Quality of life study for caregivers of people with uncontrolled focal-onset seizures

Abstract

Aim

The aim of this study was to capture and measure the impact of caregiving for an adult with uncontrolled drug-resistant focal-onset seizures (FOS) on the caregivers’ quality of life (QoL), and to quantify the costs of productivity losses associated with providing informal care in this patient population.

Methods

An online survey, which included the EQ-5D-5L, CarerQol-7D and the Work Productivity and Activity Impairment: Specific-Health Problem (WPAI:SHP) questionnaires, was administered to caregivers of individuals with uncontrolled drug-resistant FOS in the United Kingdom (UK), France, Spain, Germany, Italy, and Sweden.

Results

The study included 345 caregivers. Most were males, aged between 25 and 34 years old whose caring responsibilities took between 15 and 24 h per week. The caregivers’ mean EQ-5D-5L score was 0.6, with 95% confidence intervals (CI) of [0.58, 0.63], whilst the mean CarerQol-7D score was 72.61 [70.46, 74.76]. Caregivers’ mental health was the most substantially affected aspect of their QoL. In addition, most caregivers reported deriving some or a lot of fulfilment out of their caregiving tasks. The WPAI:SHP showed that the mean percentage of work impairment due to caregiving responsibilities was 63%, [59.75, 66.26]. The mean annualised costs of productivity losses per caregiver were estimated at €14,872 [€11,908; €17,888].

Limitations

One limitation consisted in the use of an online survey instead of a face-to-face interview. However, the medical terms were clearly explained, and examples were provided to help participants to give accurate responses. Another limitation was that the respondents self-reported as caregivers. Efforts were made to mitigate this weakness by using screener questions.

Conclusion

This study found that providing informal care for people with uncontrolled drug-resistant FOS had a negative impact on caregivers’ QoL, with mental health being affected the most. However, caregivers found their role fulfilling and had support with their caring tasks.

Keywords:

• Quality of life
• epilepsy
• caregiver
• EQ-5D-5L
• CarerQol-7D
• WPAI

JEL classification codes:

• E24
• E2
• E
• H51
• H5
• H

Transparency

Declaration of funding

This study was sponsored by Arvelle Therapeutics, a company of Angelini Pharma. SK Pharmaceuticals is the licensor of cenobamate. PHMR received financial support for conducting this study, including the development, administration, and data collection of the online survey, data analysis and preparation of the manuscript.

Declaration of financial/other interests

IAS, IF and LL are full-time employees of PHMR. NS, JM, EDO’F and SJ are former employees of Arvelle Therapeutics GmbH. FP is a full-time employee of Angelini Pharma. Peer reviewers on this manuscript have no relevant financial or other relationships to disclose.

Author contributions

IAS: Led the analysis and drafting of the manuscript, contributed to the study design and interpretation. IF: Contributed to the study design, analysis, interpretation, and drafting of the manuscript. NS: Contributed to the study design, analysis, interpretation, and drafting of the manuscript. FP: Contributed to the study design, analysis, interpretation, and drafting of the manuscript. JM: Contributed to the study design, analysis, interpretation, and drafting of the manuscript. EDO’F: Contributed to the study design, analysis, interpretation, and drafting of the manuscript. LL: Led the study design, contributed to the analysis, interpretation, and drafting of the manuscript. Oversight of the project.

Acknowledgements

No assistance in the preparation of this article is to be declared.