Driving in ALS: ALS Steering Wheel Webinar with Kendra Berry

1. Webinar: Driving and ALS • December 12th, 2018 @ 1pm • Kendra Berry graduated from McGill University with a Kendra Berry graduated from McGill University with a Bachelor’s of Science in Occupational Therapy in 2001 and began working at the Royal Victoria Hospital as an occupational therapist in May 2001. Since graduating, she has maintained various roles within the McGill University Health Center. Kendra joined the multidisciplinary ALS clinic at the Montreal Neurological Institute & Hospital in 2008. Working with this clientele is challenging, but also rewarding. As an OT, she is driven by helping patients navigate through this very difficult illness. The ALS Steering Wheel was a quality improvement project that the ALS clinic implemented in September 2017. The multidisciplinary initiative has as its primary goal to promote and prolong safe driving for patients with ALS.

2. Driving in ALS: The ALS Steering Wheel Kendra Berry, BSc.OT Multidisciplinary ALS Clinic Montreal Neurological Hospital/Institute

3. Overview • CMA guidelines • SAAQ: guidelines, forms, services • Alternate means of transportation • MNH/I ALS clinic: retrospective study • ALS Steering Wheel

4. CMA Driver’s Guide 9th Edition

5. CMA Driver’s Guide 9th EditionMD’s Role • Aware of responsibility/legislated requirements • In Quebec, reporting is discretionary • Protected from legal action • Educate, identify concerns and notify authorities • If undecided, refer to specialist

6. CMA Driver’s Guide 9th Edition Medications: • Do not drive until individual response is known or side effects no longer result in impairment Cognitive Impairments: • Mild cognitive impairments require on/off road testing • Moderate-severe cognitive impairments contraindicated

7. CMA Driver’s Guide 9th Edition Nervous System: • Mild loss of muscle strength/control may benefit from adaptations • Progressive conditions require close monitoring • If accompanied by cognitive impairment should be advised to stop driving Musculoskeletal: • Impact on physical function may have negative impact on driving

8. CMA Driver’s Guide 9th Edition Respiratory Status: • 3 levels of impairment: Mild: dyspnea walking quickly/uphill Moderate: dyspnea walking few minutes/100m level ground Severe: dyspnea with dressing, too breathless to leave house • Moderate-severe impairment and supplemental oxygen at rest should have road test with supplemental oxygen • Equipment must be secured safely

9. SAAQ Guidelinessaaq.gouv.qc.ca/permis • Driving is a privilege not a right • All costs for maintaining license are at driver’s expense • Providing false/inaccurate information could lead to suspension or fine • SAAQ must be notified of change in medical status within 30 days of change in health status

10. SAAQ Guidelines • 5 health care professionals are recognized in declaring a patient unfit to drive: MD, RN, OT, psychologist, optometrist • Article 603: All health care professionals can, according to their field of expertise, notify the SAAQ of driver >14 years old that they judge is unfit to drive a motor vehicle safely given their medical conditions, deficits that are incompatible with safe driving • Article 605: No repercussions can be brought against a health care professional for having declared a patient to the SAAQ in good faith

11. SAAQ GuidelinesMD/OT Roles • Educate • Identify deficits that may compromise driving safety • Notify authorities with concerns • Direct patients to appropriate resources • Discuss driving cessation

12. SAAQHow to declare • License renewal • SAAQ- service center • SAAQ- phone, email • Adapted parking sticker

13. SAAQ Forms • M-28 • Medical profile • Completed by MD • Question 11- MD recommendation • M-5 • Visual examination • Performed with ophthalmologist/optometrist • M-57 • Functional/driving evaluation • Performed with certified OT (rehab center or private)

14. SAAQHandicapped Parking Sticker • Eligibility: persons with handicap involving loss of autonomy and compromised safety/health when mobilizing over short distances • Form completion: OT, RN, PT, MD, Optometrist, Psychologist, Special educator • Permanent and temporary conditions • Completed form and cheque must be sent to SAAQ • Parking sticker and attestation certificate will be issued by SAAQ • Parking sticker is assigned to patient, not caregiver • Parking sticker MUST ALWAYS BE VISIBLE IN WINDSHIELD

15. SAAQProgramme Adaptation Véhicule • Goal is to provide accessibility to vehicle or promote driving safety for drivers • Eligibility criteria: • Handicap at birth, illness, aging, accident(non-driving) • Resident of Quebec • Not living in healthcare network facility • Not benefiting from another program • Eligible Vehicles: • Car, SUV, minivan • 5 years or younger or good condition • Can be a leased vehicle • Process: forms, OT evaluation, medical certificate,2 estimates, adaptation, OT verification, training

16. Alternate Means of Transportation • Adapted Transport • STM, STL, RTL • Eligibility: persistent/significant incapacities and mobility limitations • Advantages: reservations, accompaniment, cost, safety • Disadvantages: delays, network time/destination limitations • Community resources • Vary across different communities • List of local resources available from CLSC SW/OT • Adapted vehicle • PAV to adapt vehicle as passenger • Purchase/rent adapted vehicle

17. Retrospective Chart Review- What we learned… • Patients not advised of responsibility to notify SAAQ of new diagnosis • Driving not always discussed early • Adaptations were underused • Triggers for on-road referral were varied, inconsistent, and did not come from any systematic evaluation or timeframes • cognitive deficits, right foot drop, hand weakness, Bipap day/night, car accident, bus driver, shoulder flexion <30°

18. Challenges in our Clinic • Many of our patients drive • Delicate issue to discuss • Often addressed by MD and OT • Approach to driving evaluation and discussion inconsistent • Patients not consistently declaring diagnosis to SAAQ • Difficult to identify physical component thresholds and indications for a repeat on-road

19. What we needed: • Systematic approach, applied to all ALS patients followed in our clinic • Kept within CMA/SAAQ guidelines • Multidisciplinary approach • Quick & easy to administer • Established guidelines of when to refer patients for on-road evaluations & adaptations • Evaluate process & success through a prospective quality improvement plan implemented in the ALS Clinic

21. ALS Steering Wheel: Action Plan

22. ALS Steering Wheel:Components Assessed FUNCTIONAL

23. ALS Steering Wheel: Worksheet

24. ALS Steering Wheel: Worksheet

25. ALS Steering Wheel: Implementation Process • Morning rounds to identify patients requiring assessment • Blue folder as visual aid for team members • Team discussion post assessment for team recommendation • Completion of necessary paperwork for on-road referrals

26. Preliminary findings Sept. 2017-Sept. 2018 • Driving has been addressed with 54 patients: 7 stopped voluntarily 3 stopped by HCP 44 screened by team • Recommendations for on-road evaluations: 29/44 16 on-road evaluations completed

27. On-Road Evaluations • Dual referrals: public and private • Wait time public vs. private Private: seen within 2 weeks Public: wait list varies from 3-9+months • 12 private evaluations completed to date

28. Private On-Road Evaluations • Private OT/certified monitor • Monitor’s vehicle used (automatic/standard) • Pre-road test: interview, physical, cognitive, “mise-en situation” in patient’s own car • Road test: SAAQ requires that test include variation of speed, familiar/non-familiar environments, non-protected left turn, circulation in rural/non-rural areas

29. Results of On-Road Evaluations Private : • 9/12 patients passed the evaluation •Recommendations included: Conditions - automatic transmission, power steering, anti-lock brakes Identification of beneficial adaptations Increased frequency of driving Follow-up time frame ranging from 3-12 months Rehab Evaluations: •2/3 patients passed the evaluation • 2 patients had vehicles adapted as driver

30. Reflections • Multi-disciplinary involvement • Easy integration into clinical practice • Structure of assessment facilitates discussing driving with patients and families • Subsidized private evaluations appreciated by patients • Advanced technology in secondary controls promote independence in presence of UE weakness • Underestimated effect of fatigue • Strong social-spiritual engagement with driving • All patients equated the ability to drive with “autonomy”

31. ALS Steering Wheel- Our Hope… • Get smarter • More consistent, sustainable approach to addressing driving safety in ALS patients • Encourage use of identified adaptations • Get wait times for evaluations reduced! • Determine if any of our clinical tests were able to predict on-road testing results • Share our results with Canadian MDC ALS Clinics Promote and prolong safe driving in ALS patients

32. SAAQ Winter Driving Safetyhttps://saaq.gouv.qc.ca/securite-routiere/comportements/adapter-conduite/conduite-hivernale/ • Clean car • Keep safe distance • Lights on • Patience Also important is getting to/from car safely!!

33. Thank you! PI: Dr. Angela Genge Project Management: Kristiana Salmon ALS Multidisciplinary Team: Rami Massie, Neurologist Ritsa Argyriou, Clinic Coordinator Toni Vitale, Nurse Clinician Nathalie Magnan, Respiratory Therapist Mia Lanno, Social Worker Maura Fisher, Physiotherapist Carla Di Gironimo, SLP Nazar Yuriv, Spiritual Care Natalie Saunders, Research coordinator Collaborators Hannah Kaneb, Medical Writer Carolle Leroux (OT) Christian Cyr (driving instructor)

34. Question & Answer Period Do you know about the ALS MEDICAL ALERT CARD? Based on a suggestion made by a member, we are pleased to present the ALS medical alert card. This card is designed for people with amyotrophic lateral sclerosis (ALS) and identifies some of the symptoms associated with the illness. The card could be useful if an incident were to occur making it pertinent to carry at all times. This card can, amongst other things, help demystify some of the signs of the illness (sometimes mistaken for inebriation) as well as to inform people about ALS, facilitating a referral to the appropriate services. The medical alert card will be able to speak on your behalf if you are not in a position to do so yourself for whatever reason.

35. Thank You! • Visit: www.als-quebec.ca • or • Contact us: • 1- 877-725-7725 (toll-free) • 514-725-2653