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使用欧洲五维度三级生活质量量表(EQ-5D-3L)对接受家庭式和门诊式癫痫护理的癫痫患者的生活质量进行比较。

A Comparison of the Quality of Life of People With Epilepsy Receiving Home-Based and Clinic-Based Epilepsy Care Using the European Quality of Life Five-Dimension Three-Level (EQ-5D-3L) Scale.

作者信息

Kalra Shivani, Jiwan Triza, Singh Gagandeep, Gautam Parshotam L, Bansal Amit

机构信息

Critical Care, Shaheed Kartar Singh Sarabha (SKSS) College of Nursing, Ludhiana, IND.

Psychiatry and Nursing, Dayanand Medical College and Hospital, Ludhiana, IND.

出版信息

Cureus. 2023 Feb 16;15(2):e35045. doi: 10.7759/cureus.35045. eCollection 2023 Feb.

Abstract

Background and objective Epilepsy is a chronic neurological condition that, both physically and psychologically, puts a person at risk for poor quality of life (QOL). People with epilepsy (PWE) may experience shame, fear, and rejection and feel discriminated against, hence avoiding social interactions. To avoid being labeled as having epilepsy, patients may conceal their disease and refuse medical attention, which can lead to treatment discontinuation and significantly impact the quality of life. Epilepsy care in India has fallen back on primary care physicians because there are not enough neurologists available to treat the condition. Home-based care (HBC) may overcome many barriers by providing free antiepileptic drugs (AEDs), eliminating the "distance to a health facility," and providing correct information that may improve QOL. This study is therefore conducted to compare the QOL between people with epilepsy receiving home-based care (HBC) and routine clinic-based care (CBC). Methodology The people with epilepsy enrolled in this study were already part of a community-based randomized controlled trial conducted to compare the effect of regular home-based epilepsy care with routine clinic-based epilepsy care on antiepileptic adherence among urban and peri-urban areas of Ludhiana, Punjab, India (explained further in the study). The present study is a cohort study where the two cohorts, one receiving home-based epilepsy care (n = 97) and the other receiving routine clinic-based epilepsy care (n = 76), were compared for QOL at two points in time, i.e., at baseline (at enrolment) and after 24 months of receiving epilepsy care, using the European Quality of Life Five-Dimension Three-Level (EQ-5D-3L) scale. Results The mean EQ-5D-3L index scores for the HBC group at baseline were 0.88 ± 0.15, and after 24 months, the scores increased to 0.94 ± 0.17. The baseline mean index scores for the CBC group were 0.89 ± 0.21, and after 24 months, the value increased to 0.90 ± 0.19. The mean difference in QOL in the HBC group showed a higher difference than in the CBC group (0.06 ± 0.1 versus 0.01 ± 0.1), but the difference was found to be statistically not significant (p = 0.067). As per the five dimensions of the EQ-5D-3L scale, i.e., mobility, self-care, usual activities, pain/discomfort, and anxiety/depression, there was a decrease in the number of PWE reporting problems among both groups after 24 months of epilepsy care. Sociodemographic and clinical variables such as level of education, working status, age at the onset of seizures, frequency of seizures, treatment regimen, presence of comorbidities, and adverse drug reactions significantly affect the QOL of people with epilepsy at p < 0.05. Conclusion The results of the study emphasize that epilepsy has a negative impact on QOL. The results showed a higher QOL among the people in the HBC group as compared to the CBC group, but the difference was not statistically significant. There was an improvement in QOL from baseline after dedicated care in both groups. The problems related to mobility, self-care, usual activities, pain/discomfort, and anxiety/depression have been significantly reduced in the HBC group. Having low levels of education, not having a job, starting to have seizures at a young age, having seizures more often, receiving more than one type of treatment, and the presence of other health problems and side effects are factors associated with poor QOL among people with epilepsy.

摘要

背景与目的 癫痫是一种慢性神经疾病,无论在生理还是心理方面,都使患者面临生活质量低下的风险。癫痫患者可能会感到羞耻、恐惧和被排斥,觉得受到歧视,从而避免社交互动。为了避免被贴上患有癫痫的标签,患者可能会隐瞒病情并拒绝就医,这可能导致治疗中断并严重影响生活质量。在印度,由于没有足够的神经科医生来治疗癫痫,癫痫护理工作已落到初级保健医生身上。居家护理(HBC)可以通过提供免费抗癫痫药物(AEDs)、消除“到医疗机构的距离”以及提供可能改善生活质量的正确信息来克服许多障碍。因此,本研究旨在比较接受居家护理(HBC)和常规门诊护理(CBC)的癫痫患者的生活质量。

方法 参与本研究的癫痫患者已经是一项基于社区的随机对照试验的一部分,该试验旨在比较在印度旁遮普邦卢迪亚纳市的城市和城郊地区,常规居家癫痫护理与常规门诊癫痫护理对癫痫患者抗癫痫药物依从性的影响(在研究中进一步解释)。本研究是一项队列研究,在两个时间点,即基线(入组时)和接受癫痫护理24个月后,使用欧洲生活质量五维度三级(EQ-5D-3L)量表,对两个队列进行比较,一个队列接受居家癫痫护理(n = 97),另一个队列接受常规门诊癫痫护理(n = 76)。

结果 HBC组在基线时的平均EQ-5D-3L指数评分为0.88±0.15,24个月后,评分增至0.94±0.17。CBC组的基线平均指数评分为0.89±0.21,24个月后,该值增至0.90±0.19。HBC组生活质量的平均差异显示出比CBC组更高的差异(0.06±0.1对0.01±0.1),但发现该差异在统计学上不显著(p = 0.067)。根据EQ-5D-3L量表的五个维度,即行动能力、自我护理、日常活动、疼痛/不适和焦虑/抑郁,在接受癫痫护理24个月后,两组中报告有问题的癫痫患者数量均有所减少。社会人口统计学和临床变量,如教育程度、工作状态、癫痫发作起始年龄、癫痫发作频率、治疗方案、合并症的存在以及药物不良反应,在p < 0.05时显著影响癫痫患者的生活质量。

结论 研究结果强调癫痫对生活质量有负面影响。结果显示,与CBC组相比,HBC组患者的生活质量更高,但差异无统计学意义。两组在接受专门护理后,生活质量均较基线有所改善。HBC组中与行动能力、自我护理、日常活动、疼痛/不适和焦虑/抑郁相关的问题已显著减少。教育程度低、没有工作、年轻时开始癫痫发作、癫痫发作更频繁、接受不止一种类型的治疗以及存在其他健康问题和副作用是与癫痫患者生活质量差相关的因素。

https://cdn.ncbi.nlm.nih.gov/pmc/blobs/556f/10023070/0b739a0350f5/cureus-0015-00000035045-i01.jpg

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