Welcoming 2020 with New Insights for Patients with Chronic Diseases

Real World Health Care_____________________________________________________________________

Topics in Focus: ALS, CAR T Therapies, Macular Degeneration and Movement Disorders

The HealthWell Foundation is proud to be a founding sponsor of Real World Health Care. Since 2013, Real World Health Care (RWHC) has brought you compelling content on health care issues facing Americans. From features on the people, programs and products changing the way health care is delivered, to interviews with leading researchers and clinicians, to profiles of patient advocacy organizations, RWHC has provided valuable insights and information to those interested in both the current state and future of health care.

healthwell_foundation_president_krista_zodet

Krista Zodet, President, HealthWell Foundation

This year, RWHC will focus on several chronic diseases of concern to Americans: amyotrophic lateral sclerosis (ALS, commonly called Lou Gehrig’s disease), macular degeneration, and movement disorders including Parkinson’s Disease, Huntington’s Disease, and Tourette. We also will delve into CAR T therapies, which hold promise for changing the lives of countless cancer patients.

As in previous RWHC series, we will be shining a spotlight on organizations and individuals who are dedicated to supporting patients and championing the research needed to improve health outcomes.

An Inside Look at Patient Communities

What is ALS?

ALS is a progressive neurodegenerative disease that affects nerve cells in the brain and the spinal cord. It progressively affects voluntary muscle action, leading to the potential of total paralysis in patients at the later stages of the disease. ALS usually strikes people between the ages of 40 and 70, and it is estimated that at least 16,000 Americans have the disease at any given time, with more than 5,000 people newly diagnosed each year.

What is Macular Degeneration?

Macular Degeneration is an incurable eye disease that is the leading cause of vision loss, affecting more than 10 million Americans. When the disease progresses, people experience wavy or blurred vision, and if the condition continues to worsen, central vision may be completely lost. People with very advanced macular degeneration are considered legally blind.

What are Movement Disorders?

Movement disorders are a group of nervous system (neurological) conditions that cause abnormal increased movements, which may be voluntary or involuntary. They can also cause reduced or slow movements. There are several types of movement disorders, including (but not limited to):

  • Chorea: characterized by repetitive, brief, irregular, somewhat rapid involuntary movements that typically involve the face, mouth, trunk and limbs.
  • Huntington’s Disease: an inherited progressive, neurodegenerative disorder that causes uncontrolled movements (chorea), impaired cognitive abilities and psychiatric conditions.
  • Parkinson’s Disease: a slowly progressive, neurodegenerative disorder that causes tremor, stiffness, slow decreased movement or imbalance. It may also cause other nonmovement symptoms.
  • Tardive Dyskinesia: a neurological condition caused by long-term use of certain drugs used to treat psychiatric conditions. It causes repetitive and involuntary movements such as grimacing, eye blinking and other movements.
  • Tourette Syndrome: a neurological condition that starts between childhood and teenage years and is associated with repetitive movements (motor tics) and vocal sounds (vocal tics).

CAR T Therapies

One of the newest cancer treatments available to patients today is CAR T-cell (Chimeric Antigen Receptor T cell) therapy. CAR T-cell therapy uses a patient’s own cells and re-engineers them to fight cancer. It is a complex and costly treatment that is only offered at some major cancer centers and often causes very severe side effects. Most patients treated with this personalized immunotherapy have been people with blood cancers.

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Conditions like ALS, macular degeneration, movement disorders and cancer can have a significant impact on patients, their families, friends and entire communities. Real World Health Care seeks to be a source of information and inspiration for everyone touched by these chronic and life-altering illnesses.

I invite you to become part of our community and support patients in need by following RWHC as we cover these topics throughout 2020. 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.

We want to hear from you! If you are a patient or are working with an organization that supports these patient communities, please let us know. We would be delighted to share your story with our subscribers. Contact us today.

 

Resources and References:

ALS Association

American Macular Degeneration Foundation

Cancer Support Community

Mayo Clinic

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Editor’s Note: Real World Health Care is pleased to close out our 2019 series on migraine by sharing an article originally published by the National Headache Foundation. Here, they share advice for helping patients respond to caregivers and others when faced with stigma associated with migraine disease. You can read the original article here, and learn more about migraines from the National Headache Foundation blog.

It can be difficult to explain the excruciating pain of a migraine to those who don’t experience it. In fact, there’s a stigma attached to this disorder stemming from a lack of knowledge on the severity of symptoms associated with migraine and headache. Migraine is not just a headache, and the attack may include nausea, vomiting and sensitivity to light and sound. Anyone who experiences migraine attacks has surely been frustrated with well-meaning friends and family offering dismissive advice that’s not only unhelpful but can make the situation worse.

We took to social media to discover the most common comments and advice that people with migraine hear when they discuss their condition. We compiled the 10 most common in a list below.

  1. Take some Advil
  2. Did you take something?
  3. Have you been drinking enough water?
  4. You’ve got another headache?
  5. Again?
  6. I get bad headaches too.
  7. It’s just a headache.
  8. I have some Tylenol if you want it.
  9. Just push through it!
  10. I think you just want an excuse.

Chances are, you’ve heard one or more of these pieces of “advice” at some point in your life. One comment in particular—“It’s just a headache”—encapsulates the popular misconception about a disorder that affects around 40 million Americans. It’s frustrating to feel that no one understands what you’re going through, and some, out of their own lack of knowledge, may even think you’re faking symptoms.

In order to demystify the stigma surrounding migraine disease, here are a few steps you can take to educate those around you about this debilitating neurological disorder.

Explain the Migraine Triggers

While migraine triggers differ from person to person, there are a few common causes that will bring about symptoms in many sufferers. For example, a naturally-occurring compound called Tyramine—often found in aged, smoked or cured meats and vegetables—has been found to be a major trigger of migraine attacks. If friends, family and coworkers have a better understanding of your migraine triggers, they’re more likely to notice when you’re experiencing an attack and can respond accordingly.

Provide Migraine Resources

Of course, you don’t need to justify your condition to everyone with whom you interact, but migraine symptoms can cause a strain on certain close relationships. For example, a boss or supervisor doubting the severity of your condition may cause you additional stress, which can negatively impact work performance or compound the pain. Fortunately, the National Headache Foundation has an abundance of resources that help skeptics and allies alike get a better understanding of migraine and headache. Sharing these informative sources with those closest to you can help alleviate the burden of constantly explaining your condition.

Seek Migraine Treatment from a Headache Specialist

Understanding the specifics of your condition makes it far easier to explain them to others. Seek out a headache specialist to receive an appropriate diagnosis. The health care practitioner will likely diagnose you based on your medical history, symptoms and a physical and neurological examination. This could include blood tests, magnetic resonance imaging (MRI) or computerized tomography (CT) scan. (It is critical to visit a medical professional who specializes in headache and migraine, as they will be able to best diagnose and treat the pain.)

There will always be those who doubt the severity of migraine symptoms. However, by educating yourself and those around you, you can help tear down the stigma associated with migraine disease and, in the process, make living with migraine attacks a bit easier.

Read this article online at Real World Health Care.

What People with Migraine Attacks Hate to Hear

Real World Health Care_____________________________________________________________________

Editor’s Note: Real World Health Care is pleased to close out our 2019 series on migraine by sharing an article originally published by the National Headache Foundation. Here, they share advice for helping patients respond to caregivers and others when faced with stigma associated with migraine disease. You can read the original article here, and learn more about migraines from the National Headache Foundation blog.

It can be difficult to explain the excruciating pain of a migraine to those who don’t experience it. In fact, there’s a stigma attached to this disorder stemming from a lack of knowledge on the severity of symptoms associated with migraine and headache. Migraine is not just a headache, and the attack may include nausea, vomiting and sensitivity to light and sound. Anyone who experiences migraine attacks has surely been frustrated with well-meaning friends and family offering dismissive advice that’s not only unhelpful but can make the situation worse.

We took to social media to discover the most common comments and advice that people with migraine hear when they discuss their condition. We compiled the 10 most common in a list below.

  1. Take some Advil
  2. Did you take something?
  3. Have you been drinking enough water?
  4. You’ve got another headache?
  5. Again?
  6. I get bad headaches too.
  7. It’s just a headache.
  8. I have some Tylenol if you want it.
  9. Just push through it!
  10. I think you just want an excuse.

Chances are, you’ve heard one or more of these pieces of “advice” at some point in your life. One comment in particular—“It’s just a headache”—encapsulates the popular misconception about a disorder that affects around 40 million Americans. It’s frustrating to feel that no one understands what you’re going through, and some, out of their own lack of knowledge, may even think you’re faking symptoms.

In order to demystify the stigma surrounding migraine disease, here are a few steps you can take to educate those around you about this debilitating neurological disorder.

Explain the Migraine Triggers

While migraine triggers differ from person to person, there are a few common causes that will bring about symptoms in many sufferers. For example, a naturally-occurring compound called Tyramine—often found in aged, smoked or cured meats and vegetables—has been found to be a major trigger of migraine attacks. If friends, family and coworkers have a better understanding of your migraine triggers, they’re more likely to notice when you’re experiencing an attack and can respond accordingly.

Provide Migraine Resources

Of course, you don’t need to justify your condition to everyone with whom you interact, but migraine symptoms can cause a strain on certain close relationships. For example, a boss or supervisor doubting the severity of your condition may cause you additional stress, which can negatively impact work performance or compound the pain. Fortunately, the National Headache Foundation has an abundance of resources that help skeptics and allies alike get a better understanding of migraine and headache. Sharing these informative sources with those closest to you can help alleviate the burden of constantly explaining your condition.

Seek Migraine Treatment from a Headache Specialist

Understanding the specifics of your condition makes it far easier to explain them to others. Seek out a headache specialist to receive an appropriate diagnosis. The health care practitioner will likely diagnose you based on your medical history, symptoms and a physical and neurological examination. This could include blood tests, magnetic resonance imaging (MRI) or computerized tomography (CT) scan. (It is critical to visit a medical professional who specializes in headache and migraine, as they will be able to best diagnose and treat the pain.)

There will always be those who doubt the severity of migraine symptoms. However, by educating yourself and those around you, you can help tear down the stigma associated with migraine disease and, in the process, make living with migraine attacks a bit easier.

Read this article online at Real World Health Care.

The Many Moods of Heart Failure and the Caregiver Challenge

Real World Health Care_____________________________________________________________________

Ann Laramee, APRN

Caregivers play an important role in the well-being of chronic heart failure patients. In addition to helping their loved one manage the physical and medical aspects of heart failure, they are called on to help with the patient’s emotional health.

According to Ann Laramee, APRN, Cardiology Nurse Practitioner in Cardiology and Palliative Medicine at the University of Vermont Medical Center, the heart is very sensitive to mood stressors like anxiety, fear, loneliness, anger and depression. She says that mood changes in heart failure patients can result in reduced compliance with treatment plans, longer recovery times and an increased risk of additional cardiac events.

Caregiving: A Burden or a Blessing?

Studies have shown that improved social support has been associated with better outcomes for patients living with heart failure. But often, caregivers themselves suffer from physical and emotional symptoms, according to Laramee, who notes that most caregivers of heart failure patients serve in that role for an average of 50 hours a week over 53 months.

“At the same time, caregiving can be very gratifying,” she says. “People say it brings fulfillment and meaning to their life. They feel appreciated.”

She encourages caregivers to take care of themselves so that they can be there for their loved one. She recommends many of the same self-care tips as she does to patients, including getting enough sleep, exercising regularly, eating a well-balanced diet and asking for support when needed.

Webinar for Caregivers

Additional insights from Laramee are available in a free webinar “Moods in HF and Caregiver Challenges” from the Heart Failure Society of America that’s perfect for caregivers, patients and families alike.

In the webinar, Laramee reviews the various moods that may affect a heart failure patient, how to recognize mood changes, when to seek help and the treatment options available. She also addresses the important role a caregiver plays, the challenges and rewards of caregiving, the importance of self-care and finding support when needed.

The HFSA Patient Education Webinar Series is provided to patients, caregivers and families through a collaboration between the Heart Failure Society of America and Mended Hearts. The series covers topics including heart failure diagnosis, therapies, clinical trials and diet and therapy advice. For more information, please visit www.hfsa.org/patient/webinarseries.

Read this article online at Real World Health Care.

How To Support a Friend with Heart Disease

Real World Health Care_____________________________________________________________________

Editor’s Note: When a family member or friend is sick with a chronic disease like heart failure, the role of caregiver often falls to women. However, more than one in three women is living with some form of cardiovascular disease themselves: It is the number one killer of women in the U.S. 

Go Red For Women is a global community whose hearts are united against heart disease. The following article is reprinted with their permission. Learn more about heart disease in women. Read the original article here.

You want to support a friend with heart disease or be part of a support system. Your support can help her feel better about her diagnosis and can even help her make healthier life choices.

Listen

When discussing her heart diagnosis with you, one of the best things you can do is listen. While it may be tempting to tell her all the ways she can eat healthier or exercise more often, focus instead on hearing her concerns before rushing to give advice.

“Just listening is a really easy way to show someone you care,” says Carol D’Anca, a Chicago-based clinical nutritionist and owner of Foods Not Meds, who has helped to support several women friends struggling with heart disease.

Get Informed

Chances are, your friend is going to the doctor quite a bit these days and may feel overwhelmed by the barrage of information given to her. Lighten her load by doing some research yourself, suggests D’Anca.

“Go online and help her with research about her condition and treatment options,” she says. “Work together to dig deeper and gain an understanding of what she is going through. Your willingness to help will go a long way.”

Socialize

Depression is an unfortunate byproduct of heart disease for many women. Upon receiving bad health news, they tend to shut themselves off from activities they once enjoyed. If this describes your friend, set up a regular social outing for the two of you (or invite others) – maybe a Tuesday afternoon tea hour or a movie night once a week.

“She will start to feel better emotionally when she feels love from others,” D’Anca says. “I also recommend helping them find a support group of others who are going through the same thing. Several of my friends have done this and it has brightened their moods tremendously, just knowing that they aren’t suffering alone.”

Get Active

Help improve your friend’s heart health by scheduling time to do activities together. Based on her likes and capabilities, organize a regular walk around the neighborhood or take a dance or step aerobics class together. Not only will the physical activity help your friend’s heart health, but it will improve her mood too.

Read this article online at Real World Health Care.

Understanding Chronic Heart Failure: Advice for Caregivers

Real World Health Care_____________________________________________________________________

John Osborne, MD, PhD, FACC, FNLA

Are you caring for a loved one with chronic heart failure? Being a family caregiver can feel overwhelming and isolating, but you are not alone. According to the American Heart Association, more than six million American families have an adult member dealing with heart failure. And while living with any chronic disease can be difficult, many people with chronic heart failure learn to manage their symptoms and enjoy full lives, with help from their family and friends.

“One of the biggest challenges people face when caring for a loved one with chronic heart failure is understanding the disease,” said John Osborne, MD, PhD, FACC, FNLA, director of cardiology for State of the Heart Cardiology in Dallas. “Many of us in the medical world tend to use jargon and abbreviations, which can be confusing to patients and their families. But it’s crucial for everyone to know exactly what the disease is, what it means, how to monitor it, and how to manage and treat it.”

Simple Language for a Complex Disease

Dr. Osborne said he and his team act as educators to help patients and their families better understand chronic heart failure. Instead of using technical terms like reduced ejection fraction and preserved ejection fraction, he communicates using simple language and analogies – referring to the heart as a “plumbing” system that needs to pump properly to give the body the blood flow it needs.

“With some patients, I may talk about their heart as being ‘big and baggy,’ which makes it hard to squeeze to pump blood in and out,” he explained. “With other patients I may tell them that their heart squeezes properly, but it’s too ‘stiff’ to sweep blood in and out efficiently — like the difference in pressure between blowing up a balloon and blowing up a hot water bottle.”

According to the American Heart Association, open communication between patients, their families and their care team is important, especially to help with shared decision-making. They advise patients and their loved ones to be prepared for appointments by writing down concerns, asking questions, taking notes and clarifying what the health care team says.

Managing Chronic Heart Failure

About 10 percent of adults living with heart failure have advanced heart failure, in which the condition has progressed to the point where traditional therapies and symptom management no longer work. However, the vast majority of heart failure patients can improve their symptoms with behavioral and lifestyle management strategies.

“Maintaining a healthy weight and monitoring it daily are important as heart failure patients can quickly hold onto fluids, which causes pulmonary edema and difficulty breathing,” Dr. Osborne said. “One of the simplest ways to empower patients and give them something they can control is getting them to focus on the Rule of Twos: Gaining more than two pounds in two days is too much.”

In addition to weight management, the American Heart Association suggests a number of lifestyle changes that can help alleviate heart failure symptoms, slow the disease’s progression and improve everyday life:

  • Quitting smoking
  • Tracking daily fluid intake
  • Avoiding or limiting alcohol and caffeine
  • Eating a heart-healthy diet
  • Being physically active
  • Managing stress
  • Monitoring blood pressure and other symptoms
  • Getting adequate rest

“Family caregivers play a critical role in helping their loved one adopt and maintain healthy living practices,” Dr. Osborne said. “In some cases, patients may brush off their symptoms or slack off on recommended diet and exercise. It often falls to family caregivers to hold the patient accountable and advocate for them with their health care team.”

Emotional Health for Patients and Caregivers

In addition to helping manage the physical symptoms of heart failure, healthy living can also help patients manage stress and other mental and emotional complications that come with having a chronic disease.

“Chronic heart failure causes severe limitations in daily functioning and may lead to a shortened life span,” explained Barry J. Jacobs, Psy.D., a clinical psychologist, health care consultant and long-time AHA volunteer. “Patients don’t feel well and can’t do much, which leads to a high degree of depression, anxiety and frustration.”

Dr. Jacobs added that if patients allow chronic heart failure to limit their lives, they are more likely to become hopeless and depressed. On the other hand, if they are proactive in managing their symptoms and remain active and engaged, they can attain a higher level of physical functioning and a more positive outlook.

“Caregivers have a direct influence on helping their loved ones maintain a positive attitude,” he said. “That influence is most effective when the caregiver acts as a coach, guiding the patient to make better choices, instead of nagging them.”

Dr. Jacobs cautions family caregivers to not fall into the trap of blaming the patient when they backslide or when inevitable exacerbations occur.

“Heart failure is different from other chronic diseases like cancer because so much of it is behaviorally based,” he explained. “One would never think to blame a cancer patient for winding up in the emergency room due to exacerbated symptoms. But those guilt trips are more common when dealing with a heart failure patient who decides to ‘cheat’ and have a high-sodium meal, for example.”

The blame game and other family conflicts between patient and caregiver can lead patients to feel they’ve lost control over their own lives. They can also lead to stress for the caregiver.

“It’s easy for caregivers to get frustrated when their loved one tries to assert control and does something they shouldn’t – sometimes just for spite,” Dr. Jacobs said. “It’s also easy for caregivers to get worn out, because heart failure is a disease in which demands go on indefinitely, for years, instead of for weeks and months as with other diseases.”

Drs. Jacobs and Osborne recommend that caregivers stay on top of their own physical health and mental well-being so they can provide the best possible support for their loved one. They suggested that caregivers reach out to their primary care physician if they start to feel stressed or depressed. Their doctor can evaluate them, develop a treatment plan, and put them in touch with resources such as therapists, respite services and support groups to help them avoid burnout. The American Heart Association’s Rise Above HF initiative offers caregiver tools and resources as well.

The Rewards of Caregiving

“Caregiving for a heart failure patient can be challenging, frustrating and tiring,” Dr. Jacobs admits. “But it can also be tremendously gratifying, especially when caregivers realize the significant difference they can make in their loved one’s life. There’s a sense of purpose derived from caregiving that can help sustain caregivers over time.”

“The good news is that with proper treatment from a patient’s health care team, good life habits and the support of family caregivers and other loved ones, heart failure patients can dramatically extend their lives and enhance their day-to-day existence,” concluded Dr. Osborne.

Read this article online at Real World Health Care.

Caring for a Child with Migraine

Real World Health Care_____________________________________________________________________

By the American Migraine Foundation

Editor’s Note: The following is reprinted with permission from the American Migraine Foundation. Visit the American Migraine Foundation web site to download a copy of the full guide, which includes additional information on pharmacological and non-pharmacological treatments.

Nothing hurts more than seeing your child in pain. Between four and ten percent of children experience migraine, and kids display different symptoms than adults. Early diagnosis, an open dialogue and specialized treatment plan can equip you and your child with the tools to best manage their migraine.

Maintain a Dialogue

An ongoing dialogue with your child is critical to getting an accurate diagnosis and finding a treatment plan that works. Your child’s migraine management plan will evolve as they grow older and their daily routines change. Being able to talk about migraine openly will help you adapt as a team.

Find a Common Language

Younger children might have a hard time describing their symptoms. Use non-verbal cues, like pointing to your tummy or making pained facial expressions, to find out where and how severe their pain is.

Keep Your Focus on Them

It can be scary when your child is having severe pain or other migraine symptoms, but kids will pick up on your anxiety and it can add to their stress. Put on a brave face, offer your child reassurance and empathy, and seek the consolation you need from your own support systems.

Work Together to Find Solutions

Involve your child in the process of finding a headache specialist and devising a treatment plan. It can be as simple as asking them what they thought of a new doctor after a first meeting, or keeping track of healthy behaviors and rewarding them for practicing good headache hygiene.

Leave the Conversation Open-Ended

A diagnosis and treatment plan are only the beginning. Encourage your child to keep you informed about their symptoms, and invite any questions or concerns they have about their medication or daily routine. Then, work together to find alternatives, and get the whole family involved in following through.

Establish Healthy Habits

Establishing a healthy routine is essential for the migraine brain, so it’s recommended that parents sit down with their children and discuss fundamental healthy habits.

Children should be sleeping a minimum of nine hours a night, while teenagers should get at least eight hours. Discourage your child from taking naps or staying up past their bedtimes.

Work with your child to make sure they don’t skip breakfast and have access to three well-balanced meals a day. They should also drink enough water; eight 8-ounce glasses a day is a good rule of thumb.

Get the whole family involved: track how much water each family member is drinking, sit down for dinner together every night, and establish regular bedtimes for everyone.

Finding a Headache Doctor

When it comes to caring for your child with migraine, you are not alone. A headache specialist plays a critical role in any migraine management strategy and can help you and your child explore your options and find an effective treatment plan. Visit americanmigrainefoundation.org to find a headache specialist near you to get your child the treatment and care they deserve.

About the American Migraine Foundation

The American Migraine Foundation provides education, support and resources for the millions of men, women and children living with migraine. Our mission is to advance migraine research, promote patient advocacy and expand access to care for patients worldwide. Migraine, and other disabling diseases that cause severe head pain, impact more than 37 million people in the United States alone. By educating caregivers and giving patients the tools to advocate for themselves, we have cultivated a movement that gives a collective voice to the migraine community. For more information, please visit www.americanmigrainefoundation.org. Together we are as relentless as migraine.

Read this article online at Real World Health Care.

Maintaining Control with Parkinson’s Disease Through Palliative Care

Real World Health Care_____________________________________________________________________

 

Provided courtesy of GetPalliativeCare.org

Editor’s Note: This week, we share some advice for caregivers of those living with Parkinson’s disease on how palliative care can help, from a post reprinted with permission from www.GetPalliativeCare.org. We encourage our readers to visit this site for more useful tips and insights on palliative care for people with serious illnesses.

If you or someone you love is living with Parkinson’s disease, there are ways to improve your quality of life. While there is no cure for Parkinson’s disease, there are medications and treatments that can reduce the symptoms. A medical specialty called palliative care can help.

Palliative care is specialized medical care for people living with serious illnesses like Parkinson’s disease. It treats the pain, symptoms and stress of the illness, with the goal of improving quality of life.

Palliative care is provided by a team of palliative care doctors, nurses, and other specialists who work together with the patient’s other doctors to give them an added layer of support.

Palliative care teams are experts in complex symptom management. Parkinson’s disease is a progressive illness that damages the system of nerves that the brain uses to direct the body’s muscles and movements. The illness results in hand tremors, muscle stiffness, slowing and jerking. People living with Parkinson’s can experience sleeplessness, fatigue, constipation and low blood pressure. The disease can also affect the brain in other ways, may result in depression and anxiety, difficulty concentrating and dementia. The palliative care team will work with the patient’s neurologist to be the first line of defense against any of these physical and emotional symptoms, always communicating preferences and making sure treatments are in line with your goals.

If you or someone you love is living with Parkinson’s disease, don’t wait to ask for a palliative care referral. Early involvement of palliative care can give you the added layer of support to help you and your family enjoy quality of life.

Almost all large hospitals have palliative care teams, and it’s also available in outpatient clinics and for home visits, depending on your area. At GetPalliativeCare.org you can learn more, look for palliative care in the Provider Directory, and take a short quiz to see whether you or your loved one might need palliative care.

About GetPalliativeCare.org

Getpalliativecare.org provides clear, comprehensive palliative care information for people coping with serious illness. Key features of the site include a Palliative Care Provider Directory, a definition of palliative care, and detailed descriptions of what palliative care does and how to get it. It also provides an interactive quiz to assist you in deciding whether palliative care might be right for you or a loved one. The site is provided by the Center to Advance Palliative Care (CAPC).

Read this article online at Real World Health Care.

Understanding the Voice of Cancer Caregivers

Real World Health Care_____________________________________________________________________

Alexandra Zaleta, PhD

By Alexandra Zaleta, PhD, Senior Director, Research, Cancer Support Community

At the Cancer Support Community, we have always strived to serve everyone who has been affected by cancer. For us, this means providing support to patients as well as their family members, who often play a critical role in providing support and care. It also means conducting research that prioritizes cancer caregivers in order to understand their greatest needs and to develop better support programs.

Caregiver Research

One of the two key initiatives of our Research and Training Institute is CancerSupportSource®-Caregivers, a tool that captures caregivers’ concerns and links them, automatically, to the information and support they need most. The program was developed by working closely with cancer caregivers. Our affiliates across the country use CancerSupportSource®, and we continue to grow the program through our research efforts.

Since 2014, we have also been enrolling caregivers into our Cancer Experience Registry, a web-based research survey that allows patients and caregivers to share their experiences and provide insights into the impact of cancer. The Cancer Experience Registry has allowed us to collect valuable information around caregivers’ priorities, needs and experiences when caring for someone with cancer. This project is ongoing, and our goal is to increase knowledge and improve outcomes for caregivers in the cancer community. We encourage caregivers to join at www.CancerExperienceRegistry.org.

Caregiver Resources

In addition to research, Cancer Support Community offers a number of resources that provide support to caregivers and patients, including our toll-free Helpline, our Frankly Speaking About Cancer educational series, the direct services offered to caregivers through our Affiliate network, the MyLifeLine service (which connects cancer patients and caregivers with their family and friends for support), and the Cancer Policy Institute’s Grassroots Network, a place to make your voice heard to local and national policymakers.

Cancer Caregivers Book Highlights Research and Resources

In service of our commitment to caregivers, we are excited to share that we have authored a book chapter in Cancer Caregivers, published by Oxford University Press. The book is dedicated to the science of cancer caregiving and the support that is available to caregivers in their community.

Learn more about our book chapter in Cancer Caregivers here.

Read this article online at Real World Health Care.

Obesity and Fatty Liver Disease: The Link Between Metabolic Disorders and NASH

Real World Health Care_____________________________________________________________________

Sammy Saab, MD, MPH, AGAF

by Real World Health Care Editorial Staff

For decades, the general public has been aware of the many health risks of being obese, including diabetes, heart disease and certain cancers. However, many are not be aware that obesity is also linked to liver disease: specifically Non-Alcoholic Fatty Liver Disease (NAFLD), which in its most severe form, becomes Non-Alcoholic Steatohepatitis (NASH).

NAFLD/NASH Defined

According to the American Liver Foundation, it is normal for the liver to contain some fat. However, if more than five to ten percent of the liver’s weight is fat, then it is considered to be a fatty liver (steatosis).

NAFLD is the build up of extra fat in liver cells that is not caused by alcohol. It is the most common form of liver disease in children and has more than doubled in the past 20 years, a statistic that’s important to remember during September’s National Childhood Obesity Awareness Month.

The more severe form of NAFLD is NASH, which causes the liver to swell and become damaged. NASH tends to develop in people who are overweight or obese, or have diabetes, high cholesterol or high triglycerides. However, some people have NASH even if they do not have any risk factors.

Difficulties Diagnosing NASH

NASH often has no symptoms and people can have the disease for years before symptoms occur, making the disease difficult to diagnose.

“Fatty liver is quite common in the United States,” said Sammy Saab, MD, MPH, AGAF, professor, Medicine and Surgery, Head, Outcomes Research in Hepatology, David Geffen School of Medicine, UCLA and co-chair of the National Medical Advisory Committee for the American Liver Foundation. “The hard part is identifying who has simple fat that doesn’t cause serious liver problems and who has the more serious NASH.”

Dr. Saab went on to note that the vast number of people with fatty liver makes it impractical to diagnose NASH using biopsy, an invasive technique with risks including pain, bleeding and sampling errors. Instead, he said that imaging and blood tests are the best and most non-invasive methods for detecting NASH.

He pointed to emerging imaging modalities such as ultrasound or magnetic resonance elastography, which can identify scar tissue and fibrosis, important predictors of outcomes in fatty liver. He also noted that blood tests, including AST-to-Platelet Ratio Index (APRI) and Fibrosis-4 (Fib4), can be used to easily estimate the chances of a patient having advanced fibrosis.

Treating Underlying Metabolic Problems

According to Dr. Saab, NASH challenges don’t end at the diagnosis stage.

“NASH can be a frustrating disease to treat,” he said. “First, we must identify and treat the underlying metabolic problem, whether that’s obesity, diabetes, hypertension, high cholesterol, or a combination of these. If someone has poorly controlled diabetes, we recommend they get their blood sugar in line. If they are overweight, we recommend diet and exercise. But losing weight is difficult unless the patient is very determined, especially with the calorie-dense American diet.”

Because NASH patients typically have co-morbid conditions, an integrated, multi-disciplinary approach to care is crucial. To treat NASH patients, Dr. Saab regularly works with UCLA colleagues in primary care, endocrinology, nutrition, weight control, diabetes management and bariatrics, among other specialties.

“The idea of a hepatologist treating NASH by themselves is naïve…it must be a team effort,” he said. “Additionally, specialists in other medical fields need to increase their awareness of the links between metabolic issues and fatty liver disease so they better understand the significance of the problem and the importance of referring patients at risk for evaluation.”

Supporting the NASH Patient Community

Dr. Saab’s interest in fatty liver disease has led him to conduct clinical trials on NASH treatments and research related topics including the impact of obesity on liver transplant patient survival, safety and efficacy of liver transplants for NASH patients, food addiction in liver transplant recipients, and ethnic variations for fatty liver disease (NASH is the most common reason for liver transplants among Latina women).

He also holds a yearly seminar for patients and their caregivers to learn more about fatty liver disease and is in the process of publishing educational resources for both patients and caregivers with information on what fatty liver disease is, what it means, and what happens when patients have it.

More information is also available through the American Liver Foundation (ALF), which provides patients, family members and the general public, as well as health care professionals, with direct access to NASH education and support services through a variety of programming initiatives, including webinars, in-person education programs, published resources, and online education. ALF’s National Helpline, 1-800-GO-LIVER serves as an additional resource for information and support, and ALF offers an online support group for people affected by NASH.

Read this article online at Real World Health Care.

From CancerCare: The Importance of Cancer Caregivers in Medical Settings

Real World Health Care_____________________________________________________________________

Mary Hanley, LMSW

by Mary Hanley, LMSW

Oncology Social Worker | CancerCare

Being the primary caregiver to a cancer patient is a long, intense experience both physically and emotionally. The cancer caregiver often experiences all the highs and lows of the patient’s cancer journey and is there to observe every detail, for better or for worse. This makes the caregiver a beacon of information on the patient’s physical and emotional well-being during cancer treatment. Yet, caregivers often express feeling ignored by their loved one’s medical team or excluded from the patient’s treatment planning. Considering that cancer caregivers often play second-fiddle to their loved one with cancer in other areas of life, it is imperative that the caregiver feels included for continued success in their role.

A qualitative study of patients and their caregivers suggests that fostering appropriate involvement of caregivers and family members is an important factor for a strong provider-patient relationship.1 Doctor’s visits can be overwhelming and the patient may forget to ask a question. Caregivers are able to observe external signs of illness and can improve communication with their loved one’s health care team. It is crucial for accurate medical treatment of the patient that the caregiver is given the space to report any observations and to be fully acknowledged by medical personnel.

The caregiver also brings their own issues and concerns into the room with them. The average caregiver is 53 years old and 60 percent of cancer caregivers are caring for someone who is 65 years old or older.2 The caregiver is more than likely dealing with age-related health changes in addition to the physical and emotional demands placed on them through caregiving. Furthermore, while the average caregiver is in good physical health, the impact of their loved one’s diagnosis has an equal, sometimes even greater, emotional impact on the caregiver as the patient. When a caregiver isn’t acknowledged by medical personnel, it also can lead to the caregiver feeling ignored or undervalued. One nationwide study in 2015 found that only 29 percent of caregivers are asked about their own care by medical professionals.2

There are a few simple steps to bridge the gap between the medical team and the caregiver. Acknowledgment of the caregiver is the first and most important step. Being respectful of and being genuinely engaged in discussions of the caregiver’s wellbeing can help the caregiver feel important and needed. Such moments are good opportunities for doctors to assess if the caregiver is experiencing any physical complications from caregiving activities, showing any signs of burnout or emotional distress, or needs help navigating extended time away from work. If any of the aforementioned issues are presented, caregivers can often benefit from a referral to the treatment center’s oncology social worker, a patient navigator, a financial coordinator or to mental health services.

About CancerCare

Founded in 1944, CancerCare is the leading national organization providing free, professional support services and information to help people manage the emotional, practical and financial challenges of cancer. Its comprehensive services include counseling and support groups over the phone, online and in-person; educational workshops; publications; and financial and co-payment assistance. All CancerCare services are provided by oncology social workers and world-leading cancer experts. To learn more, visit www.cancercare.org or call 800-813-HOPE (4673).

References

1 Kimberlin, C., Brushwood, D., Allen, W., Radson, E., & Wilson, D. (2004). Cancer patient and caregiver experiences: Communication and pain management issues. Journal of Pain and Symptom Management, 28(6), 566-578. doi:10.1016/j.jpainsymman.2004.03.005

2 National Alliance for Caregiving (2016). Cancer caregiving in the U.S.: An intense, episodic, and challenging care experience. Self-published. Retrieved from https://www.caregiving.org/wp-content/uploads/2016/06/CancerCaregivingReport_FINAL_June-17-2016.pdf.

Read this article online at Real World Health Care.