Quality-of-Life Outcomes in Adults Following Epilepsy Surgery

Abstract

People with epilepsy often report the negative impact of their condition on many aspects of quality of life (QOL). While surgical intervention is aimed at reducing or stopping seizures, there is an implicit assumption among both patients and physicians that successful surgery will result in beneficial changes in quality-of-life measures (see Chap. 16). This chapter reviews the quality-of-life (QOL) outcome literature in epilepsy surgery. The majority of studies in this field have utilized follow-up intervals of no more than 1–2 years. The literature is diverse and a wide range of surgical procedures, QOL measures, sample sizes, ages at onset, follow-up intervals, and controlled versus noncontrolled study designs have been reported. Improvements in QOL do not automatically accompany seizure freedom, in the short term at least. Psychiatric comorbidities, employment status, ability to drive, and antiepileptic drug (AED) cessation appear to be better predictors of health-related quality-of-life measures than seizure freedom alone. Improvements in QOL measures may be more common following right versus left temporal lobe resections. There is a complex relationship between measures of cognitive decline and seizure freedom following surgery with respect to their impact on QOL measures. At present, little is known about the impact of surgery at different stages in adulthood. It is likely that QOL changes are different for those who have surgery in the 20s compared to those in middle age or later. Future research in this area should incorporate standardized measures of seizure outcome and QOL measures with normative data. Studies must also employ valid measures that capture meaningful change in QOL from the patient’s perspective at different time points after epilepsy surgery. It is likely that meaningful changes in QOL will take many years to develop after surgery, particularly for those patients who have lived most of their lives with epilepsy. Outcome studies with follow-up periods of 12–24 months are likely to underestimate the benefits of seizure freedom conferred by surgery. Only studies with longer-term follow-ups are able to accurately measure the impact in this domain.

Appendices

Appendix 12.1. Summary of Study Characteristics and Results from Controlled Studies of Quality of Life after Epilepsy Surgery in adults

Author	Surgical procedure	Sample size	Age at onset	Age at surgery	Study age	Outcome measures	Seizure outcome	Summary of results	Follow-up interval
1. Kim et al. [12]	Not specified	19 surgery 21 no surgery 20 control	Not reported	Not reported	Surgery: 26.8 Control: 26.5	Korean version of QOLIE-89	Not reported	Individuals in surgery and no-surgery groups reported lower scores overall as compared to controls. The surgery group had improved postop QOL scores.	Pre-surgery and >3 mo. postop evaluation
2. Vickrey et al. [7]	Anterior temporal lobectomy (n = 175) Extratemporal lobectomy (n = 22)	202 surgery 46 no surgery	Surgery: 11.9 years No surgery: 12 years	Not reported	Surgery: 27 years No surgery: 26 years	ESI-55 (at follow-up only) Employment KAS AEDs Seizure outcome	Surgery: 60 % SF (no seizures, auras or 1 seizure) No surgery: 11 % SF	The surgery group scored significantly higher on 5 of 11 scales (seizure health perception, social function, pain, role limitations caused by physical problems and role limitations caused by emotional problems).	Pre-surgery, 5.8 years for surgery 5.7 years for no surgery
3. Kellet et al. [8]	48 % Anterior temporal lobectomy 25 % Amygdalohippocampectomy 18 % Temporal lesionectomy 9 % Extratemporal resection	94 surgery 36 no surgery	Surgery: 11.7 years No surgery: 12.4 years	Not reported	Surgery: 33.1 years No surgery: 33.6 years	Overall QOL Overall health Impact of epilepsy AEDs Seizure frequency Surgery satisfaction Stigma Mastery Anxiety Self-esteem Depression Affect balance Employment or education HRQOL model (Baker et al. [47])	Surgery: 47.9 % in the past year. (auras counted as seizures).	QOL outcomes were significantly better for SF group post-surgery than those with continuous seizures and the no-surgery group. QOL improved for participants with less frequent seizures, but to a lesser degree.	1986–1994 (years included in follow-up) No interval given.
4. McLachlan et al. [28]	Temporal lobectomy	51 surgery 21 no surgery	Surgery: 12.1 years No surgery: 17 years	Not reported	Surgery: 31.9 years No surgery: 34.2 years (baseline)	ESI-55	Surgery: 88 % >90 % reduction or SF Nonsurgery: 8 % >90 % reduction or SF (2-yr follow-up)	SF group and participants with at least 90 % seizure reduction improved in QOL post-surgery. This improvement was most evident at 2-yr follow-up. QOL deteriorated with < 90 % seizure reduction.	Pre-surgery, 6, 12, and 24 months
5. Gilliam et al. [16]	Anterior temporal lobectomy	125 surgery 71 waitlist control	Surgery: 12.3 years Waitlist: 14 years	Surgery: 31 years Wait-list: 33 years	Not reported	ESI-55 POMS Driving Employment/school AEDs Seizure frequency Adverse events profile	Surgery: 65 % SF (no seizures or only auras)	Surgery group had better QOL scores in 8 or 11 scales. SF status and IQ not associated with better QOL. Mood status, employment, driving and AED cessation were associated with better QOL.	12 and 24 months
6. Markand et al. [20]	Anterior temporal lobectomy	53 surgery 37 no surgery	Surgery: 12.3 years No surgery: 13.4 years	Not reported	Surgery: 31 years No surgery: 36.9 year (baseline)	QOLIE-89	Surgery: 73.6 % SF No surgery: 0 % SF (Engel classification)	Overall QOL score and 10 of 17 scale scores improved in surgery group and was related to SF status	Pre-surgery, 1 and 2 years
7. Helmstaedter et al. [30]	Temporal lobectomy	147 surgery 120 no surgery	Surgery: 12 years No surgery: 17 years	Not reported	Surgery: 31 years No surgery: 35 years	QOLIE-10 VLMT DCS-R Employment or school BDI	Surgery: 63 % SF No surgery: 12 % SF	Seizure free improvement of non-memory functions in T1-T2 and improvement of memory in T2-T3 Seizure free less impaired QOLIE-10 scores and less depression	Pre-surgery, 1 year and 2–10 years
8. Aydemir et al. [29]	Temporal lobectomy	21 surgery 20 pre-surgery	Surgery: 8 years Pre-surgery: 6.3 years	Not reported	Surgery: 27 years Pre-surgery: 24.8 years	SF-36 BDI STAI Stigma Perceived impact of epilepsy Opinions on epilepsy and surgery	Surgery: 47.6 % SF	QOL of post-surgery was better than scores before surgery	6 months to 4 years Average 27 months
9. Bien et al. [15]	Temporal lobectomy	131 surgery 105 waitlist control 99 presurgical candidates 49 no surgery	Not reported	Not reported	Surgery: 31.1 years Waitlist: 35.8 years Presurgical: 31.9 years No surgery: 36.6 years	ESI-55 Seizure questionnaire AEDs	Surgery: 52 % SF Waitlist: 5 % SF Presurgical: 14 % SF No surgery: 24 % SF	QOL scores of SF higher than those who were not SF	Minimum 1 year
10. Mikati et al. [9]	75 % Temporal lobectomy 25 % Extratemporal resections	20 surgery 17 no surgery 20 controls	Surgery: 9.3 years No surgery: 14.82 years	Not reported	Surgery: 30.5 years No surgery: 31.5 years Control: 29.2 years	ESI-55	Surgery: 85 % SF No surgery: 35 % SF (Engel classification)	QOL was significantly better in surgery group than in nonsurgery group and reached similar levels to healthy controls at 3-year follow-up	3 years
11. Stavem et al. [14]	Resective surgery for focal epilepsy	70 surgery 70 matched controls	Surgery: 9.4 years No surgery: 9.6 years	Surgery: 24 years	Surgery: 37 years No surgery: 37 years	QOLIE-89	Surgery: 48 % SF No surgery: 19 % SF	Surgery patients had higher HRQOL scores than nonsurgery patients	Average 15 years
12. McGlone et al. [11]	Anterior temporal lobectomy (n = 8) Amygdalohippocampectomy (n = 1) Hemispherectomy (n = 1)	16 VNS, 10 surgery 9 no surgery	Not reported	Not reported	VNS: 35 years Surgery: 36 years No surgery: 37 years	QOLIE-89 GDS WMS, MOQ	Not reported	QOL improved more in surgery group than in VNS or medically managed group	Pre-surgery and 1 year
13. Choi-Kwon et al. [17]	Anterior temporal lobectomy (n = 22) Other (n = 10)	32 surgery 32 no surgery	Not reported	Not reported	Surgery: 30.6 years No surgery: 31.4 years	Korean ESI-55 Seizure outcome AEDs Seizure stigma Korean version of HADS	Surgery: 84 % SF No surgery: 45 % SF (2-yr follow-up)	QOL improved in surgery group but not in nonsurgery group. At 6 months, SF was an important factor in QOL, while at 2 years, AEDs and depression were important	Pre-surgery, 6 months and 2 years
14. Engle et al. [5]	Temporal lobectomy	15 surgery 23 no surgery	Not reported	Not reported	Surgery: 37.5 years No surgery: 30.9 years (baseline)	QOLIE-89 QOLIE AD-48 Seizure outcome	Surgery: 73 % SF No surgery: 0 % SF	QOL scores were higher in the surgery group than the no-surgery group, but this difference was not significant	Pre-surgery, and every 3 months for 2 years
15. Kanchanatawan [13]	Not specified	60 surgery 60 no surgery	Not reported	Not reported	Surgery: 36.1 years No surgery: 29.3 years	Thai version of WHOQOL-BREF-26 Thai version of HDRS	Surgery: 66.7 % SF No surgery: 5 % SF	Surgery group had better QOL scores than nonsurgery group and had similar QOL scores compared to the general Thai population	Minimum 1 year
16. Fiest et al. [6]	Temporal lobectomy	40 surgery 40 no surgery	Surgery: 14.3 years No surgery: 16.2 years	Not reported	Surgery: 35.5 years No surgery: 34.4 years (baseline)	QOLIE-89 QOLIE-31 SF-36 HUI-III GHQ	Surgery: 38 % SF No surgery: 3 % SF	More surgery group had meaningful improvement in QOL than nonsurgery group. No surgery group had worsening of QOL at follow-ups	Pre-surgery, 6 and 12 months
17. Taft et al. [10]	Temporal lobectomy (n = 80) Frontal lobectomy (n = 12) Parietal lobectomy (n = 1) Multilobe resection (n = 1) Hemispherectomy (n = 1) Multiple subpial transection (n = 1)	96 surgery 45 no surgery	Not reported	Not reported	Surgery: Median 33 years No surgery: Median 33 years (baseline)	SF-36 Seizure freedom HADS Surgery satisfaction	Surgery: 55 % SF No surgery: 11 % SF (ILAE classification)	QOL scores of SF surgery group reached norm at follow-up except in social functioning No change in not SF groups	Pre-surgery and average 2 years follow-up

1. Abbreviations: AEDs antiepileptic drugs, BDI Beck Depression Inventory, BPRS Brief Psychiatric Rating Scale, DCS-R Diagnostikum für Zerebralschädigung revised (visual memory test), ESI-55 Epilepsy Surgery Inventory-55, GDS Geriatric Depression Scale, GHQ General Health Questionnaire, HADS Hospital Anxiety and Depression Scale, HDRS Hamilton Depression Rating Scale, HRQOL health-related quality of life, HUI-III The Health Utilities Index-III, KAS Katz Adjustment Scale, MOQ Memory Observation Questionnaire, POMS Profile of Mood State, QOL quality of life, QOLIE-89, QOLIE-10, QOLIE-31, QOLIE AD-48 Quality of Life in Epilepsy, SF seizure free or seizure freedom, SF-36 The Medical Outcomes Study Short Form, STAI State Trait Anxiety Inventory, VMLT Verbaler Lern und Merkfähigkeitstest (verbal learning test), WMS Wechsler Memory Scale, WHOQOL-BREF-26 World Health Organization Quality of Life-BREF-26

Appendix 12.2. Summary of Study Characteristics and Results from Noncontrolled Studies of Quality of Life after Epilepsy Surgery in adults

Authors	Surgical procedure	Sample size	Age at onset	Age at surgery	Study age	Outcomes measures	Seizure outcome	Summary of results	Follow-up interval
1. Rose et al. [44]	Temporal lobectomy	47	11.5 years	Not reported	32 years (baseline)	ESI-55 Seizure outcome	44 % SF (Vickrey et al. [7])	Preoperative QOL more predictive of postoperative QOL than seizure outcome Greatest improvement seen in low or medium preoperative QOL scores High preoperative QOL scores did not see the same improvement, but scores remained high postoperatively	Pre-surgery, 1 or 2 years
2. Malmgren et al. [31]	Temporal lobectomy (n = 73) Extratemporal lobectomy (n = 25) Other (n = 5)	103	10.9 years	27.9 years	32.1 years (follow-up)	SF-36 HADS Seizure outcome Single item QOL scale (Aaronson et al., 1992)	46 % SF (no seizures or only auras)	QOL is scored as a continuum in relation to seizure frequency; scores improve with decreased seizure frequency Seizure severity follows the same pattern	Pre-surgery, Average 4 years
3. Selai et al. [32]	Temporal lobectomy (n = 20) Extratemporal lobectomy (n = 5)	22	9.6 years	Not reported	32.8 years	QOLAS ESI-55 EQ-5D	100 % > 75 % reduction in seizures	QOL scores improved at 1 year follow-up	Pre-surgery, Average 1 year
4. Maganti et al. [42]	Anterior temporal lobectomy	27	25 years	43.8 years	Not reported	QOLIE-31 Seizure outcome Employment	67 % SF (Engle classification)	Postop seizure outcome for US veterans was consistent with outcome seen in general population Better post-surgery seizure outcomes had higher QOL scores Employment outcome was better with good seizure outcome	2–13 years
5. Reid et al. [33]	Anterior temporal lobectomy (n = 32) Amydalohippocampectomy (n = 16) Temporal lesionectomy (n = 13) Extratemporal lesionectomy (n = 3) Other (n = 3)	67	11.2 years	Median 29 years	41.4 years	Overall QOL Overall health Impact of epilepsy AEDs Seizure frequency Surgery satisfaction Stigma Mastery Anxiety Self-esteem Depression Affect balance Employment or education HRQOL model (Baker et al. [47])	44.8 % SF	Significantly more SF participants were employed and had a driver’s license after surgery SF reported better QOL, psychological and psychosocial outcomes than those with continuous seizures	Average 10.3 years
6. Lowe et al. [39]	Temporal lobectomy	48	Not reported	42.7 years	Not reported	QOLIE-89 Seizure outcome AEDs	80 % SF (Engel classification)	Better seizure outcome had better QOL scores	Average 5.8 years
7. Cankurtaran et al. [38]	Anterior temporal lobectomy	22	10.5 years	30 years	Not reported	WHOQOL-BREF WHO-DAS-II SCID-I BPRS HDRS HARS	Not reported	Improvement seen in social domains of WHO-DAS-II postoperatively All participants were more satisfied with health post-surgery No significant difference found between pre- and postop general evaluation of QOL in WHOQOL-BREF	Pre-surgery, 3 and 6 months
8. Ahmad et al. [40]	Anterior temporal lobectomy w/subpial amygdalohippocampectomy and Lesionectomy (Numbers for each group not specified)	36	Not reported	Not reported	~25 years	QOLIE-31 Seizure outcome	77 % SF (Engel classification)	Improvement shown in all QOL domains in SF group and some domains (seizure worry, overall QOL, emotional wellbeing and social functioning) in not SF group Stronger score gains seen in SF	Pre-surgery and 6 months
9. Langfitt et al. [46]	Temporal lobectomy	138	14.9 years	Not reported	39.5 years (baseline)	QOLIE-89 Seizure control CVLT (verbal memory)	56 % SF at 2 and 5 year 26 % SF at 2 or 5 year	Improved QOL in SF group despite memory decline QOL declined when not SF was accompanied by memory decline and remained stable when there was no memory decline No relationship between cognition and QOL	Pre-surgery, Average 2 and 5 years
10. Tanriverdi et al. [43]	Selective Amygdalohippocampectomy (n = 33) Cortico-amygdalahippocampectomy (n = 20) Lesionectomy Temporal lobe (n = 10)	63	7.1 years	33.8 years	34.4 years	QOLIE-10 Seizure outcome AEDs Employment	70.8 % SF (Engel classification)	Improvement in QOL was seen regardless of seizure outcome after surgery SF had high ratings of QOL than those who continued to have seizures Better QOL when AEDs were reduced or discontinued	Pre-surgery, 6 months, 2 years, and 12 years
11. Buschmann et al. [34]	Extratemporal resection	21	Not reported	Not reported	32.3 years	SHE Seizure outcome BDI Neuropsychological evaluation	52.4 % SF (Engel classification)	QOL improved after surgery regardless of seizure outcome No relationship between QOL and neuropsychological test performance	Pre-surgery and 1 year
12. Cunha and Oliveira [41]	Temporal lobectomy	32	Not reported	Not reported	41.4 years	QOLIE-31 Seizure outcome SCL-90	62.5 % SF (Engel classification)	QOL improved after surgery regardless of seizure outcome. More significant gains seen in SF group than those who continued to have seizures.	Pre-surgery, 1, 3 and 6 months and annually for 1–5 years
13. Elsharkawy et al. [35]	Extratemporal resection	87	13.9 years	30.1 years	37.3 years (follow-up).	QOLIE-31 Seizure outcome AEDs Employment Driving Psychiatric treatment Medical comorbidities	51.7 % SF	Seizure freedom was the most powerful predictor of QOL; SF was associated with higher QOL ratings Medical comorbidities were the second most important predictor of QOL	Average 7.2 years
14. Mohammed et al. [36]	Temporal resection (n = 60) Extratemporal resection (n = 24) Hemispherectomy (n = 8) Callosotomy (n = 6) More than 1 surgery type (n = 71)	117	9.1 years	21 years	Not reported	QOLIE-31 Seizure outcome	48 % SF (Engel classification)	The majority reported improvement in quality of life after surgery Postoperative SF was associated with better QOL	Average 26 years
15. Schramm et al. [37]	Hemispherectomy	27	Median 5 years	Median 30 years	Not reported	German version based on ESI-55; 17 item version (Von Lehe et al. [48]) German -Functional status Seizure outcome Morbidity	81 % SF (ILAE classification)	QOL scores improved after surgery.	Median 9.6 years Minimum follow-up 1 year

1. Abbreviations: AEDs antiepileptic drugs, BDI Beck Depression Inventory, CVLT California Verbal Learning Test, ESI-55 Epilepsy Surgery Inventory-55, EQ-5D EuroQol EQ-5D, HADS Hospital Anxiety and Depression Scale, HARS Hamilton Anxiety Rating Scale, HDRS Hamilton Depression Rating Scale, HRQOL health-related quality of life, QOL quality of life, QOLAS Quality of Life Assessment Schedule, QOLIE-89, QOLIE-10, QOLIE-31 Quality of Life in Epilepsy, SCID-I Structured Clinical Interview for DSM Disorders I, SF seizure free or seizure freedom, SF-36 the Medical Outcomes Study Short Form, SHE Subjective Handicap of Epilepsy, WHO-DAS II World Health Organization Disability Assessment Schedule, WHOQOL-BREF-26 World Health Organization Quality of Life-BREF-26