the invisible side of ms – understanding and treating psychosocial barriers
DESCRIPTION
A look at recent findings related to the impact of psychosocial factors on quality of life for people living with MS.TRANSCRIPT
Understanding and Treating Psychosocial Barriers
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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.
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National MS Societywww.nationalmssociety.org
© 2013 Griswold International, LLC
“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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“Anxiety orMS...Scared”
“Newbie with questions”
“Am I just crazy?”
“Depression and MS”
“Taking meds through airport
security?”
“Scared of romance”
Patient discussion board subjects uncover “invisible” symptoms
Subjects Matter
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Shifting the Focus from Medical to Psychosocial
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Psychosocial factors are predictors of quality of life in MS
Values, Emotions, Beliefs, and Attitudes
Anxiety, depression, uncertainty, fear, anger, isolation
Knowledge Understanding of MS and
how to self-manage
Surrounding Environment
Financial issues, competing needs, access
to care/services
Support Network Awareness and access to family,friends, peers,
advocacySelf-Efficacy
Confidence in diagnosis, care team, treatment, ability to
manage MS/treatment
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Highlighting a disconnect between Patients and Prescribers
Primary focus on managing physical symptoms with medication due to time limitations
• 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
Primary focus on managing psychosocial (“Invisible”) symptoms yet reluctant to discuss with their prescriber
• 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
DisconnectMedical
vs.Psychosocial
PatientPrescriber
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Bring on the Healthcare Extenders!:Professionals who focus primarily on psychosocial issues
Nurse (RN, LPN, APN)
Advocacy
Discharge Planner
Pharmacist
GriswoldHome Care
Counselor,Social Worker
GovernmentAgencies
PT/OT/Speech
Family/Friends
© 2013 Griswold International, LLC
MS Non-Medical Toolkit Solutions
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/Z0gmobMood Changes and MS: Managing Anxiety – National MS Society: http://bit.ly/X7yxIYCareer 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/Ya0a7xPlainTalk: A booklet about MS for families: http://bit.ly/ZLn3Pb Clinical Practice Guidelines: http://bit.ly/XuId66
Videos
Tools Resources
© 2013 Griswold International, LLC
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?
GriswoldHomeCare.com/Blog
© 2013 Griswold International, LLC
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?
National 24x7 Care Line:800-GRISWOLD
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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