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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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Background
A multicenter survey
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Therapeutic Patient Education
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
- 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- 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)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- Develop self-confidence
- Manage with stress
- Develop self-assessment of symptoms
- Define therapeutic objectives
- Solve problems and make decisions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Coping skills
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
A workshop for patients by patients
Peer to peerhellip
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
6) Expectations and Conclusion
Introduction
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Background
A multicenter survey
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Therapeutic Patient Education
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
- 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- 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)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- Develop self-confidence
- Manage with stress
- Develop self-assessment of symptoms
- Define therapeutic objectives
- Solve problems and make decisions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Coping skills
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
A workshop for patients by patients
Peer to peerhellip
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
Introduction
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Background
A multicenter survey
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Therapeutic Patient Education
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
- 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- 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)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- Develop self-confidence
- Manage with stress
- Develop self-assessment of symptoms
- Define therapeutic objectives
- Solve problems and make decisions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Coping skills
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
A workshop for patients by patients
Peer to peerhellip
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
Introduction
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Background
A multicenter survey
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Therapeutic Patient Education
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
- 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- 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)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- Develop self-confidence
- Manage with stress
- Develop self-assessment of symptoms
- Define therapeutic objectives
- Solve problems and make decisions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Coping skills
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
A workshop for patients by patients
Peer to peerhellip
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Background
A multicenter survey
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Therapeutic Patient Education
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
- 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- 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)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- Develop self-confidence
- Manage with stress
- Develop self-assessment of symptoms
- Define therapeutic objectives
- Solve problems and make decisions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Coping skills
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
A workshop for patients by patients
Peer to peerhellip
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Background
A multicenter survey
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Therapeutic Patient Education
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
- 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- 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)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- Develop self-confidence
- Manage with stress
- Develop self-assessment of symptoms
- Define therapeutic objectives
- Solve problems and make decisions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Coping skills
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
A workshop for patients by patients
Peer to peerhellip
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
- 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Therapeutic Patient Education
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
- 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- 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)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- Develop self-confidence
- Manage with stress
- Develop self-assessment of symptoms
- Define therapeutic objectives
- Solve problems and make decisions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Coping skills
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
A workshop for patients by patients
Peer to peerhellip
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
Therapeutic Patient Education
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
- 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- 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)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- Develop self-confidence
- Manage with stress
- Develop self-assessment of symptoms
- Define therapeutic objectives
- Solve problems and make decisions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Coping skills
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
A workshop for patients by patients
Peer to peerhellip
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- 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)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- Develop self-confidence
- Manage with stress
- Develop self-assessment of symptoms
- Define therapeutic objectives
- Solve problems and make decisions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Coping skills
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
A workshop for patients by patients
Peer to peerhellip
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
The PARKEDUSTIM project
- 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)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
The PARKEDUSTIM project
- Develop self-confidence
- Manage with stress
- Develop self-assessment of symptoms
- Define therapeutic objectives
- Solve problems and make decisions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Coping skills
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
A workshop for patients by patients
Peer to peerhellip
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
The PARKEDUSTIM project
- Develop self-confidence
- Manage with stress
- Develop self-assessment of symptoms
- Define therapeutic objectives
- Solve problems and make decisions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
Coping skills
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
A workshop for patients by patients
Peer to peerhellip
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
A workshop for patients by patients
Peer to peerhellip
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
A workshop for patients by patients
Peer to peerhellip
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
Workshops
- DBS selection process
- DBS effects and side effects
- DBS systems
- Neurosurgical procedure
- Physical psychological and nutrition preparation before DBS
- Social issues
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
A workshop for patients by patients
Peer to peerhellip
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
A workshop for patients by patients
Peer to peerhellip
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
- Expert patients have been trained by France Parkinson Association
- Health professional are no present
- Listening empathy DBS experience sharing tips and tricks
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
A workshop for patients by patients
Peer to peerhellip
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
D-day what will happen to the brain
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
D-day the hair is cut Before surgery
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
Before PD With PD
With DBS
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Fluctuations Stage
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
Play mat 3 card sets (motor non motor and behavioural symptoms)
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Objectives
- Help the patient to understand and clarify hisher expectations on DBS
- Before and 12 months after surgery
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
pions
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
3 cursors trays
3 cursors trays
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
38 photographs to classify according to the risk
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM program
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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
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
Valeacuterie Fraix amp Emmanuelle Schmitt - Grenoble
The PARKEDUSTIM 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