Domaradzki Jan, Walkowiak Dariusz
Department of Social Sciences and Humanities, Poznan University of Medical Sciences, Rokietnicka 7, Poznań, 60-806, Poland.
Department of Organization and Management in Health Care, Poznan University of Medical Sciences, Poznań, Poland.
BMC Psychol. 2025 Jul 9;13(1):763. doi: 10.1186/s40359-025-03102-3.
Dravet syndrome (DS) is a rare, severe, genetically-based epilepsy that begins in infancy. Due to the multiplicity, severity, and treatment-refractory seizures, DS patients are at high risk of status epilepticus and premature death. They also experience many other symptoms and comorbidities affecting their life. This study aimed to assess the impact of DS on caregivers' quality of life and perceived burden using Polish versions of standardized tools - the WHO Quality of Life-BREF and the Zarit Burden Interview.
We conducted an anonymized, self-administered, web-based survey with 106 caregivers of persons with DS with the help of the Association for People with Severe Refractory Epilepsy DRAVET.PL.
This study shows that DS caregivers' quality of life is generally poor and significantly lower than the national average. Specifically, most DS caregivers scored below the mean country score in all four WHOQOL-BREF domains: 87.7% scored below the mean in the social domain, 84.9% in the physical domain, 77.4% in the environmental domain, and 73.6% in the psychological domain. A significant correlation between various quality-of-life domains was observed, as well as a significant negative correlation between caregivers' self-assessed quality of life and their perceived caregiver burden. Lower quality of life and higher burden were also associated with caregivers' poor financial well-being. Caregivers' experiences further varied by sex, education, employment status, place of residence, and declared religiosity.
Since caring for a DS person affects every dimension of caregivers' lives, decreases their quality of life, and increases the feeling of burden while caring for DS patients, healthcare professionals should also monitor caregivers' physical, mental and emotional well-being. An integrated care system that includes the entire DS family should be created.
德雷维特综合征（DS）是一种罕见的、严重的、基于遗传的癫痫，始于婴儿期。由于发作的多样性、严重性和难治性，DS患者发生癫痫持续状态和过早死亡的风险很高。他们还会经历许多影响其生活的其他症状和合并症。本研究旨在使用标准化工具的波兰语版本——世界卫生组织生活质量简表（WHO Quality of Life-BREF）和扎里特负担访谈量表（Zarit Burden Interview），评估DS对照顾者生活质量和感知负担的影响。
在重度难治性癫痫患者协会DRAVET.PL的帮助下，我们对106名DS患者的照顾者进行了一项匿名的、基于网络的自填式调查。
本研究表明，DS患者照顾者的生活质量总体较差，显著低于全国平均水平。具体而言，在WHOQOL-BREF的所有四个领域中，大多数DS患者照顾者的得分均低于全国平均得分：87.7%的人在社会领域得分低于平均水平，84.9%在身体领域，77.4%在环境领域，73.6%在心理领域。观察到生活质量各领域之间存在显著相关性，照顾者自我评估的生活质量与他们感知的照顾负担之间也存在显著负相关。较低的生活质量和较高的负担也与照顾者的经济状况不佳有关。照顾者的经历因性别、教育程度、就业状况、居住地点和宣称的宗教信仰而有所不同。
由于照顾DS患者会影响照顾者生活的方方面面，降低他们的生活质量，并增加照顾DS患者时的负担感，医疗保健专业人员也应监测照顾者的身体、心理和情绪健康。应创建一个包括整个DS患者家庭的综合护理系统。
