Title: Mood and Cognition in MS: The Patient
1Mood and Cognition in MSThe Patients
Challenges OursRosalind Kalb, PhD
2Jean-Martin Charcot Second Lecture on Multiple
Sclerosis, 1868
There is marked enfeeblement of the memory
conceptions are formed slowly the intellectual
and emotional faculties are blunted in their
totality. It is not rare to see them give way to
foolish laughter for no cause, and sometimes, on
the contrary, to melt into tears for no reason.
Nor is it rare, amid this state of mental
depression, to find psychic disorders arise which
assume one or other of the classic forms of
mental alienation.
3- Multiple Sclerosis A Very Brief Overview
4What does MS look like?
5What does MS really look like?
- Juliaa 35yo white married mother of 3 who is
exhausted all the time and cant drive because of
vision problems and numbness in her feet - Jacksona 25yo African-American man who stopped
working because he cant control his bladder or
remember what he read in the morning paper - Mariaa 10yo Hispanic girl who falls down a lot
and whose parents just told her she has MS - Lorettaa 47yo white single woman who moved into
a nursing home because she can no longer care for
herself - Geoffa 24yo single white man who is severely
depressed and worried about losing his job
because of his MS diagnosis
6What MS Is
- MS is thought to be a disease of the immune
system. - The primary targets of the immune attack are the
myelin coating around the nerves in the central
nervous system (CNSbrain, spinal cord, and optic
nerves) and the nerve fibers themselves. - Its name comes from the scarring caused by
inflammatory attacks at multiple sites in the
central nervous system.
7What MS Is Not
- MS is not
- Contagious
- Directly inherited
- Always severely disabling
- Fatalexcept in fairly rare instances
- Being diagnosed with MS is not a reason to
- Stop working
- Stop doing things that one enjoys
- Not have children
8What causes MS?
Genetic Predisposition
Environmental Trigger
Immune Attack
Loss of myelin nerve fiber
9What happens in MS?
Activated T cells...
...cross the blood-brain barrier
launch attack on myelin nerve fibers...
to obstruct nerve signals
10What happens to the myelin and nerve fibers?
11Who gets MS?
- Usually diagnosed between 20 and 50
- Occasionally diagnosed in young children and
older adults - More common in women than men (2-31)
- Most common in those of Northern European
ancestry - More common in Caucasians than Hispanics or
African Americans rare among Asians - More common in temperate areas (further from the
equator)
12Why does a person get MS?
- We do not know why one person gets MS and another
does not. - We do not know of anything
- The person did to cause MS.
- The person could have done to prevent it.
- There is no way to predict who will get it and
who will not.
13What is the genetic factor?
- The risk of getting MS is approximately
- 1/750 for the general population
- 1/40 for person with a close relative with MS
- 1/4 for an identical twin
- 20 of people with MS have a blood relative with
MS - The risk is higher in any family in which there
are several family members with the disease (aka
multiplex families)
14What are possible symptoms?
- Balance problems
- Weakness
- Stiffness (spasticity)
- Speech/swallowing problems
- Tremor
- Emotional changes
- Cognitive problems
- Fatigue (most common)
- Bladder/bowel
dysfunction - Sensory problems
(numbness, tingling) - Vision problems
- Pain (neurogenic)
- Sexual problems
- Breathing difficulties
- Dizziness/vertigo
-
Our focus today Visible to others
15How is MS treated?
- While we continue to look for the cure, MS
treatment needs to be comprehensive and
interdisciplinary - Treating relapses (aka exacerbations, flare-ups,
attacks) - Slowing disease progression
- Managing symptoms
- Maintaining/improving function
- Enhancing quality of life for individuals and
their families
16Who is on the MS Treatment Team?
- Neurologist
- Nurse
- Physiatrist
- Physical therapist
- Occupational therapist
- Speech/language pathologist
- Neuropsychologist
- Social worker/Care manager
- Psychotherapist
- Psychiatrist/psychiatric nurse practitioner
- Urologist
- Neuro-ophthalmologist
- It takes a village.
17Primary Challenges for People Living with MS
- Chronicitymost will live with MS for decades
- Unpredictabilityeach persons outcome is
uncertain - Change and Lossmost will need to grieve over
major changes in their lives - Expenselarge direct and indirect costs
- Multiple Choices with no correct
answerstreatments, disclosure, employment,
family planning - Risk Tolerancevaries among family members
18Contrasting Then and Now
- THEN
- Diagnose Adios
- You should go home and rest.
- Women with MS should never have children
- NOW
- There is a lot we can do to manage your MS.
- People with MS can continue to work as long as
they want to and feel able. - Women and men with MS can be happy parents of
healthy kids.
19So what do we know about MS?
- MS is a chronic, unpredictable disease.
- The cause is still unknown.
- MS affects each person differently symptoms vary
widely. - MS is not fatal, contagious, directly inherited,
or always disabling. - Early diagnosis and treatment are important
- Significant, irreversible damage can occur early
on. - Treatment reduces the number of relapses and may
slow progression. - Treatment includes attack management, symptom
management, disease modification, rehabilitation,
emotional support.
20 21Why are mood issues so important?
- Affect cognitive function
- Compromise quality of life
- Are associated with time lost from work
- Interfere with self-care/adherence to treatment
- Adversely affect relationships
- May be triggered by medications
22DepressionSetting the Stage1
- Depression
- Is more common in MS than in other chronic
conditions. - Is under-diagnosed and under-treated in MS
patients. - Impacts quality of life
- Interferes with a persons ability to participate
actively in his or her own MS care - Impacts cognition (and vice versa)
- Is the greatest risk factor for suicide
1Feinstein, 2007
23Prevalence of Depression in MS
- Lifetime prevalence estimates range from 20-50
in clinic populations, with a similarly high rate
in community samples.1 - Depression can occur at any time over the disease
course. - People are at greatest risk for depression at
major transition points3 - Following the diagnosis
- Following significant loss of function, departure
from the workforce
1 Minden Schiffer, 1990 Patten et al., 2003
2Feinstein, 2007
24Meet Joseph
- 60 yo man with SPMS
- Married with two children
- Employed full-time as a college professor
- Triplegic
- Low-key, creative, warm, wry sense of humor
25Etiology of Depression in MS
- Evidence points to a multifactorial etiology1
- Brain pathology2,3
- Psychosocial factors
- Unpredictability
- Psychosocial stressors (marital problems
economic pressures, etc.) - Emotion-centered coping style4
- Learned helplessness vs. self-efficacy
- Abnormalities in the hypothalamic-pituitary-adrena
l axis5
1Feinstein, 1995 2Gold et al, 2010 3Feinstein
et al, 2004 4Lynch et al., 2001 5Wei
Lightman, 1997
26Diagnosis of Depression in MS The Challenges
- Of 9 DSM-IV symptoms of depression, 4 are
symptoms of MS1 - Depressed mood most of the day nearly every day
- Markedly diminished pleasure in most or all
activities - Significant weight change (gt5 up or down in a
month) - Inability to sleep or sleeping too much
- Motor agitation or significant slowing
- Fatigue or loss of energy
- Problems with thinking or concentrating
- Feelings of worthlessness/excessive guilt
- Recurrent thoughts of death
1Mohr et al., 1997
27Diagnosis of Depression in MS The Challenges,
contd
- Patients may be reluctant to report mood changes
- Depression in MS often presents with
irritability/frustration rather than the more
typical withdrawal, apathy, and guilt1 - The common but incorrect assumption that it
is normal for a person with a devastating
chronic illness to be depressed - Depression can be difficult to distinguish from
the grieving process that is part of life with
MS2
1Minden et al., 1987 Feinstein Feinstein
2001 2Kalb Miller, 2008
28What is normal grieving in MS?
Kalb, 2008
29Undiagnosed Depression The Consequences
- The result of these challenges is that many
people with MS are living with an unnecessary
amount of emotional pain, a reduced quality of
life, and a greatly increased risk of suicide1 - In one study, two-thirds of MS patients with
depression within a neurology clinic received no
antidepressant treatment.2 - Of those who were treated, only 25 were given an
adequate dose.
1Feinstein, 2007 Sadovnick et al., 1991
Stenager Stenager, 1992 2Mohr et
al., 2006
30Suicide among Patients with MS
- Suicide is more common in MS than in other
neurological disorders.1 - Swedish epidemiological study significantly
elevated risk of suicide in MS, particularly in
males and those diagnosed before age 30.2 - Canadian review of death certificates
(1972-1988) suicide listed as cause of death in
15 of MS clinic attendees (7.5x greater than
age-matched population).3 - Anxiety co-morbid with depression increases the
risk for self-harm.4
1Stenager Stenager, 1992 2Stenager et al.,
1992 3Sadovnick et al., 1991 4Feinstein et al.,
1999
31Tools for Assessing Depression in MS
- Beck Depression Inventory (BDI)
- Beck Fast Screen for Medically Ill Patients
(B-FS) - Hamilton Rating Scale for Depression (HDRS)
- http//healthnet.umassmed.edu/mhealth/HAMD.pdf
- Psychiatric interview
- Recommended by the Goldman Consensus Statement
on Depression in Multiple Sclerosis (Goldman
Consensus Group, 2005)
32Assessment Tools, contd
- Two-question screening tool validated in MS1
- 260 MS patients screened using the MDD module of
the DSM-IV Structured Clinical Interview - Each participant also given two screening
questions - 1. During the past two weeks, have you often been
bothered by feeling down, depressed, or hopeless? - 2. During the past two weeks, have you often been
bothered by little interest or pleasure in doing
things? - Using at least one affirmative response on either
question as the criterion identified 98.5 of
patients meeting the criteria for MDD based on
the structured diagnostic interview.
1Mohr et al., 2007
33Depression Treatment Recommendations
- Psychotherapy antidepressant medication is the
treatment of choice1 - Cognitive behavior therapy
- Psychoeducation (problem-focused coping skills)2
- SSRI antidepressants
- Exercise3
- ECT is recommended under limited circumstances4
- Note Support groups/chat rooms/bulletin boards
are not adequate for treating significant
depression
1Feinstein, 2007 Mohr et al., 2001b 2Dennison
et al., 2009 Goretti et al., 2009
3 Dalgas et
al., 2010 Stroud Minahan, 2009 Petajan et
al., 1996 4Feinstein, 2007
34Challenges to Treating Depression in MS
- Patients resistance to treatment (I take enough
pills already!) - Neurologists lack of time/lack of training
- May require unusual/unexpected antidepressant
dosages1 - Non-adherence because of side effects (Rates of
sexual dysfunction may be as high as 70 in a
population that already experiences significant
sexual dysfunction)2 - Insufficient number of psychiatrists who are
interested/accessible/covered
1Mohr et al., 2006 2Feinstein, 2007 Zorzon et
al., 2001
35Meet Cassandra
- 43 yo woman with PPMS
- Dynamic, funny, and smart
- Employed in a high-power job
- In a committed relationship
- Gradually increasing mobility impairment
- Responded so well to medication that she thought
she didnt need it any more3 times - Mood stabilized on maintenance dose
36Meet Anna
- 49 yo woman diagnosed with RRMS
- Employed as a teacher
- In a committed relationship
- Minimally physically disabled
- Bubbly, motivated, creative, clingy, dependent
- Became depressed following the diagnosis
- Pressured by her friends to seek treatment
- Successfully treated with antidepressant
medication (happy pills) and intermittent
psychotherapy for past 15 years
37So, what is the reality in MS?
- Depression in general tends to be
under-diagnosed. - Two-thirds of MS patients with major depression
within neurological clinics receive no
antidepressant treatment. - Three-quarters of those treated are given an
inadequate dose. - Many people with MS are living with more distress
and discomfort than they need to.
38Other Emotional Disorders in MS
- Bipolar disorder
- Mood swings
- Anxiety
- Pseudobulbar affect
- Euphoria
39What do we know about bipolar disorder in MS?
- Relatively rare in MS, but more common than in
the general population1,2,3 - May share a common genetic predisposition with MS
- Likely related to white matter changes
- Responds to standard treatment (mood stabilizers
antipsychotic medication as needed) - Steroid Alert
1Feinstein, 2007 2Hutchinson et al., 1993
3Schiffer et al., 1986
40What do we know about mood swings in MS?
- Moderate to severe shifts in mood may occur
- May shift between happiness, sadness,
irritability, and/or rage - Affects self-esteem and the sense of personal
control - Strains relationships at home and at work
- May be treated with a combination of
psychotherapy and mood-stabilizing medications - Steroid Alert
41Meet Norman
- 55 yo man diagnosed with PPMS
- Minimally physically-disabled
- Married with two children
- Professional ?? retired because of MS fatigue
- Warm, funny, feisty, irritable, moody
42One Childs Description of MS Moods
43Anxiety in People Living with MS
- Anxiety is more common than depression,
especially among females, particularly right
after diagnosis.1 - Like depression, anxiety is under-diagnosed and
under-treated. - Anxiety is the best predictor of excessive
alcohol consumption in people with MS.2 - Lifetime prevalence of generalized anxiety
disorder in MS patients found to be 18.6 vs.
5.1 in general population.3
1Feinstein et al., 1999 Zorzon et al., 2001
2Quesnel Feinstein, 2004 3Korostil
Feinstein, 2007
44Pseudobulbar Affect (PBA) in MS
- Characterized by episodes of uncontrolled
laughing and or crying1 - Inappropriate to both external circumstances and
internal mood states - PBA may be mediated by damaged to the pre-frontal
cortex2 - Occurs in approximately 10 of MS patients2
- Generally associated with longer disease course,
greater disability, and more cognitive impairment2
1Poeck, 1969 2Feinstein et al., 1997
45PBA, contd
- Has been treated successfully with amitriptyline1
and SSRI antidepressants2 - Neudexta (dextromethorphan quinidine) approved
in 2010 to treat PBA3
1Schiffer Pope, 1985 2Seliger et al., 1989
3Pioro et al., 2010
46Euphoria in MS
- Once thought to be a hallmark of MS
- Persistent unrealistic optimism in spite of harsh
realities and lack of insight - Fixed rather than fluctuatinglike a personality
change - Associated with progressive course, widespread
lesions on MRI, significant cognitive impairment - Devastating for families
- No treatment available
47Meet Erica
- 30 yo woman with SPMS
- Diagnosed with RRMS at age 14
- In a long-term committed relationship
- Initial symptoms were cognitive changes that
progressed rapidly - Today, minimal physical symptoms but unable to
function/live independently because of cognitive
limitations - Warm, cheerful, unconcerned about her status and
future
48Take-Aways about Common Mood Issues
- Significantly affect quality of life and
healthcare - May be related to disease process itself and/or
altered life circumstances - May overlap with other MS symptoms
- Are often under-diagnosed or mis-diagnosed
- Respond best to medication counseling
- Depression and anxiety are more common
in caregivers as well
49 50Cognition and Other Disease Characteristics1
- Cognitive function correlates with number of
lesions and lesion area on MRI, as well as brain
atrophy. - Cognitive dysfunction can occur at any time but
is more common later in the disease. - Cognitive dysfunction can occur with any disease
course, but is slightly more likely in
progressive MS. - Being in an exacerbation is a risk factor for
cognitive dysfunction. - Depression can worsen cognition, particularly
executive functions.
1Feinstein, 2007 LaRocca Kalb, 2006
51Prevalence of Cognitive Changes1
1LaRocca Kalb, 2006
52Impact of Cognitive Impairment on Employment1
1Rao et al. 1991
53Cognitive Functions Affected in MS1
- Memory - acquisition and retrieval
- Attention and concentration
- Speed of information processing
- Executive Functions (planning, prioritizing,
organizing, decision-making) - Visual/spatial organization
- Verbal fluency - word finding
1DeLuca, 2006
54Cognitive Functions Unaffected in MS1
- General intellect
- Long-term (remote) memory
- Recognition memory
- Conversational skill
- Reading comprehension
1DeLuca, 2006
55The Psychosocial Impact of Cognitive Changes1
- The ability to think, remember, and reason is
central to a persons identity. Changes in
cognitive abilities - Threaten the sense of self
- Damage self-esteem and self-confidence
- Cognitive abilities impact interactions with
others. - Cognitive impairments
- Alter communication patterns
- Impact other peoples perceptions
- Interfere with role performance
- Affect the balance and intimacy in a partnership
- Have an interrelationship with depression
1Kalb, 2006
56Guidelines for Treatment (for now)1
- Symptomatic Treatments slow progress
- Not much of real value has emerged as of 2012 no
agents have demonstrated efficacy in controlled
clinical trials - Disease Modifying Agents may be most important
- Modest results so far, but if they can slow or
halt accumulation of cerebral lesions . . . - Cognitive Rehabilitation common-sense help
- Disappointing data thus far but common-sense
points to compensatory measures as best strategy - Address affective and social issues related to MS
57Implications for patient care
- Even mild cognitive dysfunction can impact
treatment - Your patients may not
- Show up on time for appointments
- Follow complex explanations
- Remember what theyve been told
- Follow through on treatment plans
- You may want to
- Provide informational brochures
- Provide appointment reminders
- Write down specific instructions
- Remind patients to write down their questions
- Invite patients to bring a family member or
friend to appointments
58Multiple Sclerosis Neuropsychological
Screening Questionnaire (MSNQ)1
- 15-item self-report questionnaire
(http//mscare.org/cmsc/images/pdf/MSNQ.pdf) - Includes versions for both patient and informant
- Takes approximately 5 minutes
- Reliable and predicts neuropsychological
impairment - Both self- and informant reports correlated with
cognitive dysfunction and depression scales,
however - Self-reports may be exaggerated in depressed
patients - Self-reports may under-estimate impairment in
severely impaired patients
Benedict et al., 2003 Benedict et al., 2004
59NMSS Resources for Clinicians
- MS Clinical Care Network
(www.nationalMSsociety.org/MSClinicalCare
healthprof_info_at_nmss.org - Clinical consultations with MS specialists
- Literature search services
- Professional publications (Clinical Bulletins
Expert Opinion Papers Talking with Your MS
Patients about Difficult Topics Pamela Cavallo
Education Series for nurses, rehab professionals,
mental health professionals, and pharmacists - Professional Education Programs (Nursing, Rehab,
Mental Health) - Consultation on insurance and long-term care
issues
60NMSS Resources for Your Patients
- 40 chapters around the country
- Newly-designed Web site (www.nationalmssociety.org
) - Access to information, referral, support
(1-800-344-4867) - Educational programs (in-person, online)
- Support programs (self-help groups, peer and
professional counseling, friendly visitors) - Consultation (legal, employment, insurance,
long-term care - Financial assistance