BACKGROUND: Prader-Willi syndrome (PWS) is a rare genetic disorder that in many cases is associated with mental health disorders, in addition to characteristic symptoms such as hyperphagia. The current Sars-CoV-2 coronavirus pandemic has led to massive restrictions in health care and social life worldwide. People with PWS represent a particularly vulnerable population group to these restrictions, with unknown impact on their mental health. METHODS: We conducted an online questionnaire to assess the impact of the restrictions associated with the COVID-19 pandemic on the mental health of people with PWS. RESULTS: One hundred and eight caregivers completed the survey about individuals with PWS. Individuals with PWS > 6 years (n = 89) were included for evaluation with regard to psychopathological change. Respondents frequently reported an increase in psychopathological symptoms associated with PWS during the lockdown, with 51.7% reporting increased temper outbursts, 43.8% showing signs of sadness, 38.2% being anxious, 55.0% more irritable, and 39.3% showing more food seeking behaviour. Adjusted for the type of accommodation food seeking behaviour and irritability is increased to a significantly lesser extent in people with PWS accommodated in specialised care facilities compared with those living in their family home. No significant difference could be found between the sexes. CONCLUSION: The COVID-19 pandemic has had a significant effect on the mental health of individuals with PWS, evidenced by an increase in behaviours associated with PWS, including temper outbursts, food-seeking, and irritability, which again underlines their need for specialised care. Individuals living with their families were particularly vulnerable, indicating that they and their families are in special need of support.
BACKGROUND:Prader-Willi syndrome (PWS) is a rare genetic disorder that in many cases is associated with mental health disorders, in addition to characteristic symptoms such as hyperphagia. The current Sars-CoV-2coronavirus pandemic has led to massive restrictions in health care and social life worldwide. People with PWS represent a particularly vulnerable population group to these restrictions, with unknown impact on their mental health. METHODS: We conducted an online questionnaire to assess the impact of the restrictions associated with the COVID-19 pandemic on the mental health of people with PWS. RESULTS: One hundred and eight caregivers completed the survey about individuals with PWS. Individuals with PWS > 6 years (n = 89) were included for evaluation with regard to psychopathological change. Respondents frequently reported an increase in psychopathological symptoms associated with PWS during the lockdown, with 51.7% reporting increased temper outbursts, 43.8% showing signs of sadness, 38.2% being anxious, 55.0% more irritable, and 39.3% showing more food seeking behaviour. Adjusted for the type of accommodation food seeking behaviour and irritability is increased to a significantly lesser extent in people with PWS accommodated in specialised care facilities compared with those living in their family home. No significant difference could be found between the sexes. CONCLUSION: The COVID-19 pandemic has had a significant effect on the mental health of individuals with PWS, evidenced by an increase in behaviours associated with PWS, including temper outbursts, food-seeking, and irritability, which again underlines their need for specialised care. Individuals living with their families were particularly vulnerable, indicating that they and their families are in special need of support.
Authors: Christine Linehan; Gail Birkbeck; Tal Araten-Bergman; Jennifer Baumbusch; Julie Beadle-Brown; Christine Bigby; Valerie Bradley; Michael Brown; Femmianne Bredewold; Masauso Chirwa; Jialiang Cui; Marta Godoy Gimenez; Tiziano Gomeiro; Šárka Kanova; Thilo Kroll; Henan Li; Mac MacLachlan; Jayanthi Narayan; Finiki Nearchou; Adam Nolan; Mary-Ann O'Donovan; Flavia H Santos; Jan Šiška; Tim Stainton; Magnus Tideman; Jan Tossebro Journal: HRB Open Res Date: 2022-04-04
Authors: J E Whittington; A J Holland; D J Driscoll; N Hodebeck-Stuntebeck; A Hoctor Journal: Orphanet J Rare Dis Date: 2022-02-21 Impact factor: 4.123
Authors: Helge Frieling; Christian K Eberlein; Maximilian Deest; Jelte Wieting; Maximilian Michael Jakob; Stephanie Deest-Gaubatz; Adrian Groh; Johanna Seifert; Sermin Toto; Stefan Bleich Journal: Orphanet J Rare Dis Date: 2022-08-26 Impact factor: 4.303