The Prader-Willi syndrome Profile: validation of a new measure of behavioral and emotional problems in Prader-Willi syndrome

Table 4 Relative frequencies of seven clinically significant “Red Flag” items

Red Flag Items	% Sometimes or Often
Rectal picking (may not directly observe this behavior but evidence may be on hands, underwear, or sheets).	20.3%
Pulls hair out, including head, eyebrows, lashes*	17.9%
Runs away	13.4%
Makes gestures or behaves in ways that could cause serious self-harm (e.g., runs into street/traffic, opens door in moving car, injures self with intent).	20.6%
Makes statements such as I don’t want to be alive, It would be better if I weren’t here, or I can’t do this anymore.	16.6%
Sees or talks to people who are not there.	26.2%
Reports hearing voices that others do not (could be scary or friendly voices).	9.7%

Note * This percentage was derived from the pilot study. Although not included in the large-scale study, we deemed it clinically important to include it as a Red Flag. This decision was also endorsed by parents and PWS specialists involved in Phase 2 of the study

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