information - Association of Physiotherapists in Parkinson`s Disease
Transcription
information - Association of Physiotherapists in Parkinson`s Disease
11-7-2011 Welcome! Organisers and Chairs welcome & introduction Dr. Samyra Keus & Dr Marten Munneke Radboud University Nijmegen Medical Centre (RUNMC) PhD Thesis 2010 Where you’re from? North America? What’s your job? Patient Care ? Europe? Researcher? Asia? Africa? South America? South Pacific? 1 11-7-2011 What’s your PD experience? Why are you here today? To get the latest insights in Parkinson’s disease To get the latest advances of physiotherapy in Parkinson’s To get the latest advances of implementation of evidencebased physiotherapy in Parkinson’s disease Beginner? Skilled? Block 1 – Parkinson’s disease Block 2 – Interventions 11.30-12.50hr 09.50-11.00hr Prof. Bastiaan Bloem Parkinson’s disease and medical treatment Prof. Meg Morris Impairments, activity, participation and QOL Prof. Margaret Mak (Fear of) falls Lunch - networking Prof. Alice Nieuwboer Festination and freezing Dr. Erwin van Wegen Understanding the mechanisms of cueing Dr. Yvo Kamsma Use of cognitive movement strategies Prof. Lynn Rochester Motor learning in PD Block 3 – Interventions 13.50-14.50hr Ann Ashburn Use of falls diaries in clinical practice Victoria Goodwin Exercise to alleviate falling Lee Dibble High force resistance training 2 11-7-2011 Block 4 – Future 15.20-17.00hr....17.30hr Gert Kwakkel Future perspectives of research Maarten Nijkrake ParkinsonNet Mark Hirsch Peer treatment Samyra Keus European guidelines Marten Munneke Panel discussion & take home messages 3 13-7-2011 Mission impossible ... Medical management of Parkinson’ss disease: Parkinson disease: an update Professor Bastiaan R. Bloem Parkinson Center Nijmegen (ParC) Radboud University Nijmegen Medical Center Classical Parkinson’s disease An expanding p g phenotype A complex disease NOT the cause of ALL symptoms! Motor symptoms & signs Additional symptoms & signs Langston, Ann Neurol 2006;59:591‐596 1 13-7-2011 Widespread lesions! Important example Falls are common in dementias Parkinson’s disease is (also? mainly?) a neuropsychiatric disorder Results Dual task problems (?) 2 13-7-2011 Cueing and dual tasking in PD Finding in freezers Nanhoe‐Mahabier et al., submitted Nanhoe‐Mahabier et al., submitted Who is this? The preclinical p phase What about this? Neurology 2001,57:456-462 3 13-7-2011 Parkinson SYNDROME Diagnosing Parkinson’s disease What is this? And this? This one is odd … This is how it works Parkinson’s disease Symptoms that SHOULD be present Symptoms that should NOT be present 4 13-7-2011 An important distinction Important role for allied health! Parkinson’s disease Atypical parkinsonism Specific challenges Allied health as a diagnostic tool ‘Bicycle sign’ for atypical parkinsonism Main findings Stopped cycling since diagnosis P < 0.001 Aerts et al, submitted 5 13-7-2011 Importance of compensation (Deep) brain stimulation Disease signs Primary disease process Compensatory strategies Medical management Allied health care Freezing of gait F Freezing of gait i f it Festination Absent when being examined 6 13-7-2011 The best test for freezing Recommendations for clinical practice Snijders et al., Parkinsonism Rel Disord, revision pending Pathophysiology of freezing Dopaminergic abnormalities Dopa‐responsive freezing Non‐ dopaminergic abnormalities Dopa‐induced abnormalities Courtesy of Alberto Albanese Albanese et al., Neurology 2005;64:1958-1960 ON state freezing of gait Espay et al., submitted 7 13-7-2011 Two big dilemma’s • When to start with treatment? • Which drug to start with? D Drug treatment t t t The source of the debate Brand new guideline Advantages NOW Complications LATER Beware of addiction! Gambling Drug addiction 8 13-7-2011 Fase 2 Modificatie van de ziekte Verslechtering Fase 1 Verbetering Slowing disease progression? Start Effects for 1 mg per day Effects for 2 mg per day Deep brain surgery Deterioration with time 2.5 3 Postural stability 2 Freezing of gait 2 1.5 1 1 0.5 0 0 Baseline 1 year 3 years Postoperative 5 years ‐1 Baseline 1 year 3 years 5 years Postoperative Krack et al., N Eng J Med 2003;349:1925‐1934 9 13-7-2011 Delayed and selective deterioration Stem cells 10 7/11/2011 Parkinson’s disease Page Title / heading goes here A slowly progressing neurological condition disease Profile and progression of impairments, activity limitations, participation and quality of life in Parkinson’s disease • • • • • • Primarily affects the basal ganglia 1.5% older people - 6 million+ world wide costs €5,000 to €10,000 per person per year people with Parkinson’s and care-givers can experience substantial home care costs and productivity losses rate and level of disease are poorly understood mapping disease progression – movement disorders – very important Professor Meg Morris, PhD Australia Aim of Physiotherapy Page Title / heading goes here Parkinson’s disease Page Title / heading goes here “... To enable the person with PD to live well by providing effective physiotherapy interventions at optimal times to promote health and wellbeing and by educating the individual regarding long-term self management strategies 1” Impairments Activity Limitations Participation Restrictions Quality of Life 1Morris, Marin & Schenkman, Physical Therapy, 2010 Disease severity: modified ICF Page Title / heading goesScale here (1967) Hoehn & Yahr Page Title / heading goes here International Classification of Functioning, Disability and Health 1 Health Parkinson’s condition (disease Disease or disorder) H&YII Hypokinesia Body function and Tremor structures Postural instability Rigidity 1WHO, 2001 Gait Activities Work Participation Transfers Self-care activities Education Recreation H&YI Social support Environmental factors Agefactors Personal Physical environment Sex Disease duration Disease severity H&YIV H&YIII H&YV Sze-Ee Soh slide with permission 1 7/11/2011 PD/ heading Medication Status Page Title goes here Impairments Page Title / heading goes here Affects performance of well learned motor skills Hypokinesia / bradykinesia Freezing Rigidity Postural instability Tremor (resting) Dyskinesia Dystonia • • • • • • • 1.4 1.3 1.2 1.1 1 0.9 0.8 0.7 0.6 0.5 Cadence (steps/min) Stride Length (m) Hypokinesia: Stride Length Cadence Relationship 140 120 100 80 30 30 40 50 60 70 80 Three Dimensional Gait Analysis 40 90 50 60 70 80 90 Speed (m/min) PD Control Morris et al. Brain 1994;117;1169-1181 Postural Page Title / headingInstability goes here & Hypokinesia (off versus on) Page Title / heading goes here Falls Michael J Fox Trial Morris, Iansek et al. FALLS • N=210 • 15 had incomplete calendars over 12 months • 78 non-fallers in 12 months (40%) • 117 fallers in 12 months (60%) • Total falls 1547 in 12 months • Maximum falls in an individual 277 • Mode for falls in 12 months = 3 2 7/11/2011 Activity limitations Freezing of gait Do you walk normally? Does gait affect ADL? Page Title / heading goes here Freezing? Feet Glued 52.2% Freezing of Gait How long? Start hesitation 53% Turning hesitation 52% Affects performance of well learned motor skills] • • • • • • • Walking Obstacle crossing Turning Sit to stand Dressing Handwriting Driving …. Quality ofgoes Lifehere Page Title / heading Participation Restrictions Page Title / heading goes here Leisure, Work, Education, Societal roles... Community ambulation Important • • • • • • An individual’s perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, standards, expectations and concerns1 22% fallers fell first in the community 74% fallers fell more than once Community fallers fell less than non-community fallers Falls in the community were more likely to result in an injury (56% compared to 31%) Community falls were more likely to need medical assistance (22% compared to 6%) Falls in the community are more often extrinsic / related to terrain than intrinsic (such as freezing) Lamont, Brauer, Morris et al (2010) 1World Health QOL dimensions Page Title / heading goes here Organization, 2006 Research Questions Page Title / heading goes here 1. What are the factors that predict HRQOL in people with PD? 2. How do people with PD rate their HRQOL? 3. What are the main demographic factors, PD impairments and activity limitations that contribute to HRQOL in PD? Acknowledgement: Sze-ee Soh & Jennifer McGinley co-investigators 1Soh et al, Physiotherapy 2011; S Soh with permission 3 7/11/2011 Study 1: Systematic Page Title / heading goes here Electronic search • Medline • Web of Science • CINAHL • EMBASE • PsychINFO • Scopus Review Article selection Page Title / heading goes here Potentially relevant studies identified via electronic search: n = 1387 Key search terms • Parkinson* disease • Quality of life • Health status • Personal satisfaction • Predict* • Determinant* • Prognos* Duplicate studies identified: n = 622 Studies excluded following screening of titles and abstracts: n = 680 Studies retrieved for more detailed evaluation according to pre-specificied inclusion/exclusion criteria: n = 85 Quality appraisal Page Title / heading goes here Study design Sample characteristics HRQOL instrument Factors examined in relation to HRQOL Limitations ✓ Stated (n = 26) Limited (n = 3) Study design Described (n = 12) Limited (n = 15) Participants Described (n = 24) Limited (n = 5) Non-responders Described (n = 1) Limited (n = 1) Not described (n = 11) Sampling method Described (n = 10) Limited (n = 15) Not described (n = 4) Sample size Justified (n = 1) Limited (n = 2) Not justified (n = 26) QOL definition Defined (n = 5) Limited (n = 9) Not defined (n = 15) Instrument Justified (n = 7) Limited (n = 17) Not justified (n = 5) Clinimetrics Adequate (n = 19) Insufficient (n = 10) Description Described (n = 28) Not described (n = 1) Selection Justified (n = 21) Not justified (n = 8) Appropriate (n = 25) Main predictors Stated (n = 29) Key findings Stated (n = 29) S Soh with permission Results Page Title / heading goes here Research objectives Statistical analysis Results Studies excluded following detailed evaluation of full-text report: n = 74 Total studies included in systematic review: n = 29 S Soh with permission Studies identified from targeted hand-searching of reference lists: n = 18 Not described (n = 2) ✓ Measures of HRQOL • Health status – generic or disease-specific • Most studies used one HRQOL instrument N/A (n = 16) ✗ PDQ-39 ✓ Limited (n = 3) Unable to determine (n = 1) Limited (n = 10) Not described (n = 9) SF-36 ✓ ✓ Described (n = 10) S Soh with permission S Soh with permission Non motor symptoms Statistical Analysis Page Title / heading goes here Page Title / heading goes here 30 • Most used multiple regression models • Stepwise regression methods Number of articles 25 Factors # that explained the variance in overall HRQOL Factors* examined in relation to HRQOL 20 15 Nonmotor symptoms 10 Cognitive impairment Cognition 13, 14, 16, 19, 20, 22, 23, 26-28, 30, 31, 33 Memory 19 Executive function 19 Visuo-spatial skills 19 Confusion 33 Cognition Neuro-behavioural disorders Depression 11, 13, 14, 16, 19, 20, 22-24, 26, 27, 29-31, 33, 36, 38-40 Anxiety 16, 19, 24, 29, 33, 38 Fatigue 13, 14, 25, 33, 38 UPDRS-I 16, 17, 27, 30 Psychosis 22, 23, 30 Hallucinations 33, 38 Apathy 38 Depression 11, 13, 14, 16, 19, 20, 22-24, 26, 27, 29-31, 33, 36, 38-40 Anxiety 19, 24, 29, 33, 38 Fatigue 13, 14, 25, 33 UPDRS-I 17, 30 Psychosis 30 Hallucinations 38 Sensory disorders Pain and headache Autonomic disorders Constipation 13, 33 Urinary incontinence 33 Autonomic symptoms 33 Sleep disturbances Sleep problems 5 Confusion 20, 23, 26, 28 33 0 Pearson/Spearman correlation coefficients Linear regression models Statistical methods 30 Number of articles 25 33 Pain and headache 33 20 15 Constipation 33 Urinary incontinence 33 10 13, 14, 22, 27, 31, 38 Sleep problems 13, 14, 27 5 0 Stepwise linear regression Hierarchical regression Standard multiple regression S Soh with permission S Soh with permission Statistical methods 4 7/11/2011 Predictors Motor symptoms S Soh with permission Page Title / heading goes here Page Title / heading goes here S Soh with permission Disease characteristics and demographic factors Factors # that explained the variance in overall HRQOL Factors* examined in relation to HRQOL Factors # that explained the variance in overall HRQOL Factors* examined in relation to HRQOL Disease characteristics Demographic variables Age of onset 13, 22, 33, 35, 39, 40 Disease duration 12-14, 17-22, 27-31, 33, 35, 37, 39-41 Disease severity 11-15, 18-28, 30, 31, 33, 35, 36, 40, 41 Disease disability 13, 14, 16, 20, 24, 25, 27, 29-31, 33, 40 UPDRS-III 13, 14, 17, 19-21, 26, 27, 35, 41 Medication type 11, 40 Levodopa dosage 13, 18, 19, 26-28, 30, 31, 35, 37, 40 Duration of medication 17, 26 Falls 20, 28, 31, 33 Age 12, 14, 15, 17, 18, 20-24, 26-29, 37, 40 Sex 12, 14, 15, 18, 21-24, 26, 27, 29, 35, 40 Living status (including number of household members) Relationship status 22-24 Employment 18, 22 Education 18, 21, 24, 29, 30 Income 22, 23, 41 Rural living 18 Financial problems 39 Co-morbidities 15, 19, 29 Ethnicity 21 Other 12, 21, 31, 41 Motor symptoms Functional ability Difficulty dressing 33 Difficulty rising from chair 17, 33 UPDRS-II 14, 16, 17, 24, 27, 30, 40 Self-report functional status 12 Movement disorders including complications arising from medication therapy Akinesia 20, 27 Bradykinesia 13, 16, 17, 19, 33, 37 Tremor 13, 16, 27, 33, 36-38 Rigidity 13, 16, 17, 19, 27, 33, 37 Non-tremor score 38 No of PD symptoms 36 Physical symptoms 16 PD type 27 Speech impairments 16, 17, 19 Facial expression 19 Clinical fluctuations 13, 22-24, 27, 30, 31, 33, 35 Dyskinesia 13, 22, 24, 27, 31, 33, 35 Dystonia 22, 23 End of dose deterioration 33 UPDRS-IV 16, 17, 24, 27, 35 12, 21, 28, 37, 39, 41 Disease duration Disease severity 11-13, 15, 18, 20, 22, 23, 25, 26, 31, 36, 41 Disease disability 20, 24, 25, 27, 29, 30, 33, 40 UPDRS-III 13, 21, 26, 27, 35, 41 Medication type 11 Levodopa dosage 19, 26, 27, 35, 40 Duration of medication 17, 26 Falls 28, 33 18, 22, 23, 27 Age 22, 23, 26 Sex 12, 22, 40 Living status (household members) Education 24, 30 Income 41 Rural living 18 Financial problems Co-morbidities 22, 23 39 Postural instability and gait disorders 19, 29 Other (survey language) 21 S Soh with permission Discussion Page Title / heading goes here Freezing 33 Postural instability 13, 16, 17, 20, 27, 33, 37 Gait impairment 13, 17, 20, 33, 36, 37 Axial impairments 19, 20 Difficulty turning 33 Festination 33 Propulsion and retropulsion 33 Lack of arm swing 33 Stooped posture 17, 33 Difficulty dressing 33 UPDRS-II 14, 24, 30, 40 Self-report functional status 12 Bradykinesia 19, 37 Tremor 36 Rigidity 13 Non-tremor score 38 No of PD symptoms 36 Physical symptoms 16 Clinical fluctuations 22, 24, 31, 33 Dyskinesia 24, 35 Dystonia 23 UPDRS-IV 16, 17, 24, 35 Postural instability 20, 37 Gait impairment 17, 33, 36, 37 Axial impairment 19 Difficulty turning 33 Page Title / heading goes here Individuals most likely to have poor HRQOL • Depressed • Advanced disease • High levels of physical disability No consistency in the way factors were examined Lack of clarity about concept of HRQOL S Soh with permission Study 2:goes Epidemiological study Page Title / heading here Research question • How does an Australian sample with PD rate their HRQOL? • Does the HRQOL of an Australian sample with PD differ from people living in other countries? Design Rationale • Most HRQOL studies have used European, American and Asian samples1 • Limited studies in Australia • HRQOL specific to culture and value systems2 Sample 1 Schrag 2 Lau Method Page Title / heading goes here et al, Mov Disord 2000; Croyle et al, Jour Clin Psych 2003; Tan et al, Parkinsonism Relat Disord 2004 and McKenna, Disabil Rehabil 2002 S Soh with permission • Epidemiological: to describe and quantify • Cross-sectional: one point in time • 210 individuals with idiopathic PD • Recruited as part of a randomised controlled trial 1 • Wide variety of sources and sites in metropolitan Melbourne • Neurologists, PD support groups, outpatient centres, physiotherapists 1Watts et al, BMC Geriar 2008 S Soh with permission 5 7/11/2011 PDQ-39 assesses Page Title / heading goes here ED5D to assess QOL QOL Page Title / heading goes here PDQ-391 EQ-5D1 • Disease-specific measure • 8 dimensions • Summary indices for each dimension and overall scale • Higher scores = poorer perceived HRQOL • Generic health utility measure • 5 item descriptive questionnaire • Combined responses converted into a utility value (-1 to 1) ✓ ✓ ✓ ✓ ✓ 1Peto et al, Qual Life Res 1995 S Soh with permission EQ5D VAS 1Williams, S Soh with permission Health Policy 1990 International comparison Page Title / heading goes here Page Title / heading goes here Best Health State EQ-5D1 • VAS indicating current health status • Allows patients’ preference to be compared directly To identify studies in international samples • Electronic search of the literature • Medline, Cinahl, Web of Science, PsychINFO, EMBASE, Scopus • Tailored search strategy • Parkinson* disease • Quality of life, health status, life satisfaction • PDQ-39 Worst Health State 1Williams, S Soh with permission Health Policy 1990 Statistical analyses Page Title / heading goes here S Soh with permission Results Page Title / heading goes here Dimensions of PDQ-39 Descriptive statistics • Summary scores for PDQ-39 and EQ-5D One-way repeated measures ANOVA • Compare ratings for dimensions of PDQ-39 • Bonferroni adjustment for multiple comparisons p<0.002 p<0.002 Meta-analysis • Comparability of ratings between Australians and international samples • Heterogeneity: χ2 test and I2 test • Random-effects model S Soh with permission S Soh with permission 6 7/11/2011 Study 2: Results Study 2: Results Page Title / heading goes here Page Title / heading goes here EQ-5D SI • UK population weights • Community-dwelling healthy Australians1 EQ-5D questionnaire • 78.6% reported problems 100 Better 0,9 70 0,8 60 50 40 30 20 PD sample Community-dwelling Australians 1 80 HRQOL (EQ-5D SI) Proportion of participants 90 0,7 0,6 0,5 0,4 0,3 0,2 0,1 10 0 Worse Mobility Self-care Usual activities Pain 0 36-50 Anxiety 51-65 S Soh with permission S Soh with permission 1Hawthorne et al, Ann Med 2001 Results Key Findings Page Title / heading goes here Page Title / heading goes here International PD samples Region Country • 27 samples from 28 studies • 5 regions, 17 countries North America USA South America Ecuador Brazil Western Europe Germany Estonia Norway Finland UK France Eastern Europe Serbia Poland Slovak Republic Asia-Pacific Japan Iran Israel China Singapore Age (years) Disease duration Disease severity (modified HY scale) UPDRS-II Mean Range 65.7 7.1 2.3 57-73 4-12 0-5 16.7 10-20 S Soh with permission >66 Age group Dimensions of EQ-5D Dimensions of HRQOL most impaired • • • • Physical function and mobility Performing usual activities Emotional problems Pain HRQOL of Australians with PD is poor • Lower compared to unimpaired individuals • Better relative to international samples S Soh with permission Metro versus rural Page Title / heading goes here Method study Page Title / heading goes here Specific aims Metropolitan sample • Compare the HRQOL of people living in metropolitan Melbourne with individuals from rural Victoria • Examine the contribution of rural living towards HRQOL in PD • 210 individuals with idiopathic PD from Study 2 Rural sample • 24 individuals with idiopathic PD • Community-based rehabilitation programs • PD support groups Hypothesis • People with PD in rural Victoria will have poorer HRQOL ratings1 • Rural life setting will be a significant predictor of HRQOL1 S Soh with permission 1Klepac et al, Eur J Neurol 2007 S Soh with permission 7 7/11/2011 Statistical analyses Results Page Title / heading goes here Page Title / heading goes here Rural Victoria and metropolitan Melbourne Descriptive statistics Characteristics • Summary scores for PDQ-39, EQ-5D and AQoL Rural sample n p-value 24 210 17 (71) 139 (66) 70.3 (7.3) 67.9 (9.6) 0.159 Disease duration [yrs], mean SD 8.7 (5.5) 6.7 (5.6) 0.047* Disease severity, median (range) 3.0 (1.5-4) 2.0 (1-4) 0.174 21 (88) 179 (85) 1.000 Bivariate statistics Male n(%) • Demographic characteristics • HRQOL ratings Age [yrs], mean (SD) Unemployed or retired n(%) Standard multiple regression analysis Metropolitan sample Living situation n(%) • Contribution of rural living to variance in HRQOL 0.921 Alone 4 (17) 98 (18) 20 (83) 162 (77) Supported residential services 0 (0) 9 (4) Nursing home 0 (0) 1 (1) With others Matched pairs analysis • Reduce variability due to age, sex and disease severity 0.819 S Soh with permission S Soh with permission Results Results Page Title / heading goes here Page Title / heading goes here Generic HRQOL (EQ-5D SI) Disease-specific HRQOL (PDQ-39 SI) Worse Better p=0.022 26.6 18.4 p=0.018 Worse Better S Soh with permission S Soh with permission Results Study 4:Predictors Page Title / heading goes here Page Title / heading goes here Specific motor symptoms Contribution of rural living to HRQOL Model 1 Rural living S Soh with permission Standardised regression coefficients R2 0.178 0.03 (-1.49. -0.23) 0.007* Multiple R = 0.18 R2 = 0.03 Adjusted R2 = 0.03 0.139 -0.049 -0.026 0.249 -0.015 -0.010 0.215 0.02 0.00 0.00 0.05 0.00 0.00 0.04 (-1.27, -0.08) (-0.03, 0.01) (-0.47, 0.31) (0.03, 0.10) (-0.53, 0.42) (-0.60, 0.52) (0.24, 1.04) 0.027* 0.482 0682 0.000* 0.819 0.882 0.002* Multiple R = 0.41 R2 = 0.17 Adjusted R2 = 0.14 95% CI Non-significant paths p-value Significant paths R2: 44% Adjusted R2: 42% 57 8 7/11/2011 Overall conclusions Page Title / heading goes here 1. • What are the factors that predict HRQOL in PD? Depression, disease severity and level of disability 2. • How does a sample of Australians with PD rate their HRQOL? Australians with PD perceived their HRQOL to be poor 3. How does the HRQOL of people with PD living in metropolitan Melbourne compare with people in rural areas? Individuals in rural areas had lower HRQOL • 4. • Page Title / heading goes here What are the main demographic factors, PD impairments and activity limitations that contribute to HRQOL in Australians with PD? Self-care limitations, impairments in mental function and disease duration Thank-you & Acknowledgements Page Title / heading goes here Sze-ee Soh Jennifer McGinely Mary Danoudis Hylton Menz Bob Iansek Anna Murphy Jenny Watts Frances Huxham Clarissa Martin Joy Tan Elizabeth Proud Staff at the Melbourne School of Health Sciences Participants from the MJFF trial and other trials 9 11/07/2011 Margaret Mak PT, PhD Department of Rehabilitation Sciences The Hong Kong Polytechnic University, Hong Kong Bloem et al. (2001), Charlett et al (1997) Wood et al. (2002) Physical 35% - fracture Reduce function - gait, balance, ADL, IADL Psychological 50% - fear of falling, reduce confidence 16-25% avoid activities Increase postural sway (Adkin et al. 2003) Shorter one-leg-stance time (Jacobs et al. 2006) Poor postural response to pull/push (Jocabs and Horak 2006, King and Horak 2008) Poor stability limits (Qutubuddin et al. 2007) Lower berg‟s balance score (Tanji et al. 2008) Prolonged timed-up-and-go time (Tanji et al. 2008) Hely et al. (2004, 2008) Bloem et al. (2001) "How confident are you that you can . . . Assess fall efficacy related to falls i.e. person‟s perceived confidence in performing specific activities without falling Fall efficacy scale Activity-specific balance confidence scale Score: (1-10) 1. Take a bath or shower 2. Reach into cabinets or closets 3. Prepare meals not requiring carrying heavy or hot objects 4. Walk around the house 5. Get in and out of bed 6. Answer the door or telephone 7. Get in and out of a chair 8. Get dressed and undressed 9. Light housekeeping 10. Simple shopping Total: (10-100) Note: Higher score associated with lower falls self-efficacy. "1" - extreme confidence "10" - no confidence at all (Tinetti et al. 1990) 1 11/07/2011 0% 10 20 30 40 50 60 70 80 90 No confidence at all 100% 0% Full confidence 10 20 No confidence at all 30 40 50 60 70 80 90 100% Full confidence How confident are you that you can maintain your balance and remain steady when you.... 1. walk around the house How confident are you that you can maintain your balance and remain steady when you.... 1. walk around the house 2. walk up or down stairs 3. bend over and pick up a slipper from the front of a corset floor 4. reach for a small can off a shelf at eye level 5. stand on your tip toes and reach for something above your head 6. stand on a chair and reach for something 7. sweep the floor 8. walk outside the house to a car parked in the driveway 9. get into or out of a car 10. walk across a parking lot to the mall 11. walk up or down a ramp 12. walk in a crowded mall where people rapidly walk past you 13. are bumped into by people as you walk through the mall 14. step onto or off of an escalator while holding onto a railing 15. step onto or off an escalator while holding onto parcels such that you cannot hold onto the railing 16. walk outside on icy sidewalks (Powell and Myers 1995) 2. walk up or down stairs 3. bend over and pick up a slipper from the floor 4. reach for a small can off a shelf at eye level 5. stand on your tip toes and reach for something above your head 6. stand on a chair and reach for something 7. sweep the floor 8. walk outside the house to get to one form of transportation 9. get into or out of a transportation you mostly use 10. walk across a parking lot to the mall 11. walk up or down a ramp 12. walk in a crowded mall where people rapidly walk past you 13. are bumped into by people as you walk through the mall 14. step onto or off of an escalator while holding onto a railing 15. step onto or off an escalator while holding onto parcels such that you cannot hold onto the railing 16. walk outside on wet and slippery ground Mak et al. Arch Phys Med Cantonese version of Activities-Specific Balance Confidence Scale (ABC 0% 10 20 30 40 50 60 70 80 90 Chinese) 100% 嘅 1. 2. 3. 4. 5. 6. 7. 8. 9. 10. 11. 12. 13. 14. 15. 16. “ Rehabil 2007;88:496-503 ” 嘅 嘅 嘅 嘅 Self-perceived balance confidence level 16 items - Indoor and more challenging outdoor activities (Powell and Myers 1995) Full confidence (100) to No confidence at all (0) Test-retest: r=0.92-0.99 (Powell and Myers 1995, Mak et al. 2007) Convergent validity: physical ability (r=0.63), p < 0.001 嘅 ABC 活動平衡信心 ** 120 * ? ** ? 100 score 80 60 40 20 0 ** p<0.01 * p<0.05 對照組 Controls N=80 ( 沒跌倒記錄 ) 柏金遜症患者 ( 有跌倒記錄 ) 柏金遜症患者 PD non-fallers PD fallers N=70 N=59 2 11/07/2011 Healthy subjects: 91 (Myer et al. 1998) PD: 59-72 (Adkin et al. 2003, Jacob et al. 2006, Mak and Pang 2009a) ABC score was associated with UPDRS postural and gait score (r2=0.81, p<0.001), BBS score (r2=0.64, p<0.001), and MiniBEST score (r2=0.76, p<0.001) (Adkin et al. 2003, Leddy et al. 2011) To examine whether risk of falling is associated with balance and mobility performance and fear of falling in PD patients 71 PD patients (33 were fallers) Potential risk factors into univariate regression model Timed-up-and-go time* ABC score* One-leg stance time (p=0.059) ABC score is the best predictor of 6-minute walk distance (r2=0.46, p<0.001) (Mak and Pang 2008) (Mak and Pang 2009a) UPDRS - Unified Parkinson‟s disease rating scale Predicting future falls in PD Independent variables Number (%) of subjects B S.E. Odds ratio 95% confidence interval p value 0.043 0.695 0.027 0.131 0.034 0.525 0.057 0.068 1.04 2.00 1.02 1.14 0.98, 1.11 0.72, 5.60 0.64, 1.03 0.05, 1.14 0.202 0.185 0.638 0.054 -0.025 0.648 0.022 0.129 0.042 0.593 0.063 0.081 0.97 1.91 1.02 1.14 0.90, 1.06 0.60, 6.12 0.90, 1.16 0.97, 1.33 0.552 0.275 0.727 0.110 0.01, 0.65 0.020* Step 1 Age Gender Duration of PD Depression Step 2 Age Gender Duration of PD Depression ABC score >80 18 (25) -2.771 1.192 0.06 ABC score =50-80 42 (59) -2.324 1.317 0.10 0.01, 1.29 0.078 TUG time ≥16s 20 (28) 1.351 0.667 3.86 1.05, 14.27 0.043* *p<0.05 PD ABC TUG SE Parkinson’s disease Activities-specific balance confidence scale Timed-up-and-go test Standard error (Mak and Pang 2009a) (Mak and Pang 2009b) 92 patients volunteered Variable 20 patients were excluded History of lower limb fracture (n=5) Back or leg pain (n=10) MMSE < 24 (n=2) History of other neurologic diseases e.g stroke (n=2), poliomyelitis (n=1) 72 patients included Non-recurrent fallers (n=55) Recurrent fallers (n=15) p-values 0.485 Age (years) Baseline measures: • History of falls • UPDRS • TUG time • ABC score 62.6 (7.8) 64.1 (6.9) Female gender (n) 30 7 0.588 Positive fall history (n) 17 15 <0.001* Geriatric Depression Scale score 5.4 (4.0) 6.1 (3.7) 0.577 Duration of PD (years) 7.2 (4.2) 9.4 (5.3) 0.091 Hoehn and Yahr stage 2.8 (0.5) 3.0 (0.3) 0.031* UPDRS motor score 21.4 (8.9) 29.4 (9.1) 0.003* TUG (s) 13.6 (3.1) 18.3 (8.8) 0.061 71.9 (14.9) 54.4 (15.9) <0.001* ABC score 2 patients lost to follow up (died) *P<0.05 70 patients completed 12-month follow-up ABC Activities-specific balance confidence scale TUG Timed-up-and-go UPDRS Unified Parkinson‟s disease rating scale Means (SD) ABC PD TUG UPDRS unless otherwise indicated Activities-specific balance confidence scale Parkinson‟s disease Timed-up-and-go Unified Parkinson‟s disease rating scale 3 11/07/2011 Cut off point Step Variables entered Wilk λ Exact F Statistics df1 df2 P value 1 Fall history 0.676 32.57 1 68 <0.001** 2 UPDRS motor score 0.570 25.23 2 67 <0.001** 3 ABC score 0.539 18.84 3 66 <0.001** Sensitivity=93%, Specificity=86% **P<0.01 ABC UPDRS Area under the curve (AUC) = 0.823 ABC = 69 Sensitivity = 93% Specificity = 67% UPDRS = 32 Activities-specific balance confidence scale Unified Parkinson‟s disease rating scale Area under the curve (AUC) = 0.736 Sensitivity = 47% Specificity = 94% (Mak and Pang 2009b) Fall prediction ABC score < 69 (sensitivity=93%) UPDRS score < 32 (specificity=94%) Timed-up-and-go time >16s (OR=3.86) Abnormal posture, freezing of gait, poor leaning balance, leg muscle weakness (sensitivity=77%, specificity=82%) Latt et al. (2009) Address Fear of Falling in fall prevention program for PDs Parkinson‟s disease Muscle weakness UPDRS gait, UPDRS pull test and oneleg-stance time predicted ABC scores (r2=0.51) (Jocabs et al. 2006) UPDRS - PIGD and Knee muscle strength predicted ABC scores after accounting for demographic and disease severity (r2=0.49) (Mak et al. submitted) balance and gait deficits Falls PD symptoms Self-restriction, functional decline, physical deconditioning More fear of falling Fracture Institution 4 11/07/2011 Exercise & walking training is better than exercise (strength, balance) in enhancing balance confidence (Brouwer et al. 2003, Hinman et al. 2002, Liu et al. 2007, Robertson et al. 2001) Tai Chi (>56 sessions) is effective (Sattin et al. 2005, Zhang et al. 2006) Exercises + Cognitive-behavioural education (Identify fall risk factors, discuss coping strategies to falls) could produce gain in balance confidence (Tennstedt et al. 1998) & reduced the fall risk by 31% at 14-month follow-up (Clemson et al. 2004) References Treatment interventions Muscle strength balance and gait Lower extremity muscle strength Increase the stability limit Increase speed and amplitude of postural response to perturbation Dynamic gait ability including freezing of gait Cognitive-behavioural education Movement speed and amplitude Functional mobility, physical abilities FALLS Adkin AL, Frank JS, Jog MS (2003) Fear of falling and postural control in Parkinson‟s disease. Mov Disord18:496-502 Bloem BR, Grimbergen YAM, Cramer M, Willemsen M, Zwinderman AH (2001) Prospective assessment of falls in Parkinson's disease. J Neurol 248:950-958 Bula CJ, Monod S, Hoskovec C, Rochat S (2010) Interventions aiming at balance confidence improvement in older adults: an updated review. Gerontology DOI: 10.1159/000322241 Clemson L, Cumming RG, Kendig H, Swann M, Heard R, Taylor K (2004) The effectiveness of a community-based program for reducing the incidence of falls in the elderly: a randomized trial. J Am Geriatr Soc 52:1487-1494 Jacobs JV, Horak FB, Tran VK, Nutt JG (2006) Multiple balance tests improve the assessment of postural stability in subjects with Parkinson‟s disease. J Neurol Neurosurg Psychiatry 77:322-326 Latt MD, Lord SR, Morris JG, Fung VS (2009) Clinical and physiological assessments for elucidating falls risk in Parkinson „s disease Mov Disord 24:1280-1289 Mak MK, Lau AL, Law FS, Cheung CC, Wong IS (2007) Validation of the Chinese translated Activities-Specific Balance Confidence scale. Arch Phys Med Rehabil 88:496-503 Mak MKY, Pang MYC (2009a) Balance confidence and functional mobility are independently associated with falls in people with Parkinson‟s disease. J Neurol 256:742-749 Mak MKY, Pang MYC (2009b) Fear of falling is independently associated with recurrent falls in patients with Parkinson‟s disease: a 1-year prospective study. Journal of Neurology 2009;256:1689-1695. Institution Thank you Acknowledgements: Anna Lau, Cecilia Cheung, Raymond Chung, Man Cheung, X Shen, Yu Liling, Irene Wong, YY Wong, Ted Wong Funding: The Hong Kong Polytechnic University (PA4P, U303) 5 11/07/2011 Points to be addressed Freezing and festination Rehabilitation of freezing and festination in PD 1. Imply severely disrupted motor control 2. Are related to imbalance and falling 3. Express wide BG dysfunction 24th of June 2011 Alice Nieuwboer Dept Rehabilitation Sciences 4. Ameliorated with rehabilitation? Common triggers Turning making a wide arc (on) Turning making a narrow arc (off) 1. Freezing and festination are related? Obstacle Phenotypes of FOG Group*turn p<0.01 Festinating No FOG 18% 23% Trembling Akinetic Schaafsma et al, 2003 Willems et al 2006; Snijders et al 2008; Spildooren et al 2010 Motor behavior preceding FOG Decline of motor control generic? Freezing of gait Comparing festination and pre-freezing strides (off) 1,20 P=0.0001 Stride amplitude (M) Cadence step/min 300 1,00 Moore et al 2008, Delval et al 2010 Step timing more variable 0,80 Pre Hausdorff et al 2003; Plotnik et al 2008; 100 0,20 0,00 Shorter stride amplitudes (off) 150 0,40 Freezing of finger movements Bilateral step coordination disordered 200 0,60 High frequency oscillations P=0.0001 250 50 Normal Fest 0 Freeze1 Freeze2 Freeze3 Normal Fest Freeze1 Freeze2 Freeze3 Spatiotemporal dyscontrol common component Nieuwboer et al, 2001; 2004; 2007; Snijders et al 2009; Chee et al 2009 Amplitude decline Abnormal oscillations Nieuwboer et al, 2009; Vercruysse et al 2011 submitted 1 11/07/2011 Freezing and Festination Similar underlying repetitive motor control disorder which is possibly generic and more pronounced in freezers Balance and falling? Schaafsma et al, 2003 1. Related to balance / severity? Nature balance deficit? Total prevalence 52% in a selected cohort of N=210 Trembling of knees at step initiation 100 Repeated lateral weight shifting 90 80 (Anticipatory Postural Adjustments ) 70 60 50 40 30 20 10 0 Jacobs et al 2009 NOFOG FOG 76.2% 38.2% 79.2% 0-I Lateral weight shifting disturbance in response to cursor movement on 27.3% II III IV computer screen. Unpublished data Morris et al, 2011 in press Archives of Phys Med & Rehab Freezing is a strong predictor of falls in PD Kerr et al, 2010, Latt et al 2009 Balance and falling Freezing and festination ~ weight shifting deficit • Single leg stance instability • Switching deficit between loading and unloading Freezing and festination express wide BG dysfunction 2 11/07/2011 Cognitive (executive) dysfunction 24 Non-Freezers 27 Freezers Mean 2.4 67.9 34.6 Descriptors H&Y Age UPDRS III Mean 2.3 66.3 31.9 SD 0.4 6.3 9.7 Gait and Balance BBS total TUG Fall history 26.5 2.4 11.2 1.9 2/22 (8.3%) Distal motor UPDRS tremor 2.2 UPDRS REP 12.4 Distal freezing 0.5 Cognition Scopa Total MMSE 29.9 28.55 Freezing and DT walking P value SD 0.5 7.6 15.2 +DT FOG +9% 0.70 0.41 0.61 23.6 5.0 13.2 5.6 17/10 (62.9%) 0.05* 0.39 0.02* 2.3 4.6 0.8 2.3 13.9 2.0 2.8 11.5 1.9 0.99 0.32 <0.01* 3.7 1.3 25.7 27.4 6.2 2.2 0.02* 0.05* +DT FOG +5% +DT FOG +1% +DT** (Group*turn*DT p=0.08) Impact of cognitive task on motor function >> in freezers Naismith et al 200g, Amboni et al 2008, 2010 % errors Cognitive task performance 10 9 8 7 6 5 4 3 2 1 0 Spildooren et al, 2010 Summary Both motor (habitual) and cognitive (goal-directed) control is more affected in freezers * controls nFR FR ** * straight More vulnerable learners? Rehabilitation potential…. 180° 360° (group*turn p=0.04) Impact of turning difficulty on cognitive function >> in freezers Spildooren et al, 2010 Rehabilitation options Freezing and Festination Balance exercise? Fall risk = α*FOG + ϐ*Knee strength + γ*Balance + σ Problems Training options • Imbalance and falling • Balance exercise • Rhythmic weight shift strategies • Repetitive movement breakdown • Cued or sensory augmented training • Executive dysfunction • Home+group exercise for 6 months (3*week) Task integration or serial task learning? DeLatt et al, MDJ 2008; Allen N et al. MDJ 2010 3 11/07/2011 Weight-shifting strategies Cueing and FOG Imposing a normal spatiotemporal pattern alleviates FOG? Spatiotemporal correction of (auditory) cueing << Freezers Baseline is Best Imposing an abnormal spatiotemporal pattern provokes FOG? Visual cues Auditory cues Training in complex and 3D environments which require a lot of switching between modes of control. Lots of ‘action Increase of 40% cadence leads to FOG relevant information’… Decrease of 50-25% step length leads to FOG Moreau et al, 2008; Chee et al 2009 Turning and FOG Cued dual task turning ** * 5 * Fixed priority No cues Auditory No cues 2 No cues 3 Auditory 4 No cues Turn duration sec. 6 1 0 Freezers N=60 N-freezers group*time NS N=65 37/94 FOG episodes 25/94 FOG episodes Unilateral cueing reduces the number turns +FOG by 50% Freezing in cued trials (19%) < no cues (69%) Nieuwboer et al, 2009 Application of cueing matters Spildooren et al, Poster et WCPT On-line effects of cueing 1.With cueing groups were comparable 2.Without cueing freezers became much more variable Spildooren et al, Poster et WCPT Vercruysse et al, in revision for NNR 4 11/07/2011 Summary Early stage motor control training to prevent rhythm and amplitude breakdown Key Cues as training tool – with possible weaning off to stimulate habitual control Balance deficits and switching amenable to training? Research is teamwork Depts Rehabilitation & Movement Science Joke Spildooren Sarah Vercruysse Elke Heremans Stephan Swinnen Nici Wenderoth Jochen Vandenbossche Eric Kerckhofs Lynn Rochester Wim Vandenberghe Alice Nieuwboer Faculty of Medicine Dept. Neuroscience Funding bodies Dual or serial tasking for freezers? Bijzonder OnderzoeksFonds 5 Cognitive movement strategies: Cognitive movement strategy training to improve ADL in Parkinson’s disease • Old concept, 80’s last century • The use of cognitive (conscious) movement control in PD • Compensation for progressively impaired automatic initiation and execution of activities Yvo Kamsma 1 July 2011 WCPT Parkinson 1 1 July 2011 WCPT Parkinson 2 Examples impaired mobility Survey under PD patients Major problems with gait and transfers (mobility): – Rising from a chair, sitting down, getting in and out of a car – Getting in/out of bed, turning in bed – Walking under various conditions => Essential for physical independence (Wimmers & Kamsma, 1998) 1 July 2011 WCPT Parkinson 3 1 July 2011 WCPT Parkinson 4 Turning in bed Use of cognitive control • Implies detailed insight into normal performance of transfers and gait • What are their features? • How are they affected by PD? • Do they allow cognitive control? 1 July 2011 WCPT Parkinson • • • • 5 Complex movement pattern, many elements Pelvic rotation is crucial Fast force generation, timing, dimensioning Unfolds automatically, no clue how it’s done 1 July 2011 WCPT Parkinson 6 1 Reorganisation of the activities Complication Gait and transfers contain features that are particularly problematic for PD patients: - – Decouple different activities (e.g. risingwalking) – Simplify the activities, break them down in sequences of simple movement parts – Create minimal dependency on speed and force production Complex patterns, many elements Speed, timing Adequate force production ⇒ Original execution is not fit for cognitive control ⇒ Reorganisation of the activitity 1 July 2011 WCPT Parkinson 7 Reorganistion of rising 1 July 2011 WCPT Parkinson 8 Requirements for training - Explanation of strategy principles - Clear picture of the strategy: - Demonstration by therapist - Self instruction, verbalisation patient - Practice 1 July 2011 WCPT Parkinson 9 Requirements for training 1 July 2011 – Bed related strategies – Sitting and rising strategies – Gait related strategies Slowed information processing Reduced (divided) attention capacity Reduced flexibility (executive functions) Dementia WCPT Parkinson 10 • N=25 PD patients, H+Y 2-4 • Training programme: Cognitive (frontal) dysfunctioning: • • • • WCPT Parkinson Early research (Kamsma et al., 1995) Motor learning process: - Cognitive phase, no automatization - 1 July 2011 • Schedule: 11 1 July 2011 14 sessions 2x week - 1x 6mths WCPT Parkinson 12 2 Results Further evidence • Evaluation by systematic video analysis • 23 patients were well able to learn and reproduce the strategies • Experimental setting => home situation? 1 July 2011 WCPT Parkinson 13 • Positive results of other research: – Nieuwboer et al. (2001): home physiotherapy programme – Morris et al. (2009): rehabilitation programme • Mixed interventions: cueing and other strategies as well • Clinical effectiveness of cognitive strategies remained unclear 1 July 2011 Recent research • • WCPT Parkinson 14 Results RCT, co-worker Baukje Dijkstra 3 (small) groups, H+Y 2-3: 1. Cognitive strategy training, N=12, trained PT’s, at home,12 sessions, 1x week, 30 min 2. Usual care PT, N=12, 12 sessions, 1x week, 30 min. 3. Untreated controls, N=11 • Evaluation: – – – Modified Parkinson Activity Scale (M-PAS), Home situation Recorded on video, blinded scoring 2 PT’s 1 July 2011 WCPT Parkinson Before training 15 1 July 2011 Results (preliminary) Measurement Movement strategies pre – post p pre – post p 1.0 (-0.6 – 2.6) 0.186 0 (-1.1 – 1.1) 1 M-PAS gait 0.7 (-0.9 – 2.3) 0.343 0 (-1.2 – 1.2) 1 M-PAS bed mobility I -0.6 (-1.7 – 0.5) 0.239 0.1 (-0.7 – 0.9) 0.818 M-PAS bed mobility II 0.1 (-1.6 – 1.8) 0.898 0.2 (-0.4 – 0.7) 0.529 M-PAS total 1.2 (-3.4 – 5.8) 0.566 0.3 (-2.1 – 2.6) 0.816 Values are mean differences (95% confidence interval) and p-values. WCPT Parkinson 16 Reasons? • Treatment frequency => higher? • Experience PT => more patients? • M-PAS: standard instructions • Cognitive dysfunction (EF): coming loose from routine behavior and apply strategies when necessary => external reminder? Usual care physiotherapy M-PAS chair transfer 1 July 2011 WCPT Parkinson Results Table 4: treatment effects Groups After training 17 1 July 2011 WCPT Parkinson 18 3 Conclusion Thank you for your attention! • No clear clinical evidence yet for effectiveness • Nevertheless patients and PT’s are positive • Recommendations: – Address cognitive (EF) aspects – Objective measurement of movement behavior in the daily situation (ambulatory monitoring) 1 July 2011 WCPT Parkinson 19 1 July 2011 WCPT Parkinson 20 4 What is cueing? Paying attention to Attention ‘Applying external temporal (rhythmical) or spatial stimuli associated with the initiation and ongoing facilitation of motor activity (gait)’ Understanding the mechanisms of external cueing in Parkinson’s Disease Contrary to: Internal cueing (self-generated) Erwin van Wegen Rhythms, stripes, music, vibrations , … Lim et al., 2005 Brief history of Cueing • 1924 first description on cues (Von-Meyer Königsberg) – Dancing on marching music, guided by a nurse, improved gait and posture • 1996 first RCT auditory cueing (Thaut et al.) – Home based self-exercise – RAS: rhythmically accentuated music • 2007 The Rescue project (Nieuwboer et al.) – first home-based cueing training program by physical therapist – Largest RCT to date. • Many studies since… • Conclusions so far: Cueing works (what’s new?) – Walking speed, stride length/cadence, balance, ADL, – Transfer to QoL?,…. Motor problems in PD How does it work?? ? 1. Problems with automatic maintenance of movement amplitude during movement sequences 2. Problems with rhythm of sequential movements/movement cycles 1 Mechanisms Example 1 • Parallel versus Transverse lines during walking on a treadmill: step frequency Parkinson: higher frequency, smaller steps Transverse Lines: lower frequency, bigger steps (Hanakawa ea 1999) Mechanisms •SPECT 1. 2. 3. 4. 5. Motor problems in PD R precuneus (bm 7) L medial frontal Gyrus (bm 10) L inferior parietal lobule (bm 39,40) L insula L cerebellar hemisphere 1. 2. > act. in lateral pre-motor areas (spect) 3. 4. 5. 6. 1. Problems with automatic maintenance of movement amplitude during movement sequences L cerebellar hemisphere L middle occipital gyrus (bm 19) R inferior parietal lobule (bm 7) L precuneus (bm 7) R middle frontal gyrus (PMC, bm 6) R anterior cingulate gyrus (bm 32) L inferior parietal lobule (bm 40) 2. Problems with rhythm of sequential movements/movement cycles Mechanisms Example 2a (Samuel et al., 1997) Example 2b Looking at brain dynamics with Magneto Encephalography (MEG) rCBF unimanual finger sequences with a ‘pacing tone’ (PET) Relative over-activity of lateral premotor /parietal areas SMA Control Parietal Pre Motor Parkinson Lat./Parietal/ Cx: Integration of sensory info (Binkofski et al., 1999). 2 Setup Squeeze!e Videoscreen w/ instructions Source localization, Frequency analysis at significant sources (M1) MEG dewar with 151 sensors Left index finger: tactile stimulus Right-hand: squeeze balloon, 80 bpm Datacollection computer Pressure Switch Movement paradigm – Rhythmic cue (80 bpm) – Squeezing a balloon with r. hand Rhythmic: Alpha power (7-11 Hz) – Instruction • ‘Squeeze on cue’ α: 7-11 Hz Alpha power Conclusion • Increased alpha power activity reflects resting, nonfocused, relaxed state • PD patients do not return to this state as quickly as controls do, after cueing: • Reflection of increased arousal/attention due to cueing? No increase in alpha power after Rhythmic Cueing in PD Context: – More reliance on external cues – Motor perseveration: ‘lingering’ in existing movement patterns – Problems with set-shifting 3 Take home message Mechanisms (simplified!) • Indications for use of alternative braincircuits: ‘bypassing’ of defective basale ganglia-SMA-motorcortex loops. • Under influence of cues: – brain activition patterns change – Arousal/Attention increases ‘Medial system’ ‘Lateral system’ • But: – Still not shown DURING walking (how?) – Longterm effects of cueing on brain dynamics are unknown attention for your ATTENTION So, the truth is (still) out there.. [email protected] Thanks to: Prof. Dr. G. Kwakkel Drs. C. de Goede Mw. I. Burgers Dr. I. Lim Prof. Dr. E. Wolters Prof. Dr. A. Nieuwboer Dr. A. Willems Drs. F Chavret Dr. D. Jones Dr. L. Rochester Dr. K. Baker Drs. V. Hetherington Dr. A. Vardy Dr. A. Daffertshofer 4 11/07/2011 Motor Learning in Parkinson’s disease: limitations and potential for rehabilitation Lynn Rochester PhD [email protected] Clinical Ageing Research Unit Aims • • • • • Definition Neural substrates Limitations Evidence Clinical Application Motor learning – a definition ‘A set of processes associated with practice or experience, leading to relatively permanent changes in the capability for movement’ (Schmidt 1999) Stages of learning Stage Characteristics Cognitive Novel task Receive instruction and feedback Problem solve - what to do and how to do it Error prone – variability of performance Associative Environmental cues associated to movements Goal or skill attainment ↓error and ↑ consistency Autonomous (automatic) ↓ conscious control ↑ dual task (eg talking and driving) Early Late Limitations in PD Automaticity in PD (Wu et al., 2005) • PD can achieve automaticity but comes at a cost (Wu et al., 2005) • Motor sequence learning possible but attenuated (Stephen et al., 2011) – Need more time – Related to disease stage (UPDRSIII; H&Y; medication) PD • Dopaminergic medications impair early stage learning (Kwak et al., 2010) • Learning related activation declines at 2 years (Carbon et al., 2011) Pre-training PD > C Lynn Rochester. Satellite Education Session. WCPT, Amsterdam, 2011 1 11/07/2011 Other systems contribute Should we train dual tasks? Rodriguez-Oroz et al., 2009 • • Akinesia (bradykinesia, hypokinesia), rigidity, tremor Executive and attentional deficits Multi-factorial Multi-system – cholinergic dysfunction Depression, anxiety, apathy Multi-task gait performance (Dual cog+motor) Single session (20mins) dual task training (N=20 PD) Dual task step length Change score m/s) 0,2 0,15 0,1 0,05 0 Training Specificity of training Retention •Multi-task training feasible – mild-moderate PD •May have sustained effects DUAL ↑Obstacle crossing ↑Cognitive function Lynn Rochester. Satellite Education Session. WCPT, Amsterdam, 2011 2 11/07/2011 Features of cued motor learning • Sensory information augments learning BUT limited transfer of learning and generalisation to non-cued trials (Verschueren et al., 1997) • Sequence learning deficits may result from automatic response activation during learning stage (Werheid et al., 2003) Training complex tasks • Walking and talking • Memorising and repeating • Carrying and manipulating objects – eg walking and selecting correct door key from pocket • Incorporate concurrent tasks into complex tasks – walking, turning, navigating Training complex tasks Cueing complex tasks Training complex tasks How can we evaluate motor learning in the clinic? H&Y 1 Complex exercise + Cognitive cues & dual-task exercise H&Y 2 Introduce external cues & faded H&Y 3 practice Consider permanent cueing devices Automaticity - dual task Retention – (separate from training effects) Transfer – to other skills – eg gait, transfers improve under different contexts Potential for learning Lynn Rochester. Satellite Education Session. WCPT, Amsterdam, 2011 3 11/07/2011 Automaticity Primary Secondary Gait (10m) TUG Balance - standing Cattle counter Carry cup/tray with cup Verbal fluency Modified stroop Digit subtraction (7’s, 3’s) Days of week backwards Remember shopping list Practice points Measure BOTH in isolation and during dual task • Include motor learning as part of therapy programme • Select patients based on knowledge of potential limitations • Try different approaches to find the best one (exercise and complex skill practice, cueing) according to disease stage • Faded practice (if relevant) • Evaluate the effect of therapy (ART) Acknowledgements • Ins titute for A geing and Health UK NIHR Biomedical Research Centre for Ageing and Age-Related Disease award to the Newcastle upon Tyne Hospitals NHS Foundation Trust Review: Nieuwboer et al., Parkinsonism & Related Disorders, 2008 Lynn Rochester. Satellite Education Session. WCPT, Amsterdam, 2011 4 The use of ‘fall diaries’ in practice • • • • Background Research study Prospective / retrospective Clinical implications Ashburn A Faculty of Health Sciences, University of Southampton Background • Falls are common among people with PD • Definition – ‘an event that results in a person coming to rest unintentionally on the ground or other lower level, but not as a result of a major intrinsic event or overwhelming hazard’ • Previous work - We found people with PD talked about location, fall-related activities, landing, saving reactions and perceived cause Stack et al Phys Res Inter 1999; 4:190-200 Aim of Study To • Explore circumstances surrounding falls • Validate previous findings with a larger sample • Confirm the ability of people with PD to complete fall diaries Fall Diary • Questions – – – – – – – (Stack et al Phys Res Inter 1999; 4:190-200) Where were you when you fell ? What were you trying to do ? What do you think caused you to fall`? How did you land ? What injuries did you sustain ? How did you get up again ? What health care did you receive ? • Interview or self-completion Method • Participants were recruited to an RCT to test the effectiveness of exercises • Inclusion criteria – Confirmed diagnosis, independently mobile, living at home, cognitively in tact, had fallen more than once in the previous 12 months. Ashburn A et al The Circumstances of Falls among People with PD and the Use of Falls Diaries to Facilitate Reporting Disab & Rehab 2008;30(16) 1205-2012 1 Diary Procedures Results • Monthly Calendar (marked in days) falls & near-falls for 6 months - • Telephone reminders • Coded and counted frequencies of responses Fall-related Activities Locations • 511 (80%) in the home • 77 (12%) elsewhere 36 indoors / 41 outdoors • 51 (8%) diaries incomprehensible The Circumstances of Falls among People with PD and the Use of Falls Diaries to Facilitate Reporting Ashburn A, Stack E, Ballinger C, Fazakarley L, Fitton C (2008) 1 2 3 4 5 6 7 8 9 Falls resulting in Serious Injury and/or Health Service Intervention (n = 17) Location, Activity and Cause Stumbled making drink in kitchen Lost balance sitting on bed Over-balanced opening wardrobe in bedroom Turned too quickly unaided in hotel room Twisted; lost balance descending stairs, carrying washing Turned putting food in fridge Flying kite, wind lifted me off feet Tripped outside shop walking to car Lost balance taking a few steps leaving Cafe 1 Caught trolley (which fell 0 over) getting out of bed 11 Slipped turning off shower 1 Over-balanced 2 washing dishes 1 Turned too sharply dressing 3 in sitting room; overbalanced 1 Fell forward mopping 4 spillage in lounge 1 Froze on pavement 5 getting out of car 1 Turned quickly in shop; 6 caught display stand • 142 participants (7 excluded – death or withdrawal & 11 unintelligible) = 124 • Mean age - 72 years • Mean time since diagnosis - 8 years • Hoehn &Yahr (16 = II; 92 = III; 34 = IV) • 639 falls [vast range] • Ambulant – walking, Living Areas 19% Kitchen 15% Gardens 14% Bedrooms 30% Hall 7% Getting Up and Intervention Right side; fractured hip Paramedics helped me up; hospital and surgery (fracture) Paramedics lifted me; admitted (fracture) Husband lifted me up; six hours in hospital (fracture) Wife and son helped up; X-ray, surgery, night in clinic (fracture) Husband called ambulance; ten hours in hospital (fracture) Partly in wardrobe; fractured tibia Right side, arm under body; fractured hand, bruised back On back; fractured ribs, concussion Very hard on back; fractured ribs, bruises On back; fractured ribs, internal bruising Face downwards, in sprawl; fractured nose, damaged hand On bottom; pain left leg and buttock On back; cut leg; bruised back Grazing; bruising On one knee; hurt hand Left side; hurt left shoulder Forward, hit head; cut eyebrow, ear; dislocated tooth Headlong; cut over eye; closure of eye; bruising Face first; cut face, nose bleed Ambulant 45% Bath 8% Landing and Injury Right side; fractured pelvis turning, stepping up or down, carrying something With friends, called ambulance; GP called two days later (fracture) Helped up by son; X-ray (fracture) Three ladies helped me up; ambulance called; X-ray and treatment (fracture) Lifted by a gentleman; X-ray; Ibuprofen Helped up by husband; X-Ray Helped up by wife; X-Ray; Pain management Up with help of table and walking stick; X-ray Up with help of chair; called GP; sent to A&E Fall-related Activities • Ambulant – walking, turning, stepping up or down, carrying something • Standing – bending, reaching, washing or dressing or completing another task Ambulant 45% Standing 32% Up with wife’s help; A&E Strangers helped me up; medics came out; treated at home Two ambulance men helped me up and cleaned up 2 Fall-related Activities • Ambulant – walking, turning, stepping up or down, carrying something • Standing – bending, reaching, washing or dressing or completing another task • Transfers • Slipped out of chair or Transfers 21% Ambulant 45% Standing 32% rolled out of bed (2%) Stack et al Phys Res Inter 2005; 10: 146-153 Perceived Cause • • • • • Tripped Freezing/festinating Bending or reaching Transfer Walking: Loss of balance • Washing and dressing • Misjudgment • Others Injurious Falls Tripped Others Freeze Bend Misjudgment Transfer Wash Walk Study Summary • Over 600 falls were surveyed • All participants were repeat fallers • Validates previous findings – Most falls happen at home – Tripping is biggest single cause – Turning reaching and rising are key challenges to stability • Additional finding - people fall when stationary –1 in 3 falls from standing posture • Diaries have strengths & weaknesses but rely on individuals’ perceptions • 17 injurious falls • 11 at home 4 outdoors & 1 in hotel & 1 in shop • Turning implicated in 6 serious falls (5 had backward or sideways landing) • 8 fractures (hip, pelvis, tibia, hand, three ribs and a nose) and 5 facial injuries • Further 4 had x-rays, 2 attended A&E and 3 required paramedic assistance Retrospective or Prospective Recording • Comparison of retrospective and prospective recording (stroke) • 76 subjects • 83% agreement but more information from retrospective • Frequent fallers – less likely to report falls monthly • Recommend prospective plus face to face interview Kunkel et al, Age & Ageing 2011; 40 (2): 277-280 3 Implications for practice • Most PwPD can complete fall diaries • Recommend use of diaries in rehabilitation as an aid to assessment & interventions Funding from • Action Medical Research and • John & Lucille Van Geest Foundation • Identify individual fall related activities and teach physical and cognitive skills to counterbalance • Consider environmental adaptations • Encourage ways of making standing tasks safer 4 11/07/2011 Summary • Epidemiology and consequences • Risk factors • Exercise and falls in PD Exercise to alleviate falling in Parkinson’s disease Victoria Goodwin Are falls common in PD? Risk factors for falls in PD 80 70 60 50 40 % fallers % recurrent fallers 30 20 10 Prior falls Cognitive impairment Freezing Postural instability and reduced balance Reduced strength and power Fear of falling 0 Ashburn 2001 Wood 2002 Allcock 2009 Kerr 2010 Matinolli 2011 Risk factors for falls in PD Prior falls Cognitive impairment Freezing Postural instability and reduced balance Reduced strength and power Fear of falling PD Motor impairments Cognitive impairments FALLS FRACTURES Decline in physical ability (strength, balance) Fear of falling Reduced physical activity 1 11/07/2011 Targeting modifiable risk factors • • • • Exercise for strength and power Strength Power Balance Fear of falling Balance and the ICF framework Exercise for balance impairment PD Body structure and function (impairment) Activities (functional limitations) Participations (Disability) Balance responses Functional balance tests Falls, fear of falling Exercise for functional balance (activity) Participation (falls and fear of falling) 2 11/07/2011 Ashburn et al (2007) • N=142 • 6 sessions of home-based physiotherapy vs. usual care – Strength, ROM, balance, movement strategies – Individually tailored and progressed • Reported no difference in fall risk, Berg balance or PD-SAS • Significant difference in ‘near’ falls, functional reach and QOL at 6 months Ongoing studies Watts et al (2008) • Movement strategies vs. Strength training vs. Social activity/education group – 1 supervised and 1 unsupervised session pw for 8 weeks Canning et al (2009) • Strength and balance training plus cueing strategies vs. Usual care Goodwin et al (2011) • N=130 • 10 sessions group strength and balance training vs. usual care – Individually tailored and progressed – Home exercises twice weekly • Non-significant difference in fall rate, QOL, TUAG or household physical activity • Significant difference in Berg balance, recreational physical activity and FES-I Conclusions • Falls are a common problem for PwP • There is evidence that some fall risk factors can be improved with exercise interventions • To date, there has been limited research into reducing falls among PwP – 3 unsupervised home exercise sessions pw for 6 months with choice of monthly group or home visit to progress Thank you for listening! [email protected] 3 9/15/2011 Targeting Muscle Force Production to Reduce Hypokinesia in PD Acknowledgements • Participants • Movement Disorders Team – – – – – Bo Foreman, PT, PhD Jim Ballard, PT, DPT A Amy Bl Black, k PTA John Steffens, MD Paul House, MD • Funding Agencies – Davis Phinney Foundation / PDF – APDA – NIH Muscle function is reduced in older adults • Skeletal muscle sarcopenia is epidemic – Reduced muscle size and strength g Weakness in neurologic disease • Stroke – (Canning et al., 2004; Nadeau et al, 1999) • Multiple Sclerosis – (Lambert et al., 2001; Petajan et al., 1996) • Amplified in weightbearing extensor muscles • Cerebral Palsy • Inactivity plays an important role • Parkinson’s Disease Hypokinesia Dromey et al., 2010 – (Fowler et al, 2001; Dodd et al., 2003) • Weakness in PD: – In multiple muscle groups (quads, hamstrings, PF, DF) – At varied contraction velocities, contraction types – Glendinning & Enoka, 1994; Nogaki et al., 2001; Pedersen et al., 1997; Yanagawa et al., 1990 Our view of hypokinesia Morris et al.; Falvo and Earhart, 2008; Allen et al., 2010 1 9/15/2011 Does LE resistance training work? Alterations of Muscle Structure and Function • Mild PD – Force increases with hypertrophy • Moderate PD – Force increases without hypertrophy • In-direct support for better PNS/CNS function? Additional references: Falvo et al., 2008; Allen et al., 2010; Schilling et al., 2010 Specific alterations of muscle structure Lean / AT asymmetry between limbs Lean tissue AND intramuscular AT may respond to resistance training Health status changes Clinical Implementation • Mode of contraction (concentric / eccentric?) • Intensity (high speed, 60% 1 RM, 80% 1 RM?) • Frequency (2x/wk, (2x/wk 3x/wk?) • Duration (8, 12, 16 weeks, on-going?) Hirsch et al., 2003; Dibble et al., 2006, 2009; Falvo et al., 2008; Hass et al., 2007; Allen et al., 2010; Schilling et al., 2010 2 9/15/2011 Clinical implementation Efficacy across muscle groups / tasks • Underdosing is the standard of care • Optimal mode & intensity unclear Vaughn et al., 2011 – High intensity or High Speed – Eccentric / Concentric • Disease severity may limit response* Troche et al., 2010; Pitts et al., 2009 *Dibble et al 2006, 2009; Foreman et al., 2011 Resistance exercise: Training the muscle and the brain Questions and Discussion 3 7/11/2011 Physical Therapy in Parkinson’s disease: Issues for consideration and how to proceed? Prof. Gert Kwakkel Chair ‘Neurorehabilitation’, VU University Medical Center, Amsterdam ( [email protected] ) Aim of physical therapy in PD The role of the physical therapist is to maximize functional ability and minimize secondary complications by using movement therapy based on a framework of education and support for the whole person . Deane KHO et al, , The Cochrane Database of Systematic Reviews, 2001, Issue 3. The multidisciplinary Parkinson-team • Neurologist • Parkinson nurse Permanent members „Relational coordination‟ • Social worker • Speech therapist • Physical therapist • Occupational therapist • Rehabilitation physician • Neuropsychologist/psychiatrist Elective members • Dietitian • Sex therapist •… Dimensions that determines quality of ‘relational coordination’ between professionals working in a PD team Surgical Performance Index: Is an quality index reflecting patients’ satisfaction, post-operative freedom from pain and post-operative functioning, as well as efficiency: number of inpatient days in the hospital Shared goals Shared knowledge Mutual respect Helpfulness Frequent communication (timely, accurate, problem solving) Increment in shared goals, shared knowledge, helpfulness and mutual respect of surgical team Hoffer Gittell et al, Medical Care 2000:38:807-819 Hoffer Gittell et al, Medical Care 2000:38:807-819 1 7/11/2011 How to proceed? Identified RCTs in the domain of PT (n=46; 2647 subjects) • …understand the dimensions that defines the quality of a PD team • …more trials in particular neglected fields such as upper limb function, bed mobility, prevention of falls in PD Focus of identified RCTs (no of subjects N=46): How to proceed? • …understand the dimensions that defines the quality of a PD team • …more trials in particular neglected fields such as upper limb function, bed mobility, prevention of falls in PD • …further improve methodological quality of trials and future designs Number of RCTs (n=46) satisfying the 10 items of the PEDRO-scale PEDRO score Positive association between year of publication and PEDro score = 0.319 (p=0.031) Other main flaws of submitted clinical trials: • A number of submitted trials reported and discussed the withingroup changes and not the between group-differences. • A number of submitted trials failed to discuss the clinical relevance of their significant outcomes. • Number of studies failed to define the primary measurement of outcome and suffer from multiple testing (i.e., type I error). • Almost all RCTs are underpowered and suffer from type II error. 2 7/11/2011 Daily (dopamine-dependent) activity levels between patients A, B and C On / Off phenomena in patients with PD. assessment 1 Statistical power of a study with 2 groups in which patients are randomized into a 1:1 ratio (r): assessment 2 With one post-intervention assessment after randomisation: (Z (1-α /2 ) + Z (1 – β ) )2 x σ2 x ( r + 1) N= v2 x r With repeated assessments (T) after randomisation: (Z (1-α /2 ) + Z (1 – β ) )2 x σ2 x ( r + 1) x { 1 + T-1) x ρ} N= v2 x r x T Applied measurements for evaluating PT interventions in 46 RCTs How to proceed? • …understand the dimensions that defines the quality of a PD team • …improve methodological quality of trials and future designs • …more trials in particular neglected fields such as upper limb function, bed mobility, prevention of falls in PD • …need for consensus on a core set of outcomes according to constructs of ICF How to proceed? Pathology Body function & structure (impairments) UPDRS II and III Modified Hoehn &Yahr MDS MMSE Brixton Cognistat ROM Muscle Strength Dynamometry Sensory Orientation Test Physical condition Finger and heel taps BORG Scale VO2-peak Respiratory Exchange Ratio Zung Depression Scale FSS, MFIS Becks Depression Scale HADS SPES/SCOPA Activities (limitations) participation (restrictions) •UPDRS-ADL •PDQ-39 •Posture & Gait •SIP-68 •Turning in bed •SF-36 •Berg-Balance Scale •PSI-PD •Timed-Get-up & Go test •M-PAS •10-mWMT (max. or comf.) •Care Giver Strain •Step and stride length Index •Cadence / Stepping frequency •EQ-5D; •Nine Hole Peg Test •PDQL •FOGQ, •SA-SIP •(Near) falling, FES •SPES/SCOPA •NE-ADL •BI, FIM, PAS, HAP, •SPDDS (Self Assessment PD Disability scale); PPOS •2 and 6 min. walking test •Functional Reach test •Webster rating scale •North Western University Disability Scale •Browns Disability Score •Becks Disability Inventory Posture & Gait Score (0-20) • …improve methodological quality of trials and future designs • …more trials in particular neglected fields such as upper limb function, bed mobility, prevention of falls in PD • …need for dose-response trials • …need for consensus on a core set of outcomes according to constructs of ICF • …need for better understanding the underlying construct of most measurements in terms of body functions, activities and participation (e.g., parts of the UPDRS) Stebbins GT, Goetz CG, Flournoy T. Unified Parkinson's Disease Rating Scale: reliability and factorial validity of the motor exam section. Annals of Neurology, 1991;30:298-298. 3 7/11/2011 Posture & Gait Score (0-20) standing lying walking sitting % of walking periods > 10 seconds 24 hour activity profile Lim et al, Neurorehabil Neural Repair. 2010 Jun;24(5):469-77. What is changing when PD patients benefits from PT? How to proceed? • …improve methodological quality of trials and future designs • …improve methodological quality of trials and future designs • …more trials in particular neglected fields such as upper limb function, bed mobility, prevention of falls in PD • …need for consensus on a core set of outcomes according to constructs of ICF (allowing meta-analysis) • …need for better understanding the underlying constructs in terms of ICF …understand what patients learn when they improve in terms of activities such as gait, turning and sit-to-stand activities. Behavioral compensation Substitution Improve motor performance Restitution / Substitution What is changing when PD patients benefits from PT? Lack of execution of automatic motor control Rerouting through nonautomatic pathways Neural repair Behavioral compensation Substitution Restitution Improve motor performance 4 7/11/2011 Effects of treadmill training (18 cm/s, 1 h per day for 5d /week) in MPTP-lesioned mouse (n=12) may upregulation of DA-D2R expression in dorsal striatum Exercise-induced neuroplasticity in MPTP-lesioned adult animals TH-cells↑ Dopamine↑ BDNF↑ Striatal receptor expression↑, Striatal Dopamine transporter (DAT)↑ synaptogenesis↑ IGF-type 1↑ Neurogenesis↑ DA-D2R↑ Exercise/ Training VEGF↑ Exercise-induced neurotrophic factors and signaling cascades Motor behavior ↑ Neurocognition ↑ Angiogenesis↑ Adaptive neuroplasticity Improved outcome e.g.: Vuckovic et al, Movement Disorders, Vol. 25, No. 16, 2010, pp. 2777–2784 Smith et al, Brain Research 2011; 1386:70-8 Cobett & Murphy, Narture reviews 2009 Dec;10(12):861-72 Vuckovic et al, Movement Disorders, Vol. 25, No. 16, 2010, pp. 2777–2784 Smith et al, Brain Research 2011; 1386:70-80 ‘Need for translational research in PD’ Thank you for your attention! Basic science Experimental medicine ‘proof of concept’ Clinical Trials & Monitoring change Clinical Practice ‘What do patients with PD learn?’ “Integrating pre-clinical and clinical evidence from scientists working together in the field of neuroscience & neurorehabilitation.” Kwakkel G. Towards integrative neurorehabilitation science. Physiother Res Int. 2009 Sep;14(3):137-46. 5 11-7-2011 Parkinson’s disease Broad range of symptoms Requires expertise Different clinical presentation Evidence into practice: the ParkinsonNet concept Maarten J. Nijkrake, PhD, PT Parkinson Centrum Nijmegen (ParC) UMC St Radboud, Nijmegen, The Netherlands High impact on QoL (both physical and mental) Involvement of many professionals Extensive use of health system Expensive disease ? Requires evidence for interventions Requires collaboration and integration of care Improving allied health care in PD 1. Evidence for allied health 2. Barrier: referrals 2. Barrier: expertise of professionals Low use of care for problems that potentially can be treated Nijkrake et al, Mov Disord. 2009 Maarten Nijkrake Copyright UMC St Radboud 2011 Not many PD experts, low PD patiënt volumes and unfamiliarity with other disciplines Nijkrake et al, Mov Disord. 2009 1 11-7-2011 3. ParkinsonNet concept 1. Selection of professionals 3. ParkinsonNet concept 1. Selection of professionals 2. Increase expertise 3. Stimulate collaboration = area = physiotherapist = neurologist 3. Increase expertise 4. Make expertise visible = area = physiotherapist = neurologist 3.Web-based communication (www.parkinsonnet.nl) Expertise Decision supporting health record for physiotherapists Visible expertise by using a search engine Communication - secure mail option - disussion forum - wiki’s - blog’s by PD experts - Basic course - Ongoing seminars - Structured referrals 3. Pilot results 4. Cluster randomized trial Randomisation of 16 area’s Significant increases in guideline adherence and patiënt volumes Number of patients Patiënt volume (mean ParkinsonNet area’s S.E.M.) 1 Haarlem 2 ‘t Gooi 3 Delft 4 Gouda 5 Den Bosch 6 Eindhoven 7 Oss-Uden-Veghel 8 Doetinchem 25 20 15 10 5 0 2003 2004 2005 Control area’s 9 10 1 11 12 2 3 4 13 14 15 5 7 6 16 8 9 Alkmaar 10 Hoorn 11 Den Haag 12 Zoetermeer 13 Ede 14 Apeldoorn 15 Deventer-Zutphen 16 Venlo 2006 Nijkrake et al, Mov Disord. 2010 Maarten Nijkrake Copyright UMC St Radboud 2011 2 11-7-2011 4. Flowchart ParkinsonNet trial 4. Outcomes and endpoints Follow up of 6 months Health benefits Quality of care Control area’s 358 patients 341 patients Visit neurologist Total health costs No physiotherapy 4. Results Parkinson-Net area’s ParkinsonNet physiotherapy Visit neurologist General physiotherapy No physiotherapy General physiotherapy 5. Nationwide implementation Significant reduced costs and no effects on health status 65 ParkinsonNet networks 748 physiotherapists 289 speech therapists € 200 €0 -€ 200 -€ 400 -€ 600 -€ 800 -€ 1.000 -€ 1.200 -€ 1.400 265 occupational therapists €727 saved for each patient over 6 months 82 dieticians 54 psycho-social professionals Munneke et al, Lancet Neurol. 2010 5. Patient empowerment (www.mijnzorgnet.nl) Connect Get in contact with patients, caregivers and professionals Share Share knowlegde, information and experiences Maarten Nijkrake Copyright UMC St Radboud 2011 5. Worldwide implementation Find Find information concerning PD 3 11-7-2011 Contact information Maarten Nijkrake [email protected] Maarten Nijkrake Copyright UMC St Radboud 2011 4 14-7-2011 • Patients rarely empowered as treatment providers • Patients as “subjects” or “objects” of research • PT conducted in hospital settings Community-based participatory rehabilitation and research: peer approach Carolinas Medical Center Charlotte, North Carolina 28203, USA [email protected] www.ccph.org YES administered by Peer-topeer? Resistance Student nurse No Comella 1994 2-3 OP Martial arts PT No Bridgewater 1997 1-3 OP Aerobic dance PT No Bridgewater 1996 1-3 OP Aerobic dance PT No Schenkman 1998 2-3 OP Spinal Flexibility PT No Miyai 2002 2.5-3 OP Treadmill PT/OT No Protas 2005 2-3 OP Treadmill PT No Ellis 2005 2-3 OP Motor training PT/PT Student No - OP QiGong MD No Burini 2006 2-3 OP QiGong/ ergometer PT No Toole 2006 1-4 CommunityPlaced Treadmill professional No Toole 2000 1-4 CommunityPlaced Resistance/ balance professional/ PT No Ashburn 2007 2-4 Home-Placed Motor training PT No Hirsch 2003 1-2 CommunityPlaced Resistance/ balance Trained care-partners Yes Failure to involve patients as partners in research or delivery of communitybased exercise NO Model 1 Model 2 Using principles of CBPR to plan the exercise intervention Traditional approach (healthcare professional) to plan the exercise intervention. Using peer-to-peer approach to administer the exercise intervention Using peer-to-peer approach to administer the exercise intervention Model 3 NO Exercise Intervention Out patient Schmitz-Hubsch 2005 Community-Based Participatory Research Approach Peer-ToPeerApproach Setting 2-4 Author Mark A. Hirsch, PhD Department of Physical Medicine and Rehabilitation YES H&Y Palmer 1886 Traditional approach (healthcare professional) to plan the exercise intervention. Using traditional approach (physiotherapist/ fitness professional) to administer the exercise intervention Using traditional approach (physiotherapist/ fitness professional) to administer the exercise intervention CBPR approach to community change Command/ control Collaborative/ peer involvement Organizational Hierarchy Dispersed/ network structure Who has relevant Health professionals Patients information? Who has The people at the top of Community authority to make the organization final decisions What is the basis Dictated by leaders Performance on achieving for accountability shared goals and control? Where does it Works well in defined Works well for diverse work best? hierarchy; works groups and when poorly when innovation innovation and creativity is important are critical TAKE HOME POINTS Model 4 Using principles of CBPR to plan the exercise intervention Failure to involve physiotherapists and researchers in delivery of community-based exercise Why Peer-to-Peer? Why CBPR? Failure to involve care-partners as collaborators in research or delivery of communitybased exercise Models to plan and deliver community-base d exercise interventions for people living with Parkinson’s disease Failure to engage community partners as collaborators in research or delivery of communitybased exercise Potential mechanisms of exercise-induced recovery of function in animal models of exercise and PD Community-Based Participatory Research Approach YES YES PeerToPeerAppro ach NO NO Model 1 Model 2 Using principles of CBPR to plan the exercise interv ention Traditional approach (healthcare professional) to plan the exercise interv ention. Using peer-to-peer approach to administer the exercise interv ention Using peer-to-peer approach to administer the exercise interv ention Model 3 Model 4 Using principles of CBPR to plan the exercise interv ention Traditional approach (healthcare professional) to plan the exercise interv ention. Using traditional approach (physiotherapist/ fitness professional) to administer the exercise interv ention Using traditional approach (physiotherapist/ fitness professional) to administer the exercise interv ention Source: (1) Fisher BE. J Neurosci Res. Aug 1;77(3), 378-90 (2004); (2) Petzinger GM. J Neurosci. May 16;27(20), 5291-300 (2007) ; (3)Vuckovic MG. Movement Disorders. 25(16), 2777-2784 (2010) ; (4) Tillerson JL. J Neurosci. Jun 15;21(12), 4427-35 (2001) ; (5) Tillerson JL. Neuroscience. 119(3), 899-911 (2003) ; (6) Mabandla M. Metab Brain Dis. Jun. 19(1-2), 43-50 (2004); (7) Lau YS. Neuroscience. 33(7), 1264-1274 (2011) ; (8) Al-Jarrah M. 26(4), 369-373 (2010) ; (9) Poulton NP. Exper Neurol. 193,181-197 (2005). Cited in: Hirsch et al., Neurodegenerative Disease Management, October 2011, in press 1 14-7-2011 Our unique opportunity Our unique opportunity • • • • • • • • 33 hospitals Expansive geography 6000 physicians Ethnic, socioeconomic and demographic diversity • > 9,000,000 annual patient encounters Traditional research model • Scientists/ healthcare professionals as “experts” Community-based participatory approach Models to plan and deliver community-base d exercise interventions for people living with Parkinson’s disease Community-Based Participatory Research Approach • Public disconnected from research agenda YES • True community needs unknown • Patients as “subjects” or “objects” of research PeerToPeerAppro ach NO Growth in funding 12,500+ patients enrolled 900+ clinical trials < 2% use principles of community-based participatory research (CBPR) or participatory action research (PAR) methodologies YES NO Model 1 Model 2 Using principles of CBPR to plan the exercise interv ention Traditional approach (healthcare professional) to plan the exercise interv ention. Using peer-to-peer approach to administer the exercise interv ention Using peer-to-peer approach to administer the exercise interv ention Model 3 Model 4 Using principles of CBPR to plan the exercise interv ention Traditional approach (healthcare professional) to plan the exercise interv ention. Using traditional approach (physiotherapist/ fitness professional) to administer the exercise interv ention Using traditional approach (physiotherapist/ fitness professional) to administer the exercise interv ention “A collaborative approach to research that equitably involves all partners in the research process and recognizes the unique strengths that each brings”. Models to plan and deliver community-base d exercise interventions for people living with Parkinson’s disease Community-Based Participatory Research Approach YES YES -- W.K. Kellogg Foundation, 2001 “Research on health promotion, disease prevention, and health disparities that is jointly conducted by communities and researchers” PeerToPeerAppro ach NO NO Model 1 Model 2 Using principles of CBPR to plan the exercise interv ention Traditional approach (healthcare professional) to plan the exercise interv ention. Using peer-to-peer approach to administer the exercise interv ention Using peer-to-peer approach to administer the exercise interv ention Model 3 Model 4 Using principles of CBPR to plan the exercise interv ention Traditional approach (healthcare professional) to plan the exercise interv ention. Using traditional approach (physiotherapist/ fitness professional) to administer the exercise interv ention Using traditional approach (physiotherapist/ fitness professional) to administer the exercise interv ention -- NIH, 2004 CBPR - Involving patients, care-partners and other community partners in all aspects of conducting the research Collaborative Framework Identify Health Concerns Disseminate Information Study Design 1. Developing the question.……focus groups 2. Writing the research protocol Community Participation 3. Community Advisory Board Data Collection Recruitment 4. Administering the treatment (peer-to-peer) 5. Data interpretation (member check) 6. Data dissemination (town hall meeting) 7. Sustainability of the program Peer-topeer approach Intervention Design Develop Measuring Instruments 2 14-7-2011 Carolinas ParkinsonNet Initiative Parkinson Association Carolinas NIH studies with CBPR component 45 Parkinson Support Groups 263 studies / $114 million 300 33 CHS facilities Research Core 200 N Community Advisory Board Mecklenburg Department of Health University of North Carolina Department of Communication Department of Kinesiology Department of Biology 38 10 09 20 08 20 07 20 06 20 05 20 20 20 20 04 0 02 YMCA’s Of Greater Charlotte 100 03 PM&R & Neurology 20 Area YMCA’s YEAR Source: RePORT (Research Portfolio Online Reporting Tool). NIH, 03/24/2011. Key Principles of CBPR Why Peer-to-peer? Models to plan and deliver community-base d exercise interventions for people living with Parkinson’s disease – More patients than physiotherapists Community-Based Participatory Research Approach YES – Patients / care-partners rarely empowered – Importance of social networks in exercise adherence NO Model 1 Model 2 Using principles of CBPR to plan the exercise interv ention Traditional approach (healthcare professional) to plan the exercise interv ention. Using peer-to-peer approach to administer the exercise interv ention Using peer-to-peer approach to administer the exercise interv ention Model 3 Model 4 Using principles of CBPR to plan the exercise interv ention Traditional approach (healthcare professional) to plan the exercise interv ention. Using traditional approach (physiotherapist/ fitness professional) to administer the exercise interv ention Using traditional approach (physiotherapist/ fitness professional) to administer the exercise interv ention YES PeerToPeerApproa ch NO – Sustainability • Fostering trusting relationships • Building on strengths and resources within the community • Promoting co-learning and capacity building among all partners • Utilizing equitable processes and procedures Models to plan and deliver community-base d exercise interventions for people living with Parkinson’s disease Community-Based Participatory Research Approach YES YES PeerToPeerAppro ach NO NO Model 1 Model 2 Using principles of CBPR to plan the exercise interv ention Traditional approach (healthcare professional) to plan the exercise interv ention. Using peer-topeer approach to administer the exercise interv ention Using peer-to-peer approach to administer the exercise interv ention Model 3 Model 4 Using principles of CBPR to plan the exercise interv ention Traditional approach (healthcare professional) to plan the exercise interv ention. Using traditional approach (physiotherapist/ fitness professional) to administer the exercise interv ention Using traditional approach (physiotherapist/ fitness professional) to administer the exercise interv ention Source: Viswanathan M et al. Community-based participatory research: assessing the evidence. Evidence report/technology assessment (Summary) 2004. pp. 1–8. Reference: Hirsch MA, Iyer S, Englert D, Sanjak M. Promoting community-based participatory research exercise programs in Parkinson’s disease. Neurodegenerative Disease Management, in press. Thank you! 3 11-7-2011 Evidence-based PT guidelines 2004 • Decision supporting • Graded recommendations • 4 Quick reference cards European guideline for Physiotherapy in Parkinson’s disease High quality In English, for free! www.appde.eu Amsterdam, 20 June 2011 14.30-17.30u Core areas PT in PD VIDEO: Cueing Keus, Bloem et al., Mov Disord 2007;22:451-460 Quick reference cards Gait Dexterity Balance & falls Transfers Physical capacity Posture Graded recommendations According to the level of evidence Main recommendations Cognitive movement strategies Compensation to improve transfers Cueing Use of external rhythms to improve gait Exercise To improve strength, aerobic capacity, range of movement and balance Exercise Cues Cognitive movement strategies (Level 2 = 2 controlled studies) 1 11-7-2011 www.APPDE.eu Guideline Implementation Europe Nijmegen (NL), 4 & 5 June 2010 Need for update Update into European guideline? 70 60 Publications 50 40 30 20 10 0 1980 1985 1990 1995 2000 2005 2010 Year European guideline! Steps guideline development Project leaders: Samyra Keus & Marten Munneke Grant: KNGF, Royal Dutch Society for Physical Therapy Support: •European Region WCPT •APPDE •EPDA 18 countries! Available: 2012 Unmet needs & barriers Key questions Systematic literature search Conclusions Other considerations Recommendations New: patient involvement from start • Writing group • Reading Group • Web-based (open) 2 11-7-2011 Guideline products 1. Guideline • Clinical practice guidelines • Review of the evidence • • • MDS referral criteria Barriers in current care Patients • Focus groups with patients (Vd Eijk, Faber) Appendices • Referral PT survey patients (Ketelaar) QRC • EPDA collaboration 2. Quality indicators 3. Patient information 4. Advice for national guideline adaptations PTs • Focus group interviews & web-based forum • European survey 5. Publication Main patient barriers EU survey - Goal • self-management support • active involvement decision taking • Identify knowledge barriers • multidisciplinary collaboration • Identify gaps in the KNGF-guideline • PD experts 1. European guideline: new key questions 2. Guideline implementation • Identify future experts • Indentify barriers in care organisation • Identify knowledge barriers (education) EU survey – Development process EU survey – Contents Aug – Nov 2010 Part 1 – General Based on: • PT characteristics • existing questionnaires: Dutch evaluation of care • PD expertise (also 1 question GoogleDocs = Part 0) • KNGF guideline: competences • Barriers in care • >0 PD pts/yr: what would you like to see (different) in the Feedback: APPDE members guideline? Pilot web-based form: international PT students 3 11-7-2011 EU survey – Contents EU survey – Results Countries participating: 16 / Languages: 10 Part 2 – Expert (>4 PD pts/yr) • Measurement tools: frequency & barriers • Diagn. & therap. Process: frequency & competences • Use of KNGF guideline Time week 0: Feb 2011 (Ireland) - June 2011 (Cyprus – not included yet) Response random sample (n=9,000): 3137 (34.9%) PD pts 1-4: 4 PD pts / yr: 632 (23.0%) + 842 experts General barriers optimal care • limited experience treating PD • limited time session • limited availability local exercise groups • limited opportunity to discuss w/o health professionals • referral too late Hoehn & Yahr stages patients treated 40% 35% 30% 25% 20% 15% 10% 5% 0% Use of KNGF guidelines: 4% 1 2 3 4 5 Hoehn & Yahr Measurement tools Use of measurement tools 2 UPDRS, part 3: Motor Examination Do you use measurement tools? (n= 628 ‘experts’) Unified Parkinson’s Disease Rating Scale (UPDRS), part 2: ADL Yes No 55% 45% Tinetti-Balance and Gait Evaluation, Part 2: Gait Tinetti -Balance and Gait Evaluation part 1: Balance Timed up and go test (TUG) Sickness Impact Profile (SIP) Because: • Supports diagnostic process • Supports clinical reasoning & treatment planning • Important to present treatment results Sensory Orientation Test (SOT) Self-assessment Parkinson’s Disease Disability Scale (SPDDS) 1 always Retropulsion test 2 usually 3 sometimes Phone FITT 4 Never Parkinson’s Disease Questionnaire-39 (PDQ-39) Parkinson’s Activity Scale (PAS) Patient Specific Index for Parkinson’s Disease (PSI-PD) Parkinson’s Disease Quality of Life Scale (PDQL) But: Medical Outcomes Scale Short Form-36 (SF-36) Lindop Parkinson's Assessment Scale (LPAS) • Time consuming • > 75 different measurement tools used! LASA Physical Activity Questionnaire (LAPAQ) 0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100% 4 11-7-2011 Other specific barriers • Optimum time referral • Patients expectations • Cognitive limitations: implications for PT treatment • Late stage treatment • Use and interpretation results measurement tools • Continuity of care: what, when, hoe to discuss? • Collaboration with other health care providers Launch New European Guideline Stay informed, get involved! www.appde.eu [email protected] 5 11-7-2011 All participants The presenters 1 11-7-2011 Fruitful discussions We thank you for your participation! 2