More MS news articles for August 2001

Psychosocial Issues in Secondary Progressive MS

A Unique Set of Challenges

Rosalind C. Kalb, PhD
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.

"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.

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."

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.


  1. Peyser JM, Rao SM, LaRocca NG, Kaplan E. Guidelines for neuropsychological research in multiple sclerosis. Arch Neurol. 1990;47:94–97.
  2. Rao SM, Leo GJ, Ellington L, et al. Cognitive dysfunction in multiple sclerosis. II: Impact on employment and social functioning. Neurology. 1991;41:692–696.
  3. LaRocca N. Cognitive and emotional disorders in MS. In: Burks J, Johnson K, eds. Multiple Sclerosis: Diagnosis, Medical Management, and Rehabilitation. New York, NY: Demos Medical Publishing; 2000.
  4. Beatty WW, Goodkin DE, Hertsgaard D, Monson N. Clinical and demographic predictors of cognitive performance in multiple sclerosis: do diagnostic type, disease duration, and disability matter? Arch Neurol. 1990;47:305-308.
Psychosocial Challenges

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.

  • Depressed mood most of the day, every day
  • Diminished interest or pleasure in activities
  • Significant weight loss [or gain]
  • Sleep disturbances (eg, difficulty falling asleep or staying asleep)
  • Fatigue
  • Agitation
  • Feelings of guilt or worthlessness
  • Inability to think or concentrate
 Source: American Psychiatric Association.4

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."


  1. Weinshenker BG, Bass B, Rice GP, et al. The natural history of multiple sclerosis: a geographically based study. I: Clinical course and disability. Brain. 1989;112:133-146.
  2. Minden SL, Orav J, Reich P. Depression in multiple sclerosis. Gen Hosp Psychiatry. 1987;9:426-434.
  3. Sadovnick AD, Remick RA, Allen J, et al. Depression and multiple sclerosis. Neurology. 1996;46:628-632.
  4. American Psychiatric Association. Diagnostic and Statistical Manual of Mental Disorders. 4th ed. Washington, DC: American Psychiatric Press; 1994.