Psychiatric care for people with Prader-Willi syndrome—characteristics, needs and barriers

IF 2.1 3区医学 Q2 PSYCHOLOGY, EDUCATIONAL Journal of Applied Research in Intellectual Disabilities Pub Date : 2024-06-11 DOI:10.1111/jar.13266

Jelte Wieting, Theresa Herrmann, Stephanie Deest-Gaubatz, Christian Karl Eberlein, Stefan Bleich, Helge Frieling, Maximilian Deest

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Abstract

Background

Prader-Willi syndrome (PWS) is commonly associated with intellectual disability, but also with a specific behavioural phenotype and a high predisposition to psychiatric comorbidity. This study examines the psychiatric care situation of people with PWS.

Method

A structured online questionnaire was administered to carers of people with PWS living in Germany, asking about demographic, diagnostic and treatment parameters as well as personal experiences.

Results

Of 77 people with PWS, 44.2% had at least one psychiatric comorbid diagnosis. The main reasons for seeking psychiatric care were emotional outbursts and aggressive behaviour. 34.9% reported that they were currently seeking psychiatric care without success. However, 32.5% of PWS had been treated with psychotropic medication, mainly antipsychotics.

Conclusions

Psychiatric comorbidity appears to be undertreated in PWS, especially in the ambulatory setting. Uncertainty among mental health care providers may also lead to frequent off-label use of psychotropic medications.

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为普拉德-威利综合征患者提供精神病护理的特点、需求和障碍。

背景：普拉德-威利综合征（PWS）通常伴有智力障碍，但也有特殊的行为表型，而且极易合并精神疾病。本研究调查了 PWS 患者的精神科护理情况：方法：对居住在德国的 PWS 患者的照顾者进行了结构化在线问卷调查，询问了有关人口统计、诊断和治疗参数以及个人经历等方面的情况：结果：在77名PWS患者中，44.2%的患者至少合并有一种精神疾病。寻求精神病治疗的主要原因是情绪失控和攻击行为。34.9%的患者表示，他们目前正在寻求精神科治疗，但没有成功。然而，32.5%的PWS患者接受过精神药物治疗，主要是抗精神病药物：结论：PWS 患者的精神疾病合并症似乎治疗不足，尤其是在门诊环境中。结论：PWS 患者的精神疾病合并症似乎治疗不足，尤其是在门诊环境中。精神医疗服务提供者的不确定性也可能导致精神药物的频繁标示外使用。

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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.