.g., wanting to have their own way/insisting on being in control)
Now	Does the person experience problems with temper outbursts (e.g. ‘meltdowns’) NOW? Does the person experience problems with skin-picking NOW? Does the person have problems with egocentrism NOW? (i.e., focusing on themselves and unable to see other people’s point of view) Does the person have problems with inflexibility NOW? (e.g., difficulty with changes in routine) Does the person have problems with striving for dominance NOW? (e.g., wanting to have their own way/insisting on being in control)

Note: Response options, as rated by staff, for all questions were as follows: Severe problems with… (scored in the analyses as ‘4’)/Moderate problems with… (‘3’)/Minor problems with… (‘2’)/No problems with… (‘1’)

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ISSN: 1750-1172

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