To the Editors:

About 25% of epilepsy is intractable and may require epilepsy surgery. However, up to 30% of patients undergoing presurgical evaluations eventually do not qualify for surgery (Berg et al., 2003) and face the prospect of ongoing seizures. Epilepsy reduces quality of life (QoL) of patients (Baker et al., 1997), but may also influence QoL of people caring for them. We studied whether QoL of caregivers of adults with intractable epilepsy was reduced and which factors accounted for this.

Questionnaires were sent to 63 patients ineligible for epilepsy surgery (>16 years old, IQ > 80; Zijlmans et al., 2007) and their main caregivers. Demographic and seizure information was obtained. Caregivers expressed burden of care on a Visually Aided Scale (VAS; 0–100%), compared to what they imagined life would be like without the patient’s epilepsy. Both patients and caregivers were administered two generic, validated questionnaires, the EuroQol (EQ5D) (resulting in a utility score and a general QoL-VAS-score) and the Rand 36-item Health Survey (RAND-36). The RAND-36 covers eight domains, summarized in two main scores: a mental (MCS) and a physical component score (PCS).

EQ5D utility scores were compared to the Dutch population (Hoeymans et al., 2005). Age-matching was not possible. Results from RAND-36 (Ware & Ksoinksi, 2001) were compared to the age-matched Dutch population (Aaronson et al., 1998). The effects on the caregivers’ MCS of seizure frequency (median and below vs. above median), patients’ MCS (likewise), employment status, and burden of care VAS-score were studied. Comparisons were by two-tailed t-test or Mann-Whitney U test.

Thirth-seven patients and caregivers responded (Table 1). EQ5D utility-score of patients was significantly reduced (0.80 vs. 0.88; p = 0.04; QoL-VAS 72%) and of caregivers possibly reduced (0.83 vs. 0.88; p = 0.30; QoL-VAS 80%) compared to Dutch population. Patients’ RAND-36 scores were lower on MCS, PCS, role physical (−38 points), social functioning (−15), mental health (−13), vitality (−20), and general health (−18).

Table 1.   Clinical and demographic characteristics of patients and caregivers
 Patients (N = 37)Caregivers (N = 37)
Epilepsy characteristics
Mean duration of epilepsy in years27 (range: 8–52) 
Seizure frequency last 2 years  
 Median (/month) 5 (range: 0–150) 
 Seizure free (%) 3 
 <1/month (%)  8 
 1 or more/month (%)89 
  of which daily (%)19 
Using >1 antiepileptic drug (%)89 
Experiencing adverse side effects of antiepileptic drugs (%)64 
Demographic characteristics
Mean age in years39 (range: 20–66)46 (range: 24–68)
Female (%)4660
Paid employment (%)46 
Relationship to patient (%)
 Partner 60
 Parent 32
 Other  8
Cohabiting (%)7676
Hours of care given per week (mean) 10

Caregivers of patients with intractable epilepsy scored low on vitality (−13 points; Fig. 1) and seemed to have reduced mental well-being (MCS −3 points, p = 0.07). This was not influenced by the patients’ mental well-being, seizure frequency, or employment status. There was an association, however, with self-reported high burden of care (Fig. 2), suggesting that individual coping style is a determinant factor in the mental health of caregivers.


Figure 1.  Proportional difference of SF-36 scores of patients (blue squares) and caregivers (orange squares) from the average Dutch population (Aaronson et al., 1998). Positive scores represent better scores. Significantly different caregiver scores (p < 0.05) are marked with an asterisk. A significant difference was found for patients on the MCS, the PCS, and the domains: social functioning (−15 points), mental health (−13 points), vitality (−20 points), general health (−18 points), and role physical (−38 points). This last domain describes experienced physical restriction in reaching goals in life. A significant difference was found for caregivers on the vitality domain (−13 points) and a near significant difference for the MCS (−3 points; p = 0.07).

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Figure 2.  Effect of patient characteristics and burden of care (up and including median vs. above median) on mental component score of caregivers. The lines represent median and quartile scores. Caregiver’s MCS was not influenced by the patients’ mental well-being, seizure frequency, or employment status. There was a possible association with self-reported high burden of care (p = 0.07).

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Sample size was small, and our results should be confirmed in a larger group. EQ5D-scores were probably flattering in this relatively young group, as age adjustment was not possible. Our patients were well motivated to pursue epilepsy surgery, which may have biased the results toward certain personality characteristics. This limits extrapolation. In clinical care, the well-being of caregivers should be considered. Interventions could focus on individual coping style. We recommend support groups or counseling for caregivers of patients with intractable epilepsy.


  1. Top of page
  2. Acknowledgments
  3. References

We thank all patients and caregivers who participated in this study. We also thank Chad Gundy and Neil Aaronson from the Netherlands Cancer Institute for providing us with extensive data of Dutch population scores on the RAND-36.

The study was financially supported by the Netherlands Organization for Scientific Research (NOW), grant no. 945-05-039.

We confirm that we have read the Journal’s position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.

Disclosure: None of the authors has any conflict of interest to disclose.


  1. Top of page
  2. Acknowledgments
  3. References