deep brain stimulation - the movement disorder …...- individual expected improvement after dbs -...

Deep Brain Stimulation

Patient and caregiver education

Valeacuterie Fraix MD PhD and Emmanuelle Schmitt

Neurology Department Grenoble-Alpes University Hospital

Grenoble-Alpes University INSERM U1216

F-38000 Grenoble France

Contents

1) Introduction

2) Background

3) Therapeutic Patient Education (TPE) objective and principles

4) PARKEDUSTIM a TPE program for DBS patients

5) Results

Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble

6) Expectations and Conclusion

Introduction


Neurosurgery in Parkinsons disease the doctor is happy the patient less so Agid Y1 Schuumlpbach M Gargiulo M Mallet L Houeto JL Behar C Maltecircte D Mesnage V Welter ML

lsquoDespite the overall excellent outcome of neurosurgery in patients with Parkinsons disease there is often a contrast between the improvement in motor disability and the difficulties of patients to reintegrate a normal lifersquo lsquoTo avoid such socio-familial maladjustment we strongly suggest taking into consideration the patients psychological and social context before the operation and during the post-operative follow-uprsquo

Agid 2006

Introduction


77 confirmed motor improvement but some difficulties remainedhellip

Dysarthria gait cognitive impairment fine gesture weight gain DBS systems

22 PD patients treated with STN DBS for 2 ans

5 centers (Grenoble Toulouse Clermont-Ferrand Bordeaux et Marseille)

Age 607 plusmn 86 years (41 men) disease duration 165 plusmn 69 years

A multicenter survey

lsquo My main disappointment concerns speech difficulties my son never call mersquo

lsquo I thought I would always be on top even though PD would still be present lsquo

lsquo I thought I could go back to workrsquo

lsquo It took more than 6 months to find the right settingsrsquo

Background


Patients with DBS

- Have difficulties to project themselves in the future with DBS

- Lack information on the effects of DBS on PD symptoms

- Have difficulties coping with DBS side effects or lack of effect on PD symptoms


Background


rarr Mismatch between patient expectations and postoperative outcome

- Individual expected improvement after DBS

- How to manage a worsening in PD symptoms and side effects of DBS

- Precautions and contra-indications associated with DBS systems

- Reasons of the need of long-term follow-up

- Principles of electrical settings and medical treatment adjustments

Patients expectations

lsquo What would you like to learn about DBS rsquo

lsquo Today what would you like to live better with DBSrsquo

Background


Therapeutic Patient Education


- Is a multidisciplinary approach

- Is provided by trained health professionals and expert patients

Contributes to help patients better live with chronic disease (WHO 1998)

Objectives

- Help the patient to develop self-care skills to manage PD with DBS

- Help the patient to develop coping skills to better live with PD and DBS

The PARKEDUSTIM project


A TPE program developped to help PD patients amp caregivers to better live with DBS

rarr Improve patient amp caregiver quality of life

Carte

France 5

centres Clermont-Ferrand

Marseille

Toulouse

Bordeaux Grenoble


- Detect and understand a worsening in PD

- Change DBS electrical settings if PD worsening is associated with DBS

- Ask caregivers for help in managing PD

- Put in place complementary therapeutic strategies (physical activity nutritionhellip)


Self-care skills

Intercurrent medical problem

Neurostimulator dysfunction

Check impedances

If elevated

X-Ray

Check stimulation

ON

Check neurostimulator

battery life

If low or EOS change battery

Poor compliance to dopaminergic treatment

Progressive

Unilateral

Increase voltage

Bilateral

Optimize dopaminergic

treatment

Tremorakinesiarigidity worsening

AcuteRapid


- Develop self-confidence

- Manage with stress

- Develop self-assessment of symptoms

- Define therapeutic objectives

- Solve problems and make decisions


Coping skills


The PARKEDUSTIM program



Workshops

- DBS selection process

- DBS effects and side effects

- DBS systems

- Neurosurgical procedure

- Physical psychological and nutrition preparation before DBS

- Social issues



During DBS selection process

Groups of 6 - 12 patients + caregivers

One-day session

Objectives

- Help the caregiver to understand DBS effects and side effects

- Help the caregiver to clarify hisher own expectations of DBS

- Helps the caregiver to share hisher life experience with PD



A workshop for caregivers

Led by a neuropsychologist and a PD Nurse

- Expert patients have been trained by France Parkinson Association

- Health professional are no present

- Listening empathy DBS experience sharing tips and tricks



A workshop for patients by patients

Peer to peerhellip



Objectives

- DBS systems presentation

- Help the patient to imagine hisher body with the implanted DBS system

- Help the patient to understand the effects of DBS on PD symptoms

D-day what will happen to the brain



D-day the hair is cut Before surgery

Before PD With PD

With DBS



Fluctuations Stage

Play mat 3 card sets (motor non motor and behavioural symptoms)



Objectives

- Help the patient to understand and clarify hisher expectations on DBS

- Before and 12 months after surgery

pions



3 cursors trays

3 cursors trays







38 photographs to classify according to the risk



Objectives

- Help the patient to identify at risk daily life situations

- Help the patient to develop security skills (competencies) with DBS

- In the immediate postoperative period and later on





Patients and caregivers participation

0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points

- Patients and caregivers are globally satisfied

- Patients and expert patients can share their own experience of life with DBS

- Caregivers are actively involved in the TPE program



Expectations and conclusion

What else for the future

- Need to develop tools to assess the long-term effects of the TPE program

- Time consuming activity (400 hoursyear45 patients)

- On going tools diffusion to other european countries

Contents

1) Introduction

2) Background

3) Therapeutic Patient Education (TPE) objective and principles

4) PARKEDUSTIM a TPE program for DBS patients

5) Results


6) Expectations and Conclusion

Introduction




Agid 2006

Introduction












Background


Patients with DBS





Background











Background







Objectives







Carte

France 5


Marseille

Toulouse

Bordeaux Grenoble







Self-care skills



Check impedances

If elevated

X-Ray

Check stimulation

ON


battery life



Progressive

Unilateral

Increase voltage

Bilateral


treatment


AcuteRapid








Coping skills





Workshops



- DBS systems



- Social issues





One-day session

Objectives














Peer to peerhellip



Objectives








Before PD With PD

With DBS



Fluctuations Stage




Objectives



pions



3 cursors trays

3 cursors trays










Objectives









0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points











Introduction




Agid 2006

Introduction












Background


Patients with DBS





Background











Background







Objectives







Carte

France 5


Marseille

Toulouse

Bordeaux Grenoble







Self-care skills



Check impedances

If elevated

X-Ray

Check stimulation

ON


battery life



Progressive

Unilateral

Increase voltage

Bilateral


treatment


AcuteRapid








Coping skills





Workshops



- DBS systems



- Social issues





One-day session

Objectives














Peer to peerhellip



Objectives








Before PD With PD

With DBS



Fluctuations Stage




Objectives



pions



3 cursors trays

3 cursors trays










Objectives









0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points











Introduction












Background


Patients with DBS





Background











Background







Objectives







Carte

France 5


Marseille

Toulouse

Bordeaux Grenoble







Self-care skills



Check impedances

If elevated

X-Ray

Check stimulation

ON


battery life



Progressive

Unilateral

Increase voltage

Bilateral


treatment


AcuteRapid








Coping skills





Workshops



- DBS systems



- Social issues





One-day session

Objectives














Peer to peerhellip



Objectives








Before PD With PD

With DBS



Fluctuations Stage




Objectives



pions



3 cursors trays

3 cursors trays










Objectives









0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points





















Background


Patients with DBS





Background











Background







Objectives







Carte

France 5


Marseille

Toulouse

Bordeaux Grenoble







Self-care skills



Check impedances

If elevated

X-Ray

Check stimulation

ON


battery life



Progressive

Unilateral

Increase voltage

Bilateral


treatment


AcuteRapid








Coping skills





Workshops



- DBS systems



- Social issues





One-day session

Objectives














Peer to peerhellip



Objectives








Before PD With PD

With DBS



Fluctuations Stage




Objectives



pions



3 cursors trays

3 cursors trays










Objectives









0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points











Patients with DBS





Background











Background







Objectives







Carte

France 5


Marseille

Toulouse

Bordeaux Grenoble







Self-care skills



Check impedances

If elevated

X-Ray

Check stimulation

ON


battery life



Progressive

Unilateral

Increase voltage

Bilateral


treatment


AcuteRapid








Coping skills





Workshops



- DBS systems



- Social issues





One-day session

Objectives














Peer to peerhellip



Objectives








Before PD With PD

With DBS



Fluctuations Stage




Objectives



pions



3 cursors trays

3 cursors trays










Objectives









0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points



















Background







Objectives







Carte

France 5


Marseille

Toulouse

Bordeaux Grenoble







Self-care skills



Check impedances

If elevated

X-Ray

Check stimulation

ON


battery life



Progressive

Unilateral

Increase voltage

Bilateral


treatment


AcuteRapid








Coping skills





Workshops



- DBS systems



- Social issues





One-day session

Objectives














Peer to peerhellip



Objectives








Before PD With PD

With DBS



Fluctuations Stage




Objectives



pions



3 cursors trays

3 cursors trays










Objectives









0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points
















Objectives







Carte

France 5


Marseille

Toulouse

Bordeaux Grenoble







Self-care skills



Check impedances

If elevated

X-Ray

Check stimulation

ON


battery life



Progressive

Unilateral

Increase voltage

Bilateral


treatment


AcuteRapid








Coping skills





Workshops



- DBS systems



- Social issues





One-day session

Objectives














Peer to peerhellip



Objectives








Before PD With PD

With DBS



Fluctuations Stage




Objectives



pions



3 cursors trays

3 cursors trays










Objectives









0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points

















Self-care skills



Check impedances

If elevated

X-Ray

Check stimulation

ON


battery life



Progressive

Unilateral

Increase voltage

Bilateral


treatment


AcuteRapid








Coping skills





Workshops



- DBS systems



- Social issues





One-day session

Objectives














Peer to peerhellip



Objectives








Before PD With PD

With DBS



Fluctuations Stage




Objectives



pions



3 cursors trays

3 cursors trays










Objectives









0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points


















Coping skills





Workshops



- DBS systems



- Social issues





One-day session

Objectives














Peer to peerhellip



Objectives








Before PD With PD

With DBS



Fluctuations Stage




Objectives



pions



3 cursors trays

3 cursors trays










Objectives









0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points















Workshops



- DBS systems



- Social issues





One-day session

Objectives














Peer to peerhellip



Objectives








Before PD With PD

With DBS



Fluctuations Stage




Objectives



pions



3 cursors trays

3 cursors trays










Objectives









0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points











Objectives














Peer to peerhellip



Objectives








Before PD With PD

With DBS



Fluctuations Stage




Objectives



pions



3 cursors trays

3 cursors trays










Objectives









0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points

















Peer to peerhellip



Objectives








Before PD With PD

With DBS



Fluctuations Stage




Objectives



pions



3 cursors trays

3 cursors trays










Objectives









0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points













Objectives








Before PD With PD

With DBS



Fluctuations Stage




Objectives



pions



3 cursors trays

3 cursors trays










Objectives









0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points















Before PD With PD

With DBS



Fluctuations Stage




Objectives



pions



3 cursors trays

3 cursors trays










Objectives









0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points














Objectives



pions



3 cursors trays

3 cursors trays










Objectives









0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points











pions



3 cursors trays

3 cursors trays










Objectives









0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points




















Objectives









0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points
















0

20

40

60

80

100

120

140

nov-13 2014 2015 2016 jun-17

DBS Patients

Caregivers

Patients

The positive points











The positive points











deep brain stimulation - the movement disorder …...- individual expected improvement after dbs -...

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