Health Problems in Individuals With PWS Are Associated With Lower Quality of Life for Their Parents: A Snapshot in the Brazilian Population

Frontiers in Pediatrics

article

Alexandre Slowetzky Amaro¹  Daniela Andrea Rubin²  Maria Cristina Triguero Veloz Teixeira¹  Arcenio José Ferreira, Jr.¹  Graciele Massoli Rodrigues³  Luiz Renato Rodrigues Carreiro¹ 

[1] Development Disorders Graduate Program, Center for Health and Biological Science, Universidade Presbiteriana Mackenzie;Department of Kinesiology, California State University;Physical Education Program, Universidade São Judas Tadeu;Physical Education Program

关键词: Prader-Willi syndrome;    obesity;    treatment;    quality of life;    behavior problems;   

DOI  :  10.3389/fped.2022.746311

学科分类：社会科学、人文和艺术（综合）

来源: Frontiers

【 摘 要 】

Prader-Willi syndrome (PWS) is a complex genetic disorder requiring interdisciplinary team monitoring and intensive care by parents. So far there is little information on people with PWS in Brazil. Our aim was to describe health problems and treatments used by people with PWS in Brazil and their relationship to their parents' quality of life. Parents answered questionnaires about their child's medical and exercise history, behavior problems, sociodemographic characteristics, and their own quality of life. Results: The responses of the participants showed similar health problems as in other countries. Anxiety and tantrums were the behavioral problems most commonly cited by parents. Parents of people with PWS had lower scores in respect of quality of life than the Brazilian population. Behavioral problems in individuals with PWS were negatively associated with their parents' quality of life. Behavioral and medical conditions in the children were associated with reduced quality of life in the parents. We conclude that heath care should not only be directed toward those with PWS, but also their parents.

【 授权许可】

CC BY