Rating Scales for Parkinson’s Disease African and Telemedicine Initiatives Movement Disorder Society Cameroon Christopher G. Goetz, Chicago, USA

Learning Objectives At the end of this presentation, I will: Understand the scientific justification for using rating scales in your Cameroon neurological practice for Parkinson’s disease Use the Hoehn and Yahr Stages for categorizing patients and the MDS-UPDRS for measuring severity in Parkinson’s disease Access available educational resources through the Movement Disorder Society

Outline Overview of scale usage in Movement Disorders Review of two primary scales Hoehn and Yahr stages MDS-Unified Parkinson’s Disease Rating Scale Other resources Discussion

Outline Overview of scale usage in Parkinson’s disease Review of two primary scales Hoehn and Yahr stages MDS-Unified Parkinson’s Disease Rating Scale Other resources Discussion

What do scales do for a clinician? Scales provide a numeric code for a sign or symptom Can indicate Presence (1) or Absence (0) Can indicate Severity 0-absent 1-minimal 2-mild 3-moderate 4-severe

Usual primary measures Motor Tremor Bradykinesia Rigidity Gait and balance Non-motor Depression Cognition

Scale requirements Three key attributes are needed for a good scale. Validity Reliability Responsivity Ideally, tested and validated in the given culture Training is necessary so that scales are used uniformally

Outline Overview of scale usage in Movement Disorders Review of two primary scales Hoehn and Yahr stages MDS-Unified Parkinson’s Disease Rating Scale Other resources Discussion

Hoehn and Yahr Stages Developed in the 1960’s Describes categories overall impairment Patients do not necessarily progress sequentially across all stages Internationally respected as a means of immediate global communication on patients with PD

Hoehn and Yahr Stages 0—no parkinsonism 1—Unilateral involvement only 2—Bilateral involvement; normal balance 3—Mildly impaired postural reflexes, but disability is mild or moderate 4—Postural reflexes significantly impaired— disability marked, walking not safe 5—Confined to chair or bed—no safe standing

Patient examples Extracted from Common Movement Disorders: Video educational program Harold L. Klawans, Christopher G. Goetz and Caroline M. Tanner Raven Press 1990.

Hoehn and Yahr Stages

Important points In speaking with colleagues internationally, the Hoehn and Yahr stage immediately communicates an overall picture of parkinsonism Whereas Stages 2-5 represent progressive disability, Stage 1 is not necessarily less impaired than Stage 2. With levodopa available, most patients at any one time are Stage 2 and Stage 3 If a patient has had symptoms of parkinsonism for less than 2 years and is Stage 3, rethink the diagnosis.

Outline Overview of scale usage in Movement Disorders Review of two primary scales Hoehn and Yahr stages MDS-Unified Parkinson’s Disease Rating Scale Other resources Discussion

MDS-UPDRS Designed to be a comprehensive rating of PD To cover Motor and non-Motor elements Fully validated in English version Several languages also available

MDS-UPDRS I: Non-motor Experiences of Daily Living 13 items: Interview (6) Questionnaire (7) II: Motor Experiences of Daily Living 13 items all patient questionnaire III: Motor Section - 18 items by examiner IV: Motor Complications 6 items: Interview: dyskinesias (3); fluctuations (3) Total: 50 Items (65 scores)

MDS-UPDRS Detailed instructions All scores are anchored to clinical statement: 0 = normal 1 = slight 2 = mild 3 = moderate 4 = severe Official Appendix for additional focus

MDS-UPDRS I. I. NON-MOTOR ASPECTS OF EXPERIENCES OF DAILY LIVING (nM-EDL) INTERVIEW QUESTIONNAIRE 1. COGNITVE IMPAIRMENT 1. SLEEP 2. HALLUCINATIONS 2. STAYING AWAKE 3. DEPRESSED MOOD 3. PAIN/SENSORY 4. ANXIOUS MOOD 4. URINARY FUNCTION 5. APATHY 5. CONSTIPATION 6. DOPAMINE 6. LIGHTHEADEDNESS DYSREGULATION ON STANDING 7. FATIGUE

MDS UPDRS II. MOTOR ASPECTS OF EXPERIENCES OF DAILY LIVING (M-EDL) — all part of questionnaire 1. Speech 8. Other fine motor tasks 2. Handling saliva 9. Tremor impact on activities 3. Swallowing & chewing 10. Turning in bed and 4. Feeding adjusting bed clothes 5. Dressing 11. Getting in and out of bed, 6. Hygiene car or deep chair 5. Dressing 12. Balance and walking 7. Handwriting 13. Gait Freezing

MDS UPDRS III. MOTOR EXAMINATION: 1. Speech10. Gait 2. Facial Expression11. Freezing of Gait 3. Rigidity 12. Postural Stability 4. Finger Tapping13. Posture 5. Hand Movements 14. Body Bradykinesia 6. Pronation-supination15. Postural Tremor of Hands 7. Toe Tapping 16. Kinetic Tremor of Hands 8. Leg Agility 17. Rest Tremor Amplitude 9. Arising from chair 18. Rest Tremor Consistency

MDS UPDRS IV. MOTOR COMPLICATIONS: A. DYSKINESIAS [exclusive of OFF-state dystonia] 1. Time spent with dyskinesias 2. Functional impact of dyskinesias 3. Painful off-state dystonia B. MOTOR FLUCTUATIONS 3. Time spent in the off state 4. Functional impact of fluctuations 5. Complexity of motor fluctuations

Instructions Written instructions provided for uniformity and clarity of application These instructions will be reinforced in Teaching Tape Overview description on methodology Item by item instructions

Interviewing patient/caregiver Complex questions on behavior and motor complications Present the concept being assessed Ground rules: Usual, most of the time Past week Options Any problem? (0) If yes, start with option 2 Work up or down Confirm

Video demonstration

Apathy

Questionnaire 20 questions (non-motor and motor experiences of daily living) 7 th grade reading level Source: Patient, Patient + caregiver, caregiver only Rater can explain, but not answer the questions

Questionnaire

Motor Objective evaluation (Part III) Instructions provided for testing methods Rater indicates On or OFF state If on levodopa, notes time of last dose All items are anchored with 0: normal 1: Slight 2: Mild 3: Moderate 4- Severe

Patient examples Goetz CG et al. MDS-UPDRS: scale presentation and clinimetric testing program. Mov Disord 2008;23: Goetz CG et al. Teaching program for the MDS- UPDRS. Mov Disord 2010;25: Teaching module available on MDS website:

Finger Taps

Postural Stability

Time Required: 35 minutes Original UPDRS 40 minutes MDS-UPDRS Parts Ia 10 minutes to conduct Parts Ib, II To be self administered 5 minutes to review Parts III, IV 20 minutes

Appendix Guidelines for use of additional scales for non- motor assessments Based on Task Force of PD Rating Scales publications Recommended Suggested Ongoing updates:

Teaching Program Teaching DVD developed covering entire scale Part III Certificate exercise Expert panel: S Fahn, W Poewe, CM Tanner Loaded on MDS website for annual certification as a MDS-member benefit: Training and testing available as part of this Cameroon initiative.

Training Certificate Raters will rate 4 test cases Expert panel ranges as the certification standard MDS members and participants in the Cameroon program: No charge:

Non-English Official Translations Complete and approved Completed ratings being analyzed Field testing ongoing Cognitive pre- testing Preliminary set up organization Spanish Italian French Estonian German Slovak Japanese Russian HungarianChinese Korean Hebrew Thai Dutch Turkish Hindi Portuguese Serbian Greek Polish

Non-English translations Application on MDS website Language teams will initiate process with an application Translation/back translation of English version Individual items may need to be tested Full clinimetric program initiated (350 PD patients) Data submitted to central data analysis center To qualify as official, each new translation will meet factor structure similarity to original (English) version.

Outline Overview of scale usage in Movement Disorders Review of two primary scales Hoehn and Yahr stages MDS-Unified Parkinson’s Disease Rating Scale Other resources Discussion

Rating Scales reviews by MDS Regularly published reviews of scales focusing on specific elements of PD Sleep Depression Cognition Dyskinesia Fluctuations Psychosis Dysautonomia Quality of Life Fatigue Consolidated in MDS-UPDRS Appendix on MDS website (

Learning Objectives At the end of this presentation, I now: Understand the scientific justification for using rating scales in your Cameroon neurological practice for Parkinson’s disease Use the Hoehn and Yahr Stages for categorizing patients and the MDS-UPDRS for measuring severity in Parkinson’s disease Access available educational resources through the Movement Disorder Society

Outline Overview of scale usage in Movement Disorders Review of two primary scales Hoehn and Yahr stages MDS-Unified Parkinson’s Disease Rating Scale Other resources Discussion

Acknowledgements and Future Contacts This program is supported by the Movement Disorders Society Dr. Goetz and his Chicago center are supported by the Parkinson’s Disease Foundation as a Parkinson Research Center For future contact:

The International PD and Movement Disorder Society The MDS gives you the opportunity for free MDS membership for 2 years The use of educational materials and travel grants for International Congresses The possibility of international rating scales training certificates.