Mission: Cure Blog

Patient-Centered Care Models for Pancreatitis Patients

By Blog, News
Director of Patient Centered care

Avi Khullar, Director of Patient Centered Care

What are the experiences of individuals suffering from chronic pancreatitis and acute recurrent pancreatitis as they seek care and support?

  • How does this condition change the way that they go about their daily lives?

  • If pancreatic patients could reimagine their ideal care experience, what would that look like?

These were some of the questions that we sought to answer as we spoke with patients and caregivers of those suffering from chronic pancreatitis and recurrent acute pancreatitis.

Over the course of 20 interviews, we listened to stories of excruciating pain, anxiety, and hopelessness as individuals and their families grappled with the medical system in search of a diagnosis or even just sufficient care. These conversations deepened our understanding of the immense impact of pancreatitis on the social, emotional, mental, and financial well-being of individuals and families –  challenges that are rarely discussed while managing the physiological aspects of the condition. And we walked away from these conversations with a strong sense of urgency to do all that we could to ensure that patients battling pancreatitis could receive the holistic, compassionate, patient-centered care necessary to improve their well-being and lead resilient lives.

This report highlights the experience of patients and caregivers through their own words, identifies gaps in current approaches to care, and weaves together concrete ideas shared by patients, caregivers, and providers to improve patient outcomes and quality of life.

Inspired by these conversations, the team at Mission: Cure has identified concrete next steps to create a new patient-centered care model in which pancreatitis patients receive compassionate and holistic care that improves all aspects of their well-being and quality of life. We hope that the stories and themes noted in the report will inspire you and spark an actionable dialogue with providers, payers, and other stakeholders to drive measurable improvement in patient outcomes and experience.

Seeking Treatment for Chronic Pancreatitis: Laura’s Story

By Blog, Patient Stories

Laura while traveling in Wadi Rum, Jordan

Stabbing Pain Leads to Acute Pancreatitis Diagnosis

In December 2018, Laura Perry, a 24-year old previously-healthy law student, began experiencing abdominal pain after returning home from a trip to Mexico with her family. While in Mexico, Laura had contracted an infection. Believing that it was nothing serious, her doctor prescribed antibiotics. The antibiotics were unsuccessful in reducing the pain so Laura went to an urgent care in hopes of a more effective treatment. The urgent care doctor incorrectly diagnosed H. Pylori and prescribed more antibiotics. But, Laura’s pain intensified. She describes the pain as the worst pain she had ever experienced in her life, like someone was repeatedly stabbing a knife into her stomach. With increasing pain intensity, Laura went to the emergency room and found out that her lipase levels were alarmingly high. (The pancreas produces an enzyme called lipase that is released into the digestive tract to help digest fats).

 

At this point, Laura was hospitalized and diagnosed with acute pancreatitis. Given the lack of understanding and treatment for acute pancreatitis, Laura’s total pancreatitis treatment consisted of IV fluids, pain medications, and limited food, leaving her feeling frustrated and helpless, even after she was released from the hospital.

Recurrent Attacks of Acute Pancreatitis

Although  she was initially told that her pancreatitis attack was acute and would probably not reoccur, over the next few weeks Laura had more attacks. An MRCP (similar to an MRI) revealed that her pancreatic duct was dilated. This triggered an endoscopic ultrasound which revealed marks on her pancreas consistent with early stages of chronic pancreatitis. Laura was hospitalized several times over the next few months and was increasingly frustrated by the apparent lack of effective treatment. She was also asked, and challenged, about her use of alcohol, even though she had clearly informed the hospital that she rarely drank alcohol. Laura was frustrated at having  to deal with the stigma that surrounds pancreatitis while dealing with increased frequency and severity of pain.

Incorrect Assumptions About Pancreatitis and Alcohol

Unfortunately, Laura’s experience of being questioned about alcohol is common. Many doctors immediately assume alcohol when asked about the cause of pancreatitis. This damaging stigma serves to prevent further research in understanding or finding effective treatments for this debilitating disease despite findings that, “Only very heavy drinking—four or five drinks a day over a prolonged period (five+ years)—appears to be associated with the onset of CP. Even among people who drink that amount, only about 3 percent develop pancreatitis” (Pandol, 2019). It is clear that the stigma of alcoholism surrounding pancreatitis is incorrect. It has even been noted that “moderate drinking appears to be associated with lower rates of chronic pancreatitis” (Pandol, 2019).

Every Pancreatitis Patient’s Question: What Next?

Despite visiting many doctors, Laura received limited information, help or answers; opioid prescriptions and dietary suggestions were the only “treatments” for Laura’s debilitating pain and other symptoms. Her acute pancreatitis became chronic pancreatitis. She was diagnosed with chronic idiopathic pancreatitis, meaning the exact cause of her disease was unknown, leaving her searching for answers.

Search for a Chronic Pancreatitis Treatment

Just as Laura was ready to throw in the towel and accept the bleak reality of a future with pancreatitis, she met Dr. Stephen Pandol, one of the nation’s leading pancreatic experts and an advisor to Mission: Cure. Pancreatitis, despite being a rare disease, does not progress or feel the same for all patients and both Dr. Pandol and Mission: Cure advocate for individualized treatment for this complex chronic disease. Dr. Pandol is a leader in providing innovative treatment options for his pancreatitis patients. For example, he evaluates existing, safe medications that are used for other conditions, but have scientific evidence of positive effect on pancreatitis. These medications are known as “repurposed” drugs.

Dr. Pandol ordered genetic tests for Laura from Ariel Precision Medicine and Laura’s genetic results indicated that she has several genetic indicators related to pancreatitis. This genetic information helped Laura better understand the underlying causes of her disease. Additionally, Dr. Pandol has conducted pancreatitis studies that Laura has eagerly participated in including studies that will help identify potential treatments for herself and others. Laura also started working with Mission: Cure to learn more about her condition and alternative treatments which gave her hope and support in  her journey and these connections helped Laura stay optimistic and hopeful as she continues to fight her disease.

Hope Prevails: Life After Pancreatitis Treatment

laura perry

After finishing Teach for America, Laura received her Masters in Education

Laura’s immeasurable strength and resilience is evidenced by her many accomplishments. She currently attends law school and maintains a near-perfect attendance record despite her battle with pancreatitis. Despite previously being in constant pain—one that has often been described as more intense than that of giving birth—Laura graduated at the top of her class and remains ambitious in her career aspirations. After her first summer of law school, she interned at the American Civil Liberties Union and this past summer Laura worked at a litigation firm, focusing on projects related to voting rights and higher education. Laura has not allowed pancreatitis to hold her back from achieving her goals.

Laura’s story is filled with hope and strength but is also tainted by the harsh reality that there are no effective therapies to treat or cure pancreatitis. Patients like Laura are suffering every day with this disease.  Every day, we at Mission: Cure are committed to taking meaningful steps that will bring us closer to a cure. Mission: Cure is dedicated to finding effective treatments and ultimately cures for recurrent acute and chronic pancreatitis within ten years. The experiences and unmet needs of patients like Laura and many others, young and old, inspire us to reach these important goals.

ICD Codes Linking Pancreatitis to Alcohol Harm Patients. Let’s Change Them.

By Blog

icd codes pancreatitisKey Takeaways

    • Currently, ICD Codes for pancreatitis associate the disease with alcohol consumption, which is scientifically inaccurate. Physicians use a system called ICD-10 codes to identify diagnoses and procedures in patient medical records and for insurance reimbursement.
    • Chronic Pancreatitis has been inaccurately thought to be caused by alcohol. This is now known to be inaccurate, but is still reflected in ICD codes. That needs correcting.
    • Inaccurate coding harms patients, causing incorrect diagnosis, delayed treatment, bias and stigma.
    • Mission: Cure has submitted a proposal to the CDC to delete the code for Alcoholic Chronic Pancreatitis and replace it with scientifically relevant codes.
    • We will need patients and family members to contact CMS and the CDC to speak up against the current coding structure and demand changes to the codes that reflect accurate diagnosis.

Pancreatitis and Alcohol

When pancreatitis patients go to the doctor or the emergency room, they face a barrage of questions and numerous tests in hopes of finding the cause of their intense pain. If you are a pancreatitis patient, you have probably been asked if you drink alcohol. You may have been told that drinking caused your pancreatitis or that you have “alcoholic pancreatitis.” You might have felt pressured to say that you have had alcoholic drinks, even occasionally, socially or for special occasions, and you may have been treated with skepticism if you denied drinking alcohol.

Without other clear options, doctors often assume the traditional diagnosis: Alcohol-induced chronic pancreatitis. This diagnosis corresponds to the code submitted for reimbursement by an insurance company, namely, K86.0.  K86.0 is an ICD-10 code.  ICD-10 codes are used to diagnose all types of disorders, injuries, and diseases. These codes, once entered, stay on a patient’s medical record for the rest of their life as it is extremely difficult to remove or change a code once on a patient’s record. For Chronic Pancreatitis, this incorrect diagnosis and code follows the patient, biasing future providers and denying access to further diagnostic investigation and appropriate treatment options.

ICD Codes, Pancreatitis, and Alcohol

Currently, there are only two ICD codes for Chronic Pancreatitis: The first is Alcohol-Induced Chronic Pancreatitis (K86.0). As highlighted above, this is an incorrect diagnosis for chronic pancreatitis.

The second is Other Chronic Pancreatitis (K86.1) where all other causes of chronic pancreatitis are lumped together, which is neither accurate nor helpful for diagnosis, treatment or reimbursement. This focus on alcoholic chronic pancreatitis obscures all the other causes of pancreatitis, something of particular concern.

Dangers of the “Alcohol-Induced Chronic Pancreatitis” ICD Codesalcohol and pancreatitis

This Code Does Not Reflect Current Science

  • Research in the last twenty years has shown that alcohol does not cause chronic pancreatitis

“Alcoholic Pancreatitis” Label Creates Bias Against Patients

  • Patients labeled with Alcohol-Induced Chronic Pancreatitis are told to stop drinking and sent away without further testing, including genetic testing. We now know that genetic drivers are an important cause of Chronic Pancreatitis but without genetic testing, patients are denied accurate diagnosis and treatment.
  • Given an alcohol-induced chronic pancreatitis diagnosis, patients often blame themselves for their debilitating illness, which is associated with increased levels of depression and suicide.

Missed Opportunities for Research

  • Physicians and researchers who believe that alcohol causes Pancreatitis have ignored the need for clinical research of the genetic and biological causes of the disease instead blaming patients and assuming that alcohol abstinence is the “cure.”
  • For more information on the connection between Pancreatitis and Alcohol, please read our blog post. For information on Genetic drivers of Pancreatitis please watch our webinar. 

Mission: Cure’s Proposal to Change ICD Codes for Pancreatitis

Mission Cure recognizes the harm to patients perpetuated by the current coding structure and we aim to correct this problem. We submitted a proposal to the CDC requesting a complete overhaul of the current Chronic Pancreatitis coding structure including:

  • Chronic Pancreatitis should be identified as a specific disease and code, not a subset under Other Diseases of the Pancreas.
  • Alcohol-Induced Pancreatitis must be removed from the ICD-10-CM codes because alcohol-induced pancreatitis is not scientifically accurate, to improve patient experience and to increase research into cures and drivers of disease. We propose adding codes for genetic and other specific causes of Chronic Pancreatitis.

What’s Next and How You Can Help

Mission: Cure’s proposal is currently under review and pending approval for presentation at the ICD-10 meeting being held in March, 2021.

We will need patients to attend the meeting and submit comments during the post-meeting comment period. If you believe you were incorrectly labeled with alcohol-induced pancreatitis, if you were mistreated treated as a result of this label, or if you simply find this coding structure unacceptable, please give us your name and contact information so we can let you know how to participate.

We believe this change in what appear to be boring administrative codes can make a huge difference in patients’ lives.

Mission: Cure’s Statement on Racial Equality and Justice We at Mission: Cure stand in solidarity with the Black community, the Black Lives Matter movement, and efforts to end systemic racism. We commit to look into ourselves as individuals and as an organization and to do more to advance anti-racism in everything we do.

Mission: Cure’s Statement on Racial Equality and Justice

By Blog

We at Mission: Cure are shocked and outraged by the circumstances surrounding the deaths of George Floyd, Breonna Taylor, Tony McDade, Sandra Bland, Ahmaud Arbery and countless other victims of anti-Black violence. We stand in solidarity with the Black community, the Black Lives Matter movement, and efforts to end systemic racism. We commit to addressing racial inequality whenever and wherever we encounter it. However, as white female leaders, we acknowledge the limits of our own life experiences and therefore, will seek out and listen to those who face systemic injustice on so many levels. We commit to look into ourselves as individuals and as an organization and to do more to advance anti-racism in everything we do.

Taking on tough challenges is part of Mission: Cure’s DNA as it was founded to change how all disease is cured, starting with chronic pancreatitis.  Our mission is to ensure that all people afflicted with debilitating and untreatable diseases can count on life-saving treatments. Clearly though, this vision cannot become reality without confronting and addressing the systemic racism that routinely restricts Black, Indigenous and people of color’s access to diagnosis, treatment, cures, advocacy and support. These barriers impede participation in clinical research and Black rare disease patients are under-represented in the fight to improve patient outcomes. Mission: Cure’s quest to find a cure for chronic pancreatitis is far from over and we are committed to making sure no one is left behind. We must, and will, step up to do more as determined agents of change.

At a minimum, we commit to the following concrete steps to advance anti-racism in our organization and our work:

  • Expand our pancreatitis patient engagement efforts with a focus on expanding our reach within the Black, indigenous and people of color pancreatitis patient communities to understand and document their specific needs and priorities.
  • Ensure that studies supported by Mission: Cure will actively include and address the disproportionate burden of chronic pancreatitis in the Black and Brown communities.
  • Amplify the voices of Black, indigenous and people of color communities, including patients, clinicians, researchers and entrepreneurs in our work.
  • Develop a working group to brainstorm on lessons learned from COVID-19, including significantly worse outcomes for Black and Brown communities and the need for systemic healthcare reform to improve access to care and better care coordination.

In solidarity,

Linda Martin and Megan Golden, Co-Directors

Scary Medical Procedures Can Cause PTSD in Kids with Pancreatitis

By Blog, Pediatric Pancreatitis

Key takeaways:
•   Medical procedures can be traumatic for children, and this trauma can cause “medical PTSD”– a condition called pediatric medical traumatic stress, or PMTS
•   PMTS is being studied in people with chronic pancreatitis and other chronic illnesses
•   If children suffer from PMTS, parents can help by finding psychologists experienced in chronic illness, keeping their doctors and social workers informed, and seeking care for themselves

Addison Cuneo, MD, Clinical Fellow Pediatric Gastroenterology

Addison Cuneo, MD, Clinical Fellow Pediatric Gastroenterology, Hepatology, and Nutrition University of California, San Francisco

I see you. I see the struggle of chronic illness, I see the deeply intertwined web of psychological stress and reactions of the body, and I see the impact of the “care” provided by the medical system.

As a fellow in pediatric gastroenterology, I have spent the last few years at the bedsides of my patients, many of whom are living with the ebbs and flows of chronic pancreatitis. I have witnessed a medical system that repeatedly imposes stressful and potentially traumatic practices on kids and their families. I became interested in understanding the trauma caused by medical care and the role this trauma plays in chronic illness.

Researchers are just starting to recognize that medical care can actually be traumatic for patients, especially children. Here’s what we’ve learned so far.

When Treatment Causes Trauma: Medical PTSD

Being stuck with needles repeatedly. Lying in pain in a hospital bed, connected to machines by tubes. These and similar experiences can be understandably scary for children, or even adults.

I treated a three-year-old chronic pancreatitis patient who would lie to her parents about her pain to avoid going to the hospital. Another patient, seven years old, tried to flee the operating room, screaming “I know what you are going to do to me!” It took us 40 minutes to convince him to go under anesthesia. These children, young as they were, already believed that the hospital was not a safe space.

What makes medical experiences traumatic, rather than merely scary or unpleasant? Experiences become traumatic when they cause lasting symptoms that impair patients’ ability to carry out normal activities. There are four aspects of this trauma: arousal (for instance, having trouble sleeping or being easily startled), intrusion (flashbacks, memories of the event coming up when you don’t want them to), avoidance (for instance, avoiding situations that trigger memories of the event), and negative mood (such as having a negative perspective about yourself). We don’t know what makes a particular incident more traumatic than others—it’s something we are researching.

When children are traumatized by medical events, they experience a mix of physical and psychological impacts that are collectively known as pediatric medical traumatic stress, or PMTS for short. There is now a technical definition for this condition: “a set of psychological and physiological responses of children and their families to pain, injury, serious illness, medical procedures, and invasive or frightening treatment experiences.” You may be familiar with a similar-sounding condition, PTSD—post-traumatic stress disorder—and its terrible effects on soldiers and others who have experienced severe stress. PMTS has similar impacts on children and their ability to go about their daily lives.

If you’re the parent of a child with pancreatitis, you probably recognize this phenomenon, even if the name is new. Has your child tried to avoid medical procedures? Has she become wary of doctors? Has he been withdrawn for more than a short period—maybe not engaging at school, or not playing with friends? These are common symptoms of medical trauma. Many patients with chronic pancreatitis show these and other symptoms of PMTS.

PMTS is best understood in children with cancer or injuries, or who have been admitted to the intensive care unit. But it is increasingly being studied in patients with chronic illnesses, including chronic pancreatitis. For more information click here.

Chronic Illness Means Repeated Trauma

Traditionally, PMTS has referred to the effects of a single event—a diagnosis, for instance, or a painful procedure. But this model does not fit patients with chronic illnesses, especially chronic pancreatitis, because they are repeatedly exposed to traumatic events.  There isn’t just one operation or one period of illness. There is a lifetime of doctors, medicines, surgeries, hospitalizations, secondary illnesses, and complications, each of which means recurrent interactions with the healthcare system.

Researchers believe that repeated childhood traumas put the body’s alert systems into chronic overdrive, creating a phenomenon called toxic stress. Toxic stress causes measurable changes to the body, altering the way the body and brain develop, right down to the structure of DNA. For more information on toxic stress click here.

Repeated traumatic stress can cause measurable changes to the body

What Can We Do?

The study of this phenomenon is in its infancy. But in the coming years, we hope to better understand

  • how common Pediatric Medical Traumatic Stress (PMTS) is in patients with chronic pancreatitis
  • what puts patients at risk for PMTS
  • how some patients endure many traumatic events without developing PMTS
  • the impact of PMTS on the disease’s progression.

Along with other scientists, I am studying ways to minimize medical trauma to children undergoing treatment, screen patients for risk factors, and ease symptoms.

The National Child Traumatic Stress Network has already taken the first steps, putting together resources for parents and providers to address medical traumatic stress. Check them out here.

Although we’re still learning a lot about PMTS, we do know of steps that parents can take to help their kids avoid medical trauma. For instance, it’s very important to maintain schedules and routines, at home and in the hospital. Even something as simple as brushing teeth twice a day can send the message that regular life is continuing. Be sure to communicate early in the medical process with your child’s doctor and social work team. And never trick or lie to your child about a medical procedure or hospital stay. I’ve seen well-meaning parents do this, but it never helps, and often causes damage. Your child’s medical caregivers can offer advice on how to talk to your child about upcoming medical care.

If your child is suffering from PMTS, keep up with those all-important routines. Seek psychological help but be aware that since PMTS is related to medical care, you need to keep your child’s doctors and social work team involved. Find a therapist with experience with chronic illness. If you are unsure how to locate one, check with your medical or social work team for advice. And don’t forget about yourself. If you’re finding it hard to cope with your child’s illness, get help. Helping yourself also helps your child—the effects trickle down.

Tips for preventing medical trauma to your child 

  • Maintain schedules and routines
  • Communicate early and often with your child’s medical caregivers
  • Be honest with your child about upcoming medical procedures or visits

Tips for helping your child cope with medical trauma 

  • Maintain schedules and routines
  • Seek psychological care for your child from a therapist experienced in chronic illness
  • Keep doctors and social workers informed about your child’s psychological care
  • Get psychological care for yourself

I see you. But today I also see a light at the end of the tunnel. I see a greater understanding of the trauma caused by treating chronic pancreatitis and a new determination to find solutions. I see hope for reducing your trauma as we treat your chronic pancreatitis.

Managing Chronic Pain in Pancreatitis

By Blog, Pain Management, Patient Resources, Pediatric Pancreatitis, Topics

Key points:

•   Chronic pain from pancreatitis takes a major toll on patients and their loved ones.
•   To effectively treat chronic pancreatitis pain, we need to address the symptoms as well as the impact of pain on patients’ lives. 
•   One piece of the solution is self-management, which involves education, lifestyle changes, pain coping skills, and emotional and social support.
•   Computer and smartphone technologies can be used to teach self-management to patients who lack access to interdisciplinary pain facilities.
•   There are self-management apps specifically for pancreatitis pain and clinical trials for children and adults to determine how effective they are.

Dr. Tonya Palermo - Managing Chronic Pain in Pancreatitis

Dr. Tonya Palermo – On September 26, 2019, Mission: Cure hosted a webinar on Living with Chronic Pain for pancreatitis patients. Pediatric psychologist Tonya Palermo of the University of Washington, an expert in pain medicine, discussed her research on pain management techniques.

The agonizing burdens of chronic pain

The definition of chronic pain will feel familiar to any chronic pancreatitis patient: ongoing or recurrent pain, lasting beyond the usual course of acute illness or injury or more than 3 to 6 months, and adversely affecting the individual’s well-being. In fact, this type of pain—persistent, intense, debilitating—is a defining feature of chronic pancreatitis. Mission: Cure’s Patient Experience Survey identified this pain as the primary symptom affecting patients’ day-to-day lives. 

 Chronic pain affects more than 100 million American adults, including patients suffering from chronic pancreatitis. This number is growing. The burden of chronic pain already eclipses the burden of diabetes, heart disease, and cancer combined. 

Yet chronic pain is difficult to treat and manage. This is partially because the pain system is extremely complex. Research shows that chronic pain does not simply affect the parts of the body experiencing pain. It actually changes the brain. 

I’m a pain specialist, so I see every day what this means for my patients. Chronic pain is not just about aching bodies. It affects patients’ emotions, activities, and relationships—virtually every aspect of their daily lives. Half of patients with chronic pain suffer from anxiety or depression. Chronic pain prevents patients from spending time with their kids, enjoying the company of friends, fulfilling their responsibilities at work. Families suffer too. When children are in chronic pain, their parents are often consumed by worry, anxiety, or fear.

Today we understand that three factors influence the way we perceive pain: biological (such as our sex or whether we’ve been through puberty), psychological (such as our beliefs, moods, or styles of coping), and social (such as our cultural backgrounds or income levels). What does this mean? In responding to chronic pain, we must take a comprehensive approach that addresses all of these components.

How should doctors tackle chronic pain? 

Here’s how I believe we should address chronic pain, given what we now understand. The first step is assessment. It begins with evaluating the location of the pain, how severe it is, how long it lasts—in other words, asking detailed questions about the nature of the pain itself. 

New techniques allow us to measure how the body responds to pain, which can help us decide how to manage it. Next is assessing the impacts of pain. This is new, and essential, given all we’ve learned about the social and psychological effects of pain. Any patient with chronic pain should be screened for depression and anxiety because they occur so frequently. 

The next step should be a treatment program that draws on many disciplines. An ideal program would include 

  • education about chronic pain, 
  • medication, 
  • physical therapy, 
  • alternative therapies, 
  • academic support for children, and
  • self-management techniques.

Self-management allows patients to minimize the impact of pain on their health and daily life.

Managing your own pain 

I want to focus on that last item: self-management. Self-management refers to a comprehensive set of psychological techniques that empowers patients to tackle their own pain. Self-management programs educate patients about chronic pain and teach strategies for managing pain symptoms, such as relaxation techniques.  These programs help patients think about pain in a different way, which reduces fear and panic about the pain. Patients say they feel less likely to go to the hospital for pain when they can think more rationally about it. Self-management programs also help patients resume activities they value—for instance, helping them to re-engage in physical activities. Sometimes they target a particular issue, such as sleep. Self-management is a comprehensive approach, considering patients’ lifestyles and emotional and social support needs, reminding patients they are not alone and that there are a lot of other people struggling with the same thing.

There is a strong research base—around 100 studies—on the effects of psychological therapies on chronic pain in adults, finding moderate improvements in patients’ disability, mood, and catastrophic thinking about their pain. My colleagues and I reviewed 43 randomized control trials of adolescents with chronic pain and found small to moderate benefits in reducing pain intensity, pain frequency, disability, and anxiety, showing that these therapies are helpful for people of all ages.

A limitation of the research base is its lack of published studies on pain interventions specifically for chronic pancreatitis. But there’s good news: two current studies are addressing chronic pancreatitis pain management.

Pain management on your computer or mobile phone

There is a severe shortage of interdisciplinary pain facilities, especially for children, with only about one facility per state. Waiting lists are long. Despite the urgent need, only about 5 percent of kids with chronic pain, and very few adults, get the psychological treatment we know could help their pain. 

Fortunately, technology offers a way for people to get psychological care without going to a psychologist by bringing pain care directly to patients. For 15 years, I’ve been working on technology to teach self-management techniques, recently focusing on chronic pancreatitis. I’ve helped launch two trials of web-based methods, one each for children and adults.

Pain management on your computer or mobile phone

There is a severe shortage of interdisciplinary pain facilities, especially for children, with only about one facility per state. Waiting lists are long. Despite the urgent need, only about 5 percent of kids with chronic pain, and very few adults, get the psychological treatment we know could help their pain. 

Fortunately, technology offers a way for people to get psychological care without going to a psychologist by bringing pain care directly to patients. For 15 years, I’ve been working on technology to teach self-management techniques, recently focusing on chronic pancreatitis. I’ve helped launch two trials of web-based methods, one each for children and adults.

The second program is for adults 18 and older with chronic pancreatitis. It has been adapted for pancreatitis patients from an Australian program, the Pain Course. The Pancreatic Pain Course has five lessons that teach self-management, as well as vignettes of real patients. The Mayo Clinic and Seattle Children’s Research Institute are evaluating it; their trial is also open for enrollment. (See box.)

Current trials of self-management technologies for pain in chronic pancreatitis

WEB-MAP
855-932-6272  

Enrollment criteria: 

  • Children between 10 to 17 years old
  • Suffering from chronic pancreatitis
  • Parent and child have access to the Internet

Pancreatic Pain Course
206-884-6312

Enrollment criteria: 

  • Older than 18 years old
  • Diagnosed with chronic pancreatitis and experiencing associated pain
  • Have access to a web-enabled device

***

Mission: Cure thanks Dr. Palermo for sharing her insights on managing chronic pain. We’re heartened by the growing interest in developing better treatments for pancreatitis pain and are working hard to persuade researchers and funders to devote resources to pancreatitis patients. Dr. Palermo can be reached at palermolab@seattlechildrens.org.

To watch Dr. Palermo’s webinar

CLICK HERE

EPI and Pancreatic Enzymes: Expert Doctor Answers Patient Questions

By Blog, Exocrine Pancreatic Insufficiency, Patient Resources
Photo of Dr. Steven Freedman of Beth Israel Deaconess Medical Center and Harvard Medical School

Dr. Steven Freedman of Beth Israel Deaconess Medical Center and Harvard Medical School

Dr. Steven Freedman, MD, Ph.D., a worldwide expert on pancreatic disease and cystic fibrosis, presented on Mission: Cure’s Pancreatitis Patient Webinar on Exocrine Pancreatic Insufficiency (EPI) and Pancreatic Enzyme Replacement Therapy (PERT). EPI is one of the symptoms of pancreatitis.

Pancreatic enzymes are a confusing but critically important part of chronic pancreatitis treatment. If you missed the webinar, you can watch it here:  We had so many questions during the webinar that we could not get to them all. Here, Dr. Freedman answers patients’ questions about EPI and pancreatic enzymes.

How do I take pancreatic enzymes for EPI? How many enzyme pills should I take?

Q. At what part of the meal or snack should I take my enzymes?

Dr. Freedman: The goal is to mimic the actions of a healthy pancreas and a healthy pancreas will release more enzymes with fat. Therefore, a person should consider how long it will take to eat a meal and what they are eating and take the appropriate enzymes. If the meal is taking longer than expected, need to take more enzymes to match enzymes with food.

Q. A question about pancreatic enzyme dosing: For an adult the dosing is 500u/kg/meal and 250u/kg/meal. Is dosing based on size of meal or amount of fat? Are these just ballpark doses?

Dr. Freedman: The FDA approval is based on body weight. However, the pancreas does not secrete based on a person’s weight but on the food that is ingested. A typical dose based on severity of EPI (may vary by patient)

  • Mild: 1-3 capsules (24,000)/meal and 1/snack
  • Moderate: 2-5 capsules/meal and 2/snack
  • Severe: 5-7 or up to 9 capsules/meal and 3-5/snack

A super-fatty meal might require 9-12 capsules. There is no magic formula and each person may be different. The amount of fat in a meal or snack affects the amount of enzyme needed.

Q. Does drinking a glass or so of water when eating a meal cause the enzymes to move through the stomach faster (wash the enzymes away before they can start working)?

Dr. Freedman: Actually, some fluid with enzymes is helpful as enzymes need some fluid to dissolve well. For example, an 8 oz glass of water with enzymes can be helpful.

  1. I make a protein drink with milk and 10,000 Creon and this makes me constipated. Why?

Dr. Freedman: If you are constipated after certain foods or drinks, it is usually due to your normal digestive state (for example, dairy causes constipation in some people). This is usually not due to the enzymes, as pancreatic enzymes do not cause constipation.

Q. Do the enzymes really expire after a few months or is that just a ploy by the pharmacy to get us to buy enzymes more often?

Dr. Freedman: Enzymes do have an expiration date since the enzymes need to be active. Usually, they are ok for a year.

Q. Can you break Creon apart to take throughout meal, or does it reduce effectiveness?

MC:  Creon capsules should not be crushed or broken apart as that will affect how they are digested and absorbed and interfere with the action on food.

Q. Do you need to take Creon with certain drinks like hot chocolate?

MC: Yes, if the hot chocolate is made with regular milk and chocolate which has fat. Enzymes are probably not needed if it is the “low fat, low sugar” kind of hot chocolate made with water.

Q. What about over-the-counter pancreatic enzymes?

Dr. Freedman: Over the counter pancreatic enzymes or digestive aids are unregulated and most are not active whatsoever. I have found none that are effective and believe these are a waste of money.

Q. Is there a vegan (non-animal based) pancreatic enzyme that you recommend?

Dr. Freedman: No. All enzymes today are from pig pancreas. There is currently research and development going on to create a non-pig formula.

EPI (exocrine pancreatic insufficiency) symptoms and causes

Q. Why did it take so long for my physician to finally diagnosis me with EPI?

Dr. Freedman: There are few people with expertise with EPI and PERT outside of cystic fibrosis as most other doctors have not had experience or training in this area. Dr. Freedman has published extensively to provide more information for clinicians and others on this subject. Many doctors don’t consider unless the patient presents with symptoms but often malabsorption has been going on for quite some time prior to obvious symptoms. Doctors should test and treat when there is any question of EPI such as low counts in the fat-soluble vitamins.

Q. What are some causes for EPI in a child without cystic fibrosis?

Dr. Freedman: There are a few other causes including chronic pancreatitis, celiac disease, a rare genetic disorder called Shwachman-Diamond Syndrome and occasionally, idiopathic EPI that, even though there is no known cause, is treated the same with enzymes.

Q. With hereditary chronic pancreatitis for 22 years, I have all of the EPI symptoms with a chronic low lipase levels of below 10 but my fecal elastase was only 180. How could that be?

Dr. Freedman: The pancreas does have plenty of reserve and is not until >90% of the pancreas is destroyed, that EPI will develop clinically.

EPI, pancreatic enzymes and diabetes

Q. What about patients with diabetes? Does Creon/PERT affect insulin for a diabetic?

Dr. Freedman: It is no accident that the endocrine and exocrine pancreas cross talk and that a person with diabetes can affect the exocrine function as insulin is needed to keep the acinar cells healthy to release enzymes and EPI can affect the release of insulin. There is a big effect on a patient if they are diabetic and have EPI and do not take enough enzymes. Without sufficient enzymes, there is malabsorption and not enough nutrients, including glucose will be taken up. This affects the amount of insulin required. If the patient then starts taking PERT or more PERT, they will be getting more glucose and their insulin requirements will be higher. A person with diabetes needs to carefully monitor their blood sugar when starting to take PERT.

Pancreatic enzymes and the gallbladder

Q. I no longer have a gallbladder. How does that affect my digestion? (My pancreas has been resected and I have already been diagnosed and treated for EPI.)

Dr. Freedman: This may result in bile salt malabsorption, which affects how well fats are broken up and digested. In some patients, persistent oily diarrhea may develop from bile salt malabsorption, and is treated with a bile binding drug (cholestyramine, Welchol, etc).

Chronic pancreatitis pain treatment

Q. You said on the webinar that Viokace is the only enzyme shown to improve pain because it is uncoated. Should I ask my doctor to switch to Viokace?

Dr. Freedman: For treating exocrine pancreatic insufficiency, there is no need to change. For the treatment of pain, especially if the pain is not responding to Zenpep or Creon or another enzyme, then you could ask your physician to switch to Viokace with an acid blocker to see if it helps.

I can’t afford pancreatic enzymes

Q. My co-pay for Creon with insurance is over $400. My income is a bit too high for assistance. Any ideas on how to get it at a lower cost?

Dr. Freedman: This is an issue for some patients as enzymes are expensive. Most of the manufacturers of pancreatic enzymes have assistance programs. You should check with them. Also, check with your physician to get help with these assistance programs and/or to try to get authorization from your insurance company.

Do I need pancreatic enzyme replacement therapy, or PERT?

Q. I have been diagnosed with chronic pancreatitis. I have/had no symptoms of EPI. 1st fecal elastase was 70.  Put on Creon for EPI and to alleviate pain.  On Creon for ~ 1 month, retest of fecal elastase was >250.  7 small meals/snacks day, one 12,000 unit Creon with each.  Want to go off Creon for 2 weeks and retest fecal elastase.  Not sure I need it at all.

Dr. Freedman: Creon will not interfere with the fecal elastase test. Given a normal value of >250, it is not unreasonable to retest.

Q. What is risk of starting PERT too soon? I have low fecal elastase but my doctor said I don’t need to start PERT because I have no symptoms.

Dr. Freedman: There is no value to starting PERT prior to a diagnosis of EPI but there are no risks of taking PERT. PERT has no side effects but they will not be absorbed and no data that supports that taking PERT will slow down the progression of the disease. In some patients with frequent recurrent acute pancreatitis attacks quick release PERT may help.

Q. I have Crohn’s of the jejunum and a partial pancreatic divisum. I am low in Vitamin A and D but I don’t know about the other vitamins. Do I need to take pancreatic enzymes?

Dr. Freedman: You should have your physician check a fecal elastase test and that would determine if you need pancreatic enzyme replacement therapy.

Q. I have chronic pancreatitis and my MRI shows atrophy. Does taking enzymes help slow down the atrophy process?

Dr. Freedman: Probably not based on studies in animal models of pancreatic disease. We would like enzymes to slow down the process of atrophy but instead we need to target the underlying chronic pancreatitis to minimize inflammation and scarring to minimize the atrophy process.

TPIAT and pancreatic enzymes

Q. If I get pancreatic surgery, do I automatically need a PERT?

MC: If you have a total pancreatectomy you will need PERT as you will no longer have a pancreas to produce enzymes and will need to take PERT.

Q. I had the TPIAT (Total Pancreatectomy with Islet Auto-Transplantation) 17 months ago. I take Creon as I had prior to my pancreatectomy. I need an NJ feeding tube. Will I need to take enzymes still?

Dr. Freedman: After a pancreatectomy you will need to take enzymes as you no longer have a pancreas to provide these enzymes. There is a product called RELiZORB that provides enzymes in a cartridge designed to work with enteral feeding.

Q. What enzyme do you suggest for a young adult who has had a TPAIT and still has pain?

Dr. Freedman: This is a complicated issue since TPIAT should have relieved your pain from chronic pancreatitis. Thus, other causes of your pain should be explored.

Genetic Testing for Pancreatitis: What We Know Now

By Blog, Genetics, Patient Resources, Topics
Mark Haupt

Dr. Mark Haupt, MD is the Chief Medical Officer of Ariel Precision Medicine, a company that provides digital health and genomics solutions for complex disorders, like pancreatitis. Dr. Haupt is a Pediatric Pulmonologist who has dedicated his career to helping patients with pancreatic disease through his work in academia, the pharmaceutical industry, and his current work with Ariel.

As a researcher and clinician, I’m incredibly excited by advances in our understanding of pancreatitis and their potential to help pancreatitis patients. Pancreatitis patients suffer terrible pain, along with other symptoms, and are often frustrated at the lack of effective treatments. But today, thanks to advances in genomics (the study of genes and their function), we’re on a path toward developing those treatments. Mission: Cure is expediting these new discoveries and jumpstarting progress toward treatments—and eventually cures—for pancreatitis.

The role of genetics in pancreatitis

The ‘traditional’ approach to medicine does not adequately characterize the complex nature of pancreatitis or permit the identification and development of suitable therapies. Patients are often wrongly blamed for their own suffering. As a medical community, we often focus too much, or solely, on the role of alcohol in pancreatitis, a role we now know has been tragically overstated. This bias results in pancreatitis patients being offered few treatment options and little hope.

But today, there is good reason for hope. Science is unraveling the mysteries of pancreatitis. We now understand that multiple factors in different combinations are involved in its cause and progression. We’ve made leaps in identifying those factors—especially the genetic factors. The dramatic increase in  genetic testing is a part of that advancement. More conditions are being evaluated by genetic testing, more patients are being tested, and more genes are being investigated. It is hard to overstate the importance of these advances.

Today we know that genetic variants (changes in the DNA, also known as mutations) cause or contribute to many cases of pancreatitis. Even in the cases where alcohol does play a role, genetic factors appear to predispose patients to the disease or accelerate the progression of the disease. We have identified multiple genes and variants involved and understand that some genes cause pancreatitis, while others affect how the disease progresses. Below is a list highlights some of the genes that researchers have found to cause or contribute to the progression of pancreatitis.

Pancreatic disease causing and disease modifying genesAs more people get genetic testing, we are increasing our knowledge about the specific genetic variants and other factors that cause pancreatitis and the biological mechanisms that underlie the disease. This means that we will soon be able to predict individual patients’ disease progression and outcomes. We will be able to better tailor treatments to each patient’s needs, linking the right treatment(s) to the right people. Over the long term, we will finally be able to move beyond treating symptoms; we hope to intervene earlier and slow or prevent the progression of pancreatitis.

Practical considerations of genetic testing for pancreatitis

If you’re a pancreatitis patient, you may have questions about genetic testing.

Who should consider genetic testing?

Genetics and Pancreatic DiseasesCurrent guidelines suggest testing for certain subgroups of pancreatic patients, such as unexplained recurrent acute or chronic pancreatitis, a family history of pancreatitis, or an early onset of pancreatitis. The bottom line is, in any case in which the cause is unclear, even if there is a history of excessive alcohol consumption, genetic testing can be useful. We also know that genetic causes of pancreatitis are quite common in children.

The question of insurance coverage is also raised. Coverage depends on the plan. But, recognizing the importance of this information, insurance companies are increasingly covering testing. If you have specific questions about coverage, talk with the genetic testing company or your insurance provider. In many cases, the testing company has resources to help navigate this process.

What kind of testing should I get?

There is a wide variation in the pancreatitis testing panels offered by different companies.  At Ariel, we evaluate 13 different genes related to pancreatitis, and also look at genes related to fat and cholesterol metabolism if indicated. We also evaluate genes related to how your body processes medications, called pharmacogenomics. Some other labs evaluate 4 or 5 genes, or only look for very specific variants, and may or may not include the cholesterol genes and the pharmacogenomics.  That’s why it’s crucial to talk to your provider about your specific situation. Your doctor, and sometimes a genetic counselor, can help decide what to test and what company to use. They can explain the risks and benefits of testing and what types of results may be returned. Understanding all of this before testing is important. If a genetic counselor is not available at your hospital or clinic, some genetic testing companies provide access to genetic counseling services. There are also many telemedicine services that provide genetic counseling, before selecting a testing company and/or after test results are available. These services are often covered by insurance. You can find more information about genetic counselors and find a genetic counselor

What will testing tell me? How will it help?

Genetic testing will identify if you have any changes in your genes that might cause pancreatitis or result in faster disease progression, giving you and your practitioner vital information: the type of disease you have, whether you have disease-modifying genes, and how your disease might progress without treatment. This information can also help determine whether any of your family members that may also be at risk. Lastly, genetic testing may help identify other tests that may be recommended such as screening for diabetes, cystic fibrosis or pancreatic cancer. In the near future, we also hope that genetic testing will help identify what medications might help you based on what genetic variant you have, similar to what happens in cystic fibrosis.

Looking ahead

We’re on the cusp of even more progress. Researchers are using this new genetic knowledge to identify possible treatments to slow or even stop the progression of pancreatitis. In the meantime, it’s important to educate clinicians about these new developments. Many doctors remain unaware of all but the most common genetic causes of pancreatitis and of the availability and usefulness of genetic testing. We need your help to get the message out. Patients can drive progress in treating pancreatitis by educating their providers.

Our goal is to use our ever-increasing knowledge to deliver precision medicine: personalized treatment specific to each patient’s form of pancreatitis, as revealed by genetic testing.

We look forward to continuing our partnership with Mission: Cure to make this new vision a reality and to finally bring effective therapies to pancreatitis patients.

Dr. Asjbørn Mohr Drewes, MD, PhD

New Guidelines for Managing the Pain of Chronic Pancreatitis

By Blog, Pain Management, Patient Resources, Topics
Dr. Asjbørn Mohr Drewes, MD, PhD

Dr. Asbjørn Mohr Drewes, MD, PhD, is a widely-recognized expert in gastroenterology and pain, especially in diseases of the pancreas and oesophagus. Acting as both a clinician and researcher, he has authored 507 peer-reviewed articles, book chapters, and reviews, and is a frequent speaker at international conferences. He is currently the Director of Mech-Sense and Center for Pancreatic Diseases at the Aalborg University Hospital in Aalborg, Denmark.

Chronic pancreatitis (CP) is a poorly understood disease, to the immense frustration of patients, clinicians, and researchers. There is good news: consensus guidelines on chronic pancreatitis pain have been developed by an international team of experts. The task now is to make clinicians and patients aware of them.

The challenge of managing chronic pancreatitis pain

Abdominal pain is the most prevalent symptom of chronic pancreatitis, yet chronic pain is notoriously difficult to assess and treat. Doctors must often rely on patients’ descriptions of their pain, but they tend to distrust these reports. Doctors, and sometimes family and community members, may dismiss patients’ complaints of chronic pain as exaggerated, or view the patients as overly sensitive.

When chronic pain comes from pancreatitis, additional factors come into play. Very often, the cause of the pain isn’t clear, making it hard for clinicians to address it. Sometimes, the reasons for pain are found outside of the pancreas (such as a peptic ulcer), which can be easier to treat once identified. Adding to identification and treatment complexity is that some patients have multiple sources of pain that can flare up at the same time or at different times. Read More

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