Vilka risker tar patienten Malmgren Umeå...

What is the patient’s risk?

Kristina MalmgrenInstitute of Neuroscience and Physiology

Sahlgrenska Academyand Dept of Neurology

Sahlgrenska University HospitalGöteborg, Sweden

Outline Guiding principles

Complications and expected adverseevents

HRQoL after epilepsy surgery

Other comprehensive outcome aspects

What can we improve?

20/05/2015K Malmgren 3

Aims of epilepsy surgery

The aim of epilepsy surgery is to improvepatients’ quality of life through obtainingseizure freedom or a substantial reduction of the seizure burden without disabling sideeffects

Considerations

Positive

Seizure free or substantiallyimproved

Stop AEDs

Better HRQoL

Negative

Continuedseizures

Risk for complications

Foreseeableadverse effects

Guiding principles

Do good

Do no harmor at least:

Do as little harm as possible..

So what do patients want to know whenbeing 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?

Results865 therapeutic epilepsy surgeryprocedures performed 1996-2010Patient age 2 months to 69 years (median 24 years)444 male, 421 female3% (26/865) major complications7.5% (65/865) minor complications

Results

ChildrenProcedure No. Major

(%)Minor (%)

Temporal 122 3 (2.5) 2 (1.6)Frontal 69 3 (4.3) 3 (4.3)Hemisph. 40 0 3 (7.5)Parietal 28 1 (3.6) 3 (10.7)Callosot. 24 1 (4.2) 0Total 328 8 (2.4) 14 (4.3)

AdultsProcedure

No. Major (%)

Minor (%)

Temporal 401 3.0 9.7Frontal 73 1.4 9.6Occipital 17 5.9 5.9Parietal 16 12.5 12.5Multilobar 8 1 (12.5) 1 (12.5)Total 537 18 (3.4) 51 (9.5)

Complication rates for different surgical procedures

The risk for any complication increased significantly with age (OR 1.26 per 10-year interval, 95% CI 1.09-1.45)

Seizure worsening after surgeryNot much investigated!Retrospective single centre study276 patients with postoperative seizurerecurrence studiedSeizure worsening defined as:

– Higher seizure frequency than preoperatively– Worsening of GTCS– New-onset GTCS– New onset status epilepticus

11Sarkis et al 2012

Seizure worsening and predictorsMonthly 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

12Sarkis et al 2012

Complications vs expected adverseevents

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 afterTLR

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 yearsafter surgery

Göteborg longitudinal studyConsecutive patients have cognitive testing at baseline and 2 and 10 years after TLR

A control group of neurologically healthyindividuals have been tested at correspondingintervals

Analysis of data from 51 patients and 23 controls

15

Andersson-Roswall et al 2010, 2012

Long-term cognitive outcome after TLRVerbal IQA

50

75

100

125

150Verbal IQA

50

75

100

125

150Verbal IQA

50

75

100

125

150Performance IQB

50

75

100

125

150Performance IQB

50

75

100

125

150Performance IQB

50

75

100

125

150CD word list-WSa)C

0

100

200

300


0

100

200

300


0

100

200

300

400

CD word list-DRD

0

20

40

60

80

100CD word list-DRD

0

20

40

60

80

100CD word list-DRD

0

20

40

60

80

100CM paired ass.-IRE

0

10

20


0

10

20


0

10

20

30CM paired ass.-DRF

0

10

20


0

10

20


0

10

20

30

CM fam.objects.-IRG

0

10

20

30

BL 2Yrspost-op

10Yrspost-op

Adjb)

CM fam.objects.-IRG

0

10

20

30

BL 2Yrspost-op

10Yrspost-op

Adjb)

CM fam.objects.-IRG

0

10

20

30

BL 2Yrspost-op

10Yrspost-op

Adjb)

CM fam.objects.-DRH

0

10

20

30

BL 2Yrspost-op

10Yrspost-op

Adjb)

CM fam.objects.-DRH

0

10

20

30

BL 2Yrspost-op

10Yrspost-op

Adjb)

CM fam.objects.-DRH

0

10

20

30

BL 2Yrspost-op

10Yrspost-op

Adjb)

ROCF-DRI

0

10

20

30

40

BL 2Yrspost-op

10Yrspost-op

Adjb)

ROCF-DRI

0

10

20

30

40

BL 2Yrspost-op

10Yrspost-op

Adjb)

ROCF-DRI

0

10

20

30

40

BL 2Yrspost-op

10Yrspost-op

Adjb)

DTL NDTL ControlHigher score = lower performancea)

Adjusted means with 95% CI from Mixed Model with baseline, time and interaction baseline*time included in the model.b)

MedianMean

Andersson-Roswall et al Neurology 2010

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 declineand vocational outcome 10 years after surgery

Andersson-Roswall et al 2010

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

Correlating visual field defect after TLR to injury of visual pathways

TLR may give rise to some degree of quadrantanopia, which in a few patients may precludedriving

Can this be avoided using tractography?

© 2014 American Academy of Neurology. Published by American Academy of Neurology. 2

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):604‐611, August 12, 2014.DOI: 10.1212/WNL.0000000000000685

Intraoperative use of tractography ofoptic radiation

What do patients want to know whenbeing counselled about epilepsy surgery?



If I become seizure free, will I remain seizure free?




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 memorydecline

In patients whose seizures don’t improve, HRQoLhas been shown to remain stable if they don’t havememory decline

In patients whose seizures don’t improve, HRQoLhas been shown to worsen if they have memorydecline

Wiebe et al 2001, Seiam et al 2011, Spencer et al 2007, Langfitt et al 2007, Taft et al 2014

What do patients want to know whenbeing counselled about epilepsy surgery?



If I become seizure free, will I remain seizure free?




ContentsChapters on outcomes in adults and childrenafter 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

ContentsChapters on outcomes in adults and childrenafter 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

Reasonably satisfactory dataat least 5 years postoperatively

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

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

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

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

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

How can we help patients to a better life after epilepsy surgery?

We need to continue to study long‐term outcomes after epilepsy surgerycomprehensively

This knowledge will improve counseling and facilitate patients’ informed decisions and realistic expectations

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

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

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 complicationsand other adverse effects

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

20th and 21st January 2014E-Pilepsy Kick off meeting, Luxembourg

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

http://www.e-pilepsy.eu/

What can we improve II Increased and comprehensive knowledge about

short-and long-term outcomes after epilepsysurgery will enable us to give better information about possible gains and risks

As far as possible we should try to give individua-lised and realistic information on possible gainsand risks

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 vocationaloutcome and improve in HRQL

Detailed outcome knowledge – including risks for complications and other negative sideeffects - provides a basis for realistic preoperative patient counselling

Acknowledgements

All epilepsy surgery teams in Sweden

The steering committee of the Swedish National EplepsySurgery Register

Epilepsy treatments through the ages

Thank you for your attention!

Expelling of the evil spirit Trepanation Cauterisation Inhaling the fumes

from peonies

Vilka risker tar patienten Malmgren Umeå...

Documents

Transcript of Vilka risker tar patienten Malmgren Umeå...