Quality of Life and PTSD Symptoms in Family Members of Patients with Prader-Willi Syndrome
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2021-07-01
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en
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Prader-Willi syndrome (PWS) is a rare, genetic developmental disorder, accompanied by
physical, cognitive, and behavioral problems. Research has shown that family members of
patients with PWS face extreme caregiver challenges throughout the life cycle. The current
observational study has investigated the relationship between quality of life and post
traumatic stress disorder (PTSD) symptoms in 87 family members of patients with PWS (Mage
= 49.34, SD = 14.58). Five research questions regarding PTSD symptoms and quality of life
associations have been investigated and multiple groups were formed based on experienced
trauma, age of the patient with PWS, and the formal family relationship to the patient with
PWS. Quality of life was measured with the World Health Organization Quality of Life
Questionnaire-BREF (WHOQoL-BREF), PTSD symptoms with the PTSD-checklist for
DSM-5 (PCL-5), and the presence of traumatic experiences has been inventoried with Life
Evens Questionnaire with Extended A Criterion Questionnaire (LEC-5). Statistical analyses
revealed that lower quality of life is positively related to negative alterations in cognitions and
mood. Also, hyperarousal and physical quality of life are negatively correlated. Further, from
participants who reported a traumatic event, 42% was related to PWS. Moreover, PWS
related traumatic events are accompanied by higher PTSD symptom scores than other trauma.
All family members score similar on PTSD symptoms, but present differences in quality of
life. Next, our data shows that once the PWS patient lives in a group home, family members
are less likely to report PTSD symptoms. Finally, we discuss probable explanations and
implications for further research.
Keywords: Prader-Willi syndrome, family members, trauma, quality of life
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Faculteit der Sociale Wetenschappen