Lauren Schwartz, Caroline J. Vrana-Diaz, Jessica E. Bohonowych, Lisa Matesevac, Theresa V. Strong
{"title":"Life Satisfaction, Global Health and Mood in Prader–Willi Syndrome: Use of PROMIS and Glasgow Depression Scales","authors":"Lauren Schwartz, Caroline J. Vrana-Diaz, Jessica E. Bohonowych, Lisa Matesevac, Theresa V. Strong","doi":"10.1111/jar.70053","DOIUrl":null,"url":null,"abstract":"<div>\n \n \n <section>\n \n <h3> Background</h3>\n \n <p>Prader–Willi syndrome (PWS) is a rare neurodevelopmental disorder with symptoms that impact health and quality of life (QOL). There is limited data on global health, QOL and the relationship with mood in individuals with PWS.</p>\n </section>\n \n <section>\n \n <h3> Methods</h3>\n \n <p>Parents completed three validated assessments, the Glasgow Depression Scale-Carer Supplement (GDS-CS), PROMIS Parent-Proxy Global Health 7 and PROMIS Parent-Proxy Life Satisfaction 8b, for 527 individuals with PWS.</p>\n </section>\n \n <section>\n \n <h3> Results</h3>\n \n <p>Mean GDS-CS score was 8.29 (SD 4.55), and 18% had a score of 13+, reflective of possible depression. Mean PROMIS Global Health and Life Satisfaction scores were 41.46 (SD 8.48) and 43.39 (SD 8.48), respectively, and are lower compared to the general population. Both PROMIS scales worsened with age, and scores on the PROMIS and GDS-CS were associated with parent reports of depression for the person with PWS.</p>\n </section>\n \n <section>\n \n <h3> Conclusions</h3>\n \n <p>These validated instruments may be useful for assessing mood and QOL in PWS.</p>\n </section>\n </div>","PeriodicalId":51403,"journal":{"name":"Journal of Applied Research in Intellectual Disabilities","volume":"38 2","pages":""},"PeriodicalIF":2.1000,"publicationDate":"2025-04-14","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"https://onlinelibrary.wiley.com/doi/epdf/10.1111/jar.70053","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Applied Research in Intellectual Disabilities","FirstCategoryId":"3","ListUrlMain":"https://onlinelibrary.wiley.com/doi/10.1111/jar.70053","RegionNum":3,"RegionCategory":"医学","ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q2","JCRName":"PSYCHOLOGY, EDUCATIONAL","Score":null,"Total":0}
引用次数: 0
Abstract
Background
Prader–Willi syndrome (PWS) is a rare neurodevelopmental disorder with symptoms that impact health and quality of life (QOL). There is limited data on global health, QOL and the relationship with mood in individuals with PWS.
Methods
Parents completed three validated assessments, the Glasgow Depression Scale-Carer Supplement (GDS-CS), PROMIS Parent-Proxy Global Health 7 and PROMIS Parent-Proxy Life Satisfaction 8b, for 527 individuals with PWS.
Results
Mean GDS-CS score was 8.29 (SD 4.55), and 18% had a score of 13+, reflective of possible depression. Mean PROMIS Global Health and Life Satisfaction scores were 41.46 (SD 8.48) and 43.39 (SD 8.48), respectively, and are lower compared to the general population. Both PROMIS scales worsened with age, and scores on the PROMIS and GDS-CS were associated with parent reports of depression for the person with PWS.
Conclusions
These validated instruments may be useful for assessing mood and QOL in PWS.
期刊介绍:
JARID is an international, peer-reviewed journal which draws together findings derived from original applied research in intellectual disabilities. The journal is an important forum for the dissemination of ideas to promote valued lifestyles for people with intellectual disabilities. It reports on research from the UK and overseas by authors from all relevant professional disciplines. It is aimed at an international, multi-disciplinary readership. Topics covered include community living, quality of life, challenging behaviour, communication, sexuality, medication, ageing, supported employment, family issues, mental health, physical health, autism, economic issues, social networks, staff stress, staff training, epidemiology and service provision.