Life Satisfaction, Global Health and Mood in Prader–Willi Syndrome: Use of PROMIS and Glasgow Depression Scales

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL

Journal of Applied Research in Intellectual Disabilities Pub Date : 2025-04-14 DOI:10.1111/jar.70053

Lauren Schwartz, Caroline J. Vrana-Diaz, Jessica E. Bohonowych, Lisa Matesevac, Theresa V. Strong

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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.

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Prader-Willi综合征患者的生活满意度、整体健康和情绪：PROMIS和格拉斯哥抑郁量表的使用

Prader-Willi综合征（PWS）是一种罕见的神经发育障碍，其症状会影响健康和生活质量。关于PWS患者的整体健康、生活质量以及与情绪的关系的数据有限。方法527名PWS患者的父母完成了三项有效的评估，即格拉斯哥抑郁量表-照顾者补充（GDS-CS）、PROMIS父母代理全球健康7和PROMIS父母代理生活满意度8b。结果GDS-CS平均评分为8.29 (SD 4.55)，其中18%的患者得分为13+，反映了可能的抑郁症。平均PROMIS全球健康和生活满意度评分分别为41.46 （SD 8.48）和43.39 (SD 8.48)，低于一般人群。PROMIS量表和GDS-CS量表都随着年龄的增长而恶化，PROMIS和GDS-CS的得分与PWS患者的父母抑郁报告有关。结论这些工具可用于评估PWS患者的情绪和生活质量。

本文章由计算机程序翻译，如有差异，请以英文原文为准。

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来源期刊

Journal of Applied Research in Intellectual Disabilities Multiple-

CiteScore

4.70

自引率

12.50%

发文量

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.