The Team Approach: Caring for Elders with Parkinson's Disease

1. 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 Nursing 1-2 p.m. 12th floor Board Room

2. Objectives Review PD clinical features Describe PD implications of managing healthcare within federal healthcare system Integrate recent clinical data & evidence-based strategies into treatment strategies Describe telehealth methods for improving PD patients access to care Discuss a chronic disease self-management educational intervention

4. Parkinson Disease (PD) • PD is the 2nd most common neurodegerative disease • 40,000 – 59,000 new cases annually in the US • More common in older individuals; increases after age 60 • 1.5 million Americans • About 80,000 are Veterans

6. PD Classical Clinical Features Resting Tremor Cogwheel Rigidity Bradykinesia Postural Instability

7. PD Associated Clinical Features Micrographia Hypophonia Shuffling gait/festination Drooling Dysphagia Depression Autonomic dysfunction Dementia

8. Progressive Chronic Disease • Loss 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

9. Progressive Chronic Disease • Progresses to a multicentric disorder affecting many systems • Neuropsychiatric changes – depression, hallucination, delirium, anxiety, panic attack, & agitation • Cognitive impairment – PD dementia • Sleep disturbances – insomnia, REM behavior disorder, sleep apnea, excessive daytime sleepiness, & sleep attack • Autonomic dysfunction – constipation, urinary problems, incontinence, orthostatic hypotension, & sexual dysfunction

10. Etiologies & Risk Factors • Genetic 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

11. 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

12. Six PADRECCs • Parkinson’s Disease Research Education and Clinical Centers (PADRECCs) • Established in 2001 • Expanded to include 51 consortium community care facilities • Goal to improve the long term functional outcome of veterans through innovative research, clinical care and educational programs • Modeled after the GRECC and MIRECC

14. PADRECC Resources • http://www.parkinsons.va.gov • PADRECC/Consortium Hotline at 1-800-949-1001 x 5769 • Resources & educational materials • Patients • Providers

15. Who’s on the Team?

16. 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

17. MEDVAMC Team

18. 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

19. Managing the Complexities of Parkinson Disease: Practical Strategies for the Federal Healthcare Professional (U.S. Medicine, 2012) 1.0 CME – management of PD

20. 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)

21. PADRECC Outcomes Diaz & Bronstein (2005) NeuroRehabilitation 20, 161-167 • Does 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

22. 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%

23. PD Assessment Measures Karon Cook, PhD, 2003 • 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

24. Physical Therapy Elizabeth J. Protas, PT, PhD, FACSM, 2003 • Patients 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

25. Model of Care for Physical & Occupational Therapy Trail & Warkentin, 2003 • 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

26. Depression Naomi Nelson, PhD, 2003 • 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 families

27. Communicative Needs Jean Whitehead, MA, CCC/SLP, 2003 Most 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 needs

28. Access to Care Cubo, et al., 2012, Movement Disorder, 27(2),308-311. • Telemedicine/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

29. Telehealth Education • Usefulness & 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.

30. Telehealth Increased Access Dorsey, et al, 2010 • Pilot RCT of telemedicine for PD patients in a community setting • Telemedicine 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

31. Telehealth Access

32. Telehealth Access Dorsey, et al, 2010

33. Telehealth Access Dorsey, et al, 2010

34. 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

35. CDSM Program

36. Course Products • Students 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)

37. Theory Assignments Social Cognitive Theory Theory of Reasoned Action & Belief Model Transtheoretical Model of Behavior Change Health Promotion Model Literature search for Theoretical underpinnings of CDSM

38. Evidence Based Practice Strategies • Evaluated an EB SM research article • Determining the evidence for patient SM support programs • Journal Club format for presentation • Summative evaluation paper • Impact of SM intervention on Pt outcomes • Apply to Pt education & SM • Experience as a facilitator & future practice

39. Students were highly motivated & engaged Met course objectives Demonstrated SM and clinical competencies

40. 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”

41. 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”

42. Patient Evaluation CDSM Program

43. Conclusions • Linking 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

44. Future ??? • CDSM program for patients with PD • Videoconference 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

45. Summary Most patients with PD are older than 60 years Access to specialty care improves patient outcomes and quality of life The specialty skills of a multidisciplinary team improves patient care PD is a progressive chronic disease that needs frequent monitoring as symptoms progress and fluctuate Telemedicine/telehealth provides increased patient access and high patient satisfaction

46. Questions ?