1. Patient – Physician Relationship
Dr Maria Gaughan, Neurology SpR

2. Patient-Doctor Relationship
So we’ll start you on this once monthly infusion therapy ’But I’m going backpacking in Australia for the next ’

3. MS Lifelong management
Increased complexity and decision making more challenging – evolving risk-benefit relationship
Treatment Options
Glatiramer Acetate
Interferon
Fingolimod
Tecfidera
Terfluonimod
Natalizumab
Alemtuzumab
Ocrelizumab
Side Effects
Multidisciplinary Team
Long term relationship with your physician
Cladribine

4. Future MS care: a consensus statement of the MS in the 21st Century Steering Group
Steering Group – MS Experts and Patient Representatives
Vision: Full access to personalised treatment, with reimbursement, to achieve freedom from disease
Principles
Personalised care
Patient engagement
Commitment to research
Regulatory body education and reimbursement
New endpoints in clinical trials
More therapy options
Met in 2012, published in 2013 – vision for MS care in the new century across the developed and developing world
Patients acting as advocate – example of HIV community, creating awareness

5. Patient engagement ‘Blockbuster drug of 21st century’ (Chase 2013)
Patients have better outcomes when they play a role in their healthcare (Center for Advancing Health, 2014)
Engaging with multiple team members and different specialties, who is the linchpin of care?
Improved clinical outcomes
Reduced healthcare consumption
Improved employee satisfaction
Including QoL and PROs in primary and secondary endpoints in research
HIV
Breast cancer
Myocardial infarction
New therapies, multiple systems
Who is the linchpin of patient care?
Patient versus physician

6. What impacts on QoL and is this addressed?
ADLs
Well-being
Satisfaction on life
Vision
Gait and mobility
Sexual dysfunction
Mental health
Cognitive dysfunction
Bladder/bowel
Fatigue
Pain
Sleep
Up to 75% of patients with MS report sexual difficulties, rarely asked in clinic

7. What influences patient engagement?
Patient related – patients knowledge/beliefs, demographic characteristics, emotions and coping style
Illness related – symptoms, treatment plan, patient’s prior experience, illness severity
Physician related – knowledge and beliefs, role
Healthcare setting
Interaction between patient and physician
Healthcare setting – easy to access physically, easy to access
Is there an MDT -

8. Health belief model Perceived susceptibility to problem
Self efficacy
Perceived threat
Perceived susceptibility to problem
Perceived seriousness of consequences of problem
Outcome Expectations
Perceived benefits of specific action
Percieved barriers to taking action
Impact on doctor and patient

9. Why is the doctor-patient relationship important?
Long-term
Trust
Compliance
Monitoring
Appropriate treatment
Well-being

10. More than just the physician-patient relationship
MDT
Doctor
Nurse Specialist
Physiotherapist
Occupational therapist
Social Worker
Administrative Staff
Urologist
Psychiatrist
Immunologist
Social support
Family
Friends
Colleagues
MS Society
Online support
Originally I believed that the doctor-patient relationship at centre

11. Patient – centred approach
Doctor
MS Nurse Speciailist
Phsyiotherapist
Social worker
Occupational therapist GP
Urologist
Psychologist
Public health nurse
Immunologist, haematologist, radiologist, radiographer, family, friends, MS society

12. What can doctors do?

13. What can doctors do? Listen Identify patient’s priorities
Review current issues
Confirm current management plan
Ask directly regarding common issues such as mood/compliance/family planning/sexual health and function/cognition
Keep door open – have a clear plan for patient access
Listen!
Introduction of contact cards
In UK – policy of majority of NHS hospitals that patients receive a copy of their GP letter,

14. What can patients do? Prepare for appointment
List questions particularly if you’re worried you’ll forget
Bring a family member to support or advocate if you wish to
Ensure you know the current rationale for treatment
Be open to changing your mind
Follow up on clinic appointment

15. General lifestyle advice
Smoking
Nutrition
Exercise
Sleep
Work
Family

16. Choosing a treatment with your doctor
Typically have a few weeks to consider options
Ask what your options are
Ask if the doctor has a particular preference and why
Do you have any major concerns in relation to medication?
What monitoring will be required?
What are they typical side effects and how would they be managed?
What will happen if it doesn’t work?
Review and consider

17. Can I get a second opinion?

18. Yes!
Why do you want one?
Consider discussing it with your current doctor
Facilitate transfer of information
Practicalities – can take time to access scans, forward paperwork etc.

19. Issues ‘I don’t want treatment, my doctor thinks I should’
‘So we’ll start you on this once monthly infusion therapy . . .
‘But I’m going backpacking to Australia next year . . .’
‘My MS is stable but I absolutely hate injecting, my doctor doesn’t want me to change.’
‘I can’t get in touch with anyone when I need to.’
‘No-one seems to know if I’ve progressive MS’
‘I keep telling the team about my fatigue and memory problems, but everyone ignores this.’
‘I never see the same person twice in clinic.’
‘I just want to forget I have MS.’

20. Finally
Patient at the centre of management and should have a role in directing their care
Ensure your medical team know what your priorities are
Planning a child within the next 2-3 years
Spending months – years abroad
Risk averse
Happy with risk
What side effects are intolerable to you?
Engagement can be done in an quiet way.
That might mean figuring out what your priorities are!
Don’t need to be next public face of MS

21. References
Rieckmann P, Boyko A, Centonze D, Elovaara I, Giovannoni G, Havrdova E, hommes O, Kesselring J, Kobelt G, Langdon D, LeLorier J, Morrow S, Oreja-Guevara C, Schippling S, Thalheim C, Thompson, Vermersch P. Achieving patient engagement in multiple sclerosis: A perspective from the multple sclerosis in the 21st Century Steering Group. Multiple Sclerosis and Related Disorders May 2015, Vol4 (3)
Chase D. Patient engagement is the blockbuster drug of the century. In ase D, Ed., 2013
Chow S, Teare G, Basky G. Shared decision making: helping the system and patients make quality health care decisions. Saskatoon: Health Quality Council; 2009.

22. Basche E. The missing voice of patients in drug-sfety reporting
Basche E. The missing voice of patients in drug-sfety reporting. New Engl J Med 2010; 362: 865-9
Heesen C, Kopke S, Solari A, Geiger F, Kasper J. Patient autonomy in multiple sclerosis – possible goals and assessment strategies. J Neurol Sci 2013; 331:2-9