Briefing

Patient education is a critical component of comprehensive movement disorder care.  The Consortium Coordinating Center is eager to assist all Centers in obtaining and distributing materials offered by the national non-profit community.  Simply complete the Resource Request form located on the Consortium website (http://www.parkinsons.va.gov/Consortium/ ResourceRequestFormPrint.asp) and fax or email to Dawn McHale.  Clinicians can also utilize the Education and Clinical Resource page on the website to access other valuable documents, including Suggested Education Essentials for Newly Diagnosed Veterans with Parkinson’s Disease (http://www.parkinsons.va.gov/ Consortium/Education.asp).  Please share additional ideas and concepts for national initiatives with the PADRECC Education Subcommittee (send to Gretchen.Glenn@va.gov).

Prepared by: Dr. Meredith Spindler and Heidi Watson, RN Philadelphia PADRECC

PD nurses teach patients to prepare for DBS surgery

Deep Brain Stimulation (DBS) is a surgical treatment for Parkinson's disease and when successful can provide better symptom relief than medication management alone. Neuroscience nurses are the primary educators preparing patients and their families for DBS however, the content and methods of the education provided has not been standardized. The San Francisco VA PADRECC surveyed how 19 educators (16 nurses) performed DBS education. The survey asked 23 questions on preoperative and postoperative DBS education regarding: 1. who does the teaching, 2. inclusion of family/caretakers, 3. Method (in person, telephone) 4. time of delivery, 5. identification of patient anxiety and how it is addressed. The study determined that approximately 90% of the educators teach more than half of the same material and 90% of the education included family members or caregivers in the preoperative teaching which addressed the caregivers intraoperative and postoperative role. Results also showed that 95% of the educators used in person methods (and various other methods: telephone, mail or written) to deliver the material and 80% gave the patient as much time as needed for education. In addition, 47% provided the teaching without a set schedule, whereas 32% provided it in the days to week prior to surgery. Overall, the educators felt that 'face to face' education and 'taking the time' with the patient and the caregiver was the most effective technique for teaching. In addition, the nurses determined that the key content material included: ' placement of the head frame, NPO status, communication with the waiting family and realistic expectations of the outcome'. Ultimately, more research is needed to gain the patient and caregiver perspective on the effectiveness of this education.

Journal of Neuroscience Nursing. 2011February;43 (1) pp E1-E7; "What are the neuroscience nurses teaching Parkinson's patients and families before deep brain stimulation".

Modulation of gait coordination by subthalamic stimulation improves freezing of gait. This study tests the hypothesis that symmetry of lower extremity motor symptoms affects interlimb coordination and thus off freezing of gait (FOG), and that this symmetry can be modified using subthalamic deep brain stimulation (STN-DBS). Twenty-two PD patients with STN-DBS, 13 of whom had FOG while off meds and off stimulation, were studied. Outcome measures were assessed in the off-medication state at 4 different stimulator settings: stimulation off, stimulation on with pre-existing parameters, stimulation on with 50% lower amplitude contralateral to the more-affected limb (worse-side reduction, WSR), and stimulation on with 50% lower amplitude contralateral to the less affected limb (better-side reduction, BSR). The primary end-point was the summed duration of FOG episodes, and bilateral coordination of gait was also assessed as the phase coordination index (PCI), which increased as limb coordination worsened. Further details on how gait analysis was used to measure these parameters are in the article. BSR, which should increase symmetry, resulted in reduced PCI, FOG frequency, and FOG duration, while WSR increased PCI and duration of FOG episodes. The authors concluded that impaired gait coordination is “strongly associated” with FOG, and that STN-DBS can improve or worsen FOG by modulating gait coordination. Study limitations include that it did not assess FOG during gait initiation or turning, thus the results may not apply to these common precipitants of FOG; and measurements were performed with the subjects walking on a treadmill with constant velocity, which may also reduce relevance to normal walking. The article has accompanying videos of one subject in the 4 stimulation conditions.

Mov Disord. 2011 Mar 2, E-pub ahead of print

http://www.ncbi.nlm.nih.gov/pubmed/21370271

Modulation of gait coordination by subthalamic stimulation improves freezing of gait. This study tests the hypothesis that symmetry of lower extremity motor symptoms affects interlimb coordination and thus off freezing of gait (FOG), and that this symmetry can be modified using subthalamic deep brain stimulation (STN-DBS). Twenty-two PD patients with STN-DBS, 13 of whom had FOG while off meds and off stimulation, were studied. Outcome measures were assessed in the off-medication state at 4 different stimulator settings: stimulation off, stimulation on with pre-existing parameters, stimulation on with 50% lower amplitude contralateral to the more-affected limb (worse-side reduction, WSR), and stimulation on with 50% lower amplitude contralateral to the less affected limb (better-side reduction, BSR). The primary end-point was the summed duration of FOG episodes, and bilateral coordination of gait was also assessed as the phase coordination index (PCI), which increased as limb coordination worsened. Further details on how gait analysis was used to measure these parameters are in the article. BSR, which should increase symmetry, resulted in reduced PCI, FOG frequency, and FOG duration, while WSR increased PCI and duration of FOG episodes. The authors concluded that impaired gait coordination is “strongly associated” with FOG, and that STN-DBS can improve or worsen FOG by modulating gait coordination. Study limitations include that it did not assess FOG during gait initiation or turning, thus the results may not apply to these common precipitants of FOG; and measurements were performed with the subjects walking on a treadmill with constant velocity, which may also reduce relevance to normal walking. The article has accompanying videos of one subject in the 4 stimulation conditions.

Mov Disord. 2011 Mar 2, E-pub ahead of print

http://www.ncbi.nlm.nih.gov/pubmed/21370271

Dates to Remember

Committee Recap

 April 9-16, 2011

American Academy of Neurology

2011 Annual Meeting

Hawaii

www.aan.com/go/education/conferences/fall

May 12, 2011

Parkinson’s Disease Care Case Management

EES/PADRECC Audioconference

http://www.parkinsons.va.gov/

June 5-9, 2011

Movement Disorders Society

15^th International Congress of Parkinson’s Disease and Movement Disorders

Toronto, Canada

www.movementdisorders.org

 July 14, 2011

Advances in Gene Therapy

EES/PADRECC Audioconference

http://www.parkinsons.va.gov/

September 8, 2011

Neuroprotection and Parkinson’s Disease

EES/PADRECC Audioconference

http://www.parkinsons.va.gov/

Clinical Care Committee

·         Rotation of Committee Chair: Leadership for the clinical care committee rotates amongst the PADRECCs. San Francisco leads the committee for March and April. Next meeting is April 5^th, 2011.  Committee meets first Tuesday of the month at 12pm ET.

·         Standardize Clinical Care: Continues to discuss a variety of clinical issues, provide clinical support to the Consortium network, and work on measures to standardize clinical care across the PADRECC network.

• PD Handbook:  A smaller subcommittee will spearhead a project in 2011 to draft a handbook for the VHA (similar to a MS Handbook developed by MSCoE)  that addresses such things as definition of PD, purpose, authority and scope, system of care, population served, etc.

·         PADRECC Transmitter: PADRECC clinicians provide reviews of recent movement disorder publications that are included in the PADRECC Transmitter

Education Committee

• PADRECC/EES Movement Disorder Series: The FY 2011 series is currently underway. On March 10^th Dr. Daniel Weintraub presented "Impulse Control Disorders in Parkinson's Disease." Future dates in 2011 are: May 12, Jul 14, and Sep 8. These audio conference series will be archived on the www.parkinsons.va.gov website under the Movement Disorder Series tab.

·         Patient Education Video Project: Susan Heath (SF PADRECC) is working with EES and the education committee to develop a series of videos for patient education in FY2011. First taping will be held in March at the Philadelphia VAMC.

·         PADRECC Transmitter: The committee continues to assemble and distribute this e-newsletter every other month.

·         National Website: The committee is assisting in updating the National VA PADRECC/Consortium Website .

Spotlight on Philadelphia Consortium Centers:

Bronx, New York

Bronx, VAMC (Phone: 718-584-9000 x 5915)

Director: Ruth Walker, MD

Dr. Walker, MD published the following book:

Walker RH, editor (2010) The Differential Diagnosis of Chorea, pub. Oxford University Press, New York

Dr. Walker also edited the following article:

Movement Disorder Society website featured article: A 2010 Update on the 'Other' Choreic Disorders (Aug/Sept 2010)  www.movementdisorders.org

In addition, Dr. Walker published the following articles:

Dubielecka PM, Hwynn N, Sengun C, Lomas-Francis C, Singer  C, Fernandez  H, Walker  RH, Lee S (in press) Two McLeod patients with novel mutations in XK Journal of Neurological Sciences

Riccioppo Rodrigues GG, Walker RH, Bader B, Danek A, Brice A, Cazeneuve C, Russaouen O,  Lopes-Cendes I, Marques Jr W, Tumas V (in press) Clinical and genetic analysis of 29 Brazilian patients with Huntington’s disease-like phenotype Arquivos de Neuro-Psiquiatria

Velayos-Baeza A, Holinski-Feder E, Neitzel B, Bader B, Critchley EMR, Monaco AP, Danek A, Walker RH (in press) Chorea-acanthocytosis genotype in Critchley’s original Kentucky neuroacanthocytosis kindred Archives of Neurology 

Walterfang M, Looi JCL, Styner M, Danek A, Neithammer M, Walker RH, Evans A, Kotschet K, Riccioppo Rodrigues GG; Hughes A, Dennis Velakoulis D (in press) Shape alterations in the striatum in chorea-acanthocytosis Psychiatry Research: Neuroimaging

Walterfang M, Evans A, Looi JCL, Jung HH, Danek A, Walker RH, Velakoulis D (2011) The neuropsychiatry of neuroacanthocytosis syndromes Neuroscience & Biobehavioral Reviews 35:1275-1283

Suzuki A, Stern SA, Bozdagi O, Huntley GW, Walker RH, Magistretti PJ, Alberini CM (2011) The astrocyte-neuron lactate-shuttle is required for long-term memory formation Cell144:1-14

Bao L, Patel  J, Walker RH, Shashidharan P, Rice ME (2010)  Dysregulation of striatal dopamine release in a transgenic mouse model of dystonia Journal of Neurochemistry114:1781-1791

Walker RH, Davies G, Koch RJ, Haack, AK, Moore C, Meshul CK (2010) Effects of zona incerta lesions upon striatal neurochemistry and behavioural asymmetry in 6OHDA-lesioned rats Journal of Neuroscience Research 88(13):2964-75

The Bronx VA is holding their 8^th PD awareness day on May 6^th. For details please contact Dr. Ruth Walker at: 718-584-9000 x5915.

West Haven, Connecticut

VA Connecticut Healthcare System (Phone: 203-932-5711 x4724)

Director: Diana Richardson, MD

The VA Connecticut Healthcare System is holding a Parkinson's Disease Awareness Fair on March 28, 2011 and a Parkinson's Disease Symposium on April 2, 2011. If interested in learning more please contact the West Haven VA Department of Neurology at 203-932-5711 x4724.