The document discusses the psychosocial barriers faced by patients with multiple sclerosis (MS), emphasizing the importance of assessing both medical and psychosocial factors to improve quality of life. It highlights the disconnect between patients and prescribers, focusing on the need for healthcare extenders to address 'invisible' symptoms like depression and anxiety. Additionally, it provides resources and advocacy support for better management of MS and its related issues.

1. Understanding and Treating Psychosocial Barriers
Patient discussion board subjects uncover “invisible” symptoms
“Anxiety or
MS...Scared”
“Newbie with
questions”
Shifting the Focus from
Medical to Psychosocial
Psychosocial factors are predictors of quality of life in MS
Bring on the
Healthcare Extenders!
Professionals who focus primarily on psychosocial issues
Pharmacist
Griswold Home Care
Counselor,
Social Worker
Discharge Planner
Nurse
(RN, LPN, APN)
What is Multiple Sclerosis? (MS)
“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)
Subjects Matter
Highlighting a Disconnect
with Patients & Prescribers
- Numbness or weakness in one or
more limbs
- Partial or complete loss of central
vision
- Double vision or blurring of vision
- Tingling or pain in parts of your
body
- Electric-shock sensations that
occur with certain head
movements
- Tremor, lack of coordination or
unsteady gait
- Slurred speech
- Fatigue
- Dizziness
- Overwhelmed with diagnosis
- Overloaded by amount of
information they are given
- Depression due to isolation and
mounting losses
- Fear and uncertainty about the
future
- Loss of roles: parent, spouse,
worker, active member of society
- Impact on family and
relationships
- Concern about financial issues
- Difficulty with activities of daily
living
- Travel concerns
Prescriber Patient
Disconnect
Medical vs. Psychosocial
Primary focus on managing
physical symptoms with
medication due to time
limitations
Primary focus on managing
psychosocial (“invisible”)
symptoms yet reluctant to
discuss with their prescriber
Advocacy/Support Groups
“Am I
just crazy?”
“Depression
and MS”
“Taking meds
through airport
security?”
“Scared of
romance”
Family and
Friends
Government
Agencies
PT/OT/
Speech
MS Non-medical Toolkit Solutions
© 2013 Griswold International, LLC
Support Network
Awareness and access
to family, friends,
peers, advocacy
Surrounding Environment
Financial issues, competing
needs, access to care/services
Values, Emotions, Beliefs,
and Attitudes
Anxiety, depression, uncertainty,
fear, anger, isolation
Knowledge
Understanding of MS and
how to self-manage
Self-efficacy
Confidence in diagnosis,
care team, treatment,
ability to manage
MS/treatment
• 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
MS Connections:
http://bit.ly/ZAeO5a
Living with MS:
http://bit.ly/Z0gXWT
MS Learn Online:
http://bit.ly/YseGDZ
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
MS Quality of Life Inventory:
http://bit.ly/Ya0a7x
PlainTalk: A booklet about MS for families:
http://bit.ly/ZLn3Pb
Clinical Practice Guidelines:
http://bit.ly/XuId66
Videos
Tools Resources
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