What is the patient s risk?

Transcription

1 What is the patient s risk? Kristina Malmgren Institute of Neuroscience and Physiology Sahlgrenska Academy and Dept of Neurology Sahlgrenska University Hospital Göteborg, Sweden

2 Outline Guiding principles Complications and expected adverse events HRQoL after epilepsy surgery Other comprehensive outcome aspects What can we improve?

3 Aims of epilepsy surgery The aim of epilepsy surgery is to improve patients quality of life through obtaining seizure freedom or a substantial reduction of the seizure burden without disabling side effects 20/05/2015K Malmgren 3

4 Considerations Positive Seizure free or substantially improved Stop AEDs Better HRQoL Negative Continued seizures Risk for complications Foreseeable adverse effects

5 Guiding principles Do good Do no harm or at least: Do as little harm as possible..

6 So what do patients want to know when being counselled about epilepsy surgery? What is my chance of becoming seizure free - or at least better off? What is my risk of having a major complication? If I become seizure free, will I remain that way? Does that mean I am cured? Will I be able to taper the AEDs? Will I have a better life if I have surgery?

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8 Results 865 therapeutic epilepsy surgery procedures performed Patient age 2 months to 69 years (median 24 years) 444 male, 421 female 3% (26/865) major complications 7.5% (65/865) minor complications

9 Results Children Procedure No. Major (%) Minor (%) Temporal (2.5) 2 (1.6) Frontal 69 3 (4.3) 3 (4.3) Hemisph (7.5) Parietal 28 1 (3.6) 3 (10.7) Callosot (4.2) 0 Total (2.4) 14 (4.3) Adults Procedur e No. Major (%) Minor (%) Temporal Frontal Occipital Parietal Multilobar 8 1 (12.5) 1 (12.5) Total (3.4) 51 (9.5) Complication rates for different surgical procedures

10 The risk for any complication increased significantly with age (OR 1.26 per 10-year interval, 95% CI )

11 Seizure worsening after surgery Not much investigated! Retrospective single centre study 276 patients with postoperative seizure recurrence studied Seizure worsening defined as: Higher seizure frequency than preoperatively Worsening of GTCS New-onset GTCS New onset status epilepticus Sarkis et al

12 Seizure worsening and predictors Monthly average seizure worsening in 9,8% GTCS worsening in 8% New-onset GTCS in 1.4% New-onset status epilepticus in 2.2% Higher risk with XTLR compared to TLR and in patients with incomplete resections Sarkis et al

13 Complications vs expected adverse events Complications are unexpected, unwanted and uncommon Some adverse effects are expected: Some further impairment of verbal memory after left TLR Some degree of upper quadrant anopia after TLR

14 Cognitive outcome after TLR Further decline in verbal memory occurs in 30-40% of patients after left TLR Much less consistent findings after right TLR Considerable interindividual variability which is concealed in group analysis A few investigators have found progressive long-term memory deterioration up to 13 years after surgery

15 Göteborg longitudinal study Consecutive patients have cognitive testing at baseline and 2 and 10 years after TLR A control group of neurologically healthy individuals have been tested at corresponding intervals Analysis of data from 51 patients and 23 controls Andersson-Roswall et al 2010,

16 Long-term cognitive outcome after TLR A 150 Verbal IQ B 150 Performance IQ C 400 CD word list-wsa) a) D 100 CD word list-dr 50 E 30 CM paired ass.-ir 0 F 30 CM paired ass.-dr G 30 CM fam.objects.-ir 0 H 30 CM fam.objects.-dr I 40 0 ROCF-DR BL 2Yrs post-op 10Yrs post-op Adjb) 0 BL 2Yrs post-op 10Yrs post-op Adjb) 0 BL 2Yrs post-op 10Yrs post-op Adjb) Median Mean DTL NDTL Control a) Higher score = lower performance b) Adjusted means with 95% CI from Mixed Model with baseline, time and interaction baseline*time included in the model. Andersson-Roswall et al Neurology 2010

17 Summary of cognition after TLR Intellectual functions mainly stable or with improvements related to practice effects Verbal memory decline after left TLR in 30-40% In our studies no indications of long-term progression of verbal memory decline At the individual level some patients improve over time while some worsen No association between verbal memory decline and vocational outcome 10 years after surgery Andersson-Roswall et al 2010

18 Individually calculated risk of memory decline after TLR TLR is associated with a well-known risk of memory decline, but there is considerable individual variation In this study logistic regression models were used to examine the effects of a number of predictive factors. The models were shown to correctly identify ¾ of those with a high risk of significant postoperative decline The authors have continued to use the model to provide indivualised risk/gain assessments Baxendale et al 2006

19 Correlating visual field defect after TLR to injury of visual pathways TLR may give rise to some degree of quadrant anopia, which in a few patients may preclude driving Can this be avoided using tractography?

20 Preventing visual field deficits from neurosurgery. Winston, Gavin; Daga, Pankaj; MSc, PhD; White, Mark; Micallef, Caroline; Miserocchi, Anna; Mancini, Laura; Modat, Marc; Stretton, Jason; Sidhu, Meneka; MB, ChB; Symms, Mark; Lythgoe, David; Thornton, John; Yousry, Tarek; Ourselin, Sebastien; Duncan, John; McEvoy, Andrew Neurology. 83(7): , August 12, DOI: /WNL American Academy of Neurology. Published by American Academy of Neurology. 2

21 Intraoperative use of tractography of optic radiation

22 What do patients want to know when being counselled about epilepsy surgery? What is my chance of becoming seizure free - or at least better off? What is my risk of having a major complication? If I become seizure free, will I remain seizure free? Does that mean I am cured? Will I be able to taper the AEDs? Will I have a better life if I have surgery?

23 HRQoL after epilepsy surgery HRQoL improves after epilepsy surgery in patients who are seizure-free or who obtain 75% reduction in seizure frequency even if they have memory decline In patients whose seizures don t improve, HRQoL has been shown to remain stable if they don t have memory decline In patients whose seizures don t improve, HRQoL has been shown to worsen if they have memory decline Wiebe et al 2001, Seiam et al 2011, Spencer et al 2007, Langfitt et al 2007, Taft et al 2014

24 What do patients want to know when being counselled about epilepsy surgery? What is my chance of becoming seizure free - or at least better off? What is my risk of having a major complication? If I become seizure free, will I remain seizure free? Does that mean I am cured? Will I be able to taper the AEDs? Will I have a better life if I have surgery?

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26 Contents Chapters on outcomes in adults and children after epilepsy surgery: Seizure outcomes Cognitive outcomes Psychiatric outcomes Mortality Vocational and Educational outcomes, HRQoL and Psychosocial outcomes Subjective experiences Informed Consent Managing expectations Health Economics

27 Contents Chapters on outcomes in adults and children after epilepsy surgery: Seizure outcomes Reasonably satisfactory data Cognitive outcomes at least 5 years postoperatively Psychiatric outcomes Mortality Vocational and Educational outcomes HRQoL and Psychosocial outcomes Subjective experiences Informed Consent Managing expectations Health Economics

28 Contents Chapters on outcomes in adults and children after epilepsy surgery: Seizure outcomes Reasonably satisfactory data Cognitive outcomes at least 5 years postoperatively Psychiatric outcomes Mortality Vocational and Educational outcomes HRQoL and Psychosocial outcomes Subjective experiences Informed Consent Managing expectations Health Economics

29 Psychiatric outcomes Presurgical psychiatric history is a risk factor for postoperative morbidity Post-surgical depression and/or anxiety disorders are most frequent In most patients symtoms remit within a year No data on the long term psychiatric outcomes of epilepsy surgery patients Kanner in ed Malmgren et al 2015

30 Mortality Studies on mortality after epilepsy surgery are very heterogeneous Most studies report lower mortality among those seizure free versus those with recurrent seizures after surgery Further population based long-term studies of both seizure outcome and mortality are warranted. Tomson in ed Malmgren et al 2015

31 Subjective experiences The majority of patients report satisfaction after epilepsy surgery Patients with more practical expectations have been shown to be more likely to consider surgery a success. Adjustment to life after surgery, especially the need to discard the sick role for those who become seizure-free, has been shown to take several years. Malmgren in ed Malmgren et al 2015

32 Subjective experiences contd Studies of patient-perceived memory changes after TLR fail to show significant relationships between subjective and objective postoperative memory function. Perceived sexual changes after TLR include improvement in sexuality in those seizure-free but also hypersexuality in some. Malmgren in ed Malmgren et al 2015

33 Health economics The limited literature suggests that epilepsy surgery is more effective and cheaper than the medical treatment alternatives. Jetté in ed Malmgren et al 2015

34 How can we help patients to a better life after epilepsy surgery? We need to continue to study long term outcomes after epilepsy surgery comprehensively This knowledge will improve counseling and facilitate patients informed decisions and realistic expectations

35 Seizure freedom score (SFS) Four predictive outcome indicators: Preoperative seizure frequency (cut-off 20/mo) History of GTCS (yes/no) MRI findings (normal or abnormal) Duration of epilepsy (more or less than 5 years) SFS 0 if associated with poor outcome, SFS1 if associated with good outcome Study population of 466 operated persons Gracia et al Epilepsia 2015

36 Seizure freedom score (SFS) 10 years after epilepsy surgery: SFS 0: 36.9% of patients were seizure-free SFS 1: 45% of patients were seizure-free SFS 2: 60% of patients were seizure-free SFS 3 or above: 72% of patients were seizure-free Gracia et al Epilepsia 2015

37 What can we improve I Better selection of epilepsy surgery candidates Better localisation of seizure onset zone Smaller resections, better surgical precision Increased efforts to reduce complications and other adverse effects

38 What can we improve I We also need to reach the patients whose neurologists have not referred them, or who fear epilepsy surgery too much to wish to be referred The EU project E-Pilepsy will provide tools for improving access to epilepsy surgery across Europe

39 E-PILEPSY Grant context EAHC (European Agency for Health & Consumers) DG Sanco Title: A European pilot network of reference centres in refractory epilepsy and epilepsy surgery The primary expected outcome of E-PILEPSY is to increase the number and proportion of European children and adult patients cured from their refractory epilepsy, due to in Europe. Lead: Lyon Philippe Ryvlin Co-lead: UCL Helen Cross E-Pilepsy Kick off meeting, Luxembourg 20 th and 21 st January 2014

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41 What can we improve II Increased and comprehensive knowledge about short-and long-term outcomes after epilepsy surgery will enable us to give better information about possible gains and risks As far as possible we should try to give individualised and realistic information on possible gains and risks

42 What can we improve III We need to focus more on patients who are (or who risk being) disappointed after epilepsy surgery, irrespective of whether the reason is that they had poor outcome and/or complications or because their hopes were unrealistic We need to try to help patients to a better life after epilepsy surgery, e g with rehabilitation programs

43 Conclusions Seizure outcome is one of many outcome variables in epilepsy surgery It is important to individualise our aims in relation to patient needs and possibilities Seizure free patients to a large extent stop AED treatment, have a better vocational outcome and improve in HRQL Detailed outcome knowledge including risks for complications and other negative side effects - provides a basis for realistic preoperative patient counselling 43

44 Acknowledgements All epilepsy surgery teams in Sweden The steering committee of the Swedish National Eplepsy Surgery Register

45 Epilepsy treatments through the ages Expelling of the evil spirit Trepanation Cauterisation Inhaling the fumes from peonies Thank you for your attention!