Demographic and clinical data were retrieved from medical records. Demographic data included age and sex. Clinical data included age at first seizure and at diagnosis; seizure number, severity, and type in accordance with 2017 International League Against Epilepsy (ILAE)23 (link) (at onset, at study visit, and changes over time); status epilepticus (defined as a seizure with a duration ≥ 30 min or a series of seizures in which the patient does not regain normal mental status between seizures); results from performed tests (genetic tests, electroencephalogram [EEG], and magnetic resonance imaging [MRI]); comorbidities; previous and current treatment (antiepileptic drugs and other therapies); and healthcare resource use (number of visits to physician and admissions to the emergency room or intensive care units [ICU] and attendance to day-care or a rehabilitation centre).
Patient HRQoL was evaluated using the Health Utilities Index Mark 2 and Mark 3 (HUI2/3)24 (link) and the SINDRA questionnaire at the study visit. Both questionnaires were addressed to patient’s caregivers. The HUI 2/3 consists of 15 questions evaluating the following attributes: vision, hearing, speech, ambulation, dexterity, emotion, cognition, self-care, and pain. Each attribute is assigned a score on a 0 to 1 scale, with 0 corresponding to the worst health status and 1 corresponding to the best health status. In addition, an overall HUI score from − 0.371 to 1, where 0 corresponds to death, 1 represents perfect health, and negative scores are health states considered worse than dead. The SINDRA questionnaire was created ad hoc and consisted of 17 statements: seven related to patient functional skills, eight related to patient daily activities, and two related to caregivers’ work absence or work leave caused by patient caring. The SINDRA questionnaire is provided on Additional information. The impact of caregiving on patient’s caregivers was assessed with the care-related quality of life (CarerQoL) questionnaire25 at the study visit. The questionnaire consists of 7 items graded as “no”, “a little” or “a lot” regarding the description of the caregiving situation (CarerQol-7D) and the valuation of informal care in terms of well-being using a visual analogue scale (CarerQol-VAS) in which 0 is “completely unhappy” and 10 “completely happy”. The Spanish validation of the HUI 2/3 and the CarerQoL-7D questionnaires were used with permission. All the information was collected in a case report form by a healthcare professional.
Patient HRQoL was evaluated using the Health Utilities Index Mark 2 and Mark 3 (HUI2/3)24 (link) and the SINDRA questionnaire at the study visit. Both questionnaires were addressed to patient’s caregivers. The HUI 2/3 consists of 15 questions evaluating the following attributes: vision, hearing, speech, ambulation, dexterity, emotion, cognition, self-care, and pain. Each attribute is assigned a score on a 0 to 1 scale, with 0 corresponding to the worst health status and 1 corresponding to the best health status. In addition, an overall HUI score from − 0.371 to 1, where 0 corresponds to death, 1 represents perfect health, and negative scores are health states considered worse than dead. The SINDRA questionnaire was created ad hoc and consisted of 17 statements: seven related to patient functional skills, eight related to patient daily activities, and two related to caregivers’ work absence or work leave caused by patient caring. The SINDRA questionnaire is provided on Additional information. The impact of caregiving on patient’s caregivers was assessed with the care-related quality of life (CarerQoL) questionnaire25 at the study visit. The questionnaire consists of 7 items graded as “no”, “a little” or “a lot” regarding the description of the caregiving situation (CarerQol-7D) and the valuation of informal care in terms of well-being using a visual analogue scale (CarerQol-VAS) in which 0 is “completely unhappy” and 10 “completely happy”. The Spanish validation of the HUI 2/3 and the CarerQoL-7D questionnaires were used with permission. All the information was collected in a case report form by a healthcare professional.
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