Primary caregivers of patients with Prader-Willi syndrome (PWS) often experience significant deterioration in their mental health and quality of life, according to a study published in Child Care, Health and Development. 

PWS is a rare disorder linked to developmental delay, intellectual disability, and behavioral issues, including at times self-injurious behaviors. Hyperphagia, a prominent feature of this disorder, can be difficult to manage for caregivers, leading to anxiety, depression, and high stress levels. 

When discussing caregivers of individuals with PWS, it is important to distinguish between primary and secondary caregivers. Primary caregivers tend to be parents and guardians, whereas secondary caregivers are often other cohabitating family members. 

The authors of the study sought to evaluate the mental health and quality of life of primary vs secondary caregivers of patients with PWS. The research team selected participants who were family members of genetically confirmed patients with PWS. Participants were asked to fill in several questionnaires, such as the Zarit Caregiver Burden Interview (ZBI), the Hospital Anxiety and Depression Scale, the Pediatric Quality of Life Family Impact Module, the Family APGAR (adaptation, partnership, growth, affection, and resolve) Questionnaire, and the summarized version of the World Health Organization Quality of Life Scale (WHOQOL-BREF). 

Read more about PWS etiology 

Thirty-three families of PWS patients were included in the study, encompassing 69 caregivers; 50 were fathers/mothers and 19 were representatives of another type of bond (immediate/extended family and tutors). Eleven percent of main caregivers had a high probability of having depression; the figure among secondary caregivers was 10%. 

In terms of quality-of-life questionnaires, only the ZBI and the WHOQOL-BREF showed a difference between primary and secondary caregivers, In the ZBI scale, 61% of main caregivers reported intense burden, while 29% of other living relatives reported the same. In the WHOQOL-BREF scale, main caregivers had lower results compared with cohabitating relatives in 4 dimensions, especially the psychological dimension. 

“The main finding of our study is observing that caring for people with PWS might exert a detrimental effect on the mental health, burden and quality of life of caregivers, with a greater impact among primary caregivers compared with the other living relatives,” the authors concluded. 


González Ruiz Y, Gerk A, Stegmann J. Mental health impact on primary and secondary Prader-Willi syndrome caregiversChild Care Health Dev. Published online August 23, 2023. doi:10.1111/cch.13162