BURDEN ON YOUR PATIENTS
The physical symptoms of PWS alone place a large burden on patients, while the cognitive and
behavioral deficits severely impact school, employment, and the ability to live independently.3-6
Clinical
- Increased risk of choking and gastric rupture4,5,7,8
- Increased risk of mental health disorders4,5,9
- Obesity-related complications and decreased lean body mass4
Work and school
- Inability to focus due to intrusive food thoughts1,6,10
- Learning disabilities4
- Deficits in short-term memory and auditory processing6
Social
- Difficulty forming relationships6
- Difficulty understanding and responding to others’ emotions1
- Emotional instability and rigidity1
BURDEN ON CAREGIVERS AND FAMILIES
The 24/7 dedication to loved ones with hyperphagia in PWS means caregivers experience burdens
of their own. Accommodating for a loved one living with PWS may also come at the expense of family dynamics.11,12
Caregivers
- Employment challenges11
- Risk of physical harm13,14
- Significant mental load14
- Minimal flexibility with routines1,3
- Required to fulfill a multitude of roles11,13-15
Families
- Siblings experience PTSD12
- Negative impact on marriage and relationships11
- Greater annual medical costs16
- Increased complexity around planning family and social gatherings3
Every aspect of life is impacted by the burden of PWS.3
When special occasions come and there are birthday parties with cake and food, we can't just freely accept invites.
- Caregiver of a loved one with PWS
References: 1. Schwartz L, Caixas A, Dimitropoulos A, et al. Journal of Neurodevelopmental Disorders (2021) 13:25 2. Heymsfield SB, Avena NM, Baier L. Obesity. 2014;22(1):S1-S17. 3. Matesevac L, Vrana-Diaz CJ, Bohonowych JE, et al. Scientific Reports. 2023;13:20573. 4. Driscoll DJ, Miller JL, Cassidy SB. Prader-Willi Syndrome. 1998 Oct 6 [Updated 2023 Nov 2]. In: Adam MP, Feldman J, Mirzaa GM, et al. GeneReviews® Seattle (WA): University of Washington, Seattle; 1993-2024. 5. Cassidy SB, Schwartz S, Miller JL, et al. Genet Med. 2012;14(1):10–26. 6. Bedard KE, Pacha D, Griffith AK, et al. Children and Youth Services Review. 2024;163:1-7. 10. 7. Butler MG, Miller JL, Forster JL.92019;15: 207-244. 8. Butler MG, Manzardo AM, Heinemann J, et al. Genet Med. 2017;19(6):635-642. 9. Powis L, Oliver C. Research in Developmental Disabilities. 2014;35:1051-1071. 10. Dykens EM, Roof E, Hunt-Hawkins H. Journal of Applied Research in Intellectual Disabilities. 2021;35(2):460-470. 11. Kayadjanian N, Schwartz L, Farrar E, et al. PLoS One. 2018;13(3):1-15, e0194655. 12. Mazaheri MM, Rae-Seebach RD, Preston HE, et al. Journal of Intellectual Disability Research. 2013;57(9):861-873. 13. Kayadjanian N, Vrana-Diaz C, Bohonowych J, et al. PLoS One. 2021;16(3):1-22, e0248739. 14. Kowal K, Skrzypek M, Kocki J. PLoS One. 2022;17(9):1-34, e0273295. 15. Dykens EM, Roof E, Hunt-Hawkins H, et al. PLoS One. 2019;14(10):e0223162. 16. Shoffstall AJ, Gaebler JA, Kreher NC, et al. J Pediatr. 2016;175:137-143.