A Unique Set of Challenges
http://mscare.com/s0009/page_06.htm
Rosalind C. Kalb, PhD
"The transition to secondary progressive
MS forces people to redefine their illness," emphasized Rosalind C. Kalb,
PhD, a Clinical Psychologist at the MS Care Center at St Agnes Hospital,
White Plains, New York. "It shatters their denial. Any conviction that
their disease was benign, or that they were going to be the one person
who would beat it, is severely threatened."
Emotional and psychosocial issues
are magnified in many cases by the fact that patients were not armed with
the proper information about their disease from the beginning. "Unfortunately,
many of these people were not told—or did not hear when they were told—that
up to 50% of those with relapsing-remitting disease are likely to make
the transition to secondary progressive MS within 10 years of diagnosis,"
observed Dr. Kalb. "Within 25 years, up to 90% can expect the transition.1
They may not have known that the transition was actually expected as part
of their disease. They may have believed that if they were determined enough,
or careful enough, they would be relapsing-remitting forever."
A Variety of Meanings
Individuals with MS and their families
attribute a variety of meanings to the transition to secondary progressive
disease, reported Dr. Kalb, who is also Clinical Assistant Professor of
Neurology at New York Medical College, in Valhalla, New York (Table 1).
"At the very best, they see it as ‘bad luck,’ that they have been dealt
‘crummy cards.’ Whatever terms they use, they are conveying the belief
that this could have happened to anyone, but that it is happening to them."
Table 1. Patient Reactions to
Secondary Progressive Transition.
Yet another common belief is that
the onset of secondary progressive MS is "a punishment for a past failure
or some inadequacy, or even God’s will." This last belief can be a particular
obstacle for members of the health care team who are trying to encourage
patients to be more proactive on their own behalf. In particular, said
Dr. Kalb, "it poses a particular challenge to the medical team, who are
trying to treat the disease early and aggressively."
Regardless of the meaning that patients
attach to secondary progressive MS, Dr. Kalb warned that "This is also
a time when we often see more resistance in our patients. They reason that
their MS is getting worse, so they question whether they should keep treating."
The financial burden of treating a chronic disease for many years may also
contribute to this resistance. "We need to be aware of the signs of fear
and frustration and despair. This is a time when our patients need support
and encouragement."
Emotional Reactions to Progression
The specific emotional reactions
that are common to any diagnosis of MS may become even more pronounced
during the transition to secondary progressive disease. One of the most
common and powerful emotions felt during this period is grief.
"This is such an integral part of
living with MS," said Dr. Kalb. "It is a very normal reaction to any kind
of loss, and it is in full force during this transition period." Anything
during this time, she said, can represent a "loss of self, of control,
and of personal identity." Heightened anxiety is also to be expected, because
"the future has suddenly become even more uncertain than it was before
the transition, and no person is comfortable with that level of uncertainty."
During the transition period, patients
can express a tremendous amount of anger, which they direct at themselves,
their family, the management team, pharmaceutical companies, insurance
companies, or even God. While patients are coping with this anger, it is
crucial for providers not to give in to their own tendencies to avoid uncomfortable
situations. "We may have a tendency to pull away from angry individuals
just at the time when they need us the most," Dr. Kalb emphasized.
Guilt and embarrassment are two other
powerful emotions that surface during the transition period. These feelings
may have multiple origins. "For the most part, this guilt stems from the
inability to carry out important functions at home or at work," said Dr.
Kalb. "Patients worry that they are ‘letting people down’ and causing trouble,
and that they are not ‘holding up their part of the bargain.’ They express
embarrassment that they are getting worse, despite strong determination,
good care, and immunomodulator therapy."
Like despair, feelings of embarrassment
can also cause patients to avoid their providers, for fear of telling them
that the disease is progressing despite the provider’s best efforts. "These
reactions show how much we must do to educate our patients about this disease,"
emphasized Dr. Kalb. "Embarrassment and guilt are unnecessary burdens that
people should not have to bear."
Embarrassment also arises in a patient
who does not want to appear disabled in public. "Many of our relapsing-remitting
patients have told us that one of the most important things for them is
not to look impaired," commented Dr. Kalb. "For these patients, the fact
that their symptoms may have been invisible helped them cope with their
situation. They could usually explain away any of the problems they were
having to anyone who asked."
Cognitive Difficulties in the
Secondary Progressive Patient
At least 50% of persons with MS will
experience some change in cognitive function during the course of their
disease.1,2 For most individuals, cognitive changes are mild to moderate;
for 10% of those with MS, however, these changes will be severe enough
to interfere with everyday functioning. Like depression, cognitive changes
may appear at any point in MS, even as the initial symptom. Although the
degree of cognitive impairment is related to the extent of MS lesions,
this association is weak,2–4 meaning that a newly diagnosed person with
few lesions can be severely cognitively impaired, while someone with advanced
disease can remain cognitively intact.
It is important to enlist the patient’s
help in recognizing signs of cognitive difficulties. "We need to listen
to what our patients are telling us about their own health," said Dr. Kalb.
Cognitive symptoms in MS include problems with memory, attention, concentration,
word finding, problem solving and judgment, and visuospatial abilities,
as well as a general slowing of information processing. These changes can
affect people’s ability to take care of their daily activities and responsibilities,
and to accomplish several tasks at one time.
Interference with the ability to
communicate and to solve problems "can be a significant source of interpersonal
and vocational difficulties and is a major factor in employment," said
Dr. Kalb. For this reason, it is important for patients to be informed
about cognitive changes so that they can alert the provider to any changes
they are experiencing. While many MS providers are reluctant to broach
the subject for fear of frightening or upsetting patients, "in my experience,
those who are undergoing cognitive changes are relieved to have their experiences
understood and validated."
Mild to moderate cognitive dysfunction
can be managed with a variety of compensatory strategies. "Early assessment
and intervention are the most effective tools we have to help individuals
function at a maximum level," said Dr. Kalb. Early recognition of cognitive
difficulties allows psychologists and occupational therapists to devise
effective interventions.
References
The psychosocial issues surfacing
during the transition to secondary progressive MS affect patients, families,
and every member of the multidisciplinary health care team. For example,
the need to focus on planning for the future is suddenly brought to the
fore, requiring the expertise of everyone involved.
"For many persons with secondary
progressive disease, the future seems even more uncertain—and planning
for that uncertainty becomes increasingly important," said Dr. Kalb. Much
of this planning involves setting strategies for adjusting to greater limitations.
"It is important to help people plan and problem-solve more effectively,"
she emphasized. "People are forced to redefine themselves in terms of their
activities, taking their limitations into account."
This process of "redefining themselves"
can be especially difficult for those who think to themselves that "the
old me is gone, and I can’t figure out what’s left." The search for a new
definition of self occurs each time individuals lose the ability to do
something the way they used to do it.
These ever-increasing limitations
require those with progressive MS to "redraw their map of the world." According
to Dr. Kalb, "Patients struggle with issues of how to get to places, and
how to accomplish what they need to once they get there." In these situations,
it is critical to involve the rehabilitation team. "If people cannot do
the things they used to do in the way they used to do them, they run the
risk of simply not doing them at all, until their world has shrunk to nothing."
For the secondary progressive MS
patient who faces increasing limitations, the old goals and priorities
may not be feasible anymore, forcing them to identify a new set of life
goals. The changes impact patients, family, colleagues, and friends; therefore,
"This goal-setting cannot occur in isolation," explained Dr. Kalb. "In
addition to making adjustments within themselves, people must renegotiate
these changes with everyone else. . . . Everyone must become involved for
these changes to occur."
Ironically, those in the transitional
phase may be called upon to make these difficult choices when they are
least equipped to do so. "These persons are grieving over their losses
and experiencing changes in their lives," Dr. Kalb said. In addition, "as
many as half of them may be experiencing significant depression or cognitive
dysfunction."
Managing Depression and Cognitive
Dysfunction
Depression and cognitive dysfunction
in secondary progressive MS can prevent patients from being active partners
in their care (see Box, "Cognitive Difficulties in the Secondary Progressive
Patient"). It is important to remember that depression can occur at any
point in the course of MS. "It can occur in someone who has never seemed
depressed, or who has never seemed like the type of person who might become
depressed."
The nature of depression in MS remains
unclear. "We know that clinical depression occurs more frequently in MS
than in other chronic diseases," said Dr. Kalb. "As many as 50% of persons
with MS will experience a major depressive episode at some point or other
in the course of their disease."2,3 Although research findings are not
conclusive, depression in MS may be caused by a reaction to the losses
and challenges of MS, as well as to neuropathologic changes in the brain.
"Whatever the cause, we have to identify these patients and we have to
offer treatment. Those who are depressed are suffering an unnecessary extra
burden, and depressive symptoms can prevent them from participating actively
in their own care."
Depression differs from normal grieving
and has specific diagnostic criteria (see Table 2).4 Making the diagnosis
difficult is the fact that "Some of these symptoms, such as fatigue, inability
to concentrate, or even guilt, can be confused with MS symptoms, drug reactions,
or normal feelings about the illness," said Dr. Kalb. In addition, patients
are often reluctant to discuss these feelings with their health care providers
for fear of sounding "crazy" or weak. "Most people don’t want to sound
like they’re complaining all the time. Education about depression can help
people recognize depressive symptoms and be more understanding and accepting
of painful feelings they may encounter."
Table 2. Diagnostic Criteria for
Major Depressive Disorder.
The adverse effects of many antidepressants
make the choice of drug therapy difficult in the MS patient. "There are
many medications out there. Some of them are sedating, some are stimulating,
some may interact with other medications, and virtually all of them interfere
with sexual function," said Dr. Kalb. Although most depressive episodes
are best treated with a combination of medication and psychotherapy, as
with any other treatment, "the goal is not to treat the symptoms, but to
treat the person living with the illness. It may take some time and work."
The Implications for Care
Overall, the patient’s transition
to secondary progressive MS has significant implications for the health
care team. An important priority is to explain to the patient what he or
she can expect. "In order for people to do any kind of effective planning
and problem solving, they need to know what is in store for them," said
Dr. Kalb. "Persons with MS tend to put off thinking about tomorrow, even
to the point of resisting our efforts to talk about employment and other
issues."
She reiterated that the provider
must resist any tendency to avoid the subject of the transition. "We tend
to collude with our patients, because we do not want them to lose hope
or become severely depressed. Yet we are not helping them if they cannot
make important decisions or create the safety net they need to avoid unnecessary
crises."
The historical lack of treatment
choices for secondary progressive disease has contributed to this reluctance
to approach the subject of transitioning MS. "The fewer treatments we have,
the harder it is to talk about it," said Dr. Kalb. However, the emergence
of effective therapies has changed the way patients, caregivers, and the
whole health care team tend to react. "Since the beginning of the clinical
trials on secondary progressive MS, all of us, including researchers, clinicians,
patients, and families, have been paying a lot more attention to the disease
course. Before this, those who were diagnosed with relapsing-remitting
MS were undergoing treatment, while those diagnosed with secondary progressive
MS felt ‘left out in the cold.’ Medications have made a lot of difference."
Nevertheless, even potential treatment
choices such as mitoxantrone can be daunting. "Chemotherapy of any type
is difficult," said Dr. Kalb. "Patients know just enough about it to make
it frightening." Providers must be aware that this is a time in which patients
will seek even more aggressive experimental treatments.
"When people are making a lot of
difficult choices with undetermined outcomes, they need a lot of support,"
Dr. Kalb concluded. "We need to give them sufficient time and education,
and the necessary referrals." Fortunately, the transition to secondary
progressive MS is also a time when persons who were previously unwilling
to make use of available resources now seek the benefits of counseling
and education. "We need to be ready to provide this. Through our collaborative
efforts, we can help patients make this transition more comfortably."
References
Clinical Psychologist
MS Care Center
St. Agnes Hospital
White Plains, New York
An initial diagnosis of relapsing-remitting
multiple sclerosis (MS) can raise tremendous psychosocial issues for patients
and caregivers. It is important for providers to realize, however, that
the transition to secondary progressive MS presents its own unique psychosocial
challenges, placing additional burdens on patients, families, and caregivers.
This transition requires the health care team to be even more attentive
to the needs of these individuals.
Many people, however, "take the diagnosis
a lot more personally. They see it as a sign of personal failure, that
they did not try hard enough." It is also common to view the transition
as a sign of weakness. "Individuals believe that they weren’t strong enough,
that they couldn’t handle all the stress, that they couldn’t fight the
disease," commented Dr. Kalb. Others see the transition as a treatment
failure or the consequence of poor treatment choices. "These people think
that they should have started on an immunomodulator sooner, that they should
have picked a different drug, or that they should have chosen alternative
therapies."
Psychosocial Challenges
Source: American Psychiatric Association.4