A look at recent findings related to the impact of psychosocial factors on quality of life for people living with MS.

1. Understanding and Treating Psychosocial Barriers
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2. What is Multiple Sclerosis (MS)?
Multiple Sclerosis (MS) is a chronic, often disabling
disease that attacks the central nervous system
(CNS), which is made up of the brain, spinal cord,
and optic nerves.
Symptoms may be mild, such as numbness in the
limbs, or severe, such as paralysis or loss of vision.
The progress, severity, and specific symptoms of
MS are unpredictable and vary from one person to
another. Today, new treatments and advances in
research are giving new hope to people affected by
the disease.
National MS Society
www.nationalmssociety.org
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3. “The quality of life in
patients with MS is not solely
determined by physical
disability, but rather by the
level of social support, living area,
depression, level of education,
employment, fatigue and religiosity…
we suggest that these should be
evaluated in every patient with MS
as they may be modified by
targeted interventions.”
(Yamout et al, 2013)
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4. “Depression
and MS”
“Newbie with
“Anxiety or questions”
MS...Scared”
Subjects
Matter
Patient discussion
board subjects
uncover “invisible”
symptoms
“Am I
just crazy?”
“Scared of
romance”
“Taking meds
through airport
security?”
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5. Shifting the Focus
from Medical
to Psychosocial
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6. Psychosocial factors are predictors
of quality of life in MS
Values, Emotions,
Beliefs, and Attitudes
Surrounding Anxiety, depression, uncertainty, fear,
Environment anger, isolation
Financial issues,
competing needs, access
to care/services
Knowledge
Understanding of MS and
how to self-manage
Support
Network
Awareness and
access to family,
friends, peers,
advocacy
Self-Efficacy
Confidence in diagnosis, care
team, treatment, ability to
manage MS/treatment
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7. Highlighting a disconnect between
Patients and Prescribers
Prescriber Patient
Primary focus on managing Primary focus on managing
physical symptoms with psychosocial (“Invisible”)
medication due to time symptoms yet reluctant to
limitations discuss with their prescriber
• Numbness or weakness in one or • Overwhelmed with diagnosis
more limbs • Overloaded by amount of information
• Partial or complete loss of they are given
central vision • Depression due to isolation and
• Double vision or blurring of vision Disconnect mounting losses
• Tingling or pain in parts of your body Medical • Fear and uncertainty about the future
• Electric-shock sensations that occur
with certain head movements
vs. • Loss of roles: parent, spouse, worker,
active member of society
• Tremor, lack of coordination or Psychosocial • Impact on family and relationships
unsteady gait • Concern about financial issues
• Slurred speech • Difficulty with activities of daily living
• Fatigue • Travel concerns
• Dizziness
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8. Bring on the Healthcare Extenders!:
Professionals who focus primarily on psychosocial issues
Nurse
PT/OT/Speech (RN, LPN, APN)
Pharmacist Advocacy
Griswold Government
Home Care Agencies
Family/Friends Discharge Planner
Counselor,
Social Worker
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9. MS Non-Medical Toolkit Solutions
Videos
Mood Changes and MS: Understanding Depression – National MS Society: http://bit.ly/Z0gmob
Mood Changes and MS: Managing Anxiety – National MS Society: http://bit.ly/X7yxIY
Career Crossroads: Employment and MS Part 1 – National MS Society: http://bit.ly/Z0gyni
MS in a Personal Relationship – National MS Society: http://bit.ly/YbkkuU
Tools Resources
MS Quality of Life Inventory: http://bit.ly/Ya0a7x MS Connections:
PlainTalk: A booklet about MS for families: http://bit.ly/ZLn3Pb http://bit.ly/ZAeO5a
Clinical Practice Guidelines: http://bit.ly/XuId66 Living with MS:
http://bit.ly/Z0gXWT
MS Learn Online:
http://bit.ly/YseGDZ
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10. Takeaways
Points to remember
Quality of life for MS patients is directly related to
psychosocial issues that are rarely addressed or
discussed with prescribers
Health care extenders can play a key role in helping to
uncover these “invisible” symptoms and providing tools to
overcome them
Join the conversation
What best practices could you share on this topic?
How helpful is this information? What other information would be helpful in the future?
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11. Thank you for viewing our presentation!
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12. Sources
Yamout, B et. al. (2013)
Predictors of quality of life among multiple sclerosis patients: a comprehensive analysis; European
Journal of Neurology, DOI: 10.1111/ene.12046.
http://onlinelibrary.wiley.com/doi/10.1111/ene.12046/abstract
Healthboards.com
http://www.healthboards.com/boards/multiple-sclerosis/index425.html
National MS Society
http://www.nationalmssociety.org/about-multiple-sclerosis/what-we-know-about-ms/index.aspx
© 2013 Griswold International, LLC