The Team Approach: 

Caring for Elders with Parkinson's

Disease

Pamela Willson, PhD, RN, FNP, BC, CNEWednesday, October 10, 2012 Prairie View A&M University College of Nursing1-2 p.m. 12th floor Board Room

ObjectivesReview PD clinical featuresDescribe PD implications of managing

healthcare within federal healthcare system Integrate recent clinical data & evidence-based

strategies into treatment strategiesDescribe telehealth methods for improving PD

patients access to careDiscuss a chronic disease self-management

educational intervention

Parkinson Disease (PD)PD is the 2nd most common

neurodegerative disease40,000 – 59,000 new cases annually in the

USMore common in older individuals;

increases after age 601.5 million Americans

About 80,000 are Veterans

PD Classical Clinical FeaturesResting TremorCogwheel RigidityBradykinesiaPostural Instability

PD Associated Clinical FeaturesMicrographiaHypophoniaShuffling gait/festinationDrooling

DysphagiaDepressionAutonomic

dysfunctionDementia

Progressive Chronic DiseaseLoss of dopaminergic neurons

Classic movement abnormalities and tremor Rigidity and muscle stiffness – back & neck pain,

cramping, soreness and heaviness feelings of the muscles, inflexibility

Freezing or motor block – start hesitation, mid-motion, worsens with stress

Motor fluctuation – sudden wearing-off, dyskinesia, or no response to meds, dysarthria

Rigidity & incoordination of muscles – dysphagia, aspiration

Progressive Chronic DiseaseProgresses to a multicentric disorder

affecting many systemsNeuropsychiatric changes – depression,

hallucination, delirium, anxiety, panic attack, & agitation

Cognitive impairment – PD dementiaSleep disturbances – insomnia, REM behavior

disorder, sleep apnea, excessive daytime sleepiness, & sleep attack

Autonomic dysfunction – constipation, urinary problems, incontinence, orthostatic hypotension, & sexual dysfunction

Etiologies & Risk FactorsGenetic defects – 10% of cases

First-degree relative with PD – RR is 1.6 to 10.4

Environmental factors Pesticides, herbicides, & heavy metals

Rodent model Twin study – exposure to cleaning solvent

trichloroethylene; 6-fold increased risk Agent Orange – exposure to about 2.6 million

soldiers Living in a rural area Drinking well water

Department of Veterans Affairs (VA)PD added to list of presumed to be

service-related illness for veterans who served in combat in Vietnam

IOM evidence suggesting that exposure to Agent Orange & other herbicides may be a risk factor for PD

The policy provides treatment & disability assistance

Six PADRECCsParkinson’s Disease Research Education

and Clinical Centers (PADRECCs)Established in 2001Expanded to include 51 consortium

community care facilitiesGoal to improve the long term functional

outcome of veterans through innovative research, clinical care and educational programsModeled after the GRECC and MIRECC

PADRECC Resourceshttp://www.parkinsons.va.govPADRECC/Consortium Hotline at 1-800-

949-1001 x 5769 Resources & educational materials

PatientsProviders

Who’s on the Team?

Team Members Patient & Caregiver Primary Care Provider Neurologist Neurosurgeon Physical Medicine &

Rehabilitation Physical Therapist Occupational Therapist

Speech Pathologist Psychiatrist Psychologist Social Worker Pharmacist Neuroscience Nurse Educator

MEDVAMC Team

MEDVAMC Team

Aliya I. Sarwar, MD - Interim Director J. Gabriel Hou, MD,PhD - Associate Director of Research & Interim Co-Director Linda Fincher, BSN, RN - Assistant Clinical Director Pamela Willson, PhD, RN, FNP-BC, CNE - Associate Director of Education Shawna Johnson, BSN, RN - Clinical Care Coordinator  Michele York, PhD - Clinical Neuropsychologist Arnold (Herb) Love - Administrative Officer Farah Atassi, MD, MPH - Research Health Science Specialist Suzanne Moore, MS - Research Health Science Specialist

Managing the Complexities of Parkinson Disease: Practical Strategies for the Federal Healthcare Professional (U.S. Medicine, 2012)

1.0 CME – management of PD

Treatment Guidelines VA Algorithm for Treatment of Early PD

www.parkinsons.va.gov/cfiles/PocketCardFront.pdf

American Academy of Neurology (2006) Early & late-stage PD treatment

European Federation of Neurological Sciences & the United Kingdom’s National Institute for Health and Clinical Excellence (2006)

Canadian Neurological Sciences Federation (2012)

PADRECC OutcomesDoes a multidisciplinary treatment approach

improve PD patients functional outcomes? N= 43; No DBS or thalamotomy patients Average age 71.5; 31 white 12 African-American

Unified Parkinson’s Disease Rating Scale (UPDRS) on one year follow-up Overall, mean improvement of -5.4 30 patients (68.8%) improved by -11.28 points 2 unchanged; 11 (25.6%) worsened by 9.82 points

Diaz & Bronstein (2005) NeuroRehabilitation 20, 161-167

PADRECC Outcomes Team members seen and visit types:

Neurology physician – 2.84 visits (100%) Neurology nurse – 1.74 (88.4%) Medication change – 26 (60.5%) Referrals

Rehabilitation therapy were most common – 62.8% Neuropsychological testing – 41.9% Functional diagnostic testing – 16.3% Support group – 9.3%

Education Home exercise programs – 86% Health wellness – 83.7%

PD Assessment Measures Unified Parkinson’s Disease Rating Scale (UPDRS)

Measures clinical course of PD over time Subscales: mentation, behavior & mood; ADLs, & motor

skills Hoehn and Yahr

Scale classifies PD’s six stages – severity of disease 0= no involvement; 1=unilateral involvement only

through 5=confinement to bed or wheelchair

PDQ-39 Quality of Life; 39 items & 8 subscales

Mobility, ADL, emotional well-being, stigma, social support, cognitions, communication & bodily discomfort

Karon Cook, PhD, 2003

Physical TherapyPatients with a Hoehn & Yahr disability scale

score of 3 or higher (0-5 scale) Compromised postural righting reflexes Unable to recover balance on a pull test

Falls are a recurring problem; patient’s have difficulty walking sideways or backwards; gait is slow & shuffling Safety training; rearrange furniture; flexibility

exercise to improve axial mobility; cueing strategies

Elizabeth J. Protas, PT, PhD, FACSM, 2003

Model of Care for Physical & Occupational Therapy Task specific training regimes

Taught to do one thing at a time; avoid dual activities

Long movement sequences should be broken into steps; focus on learning one at a time

Exercise and activity training should be undertaken at peak medication dose

Begin therapies early in disease process: Preserve flexibility Prevent deconditioning Minimalize mental decline Find solutions to functional problems

Trail & Warkentin, 2003

Depression 50% of PD patients suffer from depression

Decreased energy & motivation; feelings of sadness, helplessness, hopelessness; changes in weight, sleep & appetite; irritability, & thoughts of suicide

May co-exist with cognitive decline symptoms Nonpharmacological strategies:

Walking, tai chi, yoga and water therapy Community education/support groups Behavioral/cognitive counseling of individuals or

familiesNaomi Nelson, PhD, 2003

Communicative NeedsMost eventually exhibit hypokinetic dysarthria

with associated respiratory, laryngeal, and articulatory dysfunction

Aim is to strengthen muscles involved with volume production & articulation

Augmentative communication devices – amplification systems for reduced loudness

Nonelectronic communication boards or notebooks or computers

Reevaluate with changing patient needsJean Whitehead, MA, CCC/SLP, 2003

Access to CareTelemedicine/Telehealth Is there a difference between office-based vs

home web-based clinical assessments for PD?Random crossover design; 42 PD patients were

evaluated at baseline and 6- & 12-weeks Correlation coefficient between web and office were:

0.67 (first visit) to 0.75 (last visit) Doctor vs patient scores of 0.81 & 0.82

No difference in responsiveness and data precision Fewer missing values for web-based assessments

Cubo, et al., 2012, Movement Disorder, 27(2),308-311.

Telehealth EducationUsefulness & usability of follow-up telehealth

medication counseling of community-based PD patients RCT for in-person, videophone, or telephone

standardized medication educational session – 20-30 minutes (N=75)

Patients were more satisfied with videophone equipment & counseling than telephone or in-person sessions Nurses found visualization via videophone significantly more useful for medication and self-management interactions

Telehealth has the potential to facilitate patient-provider communication and partnerships in chronic disease preventive health care

Fincher, Ward, Dawkins, Magee, & Willson, 2009, Jl of Gerontological Nursing, 35(2), 16-24.

Telehealth Increased AccessPilot RCT of telemedicine for PD

patients in a community settingTelemedicine vs usual care; 3 telemedicine

visits over 6-months (N=10)UPDRS motor subscale was improved (p =

0.03) relative to baseline for telehealth nursing home patients vs usual care patients

QOL PDQ-39 and patient satisfaction were higher for telemedicine patients

Implementation cost was low; about $250 per site

Dorsey, et al, 2010

Telehealth Access

Telehealth Access

Dorsey, et al, 2010

Telehealth Access

Dorsey, et al, 2010

Chronic Disease Self-Management Counseling (CDSM) Program

CDSM trainers (faculty & students) delivered workshops: Techniques to deal with problems such as

frustration, fatigue, pain and isolation Exercise for maintaining and improving strength,

flexibility, and endurance Medications Nutrition Communicating effectively with family, friends, and

health professionals

CDSM Program

Course ProductsStudents participated in CDSM patient

counseling in 6-week (2.5 hours per session) course

Students developed theory-based patient educational handouts for multiple chronic conditions (e.g., Parkinson’s Disease, Stroke, Diabetes, Heart Failure, Kidney Disease)

Theory AssignmentsSocial Cognitive TheoryTheory of Reasoned Action & Belief

ModelTranstheoretical Model of Behavior

ChangeHealth Promotion ModelLiterature search for Theoretical

underpinnings of CDSM

Evidence Based Practice StrategiesEvaluated an EB SM research article

Determining the evidence for patient SM support programs

Journal Club format for presentationSummative evaluation paper

Impact of SM intervention on Pt outcomesApply to Pt education & SM Experience as a facilitator & future practice

Students were highly motivated & engaged

Met course objectives

Demonstrated SM and clinical competencies

Student Reflective Evaluations“It [CDSM Program] took the mystery

out of action planning for me”

[Implementation of SM classes & clinical] “actually seeing the program in action cemented this skill in my brain…I will feel confident in using this skill in my practice”

Students Reflective Evaluations[I got to] “witnessed SM in action”

“This experience [CDSM Program] helped me see the big picture of holistic care”

[I] “appreciate the importance of formulating an action plan to motivate our patients to change behavior”

Patient Evaluation CDSM Program

Identify personal risk factorsUnderstand stroke

Stay on track managing risk factorsIncrease my physical activity

Complete my action planAppreciate relaxation exercisesSupport my self-management

Establish self-management at homeI direct my self management activities

My overall satisfacion with course

0 0.5 1 1.5 2 2.5 3 3.5 4 4.5 54.54.5

4.24.5

4.34.54.5

4.34.54.7

ConclusionsLinking two courses facilitated a higher

level demonstration of independent student skills and the use of National Guidelines in the management of complex patients

The Chronic Disease Self-Management course added to the students skill sets, demonstrating theoretical based (self-efficacy, health prevention) patient education methods & materials

Future ???CDSM program for patients with PDVideoconference delivery mode Pilot study:

The Chronic Disease Self-Management course for patients at Beaumont and Richmond Community Based Outreach Clinics (CBOCs)

Feasible, acceptable, improved patient QOL indices

Anderson, et al., 2012

SummaryMost patients with PD are older than 60 yearsAccess to specialty care improves patient

outcomes and quality of lifeThe specialty skills of a multidisciplinary team

improves patient carePD is a progressive chronic disease that needs

frequent monitoring as symptoms progress and fluctuate

Telemedicine/telehealth provides increased patient access and high patient satisfaction

Questions ?