Real World Health Care Blog

Tag Archives: Multiple Sclerosis

Challenges in Pain Management for MS Patients

This week, Real World Health Care interviews Theodore R. (Ted) Brown, MD, MPH, about pain management in patients with Multiple Sclerosis (MS). Dr. Brown is director of neuro-rehabilitation at the EvergreenHealth Multiple Sclerosis Center, which cares for about 800 patients. His clinical duties include managing patients with established MS through a total wellness approach that involves drug therapy, exercise, stress management, diet and sleep. His research work focuses on developing new studies to investigate treatments for symptoms of MS and minimizing the side effects of MS drugs.

Duloxetine Study

Real World Health Care: In spring of 2016, you published a study on the use of duloxetine for central pain management in MS, which received the 2016 Herndon Award for best paper published in the International Journal of MS Care. Can you summarize the results and the implication of the study for MS patients?

Theodore R. Brown, MD, MPH, EvergreenHealth

Ted Brown: Pain is common in MS. Duloxetine is a serotonin-norepinephrine reuptake inhibitor that has a potential therapeutic role in treating MS-related pain. We conducted a single-center placebo-controlled, double blind trial of duloxetine involving thirty-eight MS patients. The dosing regimen was 30 mg daily for 1 week, then 60 mg daily for 5 weeks. The primary outcome measure was change in worst pain for week 6 relative to baseline recorded on a daily pain diary.

Of 38 randomized patients, 14 (78%) patients randomized to duloxetine and 19 (95%) randomized to placebo completed treatment. These participants had an average age of 55.5 years, 27% were male, and 64% had relapsing-remitting MS (RRMS). Baseline characteristics were similar. Discontinuations were due primarily to drug intolerance (nausea, headache, no serious treatment-related adverse events).

Among those who completed treatment, worst pain at 6 weeks was reduced by 29% (±20%) for duloxetine versus 12% (± 18%) for placebo (P = .016). Average daily pain at 6 weeks was reduced by 39% (±29%) on duloxetine compared to 10% (±18.8%) in the placebo group (P = .002). Change in subject global impression favored duloxetine (P = .048). There were no significant changes (week 6 vs. baseline) or between-group differences for Beck Depression Inventory or sleep quality score. This suggests that the benefits we found were due to a direct pain-relieving effect, not due to change in mood or sleep.

The implications are that duloxetine may have a role for treating central pain due to MS, that effects can be seen within 4-6 weeks, and that not all patients are able to tolerate the drug.

Research Perspective

RWHC: What are some of the biggest challenges researchers face in studying pain control in MS patients, and how can those challenges best be addressed?

TB: Studying MS pain is difficult for many reasons. Pain makes patients uncomfortable, so they need relief. This is a challenge for recruitment into a study that is placebo-controlled. There are many treatments available by prescription. So, patients may prefer to get a quick fix from a prescribed drug instead of volunteering for a study.

Funding for pain studies also is difficult, since most trials may involve drugs that may already be generic or non-drug interventions. Funding sources for such studies are scarce. The study design must be as brief as possible to limit patient discomfort, should provide some contingency for rescue treatment in case of severe pain, and must be as cost-effective as possible.

Clinical Perspective

RWHC: What are some of the biggest challenges that clinicians face in treating pain in MS patients, and how can those challenges best be addressed?

TB: We tend to assume that all pain in MS is caused by the disease itself. We may overlook non-MS factors that may be causing the pain, such as orthopedic, vascular, infectious or oncological problems. Every case requires thorough assessment, which can be difficult when patients may have several other active problems to address.

Physicians must treat the MS patient to provide pain relief and maximize quality of life. However, pain can very rarely be eliminated completely. State agencies and national organizations discourage prescription of opioid medications for nerve pain. These drugs are not all that effective and carry a host of potential side effects and problems with dose escalation and dependency. Anticonvulsant medications are usually first-line.

Non-drug treatments, such as physical activity, massage, meditation and complementary treatments should be explored. Some level of pain that is tolerable, and does not interfere with sleep and daily activities, may be the best that can be achieved in many cases.

Range of Treatments

RWHC: What are some of the most important pharmaceutical developments in treating pain in patients with MS? Is the field poised for a breakthrough?

TB: Good question. I believe that the incorporation of duloxetine in the treatment algorithm of MS pain is an important development. Some patients find medical marijuana beneficial for MS pain, yet it is very difficult to do clinical research with cannabis in the United States. This treatment is not available in all states, and where available, it is expensive and difficult to instruct patients on how to use it without taking too much or experiencing adverse effects, including cognitive dysfunction. I am not aware of any breakthroughs on the horizon. The danger is that MS pain is overlooked in the vital effort to develop drugs for neuro-protection and neural repair. Certainly, more research in MS pain is needed.

RWHC: Do you think there is a role for non-pharmaceutical pain management therapy in patients with MS?

TB: Yes, absolutely. In every case, physical exercise should be included in the pain management program. Depression is very common in MS. Treating depression and stress may help in treating the pain. We are conducting a study of laughter therapy at the moment and are hopeful that this is one of many complementary approaches that may help with pain management.

Inspiration and Dedication

RWHC: What initially attracted you to this field, and what continues to inspire you about it?

TB: Initially, I was attracted by the newness of the field. We only had a few approved drugs at that time and the MS professional community was relatively small. Now, it is the rewards of patient care that keeps me motivated. I have patients whom I have been following for more than ten years. You become friends with patients and visits can be fun and joyful. When patients have a decline in function, or health, or spirits, it is so important to stay involved as their care provider. Often just being accessible gives patients the trust and reassurance that they need to help them to cope.

 

Multiple Sclerosis: Overcoming Pain

Real World Health Care continues our series on pain management by speaking with Dawn Ehde, PhD, Department of Rehabilitation Medicine, University of Washington School of Medicine. Dr. Ehde serves as a clinical psychologist and professor at UW. She conducts research evaluating the efficacy of various behavioral, exercise, and pharmacological interventions for chronic pain, depression, and/or fatigue in adults with multiple sclerosis (MS) and other acquired neurological conditions.

Dr. Ehde discusses some of her recent clinical and research work on cognitive-behavioral interventions for MS-related pain.

Living with MS and Pain

Real World Health Care: In 2015, you published an article: Utilization and Patients’ Perceptions of the Effectiveness of Pain Treatments in Multiple Sclerosis. Can you summarize the key results of your study and the implications for patients with MS?

Dawn Ehde, PhD, University of Washington School of Medicine

Dawn Ehde: We conducted this survey to learn more about pain management from the perspective of people living with MS and pain. We found that people with MS and pain try a lot of different treatments to manage pain, but few treatments provide adequate pain relief.

Nonprescription medications such as nonsteroidal anti-inflammatories and physical modalities such as massage were some of the most common methods used. Many use more than one treatment to manage pain. Some of the treatments that individuals rated as most helpful, such as hypnosis, were infrequently used. In fact, we found that very few people surveyed had tried or accessed behavioral pain treatments such as training in mindfulness meditation, cognitive behavioral self-management, or self-hypnosis. This was the case even though there is good evidence that these types of treatments are beneficial to many people with chronic pain, including MS, and have few or no negative side effects. This study highlighted for me the need to improve access to these types of non-pharmacological pain management.

Integrated Care Approach

RWHC: Are you currently involved in any other research relating to pain management in MS patients?

DE: We have several studies in various stages that address pain management in MS. We recently published a study that found that an eight-session telephone-delivered self-management intervention was effective in reducing pain (both its severity and its interference with activities) and fatigue. It also was effective in improving mood, quality of life, and resilience. The benefits were maintained at 6- and 12-month follow ups. Patient satisfaction with the treatment was high as well.

The study I am most excited about is the MS Care study, which is a comparative effectiveness trial that evaluated the benefits of an integrated care approach to pain and depression management in the clinic called “collaborative care.” The MS version, called “MS Care,” aims to improve the quality of pain care in the clinic by adding an MS Care manager to coordinate care, deliver brief behavioral treatments, initiate or adjust other medical treatments, and ensure patients do not slip through the cracks. We also offer patients the choice of getting their care management by phone or in person. Seventy-five percent chose the phone. We found that patients with chronic pain and/or depression randomly assigned to MS Care had significantly improved pain and depression symptoms, including less severe pain, less interference, less disability, and less fatigue. Additional details on the results are available at http://www.uwmscare.org/background.

Opportunities in MS Pain Research

RWHC: What are some of the biggest challenges facing researchers who are studying pain management in MS patients? How can those challenges be overcome?

DE: I actually see a lot of opportunities as an MS pain researcher. The MS community is interested in improving pain management and supporting research in this area. For example, the National MS Society has named pain as one of its research priorities. We also often find people with MS are willing participants in our research, both as participants as well as stakeholders who guide us in our research. For example, we used stakeholders to guide our MS Care study. At times, we have had to work hard to convince potential funders that pain is an issue that warrants funding and study, but that has improved in the time that I’ve been doing research. We have come a long way since I first started in this area, when pain was not always recognized as an important problem deserving attention in MS.

Challenges for MS Clinicians

RWHC: What are some of the biggest challenges facing clinicians who are treating MS patients with pain management problems?

DE: MS presents many different symptoms to manage, and thus both patients and clinicians have a lot to discuss and manage in the typical clinic appointment. One challenge is that pain management is often only one of several issues being addressed. As such, it may be difficult to fully manage a complex issue like chronic pain. I think these challenges may be overcome by rethinking how we approach and deliver pain care. We need to look at harnessing technology — including telehealth technologies — to improve care. We also need to empower patients and the MS community to recognize that pain management is something that requires active self-management and multimodal strategies.

Pain Management Therapies

RWHC: What do you see as the most promising pharmaceutical therapies for treating pain in MS patients? What are the caveats that must be understood by clinicians when prescribing such therapies?

DE: As a psychologist, I’m less able to speak to promising pharmaceutical therapies on the horizon. However, I think there are promising practices for how we deliver pain care, including medications and other rehabilitation interventions. We did manage medications in our MS Care study, and our goal within that was to promote the appropriate and effective use of pain medications and other medications that can benefit pain management, such as some of the antidepressants which have analgesic benefits. We know from our research that too often, patients get started on a treatment, perhaps at a “low dose,” and for whatever reason, they don’t have adequate follow up to adjust, intensify, or change treatment plan. In the MS Care study, we closely and quickly followed patients’ pain and adjusted treatments to optimize their benefits or switched treatments if needed. We also know that physical activity — whether it is physical therapy or encouraging physical activity — benefits people with MS and likely helps with pain management.

RWHC: Do you see a role for non-pharmaceutical pain management therapies in treating pain in patients with MS?

DE: Certainly. This is where I’ve spent most of my energy, not only because I am a psychologist, but also because many people with MS want to use non-pharmacological therapies and strategies. The people with MS I know and our stakeholders are eager to advance our understanding and use of non-pharmacological treatments such as mindfulness meditation, relaxation, and cognitive behavioral coping skills.

Partnering with Patients

RWHC: What initially got you interested in this field? What continues to inspire you?

DE: I have had family and friends with MS, and thus was drawn to learning more about MS. I started out conducting chronic pain research in people where chronic pain such as headaches was the primary problem. When I started working with patients with MS clinically, I was struck by how little we knew about MS pain management and how people with MS pain were not accessing care we knew was helpful in other pain populations.

I’ve been inspired and continue to be inspired by the people with MS whom we’ve partnered with to conduct our research. Our best research has resulted from partnering with people living with MS. They’ve also taught me a lot about resiliency. Although MS can present many challenges like pain, many people with MS and pain live full, meaningful and happy lives.

I also have been fortunate to have training grants from the National MS Society, which have allowed me to train postdoctoral fellows in MS and rehabilitation research. They represent the next generation of clinical researchers in pain and symptom management in MS.

The Central Nervous System: A Brief Primer

The central nervous system (CNS) consists of the brain and the spinal cord. It sends and receives information from the peripheral nervous system—the vast network of nerves that feed into every tissue of the body. These signals enable voluntary and involuntary movement, and allow the brain to process and interpret sensory information sent from the spinal cord.

Emily Burke, BiotechPrimer.com

Emily Burke, BiotechPrimer.com

Specialized cells called neurons make up the CNS. Neurons send and receive signals electrochemically, meaning a chemical message is converted into an electrical signal within the neuron. When a chemical message (a neurotransmitter) reaches the edge of the neuron (the dendrite) the neurotransmitter causes ion channels in the cell membrane to open. This action allows positively charged sodium ions to enter sending a charge—an electrical signal—through the body of the neuron. The charge leaves through the neuron’s opposite side, another extension call an axon. This release causes other neurotransmitters to activate other neurons. Different neurons send and receive different types of neurotransmitters. Billions of neurons within the central nervous system communicate via 100+ different types of neurotransmitters. This neuron/neurotransmitter dual regulates just about everything within the human body from movement, to hunger, to body temperature, to emotion, and to wakefulness.

Not surprisingly, such a complex system—and the various diseases that affect it—are not entirely understood. Conditions that impact the CNS include infectious disease, genetic disease, cancer, stroke, and traumatic injury. In the next few paragraphs, we’ll take a closer look at four CNS diseases that are top research priorities.

Huntington’s Disease (HD)

Huntington’s disease (HD) is a neurodegenerative disorder— neurons progressively lose structure and function. As the disease continues and more neurons are damaged and die, symptoms get worse. Early stage patients may experience subtle involuntary movements and mood disturbances, but as the disease progresses, patients lose the ability to walk, speak, and swallow. Life expectancy is 20 years after onset of initial symptoms. 90 percent of HD cases affect adults between the ages of 30 and 50; juvenile onset occurs in the remaining 10 percent of cases.

HD is a monogenic disease, meaning it is caused by a mutation in one gene, dubbed the Huntington gene. The disease is also dominant. Everyone has two copies of each gene; for dominant genetic diseases, one mutated copy ensures the person will develop the disease, even if the other copy is correct. In practical terms, this means if an individual’s parent had HD, that individual has a 50 percent chance of developing it themselves. Because there is currently no cure for HD, some at-risk individuals may choose not to be tested for the gene. In fact, HD testing of people younger than 18 is prohibited, unless they are already showing symptoms of juvenile onset HD. This moratorium is to ensure that those tested understand the full implications.

Despite knowing the genetic basis of HD, scientists do not yet fully understand the disease mechanism. Recent advances in gene therapy and genome editing (fixing defective gene copies with functional copies) offer new hope for an HD cure. Replacing dead or damaged neurons with new neurons derived from stem cells is another approach under investigation.

Parkinson’s Disease

Like HD, Parkinson’s disease (PD) is a neurodegenerative disorder. In particular, PD patients have reduced activity and death of neurons that secrete the neurotransmitter dopamine. Typical symptoms of PD include motor disturbances such as tremors, slowness of movement, and rigidity, as well as a decline in cognitive function. Since PD primarily affects people over 60, as the Baby Boomer population ages, significant increases in PD are expected.

Parkinson’s is not a genetic disorder in the same sense that HD is—there is not a specific gene associated with it. In fact, the majority of cases are classified as “sporadic,” in other words, arising without a genetic association or apparent cause. Ongoing research into the disease involves teasing out genes that may indicate increased susceptibility. There is currently no cure for PD; however drugs that mimic the effect of dopamine have proven successful at managing some of the motor disturbances. Ongoing research also involves using stem cell-derived neuronal cells to replace dead or dying neurons.

Multiple Sclerosis

Multiple sclerosis (MS) is an autoimmune disease in which the patient’s own immune system attacks and destroys the protective insulating layer known as the myelin sheath that surrounds the axon section of the neuron. This lack of myelin results in problems with the transmission of electrical signals from one neuron to the next.

MS typically strikes people in their early adult years. Initial symptoms vary widely, as they are dependent on the particular part of the CNS that is under attack, which can include motor, sensory, or visual problems. Initial symptoms are often highly intermittent, and might not reoccur for years. MS is a chronic, progressive disease, with symptoms gradually worsening over decades. Advanced patients are often confined to a wheelchair.

Like PD, there is no clear-cut genetic cause, although some genes have been identified as susceptibility genes, or genes that increase the odds of an individual developing MS. It is more common in women by a three to one ratio; this suggests that hormones play a role in susceptibility as well. Geography is also a factor—there is a higher incidence of cases the farther north one travels from the equator. Since sunlight is required for the sufficient production of vitamin D, it’s speculated that vitamin D may play a protective role in susceptible individuals. Likewise, in some cases it is thought that viral infections may trigger MS. The ultimate expression of the disease is likely the result of a combination of genetic and environmental factors.

Although there is no cure for MS, there are a number of drugs on the market that slow down its progression by blunting the immune system’s attack on the CNS.

Alzheimer’s Disease

Alzheimer’s disease (AD) accounts for approximately 70 percent of dementia cases. Like HD and PD, it is a neurodegenerative disease, with neurons in the hippocampal region of the brain associated with memory formation being among the first affected. By 2025, the number of people age 65 and older with Alzheimer’s disease is projected to reach 7.1 million—a 40 percent increase from the 5.1 million affected in 2015 (Alzheimer’s Association). Alzheimer’s disease is associated with the build-up of amyloid-beta (Aβ) plaques in patients’ brains.  But what, exactly, are Aβ plaques? Aβ plaques derive from the cleavage of a protein called the amyloid precursor protein, which is thought to play a role in the formation of synapses. Individual Aβ molecules clump together to form the plaques associated with Alzheimers’.

Until very recently, the mechanism by which Aβ plaques might cause Alzheimer’s was not known. Researchers at Stanford School of Medicine have recently demonstrated that Aβ binds to a receptor on nerves cells that disrupts the function of synapse.  This finding suggests a potential drug target: the ability to disrupt this interaction could preserve functioning nerve cells.

There is currently no cure for AD; however a number of different companies are working to develop treatments, with a few already in clinical trials. These potential treatments and the basic science that drives them will be covered in a future post.

Rebounding from the Impact of Multiple Sclerosis: The Champlin Family’s Story

Editor’s Note: Real World Healthcare will be taking a brief hiatus during the month of August. During this time, we’d like to share with you some of the compelling stories we’ve published about patients facing both medical and financial hardships.

 

Life has not been the same for Dee Champlin, her husband Mark and their two sons since Dee was diagnosed with multiple sclerosis (MS) in 2008. The disease has imperiled Dee’s vision, severely limited her walking and weakened her memory and speech. But she and her family have always found ways to bounce back.

Dee Champlin, receiving treatment for MS

Dee Champlin, receiving treatment for MS

Symptoms such as sensitivity to hot weather, temporary numbness and joint pain had been growing more and more common for Dee beginning in 1988.  But, as with many MS patients, it was eye problems that ultimately led doctors to the MS diagnosis 20 years after her symptoms first appeared.

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A Message from our Sponsor: Are you, or is someone you love, an MS patient on Medicare in Need of Financial Assistance? Click here to visit the HealthWell Foundation’s eligibility page.

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In one crisis, Dee suddenly began slurring her speech and drooling. Hours later, vision in her left eye started disappearing under what she described as a dark veil. A series of three ophthalmologists assessed the problem before determining she had bleeding inside the eye. This led to MS testing. Four tests, including an MRI and a spinal tap, all came back positive for MS, revealing 14 lesions on her brain at the time.

Mark describes a moment during one of Dee’s hospitalizations when he shifted from a negative attitude to a positive one that still guides the family.

Their challenges had hit him “like a punch to the gut,” he said. “Why us?” he thought. “Everything changed so fast. But then I thought, eventually we are going to get out of this hospital and go home. Things could be so much worse. With all the bad things that are happening to Dee, I don’t want to deal with my own negative attitude.”

That outlook has allowed the Champlins to absorb many changes in their lives as they cope with Dee’s health. Mark had been a self-employed truck driver but sold his semi and changed jobs to be near home after Dee had two health emergencies while he was on the road.

The couple moved from Nebraska to Lockport, N.Y., outside Buffalo, to live closer to their family for more support. Mark began working an overnight shift so he would be available to accompany Dee to medical appointments during the day.

They have both learned that MS produces good days and bad days. And on any given day, they know their plans may change, as Dee’s physical condition may vacillate from morning to afternoon.

Their sons, ages 7 and 2 when Dee’s illness was finally diagnosed, have adapted too. They pitch in at home, help out with laundry and even endure a dreaded chore — washing dishes — when their mom needs it. Their parents are attentive to addressing the boys’ concerns about Dee. They speak openly with them, but still encourage their kids to truly be kids with as normal a life as possible.

The Champlins’ latest rebound was receiving a HealthWell grant that allowed Dee to resume treatment with the only MS medication that has ever made a difference for her. Earlier, after two years of this treatment with daily injections, she received a letter from her insurance provider saying her drug costs had already exceeded the plan’s lifetime maximum. The letter concluded with this line: The cost outweighs the benefits.  “I’ll never forget that as long as I live,” Mark said.

Despite the complex and intensive medical care Dee has been through, the family takes comfort in knowing that Dee’s form of MS is not fatal and that they can continue fighting it. Returning to a previously effective drug should give Dee a better quality of life.

“So many find out they have a disease that gives them literally weeks or months to live,” Mark said. “They don’t get the ‘opportunity’ to push their loved one around in a wheelchair for the next 30 years. Luckily, I do!”

 

Categories: Cost-Savings, General

How HealthWell Foundation’s MS Fund Helped Charlie Get His Life Back on Track

Editor’s Note: Real World Healthcare will be taking a brief hiatus during the month of August. During this time, we’d like to share with you some of the compelling stories we’ve published about patients facing both medical and financial hardships.:

Charlie Barron

Charlie Barron

Charlie Barron was raised to set goals, make plans, get things done. But setting and meeting goals has become exceptionally hard since Charlie, 46, discovered he has multiple sclerosis.

Because of his MS, Charlie is unable to work and therefore struggles to pay for the expensive treatments he has needed since he was diagnosed in 2010, a decade after his symptoms first appeared. He received HealthWell Foundation grants in 2014 and 2015.

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A Note from Our Sponsor: Are you, or is someone you love, an MS patient on Medicare in Need of Financial Assistance? Click here to visit the HealthWell Foundation’s eligibility page.

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Before his diagnosis, this resident of DeKalb, Ga., had a career as a chef. On the job, he often stood 12-14 hours a day, despite a pins- and-needles sensation in his feet and numbness in his legs that went on for years. For a long time, he considered his physically demanding work the cause of his pain, yet his employer provided no health insurance.

Later, Charlie combined his cooking skills with his interest in fitness to open his own business.  As a personal trainer, he led clients in morning workouts in their homes, then cooked them a healthy breakfast in their kitchens. At that point, he bought himself health insurance.

However, his insurance policies have been unreliable in covering his medications. For instance, his first medication was covered, but when it proved ineffective for him, his insurance company declined to pay for the next prescribed treatment. Moving from private insurance, he obtained Medicare coverage through disability and thought those challenges would change. Recently his doctor recommended adding a second drug to Charlie’s treatment plan which has staved off relapses for the last two years, but the out-of-pocket expense was still unmanageable.

In a note thanking the Foundation for its financial assistance, Charlie described how he felt when he found out the cost of his care.  “Even though I was ready to physically fight to get my life back from MS, my finances were not so ready for battle,” he wrote. “I learned that the medication my doctor prescribed would cost upwards of $1,100 per month. I felt that I had been knocked down before I even had a chance to throw the first punch.”

“The HealthWell Foundation has given me the peace of mind to focus my energy on fighting MS and encouraging others to do the same,” Charlie’s letter said.  He continues learning about MS at a local MS center, takes physical therapy and has participated in activities such as a painting class with others coping with MS.

Social media connects him with additional people with the illness. Hearing about others’ experiences with MS, giving them encouragement or simply offering a kind word to lift their spirits gives Charlie strength.

Benefiting from the supportive care of his wife, brother-in-law and 13-year-old daughter, he urges other people with MS to seek support from family or a strong support group.  For caregivers, he recommends researching MS through the Internet, books or the MS Society to know what to expect.

Not comparing the present with the past is important to him as well. “It’s not about what you used to do, it’s about what you are trying to do now,” Charlie says.

Are you an MS patient like Charlie? How are you coping with the disease and its treatment costs? Let us know in the comments.

 

Rebounding from the Impact of Multiple Sclerosis: The Champlin Family’s Story

Life has not been the same for Dee Champlin, her husband Mark and their two sons since Dee was diagnosed with multiple sclerosis (MS) in 2008. The disease has imperiled Dee’s vision, severely limited her walking and weakened her memory and speech. But she and her family have always found ways to bounce back.

Dee Champlin, receiving treatment for MS

Dee Champlin, receiving treatment for MS

Symptoms such as sensitivity to hot weather, temporary numbness and joint pain had been growing more and more common for Dee beginning in 1988.  But, as with many MS patients, it was eye problems that ultimately led doctors to the MS diagnosis 20 years after her symptoms first appeared.

********************************************************************************

A Message from our Sponsor: Are you, or is someone you love, an MS patient on Medicare in Need of Financial Assistance? Click here to visit the HealthWell Foundation’s eligibility page.

********************************************************************************

In one crisis, Dee suddenly began slurring her speech and drooling. Hours later, vision in her left eye started disappearing under what she described as a dark veil. A series of three ophthalmologists assessed the problem before determining she had bleeding inside the eye. This led to MS testing. Four tests, including an MRI and a spinal tap, all came back positive for MS, revealing 14 lesions on her brain at the time.

Mark describes a moment during one of Dee’s hospitalizations when he shifted from a negative attitude to a positive one that still guides the family.

Their challenges had hit him “like a punch to the gut,” he said. “Why us?” he thought. “Everything changed so fast. But then I thought, eventually we are going to get out of this hospital and go home. Things could be so much worse. With all the bad things that are happening to Dee, I don’t want to deal with my own negative attitude.”

That outlook has allowed the Champlins to absorb many changes in their lives as they cope with Dee’s health. Mark had been a self-employed truck driver but sold his semi and changed jobs to be near home after Dee had two health emergencies while he was on the road.

The couple moved from Nebraska to Lockport, N.Y., outside Buffalo, to live closer to their family for more support. Mark began working an overnight shift so he would be available to accompany Dee to medical appointments during the day.

They have both learned that MS produces good days and bad days. And on any given day, they know their plans may change, as Dee’s physical condition may vacillate from morning to afternoon.

Their sons, ages 7 and 2 when Dee’s illness was finally diagnosed, have adapted too. They pitch in at home, help out with laundry and even endure a dreaded chore — washing dishes — when their mom needs it. Their parents are attentive to addressing the boys’ concerns about Dee. They speak openly with them, but still encourage their kids to truly be kids with as normal a life as possible.

The Champlins’ latest rebound was receiving a HealthWell grant that allowed Dee to resume treatment with the only MS medication that has ever made a difference for her. Earlier, after two years of this treatment with daily injections, she received a letter from her insurance provider saying her drug costs had already exceeded the plan’s lifetime maximum. The letter concluded with this line: The cost outweighs the benefits.  “I’ll never forget that as long as I live,” Mark said.

Despite the complex and intensive medical care Dee has been through, the family takes comfort in knowing that Dee’s form of MS is not fatal and that they can continue fighting it. Returning to a previously effective drug should give Dee a better quality of life.

“So many find out they have a disease that gives them literally weeks or months to live,” Mark said. “They don’t get the ‘opportunity’ to push their loved one around in a wheelchair for the next 30 years. Luckily, I do!”

 

Are Patients Talking and Are Doctors Listening?

Rheumatologist Daniel J. Wallace, M.D., who has treated more than 2,000 people with lupus, holds what he calls a counseling session with each patient he diagnoses with the disease. As he writes in his book, The Lupus Book, he uses these sessions to educate patients about their illness and explain their treatment. This step, he writes, is essential to establishing a good long-term relationship with a new patient.

Mollie Katz

Mollie Katz

Dr. Wallace’s approach is an example of patient-centered care, a principle widely considered vital to quality health care.

The Institute of Medicine defines patient-centeredness as “care that establishes a partnership among practitioners, patients, and their families (when appropriate) to ensure that decisions respect patients’ wants, needs, and preferences.”  The definition also includes providing patients with “the education and support they need to make decisions and participate in their own care.”

Barriers to Communication and Trust 

Because patient-centered care hinges on trust between patients and their doctors, many medical societies, patient advocacy groups and health care institutions have focused on ways to build trust. Their solutions always emphasize better communication, and physicians and other members of the health care team are taught to listen carefully and empathetically to patients.

Yet barriers to good communication persist.

Findings issued in February about multiple sclerosis (MS) care, for instance, have shown that both neurologists and patients can be hesitant to discuss important issues, even those central to MS.

The State of MS Report released by the State of MS Consortium found that in the U.S. and four western European countries, 19 percent of MS patients said they were uncomfortable talking about walking problems and tremors.

With more sensitive and private issues, patients expressed even more hesitation. Concerns about sexual difficulties left 54 percent of patients reluctant to talk to their doctors. Twenty-eight percent were uneasy discussing bowel and bladder problems, and 21 percent were uncomfortable discussing cognitive or memory issues.

In the study, physicians considered time pressures a barrier to good communication. Patients agreed, but said not wanting to be labelled “difficult” by their doctors was a bigger hurdle.  

Testing Improvements 

Researching ways to strengthen communication between health care providers and patients is a priority of the Patient Centered Outcomes Research Institute (PCORI), which funds research on patient-centered care. PCORI is a nonprofit, non-governmental body established by Congress as a provision of the Affordable Care Act.

One PCORI-funded study is testing whether involving patients in decisions about their treatment will improve their use of prescribed drugs. According to the researchers in Boston, nearly one-third of patients don’t fill new prescriptions.

Sometimes that’s because they disagree with their doctors on the need for medicines. Some patients fear the side effects or toxicity of a drug. Some have incorrect perceptions of effective care. Others lack social or financial support needed to follow prescribed treatment.

In the study, patients and providers will consider the available scientific evidence, as well as the patient’s values and preferences, and decide together on treatment.

Dr. Wallace, the lupus specialist, acknowledged in his book that physicians may harm their relationships with patients by acting too judgmental, intimidating and hard to approach, leaving patients afraid to discuss serious issues about their treatment. Patients, too, he says, can be challenging to work with when they hesitate to trust their doctors because they are hostile, anxious or depressed beyond the level that would typically be found in someone with lupus.

He urged patients to be unafraid to state their concerns clearly and to get a second opinion if they wish, knowing this should not imperil the relationship with the doctor. His description of a good doctor-patient relationship includes open communication, mutual honesty and respect and understanding of one another’s lifestyles and limitations.

“A patient’s relationship with his or her doctor is akin to a complex commitment,” he writes. “The doctor is half of the ticket to good health, and both sides have to put up with each other’s idiosyncrasies.”

Have you ever avoided difficult discussions with your physician about your care? Tell us why and how you were able to overcome the situation in the comments below.

Speaking with: Ann Romney

Editor’s Note: This week is MS Awareness Week and people everywhere are creating connections stronger than the ones MS destroys. During this special week, take action to help others learn more about MS and what they can do to make a difference. In 1998, Ann Romney, wife of American businessman and politician Mitt Romney, was diagnosed with MS. Here, she shares her experiences as someone living with MS.

Real World Healthcare: How did you first learn you had MS?

Ann Romney

Ann Romney

Ann Romney: The year was 1998, Mitt and I were living in Boston. We had five sons, mostly grown with our youngest son still living at home as a senior in high school. The symptoms came on slowly at first, I would feel dizzy or have a hard time holding a glass. Then they worsened, I was tired, my right leg was numb, I was losing my balance. I explained my symptoms to my brother Jim, a doctor, and he suggested I see a neurologist. Mitt accompanied me to the doctor to find out the results of testing, we learned together I had MS.

RWHC: What were some of your biggest concerns when you were first diagnosed with MS? How did the time and energy required to take care of your own health impact your family?

AR: When first diagnosed with MS, I was very frightened and depressed. I had many commitments, to my family, church and community. My biggest concern was that I would not be able to keep up with my responsibilities in and outside of the home much less take care of my health. The disease was progressing rapidly and I had no idea if it would stop or how debilitated I would become.

I was blessed to have Mitt by my side. He didn’t miss a beat and immediately picked up the slack at home. We ate a lot of peanut butter and honey sandwiches (Mitt’s specialty) during that time but what really mattered was the love and support I received from Mitt and my family.

RWHC: Tell us about your earliest days with the disease—the process of being diagnosed and starting treatments—did you have any difficulties accessing the appropriate physicians and/or treatments?

AR: When I was diagnosed in the late 90s, there weren’t many treatments for MS. I was told to go home and come back when the disease got really bad. That was a common response to an MS diagnosis 20 years ago. Then a friend told me about a neurologist who took a different approach to treating MS, Dr. Howard Weiner at Brigham and Women’s Hospital.  The first time I saw Dr. Weiner, he told me he would be aggressive in treating the disease – I began intravenous therapy that day. 

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A note from our sponsor: Are you, or is someone you love, an MS patient on Medicare in need of financial assistance? Click here to visit The HealthWell Foundation’s eligibility page.

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RWHC: I understand that you have credited a mixture of mainstream and alternative treatments with helping to manage your disease. Explain how that is so.

AR: I feel best when I am properly rested, eating healthy, whole foods and when I incorporate exercise into my daily routine. I try to do yoga or Pilates several times a week as well as ride horses, all have been extremely helpful in developing my core. When newly diagnosed, I tried several activities to boost my energy including reflexology and acupuncture. Over time, these methods helped to improve my energy levels.

RWHC: What was the turning point or catalyst that changed you from an MS patient to an MS activist?

AR: During the campaign, I was blessed to have the opportunity to travel the country and hear from Americans daily. At many of the events I attended, people diagnosed with neurologic diseases would come out to support me – not because we shared political ideology but because we had a disease in common. They would often wait standing in the hot sun for hours. By the time I would reach them, they would be tired and weak – sometimes collapsing. I can’t tell you what it meant to me – day after day – having those people show up for me. After the campaign ended, I would often find myself thinking of those people and wonder how I might return the favor. How I might show up for them.

While talking with Dr. Weiner at one of my annual visits, he told me about the research he was doing in the MS space and that it was affecting research in other neurologic diseases. I asked him what was needed to further the research, he said awareness and funding. That’s the moment I knew I could be helpful. Together with Brigham and Women’s Hospital, we opened the Ann Romney Center for Neurologic Diseases.

RWHC: Explain the type of work you’re doing to establish the Ann Romney Center for Neurologic Diseases at Brigham and Women’s Hospital. What is your goal and the goal of the Center?

AR: Through the Ann Romney Center for Neurologic Diseases, Brigham and Women’s Hospital we will convene and lead a global collaboration in medical research to accelerate treatment, prevention and cures for five of the world’s most complex and devastating neurologic diseases. Together, we will inspire hope and empower those confronting multiple sclerosis (MS), Alzheimer’s disease, ALS (Lou Gehrig’s disease), Parkinson’s disease and brain tumors.

I have set a personal goal to raise 50 million dollars in support of the Ann Romney Center. My mission is to enable the doctors at the Ann Romney Center to find cures for neurologic diseases so that the next generation does not have to suffer as so many are today.

RWHC: Many MS patients are not just grappling with the health effects of the disease, they are grappling with the financial effects as well. For some, it may come down to decisions between paying their monthly mortgage or paying for their monthly medications. Fortunately, there are charitable patient assistance programs like the HealthWell Foundation, which provide financial relief—even when the patients have insurance, the costs of the copays alone can create financial hardship. How important do you think programs like this are in terms of helping patients manage their disease?

AR: Being diagnosed with MS was one of the scariest moments of my life—for me and for my family. But we were fortunate to have access to great care, treatment and therapy. I am grateful for programs such as The HealthWell Foundation that work to remove some of the financial burden of treatment and allow the patient to focus solely on their treatment and recovery.

RWHC: What do you want MS patients and their professional and family caregivers to know about MS?

AR: Collectively, MS, Alzheimer’s disease, ALS (Lou Gehrig’s disease), Parkinson’s disease and brain tumors affect more than 50 million people worldwide. These neurologic diseases are among the most devastating diseases of our time.

In my darkest hour, Dr. Weiner was a beacon of hope. I was desperately sick and feeling very alone with my illness. Life felt out of control and I didn’t know how to make it better. I was losing hope. Dr. Weiner took me by the hand and said, “You’re going to be okay. Come with me. We’re going to take care of you.” Giving my disease over to Dr. Weiner allowed me to stop worrying and instead focus on getting better. And after a long battle with MS under the care of Dr. Weiner, I am in remission. Dr. Weiner and the incredible folks at Brigham and Women’s have created a center that is improving lives every single day. I am humbled that my name is associated with this work, and through the Ann Romney Center for Neurological Diseases, I want to be that beacon of hope to those suffering, just as Dr. Weiner was for me.

 

 

How New Apps and Technology Create a New Central Nervous System for MS Patients: A Look at the Current State of Online Disease Management

By Vanessa Merta, Science Blogger

RWHC Writer Pic-2

Vanessa Merta

With over two million people suffering from multiple sclerosis and a cure for the debilitating autoimmune disease remaining illusive, patients are using new technologies to improve how they manage the disease. By leveraging web-based technologies and smart phones, patients have new weapons to improve their symptom management by collaborating with other patients and access care more easily.

Websites such as www.PatientsLikeMe.com play a supportive role by helping patients understand and manage their disease, and track potential outcomes. Patients use the website to connect with other patients to track symptoms, relapses, and medication results. By entering these data, patients not only learn more about managing their illness, they also help scientists and doctors use the data for research.

In a recent TedxTalk, PatientsLikeMe President, Ben Heywood, spoke of the growing MS community, currently at over 25,000 active users on the site. “You can see what it’s like to have MS,” said Mr. Heywood. “Symptoms in real-time of thousands and thousands of patients [are captured],” analyzed for trends, and help inform researchers in ways that may expedite a cure.

These widespread patient histories may prove to be helpful to drug developers because they can see what symptoms are not well managed, in the hopes of creating a goal for a future drug. With the knowledge of medication success rates, researchers can see if any drugs have the potential to be improved, or if they should be forgotten all together. Before websites like PatientsLikeMe.com, obtaining this kind of information was nearly impossible.

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Want to help those suffering with MS? Consider donating to the HealthWell Foundation, and note that you wish for your donation to go to the MS Fund. Click here to learn how to donate to patients in need. ************************************************************************************************

When patients are on the go and don’t have access to a computer, smart phone applications offer welcome help. Patients have their entire health history with them at all times with apps such as the MS Association of America’s Multiple Sclerosis Self-Care Manager. Patients track mood and symptoms in a journal, and record whether or not they’ve taken their medications on schedule. In emergency situations, MS Self-Care Manager helps find physicians or hospitals with a Google-Map powered locator. The app makes doctor’s appointments more productive due to immediate access to lab results, and a record of all symptoms since the patient’s last visit.

Medical technology is trying to lessen the burden that an MS diagnosis may bring. Resources for patients are continuing to improve with the development of smart phone apps and online sites where patients can collaborate.

Technology has created its own version of a central nervous system by building a patient community with dynamic connectivity. Helping patients to manage symptoms by improving hand-held technology has become a reality for tens of thousands of MS patients. Until we have a cure or advances in medicine, these simple programs offer real benefits.

Tell us what you think about symptom tracking and online disease management. Have you put any of these products to good use?

Categories: General

Learning About Multiple Sclerosis (MS) on the Internet: What Works and What Doesn’t?

If you have multiple sclerosis there is a lot that doesn’t work. And what isn’t working is both unpredictable and constantly changing. MS affects everyone differently. And it’s a very wide range of different. While one person may have sensory issues (perhaps a leg is always numb), another person may have movement issues (like muscle weakness or spasticity), and yet another person may be unable to leave bed. You may even know someone who has MS and not realize it. That’s how variable this disease can be.

aghs web

Amy Gurowitz

It’s because of this variability that learning about the disease can be really tough. As you can imagine, learning about what may never happen to you can create tons of anxiety, and this emotional state is not conducive to learning and empowerment.

What works and what doesn’t when trying to learn about MS on the Internet is like a moving target. What a person needs to know changes as the disease progresses over time. And while anxiety is common for the newly diagnosed, even people who have been living with MS for many years go through changes in both the everyday symptoms and the course of the disease.

It’s also important that those who care about a person with MS know what is happening to their loved one so that they can be supportive and understand what he/she is going through. It’s hard enough to live with this disease; to be doubted brings the stress to a whole new level.

The Internet has helped people who are affected by MS in many different ways. Through social networking and the most current information about the disease, the online MS community is an active and interactive space that can help even those who are living with very limited mobility to become informed e-patients and advocate for themselves. And that’s very important.

But the existing websites (and there are more MS sites than there are noises in an MRI tube J) don’t go as far as they can in helping people with MS learn all that they need to. The sites that provide information can’t meet an e-patient’s individual learning needs or consider the emotional state they are likely experiencing. It’s no secret that learning about MS (in a meaningful way) is critical while coping with MS. It’s good to find control – considering MS is all about losing control – where you can.

When I was diagnosed with MS in 1988, it was long before the Internet was available or the FDA had approved any disease-modifying drugs. I was flailing. It was the Stone Age in isolation compared to the connectivity we have today, and I struggled to learn about my version of MS using printed materials and support groups, both of which triggered so much anxiety and fear it was, in and of itself, immobilizing. I vowed to avoid information and just wait and see how my MS would play out. Looking back, it’s clear that this was my only choice at the time.

Then the Internet came to be, and everything changed. Well, not everything.

In 2006, I got my Masters in educational design and studied cognitive science and learning theory. I had an epiphany. There is a way to use the existing Internet technology to make for a personalized, self-directed learning experience that greatly reduces anxiety.

That’s when I founded MSSoftServe, a non-profit organization that aims to revolutionize how patients learn about their diseases on the Internet. The vision is that people with MS will be able to create a web space that is all their own, ensuring that their emotional and intellectual needs will be considered as an individual person, rather than taking the cookie cutter approach that current information sites offer. The site will be personalized so that people with MS will be able to learn about their unique version of MS their way. By establishing preferences, people will be able to control the information they receive. It will be a site like no other and, once produced, it will take full advantage of the capabilities the Internet offers.

Today, I know that change is possible for the 350,000+ Americans who have been diagnosed with MS and the 200+ individuals who are newly diagnosed every week. There is no reason that people who have a disease like MS should feel the same way I did when I was diagnosed 26 years ago. MSSoftServe will give patients what they truly need, not what someone else thinks they do.

Bringing MSSoftServe to life is no small task. Meeting the diverse needs of the MS population requires more content production and more complex site design than other websites. Through www.mssoftserve.org, we are spreading the word about the initiative, raising the required funding, and reaching out to the MS community to find out how to meet their learning needs so that MSSoftServe can help them cope with their version of the disease. Please take a moment to check out the site to learn more about this effort and spread the word to those who will benefit.

Have you or a loved one been diagnosed with MS or any other chronic disease? What would you want to learn on a site that could be customized for you?

Share your insights in the comments section.

Categories: General