普拉德-威利综合征患者的生活满意度、整体健康状况及情绪：患者报告结果测量信息系统（PROMIS）和格拉斯哥抑郁量表的应用
Life Satisfaction, Global Health and Mood in Prader-Willi Syndrome: Use of PROMIS and Glasgow Depression Scales.
作者信息
Schwartz Lauren, Vrana-Diaz Caroline J, Bohonowych Jessica E, Matesevac Lisa, Strong Theresa V
机构信息
Foundation for Prader-Willi Research, Covina, California, USA.
出版信息
J Appl Res Intellect Disabil. 2025 Mar;38(2):e70053. doi: 10.1111/jar.70053.
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.
背景
普拉德-威利综合征（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（QOL）。关于PWS患者的全球健康、生活质量以及与情绪的关系的数据有限。
方法
父母为527名PWS患者完成了三项经过验证的评估，即格拉斯哥抑郁量表-照顾者补充版（GDS-CS）、患者报告结果测量信息系统（PROMIS）家长代理全球健康量表7和PROMIS家长代理生活满意度量表8b。
结果
GDS-CS的平均得分为8.29（标准差4.55），18%的人得分在13分及以上，这可能反映出存在抑郁情绪。PROMIS全球健康量表和生活满意度量表的平均得分分别为41.46（标准差8.48）和43.39（标准差8.48），与一般人群相比更低。两个PROMIS量表得分均随年龄增长而变差，且PROMIS量表和GDS-CS的得分与PWS患者家长报告的抑郁情况相关。
结论
这些经过验证的工具可能有助于评估PWS患者的情绪和生活质量。
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