Deep Brain Stimulation Patient and caregiver education Valérie 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 6) Expectations and Conclusion
Introduction Neurosurgery in Parkinson's disease: the doctor is happy, the patient less so? Agid Y 1, Schüpbach M, Gargiulo M, Mallet L, Houeto JL, Behar C, Maltête D, Mesnage V, Welter ML. Despite the overall excellent outcome of neurosurgery in patients with Parkinson's disease, there is often a contrast between the improvement in motor disability and the difficulties of patients to reintegrate a normal life. To 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-up. Agid, 2006
Introduction
Background A multicenter survey 22 PD patients treated with STN DBS for 2 ans, 5 centers (Grenoble, Toulouse, Clermont-Ferrand, Bordeaux et Marseille). Age : 60.7 ± 8.6 years (41% men), disease duration : 16.5 ± 6.9 years. 77% confirmed motor improvement but some difficulties remained Dysarthria, gait, cognitive impairment, fine gesture, weight gain, DBS systems My main disappointment concerns speech difficulties, my son never call me I thought I would always be on top even though PD would still be present I thought I could go back to work It took more than 6 months to find the right settings
Background A multicenter survey 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 Mismatch between patient expectations and postoperative outcome
Background Patients expectations What would you like to learn about DBS? Today, what would you like to live better with DBS? - 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
Therapeutic Patient Education Contributes to help patients better live with chronic disease (WHO, 1998) - Is a multidisciplinary approach - Is provided by trained health professionals and expert patients
The PARKEDUSTIM project A TPE program developped to help PD patients & caregivers to better live with DBS 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 Improve patient & caregiver quality of life Carte France 5 centres Clermont-Ferrand Bordeaux Grenoble Toulouse Marseille
The PARKEDUSTIM project Self-care skills - 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, nutrition ) Tremor/akinesia/rigidity worsening Acute/Rapid Progressive Intercurrent medical problem Neurostimulator dysfunction Poor compliance to dopaminergic treatment Unilateral Bilateral Check impedances Check stimulation ON Check neurostimulator battery life Increase voltage Optimize dopaminergic treatment If elevated: X-Ray If low or EOS: change battery
The PARKEDUSTIM project Coping skills - Develop self-confidence - Manage with stress - Develop self-assessment of symptoms - Define therapeutic objectives - Solve problems and make decisions
During DBS selection process Groups of 6-12 patients + caregivers One-day session Workshops : - DBS selection process, - DBS effects and side effects - DBS systems - Neurosurgical procedure - Physical, psychological and nutrition preparation before DBS - Social issues
A workshop for caregivers Led by a neuropsychologist and a PD Nurse Objectives: - Help the caregiver to understand DBS effects and side effects - Help the caregiver to clarify his/her own expectations of DBS - Helps the caregiver to share his/her life experience with PD
A workshop for patients by patients Peer to peer - Expert patients have been trained by France Parkinson Association - Health professional are no present - Listening, empathy, DBS experience sharing, tips and tricks
Objectives: - DBS systems presentation - Help the patient to imagine his/her body with the implanted DBS system - Help the patient to understand the effects of DBS on PD symptoms
Before surgery D-day: the hair is cut D-day: what will happen to the brain?
Before PD With PD Fluctuations Stage With DBS
Objectives: - Help the patient to understand and clarify his/her expectations on DBS - Before and 12 months after surgery Play mat 3 card sets (motor, non motor and behavioural symptoms)
3 cursors trays 3 cursors trays pions
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 38 photographs to classify according to the risk
Patients and caregivers participation 140 120 100 80 60 DBS Patients Caregivers Patients 40 20 0 nov-13 2014 2015 2016 jun-17
Expectations and conclusion 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 What else for the future? - Need to develop tools to assess the long-term effects of the TPE program - Time consuming activity (400 hours/year/45 patients) - On going tools diffusion to other european countries