MS What It s like How I Manage

MS – What It’s like, How I Manage … and a Suggestion Alexis Donnelly Patient Royal Hospital Donnybrook How many therapists does it take to change a light bulb? Wed 2 Dec 2009 RHD Talk

Overview of Talk • Introduction • My Own Experience of Living with MS • Self Efficacy • Learning and Support Infrastructures • MS Driving Licence • Evidence Accumulates • Discussion Wed 2 Dec 2009 RHD Talk 2

MS is a dreadful, cureless and worsening disease. We cannot (yet) overcome it but we can live with it. A good quality of life is possible What one fool can do, another can Wed 2 Dec 2009 RHD Talk 3

MS: The Diagnosis from Hell [1] • a little bit of you may die each day • anything could be affected • you won't know which bit • you won't know when • there is no cure (yet) • right now, things are looking up on the research front • in the meantime, there is a lot one can do… Wed 2 Dec 2009 RHD Talk 4

My Life with MS • Diagnosis: Total Shock, Reeling… • DENIAL • ACCEPTANCE • HIDE IT, • Tried physical rehabilitation abroad • WITHDRAWAL • Acquired coping skills • … • ANGER • ACCEPTANCE Wed 2 Dec 2009 RHD Talk 5

My Life with MS – Rehab • You Are Not Alone • Coping the Skills Can Be Learned, Improved, Discovered and Practiced! • Importance of Physical Exercise • Energy Conservation Techniques • Continually Learning More • Fellow patients appeared to "have their act together" Wed 2 Dec 2009 RHD Talk 6

My Life with MS - What's Important for Me • Keep a Positive Mental Attitude • Superb Partner! • Comprehensive House Adaptations • Strategic Choice of Wheelchair • Regular Bursts of Intensive Physiotherapy • Practice, Apply and Improve Lessons Learned in Rehab • Insight into Another Health System Wed 2 Dec 2009 RHD Talk 7

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SISU in Finland Sisu - a Finnish term meaning strength of will, determination, perseverance, and acting rationally in the face of adversity. • integral to understanding Finnish culture. • literal meaning "having guts", • from sisus, - something inner or interior. • long-term ability to sustain an action against the odds. • sticking to that decision against repeated failures. Wed 2 Dec 2009 RHD Talk 11

Lasse Virén – Munich Olympics 1972 Wed 2 Dec 2009 RHD Talk 12

Disaster ! . . . But SISU kicks in. . . Wed 2 Dec 2009 RHD Talk 13

More SISU. . . Wed 2 Dec 2009 RHD Talk 14

SISU Rewarded. . . Wed 2 Dec 2009 RHD Talk 15

Self-Efficacy [2] • Cognitive mechanism based on expectations or beliefs about one's ability to perform actions necessary to produce a given effect. • It is also a theoretical component of behavior change in various therapeutic treatments. (APA, Thesaurus of Psychological Index Terms, 1994) Wed 2 Dec 2009 RHD Talk 16

Self-Efficacy • Knowledge that a course of action will produce the desired effect • Reasonable belief that one can carry out that action • Modification of course of action when reasonable evidence of failure exists Wed 2 Dec 2009 RHD Talk 17

Self-Efficacy • Supposed to measure an individual’s ability to deal with challenging situations • Requires planning, learning, practice… • Widely applied (leadership, teaching, computing skills, health promotion…) • Sometimes confused with: Confidence, Skill, Experience, Effort, Perseverance and Resilience Wed 2 Dec 2009 RHD Talk 18

Albert Bandura Wed 2 Dec 2009 RHD Talk 19

Mechnisms Underlying Self-efficacy Wed 2 Dec 2009 RHD Talk 20

Sources of Self-efficacy Wed 2 Dec 2009 RHD Talk 21

Self Efficacy and MS Rehab • Mostly a Predictor of self-reported health status [3] and Adherence • Sometimes a Mediator / Moderator [4] [5] • Why Not Intervene to Improve Self-efficacy? (widely done in other application areas ECDL) Wed 2 Dec 2009 RHD Talk 22

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Irish Rugby Team -- RWC 2007 Game over Dream over Start over Wed 2 Dec 2009 RHD Talk 24

Irish Rugby Team -- 6 Nations 2009 Wed 2 Dec 2009 RHD Talk 25

Sources of Self-efficacy Wed 2 Dec 2009 RHD Talk 26

Boks humbled at Croker -- Nov 2009 Wed 2 Dec 2009 RHD Talk 27

Motl et al [6] Motl, R. W. , Mc. Auley, E. & Snook, E. M. , 2007. Physical activity and quality of life in multiple sclerosis: Possible roles of social support, selfefficacy, and functional limitations. Rehabilitation Psychology, 52(2), 143 -151. Wed 2 Dec 2009 RHD Talk 28

Motl et al Wed 2 Dec 2009 RHD Talk 29

Stuifbergen et al [4] Stuifbergen, A. K. , Seraphine, A. & Roberts, G. , 2000. An explanatory model of health promotion and quality of life in chronic disabling conditions. Nursing Research, 49(3), 122. Wed 2 Dec 2009 RHD Talk 30

Stuifbergen et al Wed 2 Dec 2009 RHD Talk 31

Mc. Auley et al [7] Mc. Auley, E. et al. , 2007. Enhancing physical activity adherence and well-being in multiple sclerosis: a randomised controlled trial. Multiple Sclerosis, 13(5), 652 -659. Wed 2 Dec 2009 RHD Talk 32

Mc. Auley et al • accumulating support for the role of selfefficacy • self-efficacy and enjoyment correlated with adherence • targeting self-efficacy is a viable strategy for increasing physical activity and exercise behaviour in individuals with MS Wed 2 Dec 2009 RHD Talk 33

Mc. Auley et al – Design • standard care exercise group (n =13) • efficacy enhancement exercise group (n =13) • measure Self-efficacy, Well-being, Exercise adherence, enjoyment, affect and perceived exertion • 3 -month physical activity program, under supervision of trained exercise leaders, • 3 times a week for 1 hour session (10 -minute warm-up, 10 -minute cool-down) - MS stretching exercises Wed 2 Dec 2009 RHD Talk 34

Mc. Auley et al – Standard Exercise • general benefits associated with increased physical activity; • strategies for preventing and treating exerciserelated injuries ; • the contribution of proper nutrition to good health • health allergies and strategies for minimising the severity of attacks; • importance of social support and networks within and outside the exercise environment - 'buddy groups’, DVD Wed 2 Dec 2009 RHD Talk 35

Mc. Auley et al – Efficacy Enhancement • the importance of realistic, challenging, and attainable goals; • strategies for overcoming common barriers to initiation and maintenance of exercise ; • monitoring of performance feedback; • strategies to promote realistic outcome expectations and • importance of social support and networks within and outside the exercise environment. Wed 2 Dec 2009 RHD Talk 36

Mc. Auley et al - Results • efficacy enhancement participants reported that they worked harder and that exercise made them feel better • individuals with stronger exercise selfefficacy, reported more enjoyment following exercise, demonstrated significantly greater adherence Wed 2 Dec 2009 RHD Talk 37

Patient Education Rehabilitation Pays for Itself! [8] • Krauth, C. et al. , 2005. Health Economic Evaluation of Rehabilitation Programmes in the „Rehabilitation Sciences” Research Funding Programme in Germany Rehabilitation © Georg Thieme Verlag KG Stuttgart, 44, e 46 -e 56. Wed 2 Dec 2009 RHD Talk 38

Krauth et al [8] - Savings Cost per patient (€) Direct Savings (€/pat) Indirect Savings (€/pat) Total Savings (€/pat) 12 143 818 2, 555* 3, 887* 27. 1 84 24, 145* Chronic Back Pain 6 165 9 1, 694* 1, 702* 10. 3 Chronic Obstructive Bronchitis 6 47 425 525 950 20. 2 12 77 Rehabilitation Programme Ankylosing Spondylitis Chronic Arthritis Asthma Study length (mo) * Wed 2 Dec 2009 RHD Talk Total Savings /Cost statistically significant 39

Overview of Talk • Introduction • My Own Experience of Living with MS • Self Efficacy • Learning and Support Infrastructures • MS Driving Licence • Evidence Accumulates • Discussion Wed 2 Dec 2009 RHD Talk 40

Thank You! Wed 2 Dec 2009 RHD Talk 41

Discussion ? Wed 2 Dec 2009 RHD Talk 42