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.

Help for Pediatric Cancer Patient Caregivers

Real World Health Care_____________________________________________________________________

Julie Komanetsky

By Julie Komanetsky, vice president, Patient and Family Services, The National Children’s Cancer Society

By definition, parents are their child’s number one caregiver. However, when that child has cancer, “caregiving” takes on a completely new meaning and many new challenges.

Consider the journey: A child is born, and the proud parents wait for a little cry.  They count ten fingers and ten toes and they give thanks for the healthy addition to their family.  Cancer is the farthest thought from their minds.  After all, cancer is something that happens to adults—not children, or so they think.

The symptoms are different based on the child and the type of cancer, but parents tell us stories of trusting their intuition when their child ends up sick and doesn’t seem to recover after a few days.  They push for testing beyond what’s normal.  They know something isn’t right.  Still, when the doctor walks into the room to tell them that their child has cancer, parents are devastated.

Caregiving Takes on New Meaning

Cancer is a diagnosis that impacts the entire family, oftentimes sending them into a tailspin as they adapt to their new role as cancer patient caregivers.   One mom, whose son Zach was diagnosed with rhabdomyosarcoma at age 2, told The National Children’s Cancer Society (NCCS):

“Those first few days after his diagnosis, I couldn’t eat, couldn’t sleep, and couldn’t think. I was afraid he wouldn’t live to see age three.”

Her reaction is common.  Parents are faced with the immediate need to learn about their child’s cancer and treatment plan.  They are further challenged with maintaining their households, taking care of their other children, missing work and ensuring the family’s financial stability.  And one of their most difficult struggles, yet most basic needs, is simply getting their child to and from treatment.

And then they find NCCS.  Most often, they are referred by a social worker at the hospital for help with the financial burden of childhood cancer, but soon discover we can also help with their emotional struggles through our Family Support Program.

Supporting Family Caregivers

The NCCS works tirelessly and compassionately to support families making their way through the daunting world of childhood cancer.  We know how to navigate this world, helping families get where they need to be—physically, financially, and emotionally—to give them hope, and to give their children the best possible shot at survival.

Our dedicated staff is here to provide practical and emotional support to parents, caregivers and survivors.  Once a family is referred to the NCCS, a case manager is assigned to them who stays by their side throughout their cancer journey.  Our case managers are trained professionals who help during difficult times, encourage parents to advocate for their child, provide referrals, and perhaps most importantly, they listen when a parent just needs to talk, and they comfort when a parent just needs to cry.

Hazel

Our support is critical for families like Hazel’s.  Hazel is the youngest of four and was diagnosed with leukemia when she was two.  She recently turned four years old and continues to receive chemotherapy at a hospital two hours from home during the maintenance phase of her treatment.  Hazel’s dad, Nat, recalls the past year as the toughest of his life, describing it as excruciatingly hard for his entire family, as cancer changed their lives entirely but never destroyed their family bond.  Nat shares:

“My family is stronger today because of our journey with cancer, and here’s why: people.  The people we have met during this process have been unforeseen blessings, providing comfort, support, love and respect at every turn.  We have met doctors, nurses, administrative staff, individuals and professionals from all walks of life that helped provide the stilts to prop my family up as we struggled to manage our situation.  Some of the most cherished people have been representatives from The National Children’s Cancer Society.”

At The National Children’s Cancer Society, we create a clear path through the maze of childhood cancer and survivorship to help families stay strong, stay positive and stay together.  Because no family should have to go through childhood cancer alone.

About the Author

Julie Komanetsky has tirelessly and compassionately served with The National Children’s Cancer Society (NCCS) for more than 20 years. She is currently the Vice President of Patient and Family Services, overseeing all NCCS programs, taking a “no matter what” approach, to create a clear path through the labyrinth of childhood cancer and survivorship to help families stay strong, stay positive and stay together. She is a member of both the Association of Pediatric Oncology Social Workers and the Grant Professionals Association.

Read this article online at Real World Health Care.

Where Does NASH Stand on the Global Public Health Agenda?

Real World Health Care_____________________________________________________________________

Donna Cryer, JD

This week, Real World Health Care continues our series on Non-Alcoholic Steatohepatitis (NASH) by featuring an interview with Donna Cryer, JD, president and CEO of the Global Liver Institute (GLI). Cryer founded the GLI on the 20th anniversary of her liver transplant due to an autoimmune disease. Today, four years later, GLI stands firm in its mission to improve the lives of individuals and families impacted by liver disease by promoting innovation, encouraging collaboration and scaling optimal approaches to help eradicate liver disease.

A Vision for Liver Health

Real World Health Care: What was your vision when you set out to create the Global Liver Institute?

Donna Cryer: The GLI was designed to be patient-centric from the start. I wanted to make sure that other liver disease patients had access to the type of innovations and treatments that saved my life. At the time, I didn’t see a lot of awareness around liver disease and liver health. There was a stigma attached to having liver disease, and there still is to a degree.

Our vision is for liver health to take its place on the global health agenda commensurate with its prevalence and impact. Half a billion people have liver disease, but the public health agendas for research, policy, and public knowledge and support don’t reflect the scope of the disease.

We want to change the culture around liver disease to reduce stigma, change policies so patients have better access to care, and change health care delivery systems and reimbursement frameworks so new treatments get to the patients who need them.

We also want patients and their families to become better advocates so they can work more effectively to raise visibility and help change policy. To that end, we recently created an Advanced Advocacy Academy, which connects liver patients and family members with the information, skills and opportunities they need to effectively advocate for liver health.

NASH Council

RWHC: How does the GLI’s NASH Council help support patients with this advanced form of fatty liver disease?

DC: NASH is unique, partly because there are none of the underpinnings we typically see for other disease states. While research is starting to progress, the NASH patient community lacks education materials, support groups, and awareness efforts — despite the fact that one in four people around the world are estimated to have some form of fatty liver disease and 16 million people in the United States have NASH.

We created our NASH Council to fill that gap and to help define the NASH community more broadly than has been done with other liver diseases. Because NASH and other fatty liver disease patients often have concurrent metabolic conditions, NASH advocacy can’t exist in a silo. That’s why our NASH Council is reaching out to the obesity, diabetes and cardiovascular communities and conducting workgroup calls focused on patient education, clinical workflows and policy. Our 50-member council includes organizations with exponentially large reach, including the American College of Physicians and the American Heart Association.

Our latest efforts center on determining lifestyle interventions for NASH patients. We’re working with physicians in hepatology, diabetes, cardiovascular and primary care to delineate how and by whom patients with NASH and other fatty liver diseases can be diagnosed earlier and referred to the appropriate specialist in a timely manner. Truly integrated care can’t come fast enough.

Early NASH Disease Screening

RWHC: Why is early screening so important for NASH patients?

DC: If fatty liver disease is found early, before it has a chance to cause significant fibrosis, the disease can be effectively reversed through lifestyle interventions, such as losing seven to ten percent of your body weight. Unfortunately, most NASH patients are diagnosed in advanced stages of the disease, when fibrosis and cirrhosis have caused extensive cellular damage. At that point, the only treatment option that currently exists is transplantation, which isn’t feasible for this large patient population; there just aren’t enough organs to go around.

Currently, the only way to truly define NASH is through a liver biopsy, which is both invasive and risky. In addition, because a biopsy may not capture the affected portion of the liver, it can’t be considered a gold standard. Screening therefore needs to include metabolic syndrome risk factors and non-invasive technologies such as imaging and liver enzyme analysis.

Promising NASH Developments

RWHC: Are there any screening or treatment approaches on the horizon that give you hope?

DC: In terms of screening, there are many existing imaging technologies and several more in development including large validation efforts by NIH in the US and consortia in the UK/Europe. One strategy that holds promise is simple: Moving existing hospital imaging capabilities into diabetes clinics. Just roll them down the hall! This would help to speed diagnosis for the estimated 80 percent of Type 2 diabetics who have fatty liver disease.

In terms of NASH treatment, there are several transformative candidates currently in Phase III trials that should be approved within the next year. This development is particularly exciting because the various therapies target different mechanisms. Some directly reduce fibrosis, while others reduce fat accumulation or overall inflammation. Some candidates address more than one mechanism, which will allow for greater therapy personalization and greater likelihood that a therapy will be effective for a wide population.

Therapies for fatty liver disease represent one of the most robust innovation areas in health care today. At a time when so many diseases still do not have cures, this outpouring of research holds hope and promise for liver patients like me.

Read this article online at Real World Health Care.

Calling for A Culture of Caring

Real World Health Care_____________________________________________________________________

Ruth Lippin, LCSW, JD

When someone becomes ill with a chronic disease such as cancer or multiple sclerosis, theirs is not the only life that changes. Indeed, their illness can impact friends, co-workers, and most particularly, their family members. Nowhere is that impact felt more strongly than by the family caregiver: the person whom the sick loved one counts on to provide the aid, comfort and care they need to supplement the professional care they receive from their health care providers.

According to Ruth Lippin, LCSW, JD, the role of the family caregiver has evolved over the past century. Lippin, a cognitive behavioral therapist who also runs a geriatric care management company, said that in previous generations, extended families lived together longer, making it easier for individual family members to “pitch in” when help was needed.

“Today, our country places a higher value on individualism,” she said. “We’re no longer a culture in which we take care of each other. Asking for or needing help is often seen as a sign of weakness instead of being embraced. People with chronic illnesses are vulnerable, and they need the protection of our society.”

Reluctant Patients, Resentful Caregivers

Taking care of a loved one with a serious illness changes the family dynamic, especially when the caretaker is an adult child, said Lippin.

“It’s a complete transformation of the relationship from one of being cared for to one of having to be the caretaker,” she explained. “The ill parent may be reluctant to be taken care of, and the adult child often isn’t used to asserting their authority or conducting the type of care tasks that aren’t part of the ‘normal’ course of development for a parent/child relationship.”

“Consider an adult child whose parent has Parkinson’s disease and should no longer be driving,” she offered. “How do they cope with the worry that their parent may hurt themselves or others while driving? How, as their child, do they assert authority to take away the keys?”

Lippin said that it’s not uncommon for caregivers to feel guilty, stressed, anxious and depressed while caring for a loved one. Resentment also can grow quickly, especially if the family caregiver feels “forced” into taking care of their loved one or does not receive the support they need from siblings or other family members.

“Caregivers face an internal conflict about exactly what one owes another person by virtue of being a blood relative or having loved them, in the case of a well spouse caring for an ill spouse,” Lippin explained.

Financial stress also can take its toll if the ill family member can no longer work, or if the caretaker has to leave their job or cut back on hours to provide the care their loved one needs.

“I had a client with a thriving freelance business who ended up on Medicaid while taking care of her elderly mother because she could no longer work the hours she needed to support herself financially,” Lippin said. “I would much rather have a loving, doting aide caring for me than a resentful family member. Unfortunately, a family caregiver is often the only solution because hiring a live-in caretaker or full-time aide is cost-prohibitive for most people.”

Setting Boundaries and Seeking Help

Lippin said that it’s crucial for family caretakers to set boundaries to avoid emotional burn-out and the negative biological affects that too much anxiety and depression can have on their central nervous system.

“I often see caretakers who stop taking care of themselves while they are taking care of a loved one,” she said, noting that 30 percent of caregivers die before their ill loved one. “They may skip doctor’s appointments because they can’t or won’t leave their loved one alone. Or, they may stop taking their own medications if finances become an issue. One client’s very ill spouse outlived her by many years because she stopped taking care of herself to care for him.”

Lippin is adamant that caregivers need to take care of themselves as well as their sick loved one.

“Do something for yourself a couple times a week,” she suggested. “Meditate, take a yoga class or join a support group with people who understand exactly what you’re going through. Realize that you aren’t in this alone and that you shouldn’t be expected to give and give without receiving some care of your own.”

“Caretakers also can benefit from professional help available through a therapist,” she said. “A professional therapist will provide a compassionate ear and listen to their concerns without passing judgement. Together, the therapist and caretaker can formulate a plan to help them decrease their stress, anxiety, depression or other mood disorders.”

Even if seeing a therapist or hiring an aide for their loved one is not an option financially, there are a range of free online and in-person support groups and self-help information available said Lippin, pointing to resources available through her professional society, the Anxiety & Depression Association of America.

Through the ADAA website, caregivers can learn more about mental health signs and symptoms, read tips for restoring mental wellness, and join a free, anonymous online support group.

“Seek help,” Lippin urged caretakers. “As a caretaker, you need someone caring for you too.”

Read this article online at Real World Health Care.

NASH: A Disease without Symptoms but Lots of Hope

Real World Health Care_____________________________________________________________________

Wayne Eskridge

by Wayne Eskridge, President & CEO, Fatty Liver Foundation

What if you had a liver disease but nobody told you until it was too late?

Typically, nonalcoholic fatty liver disease (NAFLD) and nonalcoholic steatohepatitis (NASH) are silent diseases. They have no symptoms. Even if cirrhosis has developed, there are often no symptoms until the liver has become so damaged that the only option is a liver transplant.

Early screening for NASH is essential, but obstacles abound. While there is a quick, easy and economical method to screen for fatty liver disease, it is not widely available and screening in the absence of symptoms is often not part of standard medical practice policy. Medical coverage for the test also may not be available if the patient isn’t sick or doesn’t have symptoms.

Fatty Liver Foundation Screening Project

The Fatty Liver Foundation advocates for early screening. Our plan is to deliver liver care screening for the estimated 40 million co-morbid diabetes/NAFLD/NASH patients. This patient group is our initial target for screening because up to 70 percent of type 2 diabetics have undiagnosed liver disease. The project’s long-term goal is to have 400 testing locations seeing one million patients a year.

 

 

The screening project is currently in its pilot phase. The first installation is in the greater Houston area and the purpose is to gather real world data on self-selected patients and to test methods and procedures to provide guidance to the larger project to follow. The study is being conducted as a formal study which can be read here as NCT03726827 on ClinicalTrials.gov.

State of Liver Research

While attending the 2018 meeting of the American Association for the Study of Liver Diseases (AASLD), I was struck by the sheer volume of research going into NAFLD/NASH/cirrhosis and how the evolution of new tools and probes coming from the broader arena of basic science is helping us along our journey to understand the liver.

The black box nature of many of the liver’s functions is giving way to a real understanding of the specific chemical reactions between and within the cells. The study of lipids within the liver and body-wide is burgeoning, as fatty acids are both foundational molecules and dose-related substances involved with disease. The study of cellular response – such as how stellate cells are affective by different molecules — is robust.

Stepping up a level from how molecules work, researchers also are studying how the systems of body processes interact in ways that either lead toward health or toward dysfunction and illness. For example, scientists are investigating how liver fat responds to manipulation of certain thyroid hormones.

Then, we step out to see how body-wide functions like inflammation, wound management, tissue health, immune response and other processes lead to liver damage or may be recruited to promote healing. Here, the issue of comorbidity comes into focus as we look at the liver’s relationship with cardiovascular and diabetic disease, as examples.

The meeting also showcased the significant work being undertaken on non-invasive markers for primary care-level triaging of patients with active disease, but who present as symptomatic. One of the most interesting developments was the documentation of the role that Fib-4 might play in the process. There is growing evidence that Fib-4, and several other blood-based candidates used as filters for screening, can help to determine referral to a specialist.

As a patient, being able to see the depth and breadth of the effort whose goal is to save my life, and that of the millions of patients like me, was both humbling and exhilarating. The knowledge that research will lead to solutions makes the day-to-day easier to bear and gives us patients a reason to find hope.

About the Fatty Liver Foundation

The Fatty Liver Foundation is dedicated to identifying asymptomatic, undiagnosed Americans with liver fibrosis or early cirrhosis caused by fatty liver disease, and to educate them on the lifestyle changes needed to halt or minimize progression of the disease. Here is a link to a brief video about the Foundation. Founder and CEO Wayne Eskridge was diagnosed with cirrhotic NASH in 2010 and since then has been dedicated to learning as much as possible about the disease and to helping other liver disease patients. For more information, visit the Fatty Liver Foundation website, or connect via Twitter.

Read this article online at Real World Health Care.