High Levels of Caregiver Burden in Prader-Willi Sydrome

​The PWS-CTC working group entitled Patients & Caregivers Voice performed a study to measure the levels of burden in caregivers of individuals with PWS. The group used the Zarit Burden Interview (ZBI), a tool that was originally developed by Professor Zarit (Penn State U.) to assess the burden of caregiving for individuals with Alzheimer`s disease.  The ZBI is now widely used to measure the burden of caring for individuals with a disability or chronic illness, but had not been used in PWS. This initial study analyzed the responses from 142 caregivers. We found impressively high levels of caregiver burden in PWS. The levels of burden increased as individuals with PWS age, reaching a peak during teenage and young adult. In addition, we found that the burden of PWS adversely affected marriage or romantic relationships, caregiver’s ability to work, caregiver`s sleep and mood (both anxiety and depressed mood).  Interestingly, we also showed that the ZBI is a good predictor of PWS impact on caregiver`s quality of life.


This study was published in the scientific peer-reviewed open access journal PLOS ONE, March 26,2018.

N. Kayadjanian, L. Schwartz, E. Farrar, K. A. Comtois, T. V. Strong (2018). High Levels of Caregiver Burden in Prader-Willi Syndrome. PLoS ONE 

© 2016 PWS Clinical Trial Consortium