Lung Cancer: Being a Better Caregiver

Real World Health Care_____________________________________________________________________

Deborah P. Brown

This week, Real World Health Care continues our series on caregiving by speaking with Deborah P. Brown, Chief Mission Officer of the American Lung Association. Brown oversees strategic planning and implementation of the Association’s health promotions programs, advocacy efforts and research programs. We talked about lung cancer programs and services offered by the Association for both patients and their caregivers.

Lung Cancer a Top Priority

Real World Health Care: The American Lung Association has a broad lung-health mandate. Where does lung cancer stand in terms of your overall mission?

Deborah Brown: The American Lung Association envisions a world free of lung disease. Our mission is to save lives by improving lung health and preventing lung disease, as well as to reduce the burden of lung disease on patients and their families. Lung cancer is a priority for the Association, and supporting caregivers is an important aspect of what we do.

Support for Lung Cancer Patients and Their Caregivers

RWHC: How does the American Lung Association help lung cancer patients and their caregivers?

DB: Being diagnosed with lung cancer is difficult. It quickly becomes overwhelming as people process their diagnosis, cope with their emotions and try to navigate the health care system.

We support lung cancer patients and their caregivers by providing comprehensive educational content at www.lung.org/lung-cancer. Our content navigator tool tailors information to each person’s journey, whether they’re a patient, caregiver or health professional. We also offer a toll-free Lung HelpLine at 1-800-LUNGUSA that provides expert bilingual guidance from nurses and respiratory therapists.

Because lung cancer patients and their caregivers value being able to speak directly with others who are in their shoes, we offer a free online support community. It’s a wonderfully caring and kind community of people facing similar challenges.

We also offer a number of resources dedicated to caregivers, including articles, videos, tips sheets and more. These resources cover everything from how to talk about lung cancer and cope with your emotions to self-care tips and how to prepare for the future.

Caregiving is Emotionally and Physically Draining

RWHC: How can family caregivers address the challenges they face when caring for a loved one who has lung cancer?

DB: Being a caregiver in any capacity can be emotionally and physically draining. We believe that family and friends can be better caregivers and advocates by understanding their loved one’s journey and their needs throughout the ups and downs of treatment. Because lung cancer patients are often immuno-compromised, it’s important for caregivers to stay as healthy as possible and up-to-date on their flu shots and other vaccines. And it almost goes without saying: they should never smoke around a lung cancer patient.

When caring for a loved one with lung cancer, it’s important to keep in mind that anyone can get lung cancer, regardless of prior smoking history. However, if the patient has smoked in the past, they may feel guilty and ashamed. Caregivers should reiterate that they are not to blame for their cancer and that they need to let those feelings go.

Caregiving Tips

RWHC: What sort of advice would you give to family caregivers?

DB: Let your loved one know you love them, you are there for them and you are ready to help them, no matter what. Learn as much as you can about lung cancer so you are better able to advocate for them and help them navigate the health care system. The priority is making sure they get the best possible treatment they can.

Understand your loved one’s boundaries. Some patients want their lives and activities to go on as normal and don’t want a lot of help, while others may feel overwhelmed and need assistance. Respect the wishes of your loved one so you can give them both the assistance and the space they need. Open communication is key. However, be mindful of your role. Your loved one may or may not want to tell people about his or her cancer. Do not share information meant to be kept private

We offer a full range of caregiver tips on our web site, and I encourage your readers to visit the site to get more detail. They can learn about the importance of:

  • Keeping appointments and following treatment instructions.
  • Getting to know the patient’s care team.
  • Letting the patient speak first during doctor appointments.
  • Helping the patient stay organized.

Taking Care of the Caregiver

RWHC: How can someone be a better caregiver?

DB: Accept that it’s normal to feel a wide range of emotions. While a positive attitude can improve both your and your loved one’s moods, it can be easier said than done. If you have a hard time staying positive, confide in someone you can trust. Talking about your feelings with a therapist or social worker specializing in cancer may be beneficial.

As mentioned before, stay healthy by staying up to date on your doctor visits and vaccinations. Get plenty of sleep, eat a balanced diet and try to do some form of physical activity every day. Allow yourself to take breaks from caregiving to recharge yourself.

Ask for help if you’re overwhelmed. Use your support system to help you run errands or do chores. Stay in touch with family and friends. Join a support group for caregivers. Some people find strength and support in religion and faith-based organizations.

Remember that every question you have is worth asking. Sometimes medical providers don’t bring up topics because they aren’t sure you want to hear about them. Don’t wait for the doctor to start all of the conversations. Ask all of your questions and make sure they get answered in a way you understand.

Read this article online at Real World Health Care.

Talk about your Health Care Choices before you’re Faced with a Crisis

Real World Health Care_____________________________________________________________________

Sjogrens

By Jon Radulovic, Vice President, Communications, National Hospice and Palliative Care Organization

A family is gathered by the bedside of a loved one who has been seriously ill, and now is likely near the end of life. Each member of the family has a different idea of what should be done and what their loved one would have wanted. That’s the point when the loved one and their family caregivers realize they should have planned ahead and talked about the care they would want in a medical crisis.

Heartbreaking scenes like this happen far too often.

The National Hospice and Palliative Care Organization encourages families to spend time talking about the care they would or would not want long before a medical emergency is at hand. This is particularly important when family caregivers are coping with a serious or life-limiting illness of a loved one.

Advanced Care Planning

Having discussions about one’s health care wishes is part of advance care planning.

Advance care planning involves making decisions about the care you would want to receive in a medical crisis that might be the result of a serious illness or an unexpected accident.  Advance care planning also involves deciding who will speak for you if you are not able to speak for yourself.

An essential part of advance care planning involves having these important conversations with your loved ones – and then completing the documents that will reflect your wishes.

Advance care planning also includes:

  • Deciding what types of treatment you would or would not want should you be diagnosed with a life-limiting illness or faced with a serious medical crisis. For some people this might include all possible medical interventions while others would prefer to make quality of life a priority.
  • Sharing your personal values and beliefs with your loved ones, caregivers and your health care professionals. Additional people to talk with might include a leader of your faith community or close friend.
  • Completing an advance directive to put into writing what types of treatment you would or would not want.
  • Designating a person as your health care power of attorney (sometimes called a health care proxy) to speak for you if you cannot speak for yourself. In some states, the advance directive form includes the health care proxy, other states make this an additional form.

Resources for Caregivers

NHPCO’s CaringInfo.org offers free state-specific advance directive forms and free information to help families talk about the care they would want. Visit caringinfo.org/planningahead.

Hospice and palliative care providers see how difficult it can be for families that have never talked about care choices and are in a crisis situation. Similarly, they see how beneficial it can be when the priorities at life’s end have been discussed and are clearly understood.

Not only is it important for each of us to clearly make our wishes known through advance care planning but it is one of the most important gifts we can give to our families and loved ones.

Read this article online at Real World Health Care.

Sjögren’s Syndrome: Reflections of a Caregiver

Real World Health Care_____________________________________________________________________

Sjogrens

By Jonathan Morse, MSc, member, National Board of Directors, Sjögren’s Syndrome Foundation

April is Sjögren’s Awareness Month. This article is reprinted with permission of the Sjögren’s Syndrome Foundation. It was originally published in The Moisture Seekers, Volume 37, Issue 03.

Today is not terribly different from any other day. It begins….slowly.

There is no way to know how my wife will feel. Will it be a sick day? Will it be a pain day? Will it be both?

I know these questions are not helpful. Instead, I need to know what to do and what to say. Instead of questions, I need to project happy thoughts and find the sunshine.

The role of Caregiver is demanding, unselfish and ever-present. The role requires an ability to not just listen, but to hear and then measure the appropriate response. Because my wife does not want help with everything. She still wants to preserve whatever bit of independence she can, because she has already lost so much. My tendency is to react, to offer to do everything.

It was not always like this. She used to be able to do so much more: clean the house, go for a run, take an exercise class, take a spin class, work in the garden, have a job, have a schedule – get up and go.

Over the many years of battling Sjögren’s, so many therapies and medications have been tried. And while the disease chose its own paths of advancement, the therapies and medication side effects have imposed their own blend of affect, interaction, ineffectiveness and ultimately uselessness.

The search for better and more effective treatment is endless. I spend an infinite amount of time reading blogs, web sources and drug explanations. Visits to specialists have become routine. The challenge in every encounter is to both cram as much background in as possible to set the table (mindful of the allowable 11-minute interval) then mine for gems that are actionable and deliver hope.

Difficulties managing the total body sickness are trumped by overcoming crushing fatigue, containerizing and filing pain, and the sense of loss: the feeling of what was this body, what activities used to be possible, time spent with friends and family, and possessing the energy to live are all different.

To look at my wife you may think “but….she looks fine.” Yes, she looks good. But I know the depth of the battle, the dimension of sickness, the crush of pain that no one else can see. I know the extraordinary effort it takes for her to simply get up and get ready to go. Everything hurts. The shower water hurts. Standing on bare feet hurts. Food hurts.

And still we get up and go places. We see people. And when she’s asked how she feels or told she looks and sounds better, she replies, “I’m fine.”

So many things have been taken away by Sjögren’s. Friends and even family members don’t know what to say, so many stay away. They simply can’t listen, comprehend, or empathize. They assume she is a burden, so they don’t include us in their plans. Sadly, family is precisely what my wife and I need — they serve as fuel to flush away the fatigue, silence the body sickness, and file the pain away.

So we come to a fork in the road. Should we be honest with friends and family as to the level of sickness and the level of life’s change? Or, should we withhold, internalize, and privatize as insulation to prevent any further pain and loss?

Loneliness has set in. For my wife, the loneliness comes from the thought that few — maybe no one — understands what living with Sjögren’s is like. No doctor, no specialist, no pharmacist…no one knows.

The same holds true for me, her caregiver. Dare I even say, “what about me?” Does anyone know what it’s like to watch a person you love slowly disintegrate? Does anyone understand the feelings we caregivers have — the helplessness, fear, hurt, sadness, guilt and loneliness? In a sense, we are bystanders with a close-up view of the tick-tock, tick-tock disease progression, treatment side effects, discomfort, and pain. Yet, we are powerless without tools to help.

I use the term ‘right-size’ to describe the types of activities we can do. The plans I make (suggest) are ‘right-sized’ to my wife’s daily ability level. I push aside the things we used to do, or more accurately stated, can no longer do. Instead I suggest, “let’s go shopping,” “let’s go for a walk,” “let’s go to a movie.” As caregiver, I have ‘right-sized’ my activity to the mutually acceptable level of the patient.

Through it all, we caregivers stay positive, strong, and resolute because there is no other choice.

To all the Caregivers out there, you possess the power to instill the seed of possibility, of promise and of hope. Smile.

Sjögren’s Syndrome Foundation is an organization driven to educate patients and their families, increase public and professional awareness and encourage research into new treatments and a cure. For more information, visit www.sjogrens.org.

Read this article online at Real World Health Care.

Lung Cancer Caregivers in the Spotlight at COPE Summit

Real World Health Care_____________________________________________________________________

Katie Brown, OPN-CG

This April marks the LUNGevity Foundation‘s second COPE Summit, held during its 9th Annual International Lung Cancer Survivorship Conference, April 26-28 in Washington, D.C. Directed toward caregivers of loved ones with lung cancer, the COPE Summit is one of three simultaneous summits at the Conference, which features a full weekend of information, networking and support designed to educate, connect and empower anyone who has been impacted by lung cancer.

“Lung cancer caregivers often report that they feel isolated and unsupported in their communities,” said Katie Brown, OPN-CG, vice president of Support and Survivorship Programs, LUNGevity Foundation. “Lung cancer is a disease with many misconceptions and stigmas. Because of that, there may be a sense of guilt, shame or anger associated with the disease. Unfortunately, practical services and emotional support for patients and their families is lacking in most communities.”

The COPE Summit was created to help bridge that gap, with sessions focusing on relationship issues, practical issues, and caregiver roles and needs. Caregiver burnout and “lone soldier syndrome” will be two of the topics covered. Caregivers and their loved ones will also be able to take advantage of large panel discussions with lung cancer experts.

Lung Cancer Caregiver Resources

The COPE Summit is just one of the many services and resources the LUNGevity Foundation provides for lung cancer caregivers. LUNGevity also offers an online Caregiver Resource Center with articles, videos, caregiving tips and other resources. A toll-free Lung Cancer HELPLine (844-360-5864) connects caregivers directly with oncology social workers and caregiver mentors. Caregiver-specific Twitter chats are held several times a year.

The online Caregiver Resource Center also provides detailed information on end-of-life planning, including legal and financial considerations, hospice decisions, how to prepare when death is near, and tips for coping with grief and loss.

“Many of legal and end-of-life issues should be addressed by all adults, regardless of whether or not they are ill,” Brown said. “If these conversations are too difficult for families, they may want to enlist the help of an oncology social worker, patient navigator or therapist.”

Self-Care for Caregivers

“It is crucial for caregivers to become educated about their loved one’s diagnosis, and their type and stage of lung cancer,” said Brown. “Our resources will help them help their loved one and will also help them practice self-care, which is equally important.”

Brown added that caregivers need their own practical and emotional support system. She encourages caregivers to ask for help and accept help when it’s offered. She also advises caregivers to take breaks from caregiving when they can and get as much rest as possible.

Editor’s Note: The LUNGevity Foundation’s mission is to make an immediate impact on increasing quality of life and survivorship for people with lung cancer by accelerating research into early detection and more effective treatments, as well as providing community, support and education for all those affected by the disease. LUNGevity’s ultimate goal is a world where no one dies of lung cancer. For more information, visit www.LUNGevity.org.

Read this article online at Real World Health Care.

MS Care Partners Crucial to Circle of Support

Real World Health Care

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Angel Blair, MA

This week, Real World Health Care closes our observance of MS Awareness Month by highlighting the Multiple Sclerosis Association of America (MSAA) and the full circle of support it offers to patients and their care partners. We spoke with Angel Blair, MA, client services specialist, who stressed the importance of understanding that while MS has a big impact on patients, it also impacts the patient’s entire family.

Physical and Emotional Support for MS Patients

Real World Health Care: What are some of the biggest challenges facing family care partners of people with MS?

Angel Blair: Family care partners often need to address a variety of challenges, from helping their loved one with activities of daily living such as cooking and bathing, to managing care decisions and financial issues, to making modifications within the home, such as adding entrance ramps, stair lifts or roll-in showers. If their loved one has mobility issues, they may need to help them with moving from one place to another – such as physically transferring them into and out of a wheelchair or driving them to appointments.

Many care partners faced with these challenges find that time management becomes a big issue, especially if they are working outside of the home. They also tend to neglect their own physical and emotional well-being, which is pushed aside to focus on their loved one.

These stresses of providing physical and emotional support to their loved one become acute when the care partner is the sole caregiver, with nobody else to rely upon. That is why care partners must seek out additional resources for help. Seeking help should not be seen as a sign of weakness, but rather a sign of strength.

RWHC: How can MSAA help care partners get the support they need?

AB: Our bi-annual magazine, The Motivator, regularly addresses topics for care partners. We host a number of educational programs around the country for patients and their care partners. Our web site contains on-demand videos and webinars as well as our MS Conversations blog. Plus, we have a number of ways people can access live help from an MSAA client service specialist: through our toll-free Helpline (800-532-7667, extension 154), a dedicated email address for MS-related questions, and online MS chat feature.

Through these various touchpoints, we can help care partners find resources and assistance in their local communities, whether that be financial assistance programs, respite care services, home care waiver programs, assistive equipment services, support groups or counseling services.

We also help to connect care partners with others who are experiencing similar issues through our online My MSAA Community forum, a peer-to-peer online forum for individuals with MS, their families and their care partners to share information and their experiences in a friendly, supportive and safe community.

MS Awareness Month

RWHC: Have you been doing anything special for care partners during MS Awareness Month?

AB: Yes. This year we are particularly focused on the theme of “MS and the Family” and have highlighted issues of particular interest to care partners, with webinars, podcasts, and “Ask Me Anything” online events. For those who may have missed the live events, everything is archived on our MS Awareness Month web site.

Progressive MS

RWHC: How do caregiver challenges change when the loved one’s disease course progresses, for example to Secondary Progressive MS?

AB: In many cases, it’s an issue of the same challenges, just more of them. When MS progresses, it’s important for care partners to work with their loved ones and their health care team to re-assess the current level of at-home care and determine if it is appropriate. Their loved one may need more assistive equipment or additional home modifications if their mobility decreases, for example.

Discuss issues openly and honestly. Are cognitive problems increasing? Can the loved one be left alone for extended periods of time? Can the care partner physically help to move their loved one in and out of bed, in and out of the bath, and in and out of the car? Answers to these questions will help the loved one and their care partner decide if additional assistance is needed.

MS progression also may require additional medications and therapy services and involve more paperwork and financial commitments. The cost of these additional treatments, coupled with the cost of nursing or home care and additional respite services for the care partner, often lead to stress for all parties.

Stepping in to Care for an MS Patient

RWHC: What are some of the signs that it is an appropriate time for a family member or loved one to step in and become an active care partner for someone with MS?

AB: MS affects every patient and family in a unique way, so there is no one universal “sign.” However, care partners should pay close attention to their loved one’s behavior. If they become particularly depressed, agitated or forgetful, it may be an appropriate time for the family to step in. If they start to have trouble caring for themselves or their home, they may need assistance. If their symptoms result in balance or mobility issues and they start to have accidents, that’s another indication.

It’s crucial at these early stages for the patient to be directly involved in decisions around family caregiving. They should provide input on how they’re feeling, ask questions, and be clear about the level of independence they’re comfortable with. Many people with MS find it’s helpful to focus on the things they can do rather than the things they can’t do. Some even look at it as an opportunity to learn or try new things or pursue new activities or hobbies.

Care partners must remember to not push if their loved one doesn’t accept help right away. Instead, meet their loved one where they are in the moment, letting them know that help is available when, where and how they need it.

The Multiple Sclerosis Association of America (MSAA) is a national, nonprofit organization founded in 1970. It is dedicated to improving lives today through ongoing support and direct services to individuals with MS, their families, and their care partners. For more information, visit https://mymsaa.org.

Read this article online at Real World Health Care.

Navigating Secondary Progressive MS

Real World Health Care

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Kathy Costello, MS, ANP-BC, MSCN

Real World Health Care continues our observance of Multiple Sclerosis Awareness Month by shining a spotlight on the National Multiple Sclerosis Society. We spoke with Kathy Costello, MS, ANP-BC, MSCN, associate vice president of Healthcare Access for the National MS Society, about the Society’s MS Navigator program and strategies that patients with Secondary Progressive MS can adopt to help them manage their disease and its impact on their daily lives.

Diagnosing Secondary Progressive MS

Real World Health Care: Secondary Progressive MS (SPMS) can be difficult to diagnose. Why is that?

Kathy Costello: SPMS is an MS disease course that follows Relapsing Remitting MS (RRMS). Most people diagnosed with RRMS will eventually develop SPMS within about 15 years of their initial MS diagnosis. A patient needs to go through about six months of observed progression of neurologic symptoms, in the absence of a relapse, before SPMS is considered to be the disease course.

Because the transition from RRMS to progressive MS is gradual, physicians may not be able to tell exactly when it occurs. If the worsening symptoms are left over from the last relapse, with permanent but stable damage that remains after the inflammatory attack has ended, the patient is considered to be experiencing an RRMS disease course. However, if the disease continues to worsen even though the person is no longer experiencing inflammatory relapses, they have transitioned to SPMS. Diagnosis takes on further nuances when you consider that some patients with SPMS may still experience relapses from time to time and may demonstrate new inflammation in their brain and spinal cord, though this doesn’t occur as frequently as during RRMS

Impact of Progressive MS on Daily Life

RWHC: Is there a difference between SPMS and other stages of MS in terms of its impact on a patient’s daily life?

KC: No matter what type of MS someone has, impacts are the result of damage in the central nervous system. The central nervous system is our command center: the spinal cord governs our movement and other functions, while the brain manages higher level functions and interprets messages. MS interrupts those functions, which translate into symptoms such as generalized fatigue, slowed thinking, changes in vision, coordination problems, weakness, walking difficulties and even loss of bladder and bowel control.

With progressive forms of MS, including SPMS, those symptoms will worsen over time. Patients will experience more fatigue and more difficulty walking, for example. These worsening symptoms make it harder to participate in work, social life and activities of daily living at home. It’s important to note, however, that MS is heterogeneous. No two people with SPMS will be exactly the same. One person may have a tremendous amount of impairment while another may have far less, or may have a different type of impairment. When people hear the word “progression,” it can be frightening and can conjure images of wheelchairs, dependency and an inability to participate, but that’s not always the case.

RWHC: It sounds like the progression of MS affects not only the person with MS, but also the people around them as well.

KC: True, especially when it comes to the patient’s family. Most families and households have defined roles and responsibilities. When MS symptoms start to interfere with a patient’s activities, those roles may need to change. Frustration, anger and feelings of guilt can exist on both sides: from the patient who can no longer participate as she/he did before MS, and from the family members, who may need to assume more household or other roles over time.

The financial burden of MS can also put a strain on family dynamics, especially if the patient can no longer work or has a reduced earning potential because of MS symptoms. MS is remarkably expensive, even with insurance, which may not cover the entire cost of medications, rehabilitation or assistive devices like walkers and wheelchairs.

SPMS Treatments and Management

RWHC: Are there any treatments on the horizon for SPMS?

KC: There is an enormous amount of research going on in progressive forms of MS. One medication for SPMS, siponimod, has completed its clinical trials and is currently under review by the FDA. A decision on approval is expected very soon. Other treatments, including high-dose biotin, also are being studied.

With $32 million dedicated to research in 2019, the National MS Society is the largest private funder of MS research, and 94 percent of our research portfolio is relevant to progressive MS. In addition to treatment research, we are also funding research into better understanding the disease process, as well as lifestyle and rehabilitation-related management strategies.

We’re also a founding member of the International Progressive MS Alliance, which is accelerating research with an eye toward appropriate measurement metrics during clinical trials, how imaging or blood tests may be used to identify someone at risk for progression, and treatments that can slow or halt the process of progression.  Of course our ultimate goal is a cure.

Support for SPMS Patients

RWHC: How is the National Multiple Sclerosis Society helping to support patients with SPMS?

KC: Among the many services and programs we have nationwide, our flagship programs here at the National MS Society is our MS Navigator program. The program matches patients with highly skilled, compassionate professionals who can connect them to the information, resources and support they need to meet the many challenges imposed by MS. MS Navigator offers a live, online chat function as well as a toll-free phone number at 800-344-4867. Patients can also connect via email and through our MSconnection.org community discussion board.

If our MS Navigators identify someone with highly complex needs, we refer them to our case management program, the Edward M. Dowd Personal Advocate Program. This program connects patients with case management organizations and individuals in the patient’s local community. We help to train those case managers so they are highly knowledgeable about MS, and we help them work toward solutions for patients.

I would also like to point out our Healthcare Access team, who work with healthcare professionals to ensure providers of all disciplines become more knowledgeable about MS and the services and expertise we offer The National MS Society funds a number of programs to ensure the workforce of the future including a medical student mentorship program to foster interest in a career in MS care, clinical fellowships for physicians who wish to specialize in MS care, and an MS track in 3 doctoral level physical therapy programs.

The National MS Society encourages SPMS patients to be as proactive as possible in mitigating the effects of MS. The disease gets worse when people develop co-morbid conditions such as cardio-vascular disease, so it’s important to follow a healthy eating plan, stay as active as possible, maintain a healthy weight and quit smoking. Depression is common in MS patients, and mood disorders can keep people from staying on their medications and participating in a healthy lifestyle. Above all, don’t suffer in silence. Speak up about any symptoms of stress or depression so that effective interventions can begin.

Read this article online at Real World Health Care.

Update Your Outlook on Progressive MS

Real World Health Care

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Rosalind Kalb, PhD, Senior Programs Consultant and Patricia Kennedy, RN, CNP, MSCN

Editor’s Note: Friday, March 1, marks the start of MS Awareness Month, and Real World Health Care will be focusing on Secondary Progressive Multiple Sclerosis through the end of the month.

This article is reprinted, with permission, from Can Do MS. To read the original article and learn about additional resources for people with multiple sclerosis and their caregivers, click here.

The words “progressive MS” can set off alarm bells. No one wants to hear that his or her MS is, or has become, progressive. The term “progressive MS” applies to different aspects of the disease, and it helps to know how it is being used. Approximately 85% of people are initially diagnosed with relapsing-remitting MS (RRMS).

At some point in their disease course, typically after 10-15 years, relapses become less frequent or stop occurring completely, the disease progresses more consistently but not necessarily more rapidly, and changes in function become more pronounced. When that happens, the person is said to have transitioned to secondary progressive MS (SPMS). Approximately 15 percent of people are initially diagnosed with primary progressive MS (PPMS). This group tends to experience gradual changes in symptoms and function over time with very few or no defined relapses. It is important for people to have an understanding of what these terms mean so that if they receive the word that they have progressive MS, they can begin to think about how to plan for any changes that may occur.

When symptoms worsen and abilities are affected, it can feel frustrating and frightening, particularly when a person feels he or she has been doing everything possible to manage the disease. Just when one seems to have a handle on MS and its symptoms, changes can occur, making the playing field feel totally different. Some people express fear of the future, seeing only a downhill slope. Others are disheartened and lose the oomph they need to try new ways to solve problems. This is a time when anger, grief, and anxiety may feel more intense. We urge all of you – individuals with MS, support partners and other family members – to step back and rethink the future. There are exciting research developments in the area of progressive MS, and there are many things you CAN do to optimize your health and well-being with progressive disease.

Managing Your MS – Using a Team Approach

Disease-modifying therapies (DMTs) are an important component of care for people with progressive MS. Most of the available DMTs are approved for relapsing forms of MS, which included those individuals with SPMS who continue to have occasional relapses. In addition, mitoxantrone is approved for SPMS and ocrelizumab is approved for PPMS. If you have been diagnosed with a progressive form of MS, be sure to discuss these treatment options with your healthcare provider.

Comprehensive MS care for a person with progressive disease also involves ongoing symptom management; rehabilitation to enhance function, comfort and safety; adaptive equipment to optimize mobility, independence and participation; and careful attention to optimizing mood and cognition.

Your best strategy is to assemble a team of professionals you trust and with whom you can communicate comfortably whenever there are changes in function and/or new symptoms. Your neurologist, nurse, physical or occupational therapist, and mental health professional can help you evaluate those changes and identify treatments, tools and resources to improve the situation. MS is a journey you do not need to travel alone.

Enhancing Your Health and Wellness

You are more than your MS – and your health and wellbeing are about more than treating your MS.

A healthy diet, regular exercise geared to your abilities and limitations, effective coping and stress management strategies and care attention to your mood are all essential to your overall quality of life. If you smoke, you have one more reason to quit: the research clearly shows that people who smoke have an increased risk of disease activity and progression.

There is now ample evidence that people with MS are more likely than the general population to have additional (‘co-morbid’) health conditions that impact their overall health and their MS. In particular, vascular conditions – including high blood pressure, high cholesterol, heart disease, diabetes – can accelerate the progression of MS and shorten a person’s lifespan. Therefore, prompt diagnosis and treatment of these conditions is important to comprehensive MS management. Regular check-ups and preventive screening as recommended for your age group can help you stay healthy and well.

Maintaining a Balanced Relationship

Healthy relationships with care partners are built on open communication and mutual give and take. Each person in the relationship needs to feel like a valued contributor. If your partnership starts to feel out of whack – with one person taking on too much of the doing and giving and the other feeling increasingly like a non-contributor, it’s time to talk about a redistribution of responsibilities. If your MS symptoms are making it difficult for you to do the things you used to do for your relationship and your household, think about swapping some things around.

Building Your Support Network – family, friends, medical team, employer, colleagues

Family, friends, colleagues, as well as your healthcare care team, are all essential parts of your support network. Stay connected with others, even if it means finding new activities, interests and opportunities for engagement; isolation isn’t good for your emotional or physical health!

Research in Progressive MS

Major clinical trials are underway, testing novel approaches to treating all forms of MS, including progressive MS. Scientists are learning new information about how MS damages the nervous system and cells and factors involved in the body’s ability to recover from injury. Early human trials of new therapies to repair myelin are already under way.

The International Progressive MS Alliance is focusing new resources on finding the answers that will lead to new treatments and ultimately, end progressive MS.
Studies are providing new evidence that exercise and rehabilitation can improve many functions and even help rewire and possibly build areas of the brain, and researchers are pursuing these leads to find the best ways people can maximize quality of life.

The journey with progressive MS will be different for every individual and will need to be managed differently. Success lies in building a support network, using all of the tools and resources available to you, and being creative and flexible in your problem-solving. You may need to do things differently than you did them before, but there’s no reason to sit on the sidelines. Be your own cheerleader but invite others onto your squad. It may feel difficult to cheer if the game isn’t going well, but on a basketball court, the cheerleaders don’t sit down if the score is not favorable. They cheer louder and get the fans involved too.

About the Authors

Rosalind Kalb, PhD, is a clinical psychologist who has specialized in MS care, support and education for over 30 years. She began her career in MS providing individual, group, and family therapy at the Medical Rehabilitation Research and Training Center for MS at the Albert Einstein College of Medicine and then at the MS Comprehensive Care Center in White Plains, NY. Dr. Kalb joined the National MS Society in 2000, creating online resources and educational materials for individuals and families living with MS and healthcare professionals until 2017. She continues her resource development work for the Society as a consultant. Dr. Kalb has written or edited multiple books including Multiple Sclerosis for Dummies (2nd ed.), Multiple Sclerosis: Understanding the Cognitive Challenges, Multiple Sclerosis: The Questions You Have; The Answers You Need, now in its 5th edition, and Multiple Sclerosis: A Guide for Families, now in its 3rd edition. Dr. Kalb has served as a Can Do program consultant since 2001.

Patricia Kennedy, RN, CNP, MSCN, a former Nurse Educator for Can Do MS, worked in the field of MS since 1987. For most of her MS career, she provided patient care. She served on the Board and was president of the International Organization of MS Nurses, served as a clinical consultant for the National MS Society and was a member of the Client Education Committee. She also was active in the Consortium of MS Centers and was on the editorial board of the International Journal of MS Care. She is the author of The Can Do Multiple Sclerosis Guide to Lifestyle Empowerment and is now retired.

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NASH: Fighting a Silent Epidemic

Real World Health Care

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Emily Burke

By Emily Burke, PhD, Director of Curriculum Development, Biotech Primer

Consider the liver. It’s just one of the jumble of stuff inside that makes us tick, right? What do you really know about it though—other than it’s “vital?” In fact, the liver is your largest internal organ, and plays vital roles in neutralizing toxins, fighting infections, manufacturing proteins and hormones, controlling blood sugar, and helping to clot the blood.

It may just be time to start giving our livers a little more thought. We don’t just mean by taking it easy on the cocktails either. Liver disease is a growing health concern worldwide. A big part of the problem is that that the most common liver disease in developed countries, non-alcoholic fatty liver disease (NAFLD), often has no symptoms. Its onset is associated with obesity and type 2 diabetes—two conditions that are also on the rise.

In 2017, NAFLD was estimated to affect nearly one quarter of people worldwide. About 30 to 40 percent of people in the United States are thought to be affected, and about 3 to 12 percent of American adults suffer from the advanced form of the condition, non-alcoholic steatohepatitis (NASH). Currently, its only treatment is liver transplantation. However, a number of biopharma companies are tackling this growing concern. Let’s take a closer look.

EASILY CONFUSED: NAFLD VS. NASH

NAFLD occurs when excess fat accumulates in the liver of people who drink little to no alcohol. NASH, the more severe form of the disease, is characterized by liver inflammation and scarring. As scar tissue accumulates, it impairs liver function. It’s the number one cause of non-alcohol related cirrhosis (severe, late stage scarring) which in turn can lead to liver failure.

People with diabetes, obesity, or metabolic syndrome run the risk of developing NAFLD and eventually, NASH. Treatments in the works largely focus on reducing inflammation and improving how the liver metabolizes fats.

WHEN WHITE CELLS RUN AMOK

Livers can only handle so much fat. Too much, and liver cells release inflammation-inducing signaling molecules, known as cytokines. These proteins trigger a series of events, the end result of which is the “attack of the white blood cells.” We think of these hemocytes as “good,” but not so with NASH. White blood cells, such as macrophages, invade the liver, increasing the chances that liver cells will die and damaging scar tissue will form. Here are a few small molecule drugs in the pipeline being developed to control inflammation:

  • Now in Phase II clinical studies, an inhibitor of the vascular adhesion protein 1 (VAP1). VAP1 helps white blood cells to migrate into the liver. Inhibiting VAP1 reduces this migration. Ta-da—decreased inflammation!
  • Selonsertib, currently in Phase III trials, takes a slightly different approach to inflammation. It inhibits the activation of two enzymes involved in cellular pathways leading to inflammation, liver cell injury, and scarring.
  • Cenicriviroc takes aim at liver inflammation by inhibiting receptors on the surface of white blood cells called chemokine receptors. Chemokines are chemical messengers that stimulate movement of cells towards the source of their release—typically damaged or infected tissue. This chemokine APB often helps the body fight infection. However, with NASH, this just damages the already inflamed liver further. Cenicriviroc is in Phase III clinical studies.

FIGHT THE FAT

An alternate approach to treating NASH works on improving a patient’s lipid metabolism. Control the fat that accumulates in the liver, control the disease. Here are two more small molecule drugs that work to control fat accumulation:

  • Obeticholic acid has begun Phase III clinical studies. This product works by binding the nuclear receptor FXR. This is a type of receptor protein that is present inside of cells, rather than on their surface, like most other receptor proteins. When activated by the appropriate signaling molecule, the nuclear receptor moves inside the cell’s nucleus, where it binds DNA at a specific location, turning on the expression of particular genes. Obeticholic acid specifically binds to and activates FXR, which modulates the expression of genes involved in lipid metabolism and glucose regulation. Researchers hope this change may disrupt the progression of NASH.
  • Yet another nuclear receptor activator is elafibranor. This drug works on the receptors PPAR α/σ. Activating these receptors switches on genes that increase the metabolism of fatty acids, decreasing liver fat and improving lipid profiles—as well as increasing insulin sensitivity and anti-inflammatory activities. The drug in now in Phase II clinical studies for advanced NASH patients.

Several other NASH drugs are coming down the pike, including a small molecule conjugate of cholic acid and arachidic acid (inhibits fatty acid synthesis; Phase II) and a small molecule drug that inhibits inflammation-promoting caspase enzymes (Phase II). Let’s hope that 2019 sees at least one FDA approval from the handful of Phase III candidates out there to step up the fight against this silent epidemic.

About the Author
Dr. Emily Burke is the Director of Curriculum for Biotech Primer and is responsible for customizing client training, delivering training sessions and writing the Biotech Primer WEEKLY, a free electronic newsletter that explains the science behind the headlines. She received her B.S. in biological sciences from Carnegie Mellon University and her Ph.D. in molecular biology from the University of Southern Alabama.

Readers are invited to subscribe to the free Biotech Primer WEEKLY.

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Along the Caregiving Journey

Real World Health Care

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Susan Reinhard, RN, PhD, FAAN

In our first interview for our 2019 caregiving series, Real World Health Care spoke with Susan Reinhard, RN, PhD, FAAN, senior vice president and director of AARP’s Public Policy Institute and chief strategist, Center to Champion Nursing in America.

We talked with Dr. Reinhard about the many challenges facing people who are caring for loved ones with chronic illness and how AARP can help them along their journey as a caregiver.

Real World Health Care: AARP is well known as an organization that empowers people to choose how they live as they age. How does that mission extend to people caring for a loved one with a chronic illness such as multiple sclerosis, cancer or Parkinson’s disease?

Susan Reinhard: Our mission at AARP is to help family caregivers by giving them what they need, when they need it and where they need it. The journey is different for every individual caregiver and every individual loved one, and it can change over the trajectory of an illness.

Acting as a family caregiver for someone with a chronic, long-term condition may be a completely different experience than caring for a loved one with an acute condition like a heart attack, stroke, or even cancer – all of which are shocking but are treatable. On the more chronic end of the disease spectrum, consider Parkinson’s disease, a progressive disease that a person can live with for 20 or 30 years. Diseases like Parkinson’s, as well as MS, are typically difficult to diagnose and lead to many questions about how to treat the disease, how living with the disease will impact the person’s life and how to navigate the health care system.

Caregiving is not a one-fits-all-and-at-all-times role. AARP recognizes that and our caregiving resources reflect this vast range of experiences.

The Changing Face of the Family Caregiver

RWHC: Given the increase in professional services available to people with chronic diseases, why are more and more family members being called on to act as caregivers for a loved one?

SR: Advances in medicine have led to people living longer with chronic illness than in the past, and the trend from a health system perspective is for patients to move out of the acute-care hospital setting and into ambulatory, home-based care. While patients may prefer to be at home instead of the hospital or a long-term care facility, they often need help with both complex medical tasks like changing a wound dressing, as well as activities of daily living like bathing, shopping and cooking.

Tasks that used to fall to providers such as nurses, physical therapists or dieticians are now performed by family caregivers. For example, someone with motor skill issues due to multiple sclerosis may need a family member to administer medications or nutrition. Our research, which we plan to update in April, shows that a good percentage of caregivers who perform these complex medical tasks lack adequate training to do so, often learning by trial and error. As a result, they worry about making mistakes, and that anxiety can affect their emotional well-being.

Moreover, the proliferation of professional services often adds to the burden. There are more appointments to coordinate and travel to, more medications to administer, more provider and insurance systems to navigate, and more paperwork. Someone with a chronic illness can’t do these things all on their own.

RWHC: Is there a “typical” family caregiver who shoulders most of the responsibility?

SR: Most people are familiar with the concept of the “sandwich generation” – the middle-ager who is taking care of both dependent children and an aging parent. Indeed, the “average” family caregiver is a late 40s white woman caring for her elderly mother. However, family caregivers are of all genders, ages, ethnicities and cultures. You may be surprised to learn that one in four family caregivers today is a millennial. In order to care for a loved one with a chronic, long-term illness, these millennials are forced to put their own lives on hold, delaying decisions about their careers, relationships and even where they live. They often feel isolated because their peers can’t relate to the complex issues they face, like managing medication schedules, sorting through Medicare coverage or changing a feeding tube. They are thrust into a confusing world that most people are unprepared for, let alone someone in their 20s or 30s.

Advocating for Caregivers

RWHC: How is AARP advocating for family caregivers?

SR: AARP is working closely with caregivers and patient support organizations nationwide to push for laws that support caregivers. We are proud to note that since 2014, about 300 state laws have been enacted to help family caregivers. As an example, the CARE Act is now in place in 40 states and territories. Under this law, every time a person is admitted to the hospital – regardless of their age or condition – they must be asked if they have a family member who will be helping them. If yes, the patient is asked whether the family member should be added to their electronic health record as part of their care team. If the caregiver will be providing medical care, they must receive proper instruction. Moreover, the caregiver must be informed of when the patient will be discharged in a timely manner.

We’re now in the process of studying how the CARE Act is being enacted at health systems across the country. How do hospitals identify caregivers? It’s not always a spouse or next of kin. How are they training staff to make sure caregivers are connected to the care team? How do they anticipate what a caregiver might need? In the fast-paced hospital environment with an overload of forms and charting to manage, it’s easy to lose sight of the family caregiver.

We’re promoting best practices when we find them. For example, one hospital gives family caregivers a badge like their staff wears, with the caregiver’s name and the title of Caregiver. With that badge, the caregiver is eligible for discounts in the hospital gift shop and cafeteria. It seems like a small gesture, but it really means a lot for caregivers to be acknowledged as an integral part of the care team.

RWHC: Are there other ways in which AARP supports caregivers?

SR: We have a wealth of information on our web site, including a series of Prepare to Care guides, which help to make the job more manageable.

We are in the process of working with a few other organizations and the UC Davis College of Nursing as part of The Home Alone Alliance to develop a series of evidence-based instructional videos and tips sheets to help family caregivers learn how to do complex medical tasks such as administer an injection, change a wound dressing and do a tube feeding.

AARP also is acutely aware of the financial stresses related to being a caregiver. Our research shows that about 80 percent of family caregivers spend money out-of-pocket to help defray their loved one’s medical costs. Those out-of-pocket costs range on average from $7,000 a year to $12,000 a year for long-distance caregivers who must travel to be with their loved one. Often, caregivers are forced to leave their job or cut down on hours, which has a long-term effect on their whole family in terms of the impact on social security earnings and pensions. To help, AARP offers a range of financial tools and information.

We are also encouraging employers to step up and help employees who are caregivers. We partnered with the Northeast Business Group on Health to create a guide to help HR and benefits leaders support employees, and we teamed up with the United Way to launch a Do You Care Challenge to help raise awareness about millennial caregivers and their need for more caregiving-friendly workplaces.

Through the vast array of caregiving-related advocacy efforts, education, partnerships, and resources AARP offers, we want family caregivers to know that they are valued as an essential part of their loved one’s care team. At the same time, they need to take care of themselves as well. I often liken my message to the crew member instructions when flying: “Be sure to put your own oxygen mask on first before assisting others.”

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2019 In Focus: Insights and Services for Patients and Their Caregivers

Real World Health Care

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Krista Zodet, President

By Krista Zodet, President, The HealthWell Foundation

As the founding sponsor of Real World Health Care, The HealthWell Foundation is honored to have a forum in which to shine a spotlight on the organizations making a positive impact on patient communities. We understand the physical, emotional and financial devastation involved in having a chronic or life-altering illness. We also understand how such illnesses can impact a patient’s loved ones, some of whom shoulder significant responsibilities and face daunting challenges in their roles as caretakers.

Throughout 2019, Real World Health Care will explore the special needs of friend-and-family caregivers, particularly those caring for patients with heart failure, cancer, secondary progressive multiple sclerosis, and migraines. We’ll highlight caregiver services from leading patient advocacy organizations and will seek to share advice with those who may be struggling with the many issues that can arise when one is a caregiver.

According to the Caregiver Action Network, more than 90 million Americans care for loved ones with chronic conditions, disabilities, disease or the frailties of old age. A 2015 study from the National Alliance for Caregiving and AARP paints a picture of the family caregiver in America:

  • The “typical” family caregiver is a 49-year-old woman who takes care of her 69-year-old relative.
  • Sixty percent of caregivers are female.
  • Caregivers who provide unpaid care for at least 21 hours a week have been doing so for an average of five and a half years and expect to continue caregiving for another five years. Nearly half of these caregivers report high emotional stress.
  • A third of caregivers have a full-time job, while a quarter work part time.

When announcing the study results, an AARP spokesperson noted, “We’re facing a caregiving cliff. By mid-century there will be only three family caregivers available for each person requiring care. That means, to avoid putting them at higher risk as they age, we need to provide support for existing caregivers who are underserved by the current long-term services and support system.”

NASH: A Growing Public Health Burden

During 2019, Real World Health Care also will focus on another underserved group: patients with Non-Alcoholic SteatoHepatitis (NASH). The most severe form of non-alcoholic fatty liver disease, NASH is a growing concern in the medical community because of its potential consequences for patients and its high prevalence in the population.

According to the NASH Education Program, NASH is a chronic, yet silent disease, which means that most patients live with it for several years without experiencing any symptoms. It can progress to more serious disease stages, such as advanced fibrosis, cirrhosis, liver failure or liver cancer.

While there currently is no approved therapy for patients, the scientific community is working diligently to find safe, effective treatments for the disease. We’ll be profiling NASH research priorities throughout the year, along with support services available to patients.

I invite you to follow Real World Health Care as we cover these topics in 2019. Click the Subscribe button on the right side of this page to be notified when new posts publish. You can also follow us on Twitter @RWHCblog.

If you are working with an organization that supports either NASH patients, or caregivers of patients with heart failure, cancer, secondary progressive multiple sclerosis, or migraines, let us know. We would be delighted to share your story with our subscribers. Contact us today.

Read this article online at Real World Health Care.