Introduction

Gastroparesis, also called delayed gastric emptying, is a chronic digestive condition where the stomach fails to properly empty, causing sometimes debilitating symptoms, including nausea, vomiting, pain, and distention/bloating, which persist or reoccur long-term. It can significantly interfere with the daily living and quality of life of those affected. While the incidence and prevalence of gastroparesis are not well-defined, it is estimated to affect up to 5 million people in the United States alone . Gastroparesis remains a little known and poorly understood condition which can lead to confusion and misunderstanding among patients and healthcare providers alike and prevent patients from obtaining an accurate diagnosis as well as proper and effective treatment. Knowing where to find scientifically accurate information is an important part of the journey. According to a 2017 survey of 1423 adults with gastroparesis, while patients felt that they receive good information from their physician (50% of patients), they also turned to other sources such as the Internet (46%), Facebook (34%), specialty sites (27%), International Foundation for Gastrointestinal Disorders (IFFGD) website (25%), nurse practitioners (10%), physician assistants (8%), governmental agencies such as National Institutes of Health (NIH) or the Federal Drug Administration (FDA) (7%), other patient organizations such as Gastroparesis Patient Association for Cures and Treatments, Inc. (G-PACT) or Association of Gastrointestinal Motility Disorders, Inc. (AGMD) (29%), blogs (17%), and/or WebMD (12%) . Therefore, it is important for patients to understand how to locate physicians who are trained in diagnosing gastroparesis and have access to fully equipped motility centers. With the increasing use of non-traditional online resources such as the Internet and social media, it is necessary to aide patients in finding credible information among the vast resources available online. In this chapter, we will cover the many different resources available to patients as well as provide insight into the resources currently used by the gastroparesis community.

The GP-POR survey

Before beginning to explore the available resources for patients with gastroparesis, the authors of this chapter aimed to discover what resources are currently being used and considered valuable by the gastroparesis community. During Gastroparesis Awareness Month in August 2019, a survey was created to better understand these resources and was distributed by the International Foundation for Gastrointestinal Disorders (IFFGD) and Gastroparesis Patient Association for Cures and Treatments, Inc. (G-PACT) via email and social media channels. It was named the Gastroparesis Patient Opinion about Resources (GP-POR). During the five weeks the survey was open for data collection, 133 responses were received. This is a very small sample size and, therefore, the contents of this chapter will mention resources and their use by this patient population but will also be derived from interviews with patients as well as other documented sources.

The GP-POR, which contained one hundred questions, inquired about the use of the following resources: social media, websites, support groups, phone-based applications (apps), printed handouts, phone hotlines and books. Each of these resources was then broken into smaller categories and respondents were asked questions regarding the specific resources they have used and whether they were helpful or not helpful. Further, we asked the reason for each type of resource used. None of the questions were mandatory and, therefore, respondents were given the option to skip any section they did not feel was relevant to them. The survey was broken into two sections. The first section asked for information in a less detailed format (open ended questions), while the second section required more detailed responses concerning the nature of the resource being used and why the patient chose that resource. Respondents had the opportunity to opt out of completing the second section of the survey. Of the 133 people who started the survey, 48 continued to the second section.

What is important in a resource?

Accuracy of information was the highest priority for patients when looking for a resource, with 40% of responders indicating that the resource should be trusted, reliable and/or accurate. Other items of importance to patients included: resources that provide current or up-to-date information (17%), are evidence-based, without commercial bias (13%), are easy to understand (13%) and are solution-based instead of theoretical (13%).

How are resources being used by patients?

The first several questions in the GP-POR asked responders to select which types of resources they found most helpful for different categories within the gastroparesis community: patients, their support system (family, friends, caregivers, etc.) and the newly diagnosed patient. They were to mark all the following that applied: social media, websites, support groups, phone-based apps, printed handouts, phone hotlines and books. When asked about resources helpful to themselves as patients, they responded with social media (75.4%), websites (70.5%), online support groups (59%), books (32.8%), in-person support groups (8.2%), phone-based applications (8.2%) and patient hotlines (1.6%). When asked about resources helpful to their support system (family, friends, caregivers, etc.), they responded with websites (50.8%), social media (39.3%), printed brochures (21.3%), books (13.1%), online support groups (11.5%), in-person support groups (4.9%), phone-based applications (1.6%) and patient hotlines (1.6%). When asked about resources they would recommend to a newly diagnosed patient, they responded with websites (70.5%), online support groups (60.7%), social media (47.5%), books (37.7%), in-person support groups (32.8%), printed brochures (32.8%), phone-based applications (21.3%) and patient hotlines (19.7%).

Resources used to learn about research

When asked “What are some of the ways that you stay up to date about any research advancements for your disorder?”, most responders indicated a use of several resources, one citing a desire for more research journals and databases with open access. A study by Funk, et al. found that 57% of Americans are more likely to trust research when the data is made publicly available . Nonetheless, the most mentioned resource for research were Internet searches (51%), with only six responders naming specific websites. Social media was the next most mentioned resource, with 28% of responders relying on this platform. Of those, 67% use Facebook, with 40% of those mentioning they rely on support groups specifically. Only 21% of participants expressed that they look to their physicians for information on research advancements. Of note, 9% listed that they either gather this information from knowledgeable friends and other patients with gastroparesis, rely on medical journals and articles, or rely on emails and newsletters from patient organizations, naming specifically IFFGD, AGMD, and the Oley Foundation.

Resources for daily living and life skills

When diagnosed with a chronic illness like gastroparesis, learning to navigate life can be challenging. In the Gastroparesis Patient Opinion about Resources (GP-POR) survey, the gastroparesis community indicated a use of social media support groups as the answer to multiple questions. In open ended questions, they regarded interactions with others who understand their illness as very significant to them. This is particularly important for patients struggling to explain daily life issues to those outside the gastroparesis community. Explaining a chronic illness, especially a complicated illness like gastroparesis to someone who is healthy, can be difficult. Patients often feel misunderstood and unincluded in the social aspects of daily life; they can become isolated from friends and family. Social media has made a great impact on the chronic illness community because it has opened the world to those who have struggled or continue to struggle with chronic illness by giving them new and attainable ways of interacting.

One development that has contributed to this is the rise of online support groups. There is now an abundance of support groups across social media and the Internet, and responders noted that it is important to find a group that best meets their needs. Not all groups are equivalent; they are most often either advice-based, support-based or primarily focused on sharing encouraging or humorous posts throughout the day to uplift the community. Once patients find the right community for themselves, they generally experience benefits from participating in that group.

Based on the answers presented in the GP-POR, support and interaction (whether through social media, patient blogs, or support from friends/family) are equally important as resources. As a result of the isolation that often accompanies chronic illness, many patients are restricted to home more often than they prefer, and knowing they are not alone is a recurring theme in how to help improve their daily lives. Books, websites and blogs were mentioned frequently as useful resources, and sharing personal stories via social media, either for awareness or to help others, was viewed as important to the gastroparesis community. Using these platforms, patients can connect with others and find resources that would have been otherwise unavailable if not shared on a social media page, website or blog.

Another resource mentioned frequently was phone-based applications (apps) used to track food intake and appointments and/or medications, or to record daily diary entries. When first diagnosed, many use trial and error to find which foods work and which do not. Use of apps allows patients to keep track of food and drinks consumed and any symptoms that follow. This process is vital in determining foods that trigger or worsen harmful gastroparesis-related symptoms and is a convenient way to keep track of this information to share with healthcare providers. Some of these apps also permit groups to join, providing additional opportunities to connect with those who understand the illness experience. Responders likewise mentioned the use of planners and medicine organizers as being beneficial.

Each of these resources, whether found through social media, online or in person can be helpful in managing and/or balancing life with a chronic illness. Connecting with others, as well as finding ways to connect with the rest of the world, are both important for patients with gastroparesis.

Social media as a resource

Merriam-Webster defines social media as “forms of electronic communication (such as websites for social networking and microblogging) through which users create online communities to share information, ideas, personal messages, and other content (such as videos)” . Published in their “The Global State of Digital in 2019 Report”, Hootsuite, a social media management platform, reported that out of 7.676 billion people worldwide, 3.484 billion are active social media users. While this worldwide statistic shows only 45% of the population on social media, the report revealed that 70% of people in the United States, 53% of Western Europe and 70% of Eastern Asia are on social media. This is a significant difference from Africa, showing regions with as little as 7–8% . Regardless, it is well accepted that social media is a tool used by many for a variety of reasons, including social networking (Facebook, MySpace, Google Plus, Twitter), professional networking (LinkedIn), media sharing (YouTube, Flickr), blogs (Tumblr, Blogger), microblogs (Twitter), knowledge/information aggregation (Wikipedia) and virtual reality and gaming environments (Second Life) .

A systematic review by Smailhodzic et al. found that most patients do not use social media as a replacement for going to the doctor, but for additional medical education and peer support. This review highlighted that many patients report mistrust in their doctor’s knowledge of up-to-date information as well as dissatisfaction in their doctor’s ability to meet their emotional needs . In the Gastroparesis Patient Opinion about Resources (GP-POR), when asked about social media used as a resource, thirty-seven respondents indicated they use social media, while six indicated they do not. Of the thirty-seven who use social media, thirty-four use Facebook, seven use Twitter, eight use Instagram and two use LinkedIn. Other social media channels mentioned by patients with gastroparesis are YouTube and Pinterest.

In the GP-POR, Facebook was the most used social media platform (92% of respondents). Patients surveyed indicated that they found value in this platform, with only 6% responding “No” when asked if they found the Facebook pages they have visited helpful. The most common Facebook pages used by the group were Gastroparesis Patient Association for Cures and Treatments, Inc. (@GPACT), International Foundation for Gastrointestinal Disorders (@IFFGD) and Gastroparesis: Fighting for Change (@GastroparesisFighting4Change). Patients most commonly used Facebook to find the latest up-to-date information (90.9% of respondents), but also used Facebook to learn more about gastroparesis (69.7%) and to find emotional support/advice (75.8%).

Fewer patients surveyed in the GP-POR reported using Twitter (19%) or Instagram (22%). Those using Twitter found it helpful to them in their patient journey with gastroparesis, citing the most value in using it to find the latest up-to-date information on their illness. On Instagram, patients found the most value in obtaining emotional support and/or advice (71% of those using Instagram), although only five of the seven Instagram users responded that they found the social media platform helpful to them at all. The most common Instagram accounts followed by the respondents were Gastroparesis: Fighting for Change (@GastroparesisFighting4Change), International Foundation for Gastrointestinal Disorders (@digestivehealthmatters) and Gastroparesis Patient Association for Cures and Treatments, Inc. (@4gpact).

Patients with gastroparesis note the positives of social media as it being a resource to find information on their illness, learn about the latest research and discover others like them for emotional support and/or advice. But there is a downside as well, as some users find false information, disapproval and/or stressful drama in the social networks they encounter. In these circumstances, patients express a need to remove themselves from these environments and continue looking for a group or account that best meets their needs. When deciding to use social media as a patient, one must be prepared for the negatives and look for credible accounts to follow and/or join. The Association for Healthcare Social Media (AHSM.org) is a newly formed non-profit whose mission is to positively influence public health and health care through social media. This organization is working to standardize best practices among physicians and other healthcare users of social media and will offer patient information on evaluating and assessing medical literature on social media. Patients should use caution when using social media and research the organizations they follow to ensure they are providing scientifically based content. These platforms can provide encouragement along the patient journey if properly utilized, but patients should perhaps steer away from groups/users who make them uncomfortable or are discouraging.

Online resources for gastroparesis

There were an estimated 1,518,207,412 websites in the world in January 2019 . This number increases daily, and as information becomes increasingly available online, more and more people are turning to the Internet for answers to their health questions. The Pew Research Center’s Internet & American Life Project revealed that up to 35% of adults in the United States have used online resources to research a medical condition. Of those, 72% reported they researched health information of any kind .

In the Gastroparesis Patient Opinion about Resources survey (GP-POR), when asked about website use as a resource, twenty-six respondents indicated they used websites and eight indicated they did not. We then asked about specific use of Internet resources based on the categories of non-profit organizations, for-profit companies, pharmaceutical companies, physician or hospital groups, governmental agencies and insurance companies.

When asked about using non-profit websites as a resource (websites ending in “.org” such as iffgd.org, g-pact.org, and agmdhope.org), twenty-six indicated they did so and eight indicated they did not. Websites mentioned most often as a resource for patients were g-pact.org (54%), iffgd.org (42%), oley.org (15%) and rarediseases.org (12%). When asked about using for-profit patient education websites as a resource (websites ending in “.com” such as WebMD.com, Healthline.com or Medscape.com), nineteen indicated they did so and fourteen indicated they did not. WebMD.com was mentioned most frequently by responders (ten people) as a for-profit website they have used.

When asked about use of websites from pharmaceutical companies as a resource, only 15% indicated they have done so. Most patients surveyed have not (84%). When asked about the use of an insurance company website as a resource, all responders indicated they have not. There was a 50/50 response to the use of physician/hospital websites with mayoclinic.org (59%), clevelandclinic.org (47%), and standfordhealthcare.org (18%) used most often. Most patients did not use governmental websites as a resource, as only 9% indicated they have ever used one. The most mentioned governmental resource used by patients in the GP-POR was NIH.gov. In our conversations with patients, some also noted that they consult the FDA website ( www.fda.gov ) for information regarding drug and device recalls and for details surrounding programs such as Expanded Access and the Humanitarian Device Exemption Program (mainly as these apply to Domperidone and the Gastric Electrical Stimulator).

Other websites mentioned by patients as helpful resources were themighty.com, curegp.org, and livingwithgastroparesis.com. They also mentioned visiting youtube.com and using Google to search for information. Many indicated a need for more information on the websites they have visited, especially regarding daily living with the disease.

Finding a website as a resource

When searching for healthcare information online, it is important for patients to look carefully into the websites they are using. One of the most common signs of reliability is a website ending in. edu, org, or. gov. These endings identify educational institutions, non and not-for-profit organizations, and government agencies, respectively. Most reliable and well-funded scientific information is found on websites that have minimal to no advertising .

When looking into a website, patients should locate who runs and/or created the site to begin investigating whether that source can be trusted. If the claims and resources presented on the site seem “too good to be true,” then they likely are, and the information presented may not be entirely factual. Checking for dates indicating when the website was last updated is also very important in finding accurate up-to-date health information. Research, medications, treatments, and general health information is rapidly changing and updating as new technologies become available. It is also important to look for citations for the information being presented. Patients should be aware that an accurate health website will have facts backed by scientific research and studies. If the main purpose of a website appears to be commercial (selling something), that is a red flag that the information provided may be presented in a way that draws readers towards a specific product or service, and not unbiased health information .

There are many certification organizations to help users navigate credible sites. One of the most common is GuideStar.org, an organization dedicated to investigating and organizing information about U.S. nonprofits. CharityWatch.org and CharityNavigator.org are two organizations that evaluate charity organizations for accountability, efficiency, transparency and other factors.

As the Internet continues to grow as a source for health information, it is important for users to differentiate credible sources among the websites they reach. The websites discussed in this section are ones found to be commonly used by the gastroparesis community. Many other sources are currently available and will be created as further advancements are made in the field. Consider the points and website examples listed in this chapter when looking into other web sources available.

Books as a resource

Books are one popular resource used to help with management of gastroparesis. In the GP-POR, of those who responded to the question, “Have you ever read a book to learn more and/or find support for gastroparesis?”, 54% selected that they have used books. Of the patients who have utilized books as a resource, all responders indicated they were useful. Of those, the most used books were cookbooks, with 61% indicating usage. Two other highly utilized categories included medical books intended for the public and self-help books, with an equal response of 50% each. Inspirational books were the fourth most popular type of book mentioned, with 33% of respondents indicating the use of that genre. Medical textbooks intended for the medical community followed as the fifth resource (28%); however, responders commented that medical textbooks are typically too expensive for the general population to purchase.

When asked to indicate which specific books were helpful, results included:

• •
  

  Living (Well!) with Gastroparesis: Answers, Advice, Tips & Recipes for a Healthier, Happier Life by Crystal Zaborowski Saltrelli, CHC

  
  
• •
  

  Eating for Gastroparesis: Guidelines, Tips & Recipes by Crystal Zaborowski Saltrelli, CHC

  
  
• •
  

  The Gastroparesis Cookbook: 102 Delicious, Nutritious Recipes for Gastroparesis Relief by Karen Frazier, Colleen Beener (Foreword), G-PACT Operations Director

Additional books included:

• •
  

  How to Live Well with Chronic Pain and Illness: A Mindful Guide by Toni Bernhard

  
  
• •
  

  Gastroparesis: A Roadmap for your Journey by Chelsey M. McIntyre, PharmD

  
  
• •
  

  The Gastroparesis Healing Diet: A Guided Program for Promoting Gastric Relief, Reducing Symptoms and Feeling Great by Tammy Chang

  
  
• •
  

  Wisdom by Nature: The New Approach to Healing Gastroparesis and Digestive Challenges by Chalyce Macoskey and Stephanie Torres

  
  
• •
  

  Real Life Diaries: Living with Gastroparesis by Lynda Cheldelin Fell and Melissa Adams VanHouten

  
  
• •
  

  Nausea and Vomiting: Diagnosis and Treatment by Kenneth L. Koch (Editor), William L. Hasler (Editor)

  
  
• •
  

  The Patient’s Playbook: Find the “No-Mistake Zone” by Leslie D. Michelson

  
  
• •
  

  Explain Pain by David Butler and Lorimer Moseley

  
  
• •
  

  That Good Night: Life and Medicine in the Eleventh Hour by Sunita Puri

Responders elaborated on the benefit of books over websites as being the ease of flipping open to important pages that have been marked for reference. Books also provide another opportunity to understand the personal experiences of others, afford additional dietary and lifestyle tips and offer suggestions from experienced patients.

Additional book recommendations include:

Cookbooks/Diet:

• •
  

  The Gastroparesis Gourmet by G-PACT

  
  
• •
  

  The Tender Tummy Cookbook by G-PACT

  
  
• •
  

  Fruit Infused Water: 98 Delicious Recipes for Your Fruit Infuser Water Pitcher by Susan Marque, Rockridge Press

Medical Self-Help (Disease Specific):

• •
  

  Living Well with Mitochondrial Disease: A Handbook for Patients, Parents, and Families by Cristy Balcells

Medical by Practitioners:

• •
  

  Every Patient Tells a Story: Medical Mysteries and the Art of Diagnosis by Lisa Sanders

Memoirs/Autobiographies:

• •
  

  Being Mortal: Medicine and What Matters in the End by Atul Gawande Ask Me Why I Hurt: The Kids Nobody Wants and the Doctor Who Heals Them by Randy Christensen, Rene Denfeld

  
  
• •
  

  When Breath Becomes Air by Paul Kalanithi

  
  
• •
  

  Brain on Fire: My Month of Madness by Susannah Cahalan

  
  
• •
  

  Ghost Boy: My Miraculous Escape from a Life Locked Inside My Own Body by Martin Pistorius and Megan Lloyd Davies

  
  
• •
  

  Front of the Class: How Tourette Syndrome Made Me the Teacher I Never Had by Brad Cohen

  
  
• •
  

  Tuesdays with Morrie by Mitch Albom

Other:

• •
  

  Fiction (Inspirational/Based on true story): Still Alice by Lisa Genova

  
  
• •
  

  Inside the O’Briens by Lisa Genova

  
  
• •
  

  Every Note Played by Lisa Genova

Handouts/brochures as a resource

In the Gastroparesis Patient Opinion about Resources (GP-POR), patients were asked if they had ever used patient education handouts or brochures to learn more and/or find support for gastroparesis. Sixteen patients responded to the question and 62% found them to be useful. Distribution source of the handouts varied, with 65% of responders obtaining them through a physician or other medical professional, 29% locating them online, and 12% finding them in a waiting room or other location.

Handouts were not noted to be as helpful as other resources; however, they were described as most helpful after initial diagnosis, when sharing information with friends or family, and when they provided ways to access additional resources. For handouts to be truly beneficial to patients, resources need to be recent, provide important disease information, treatment options, and contain additional resources.

Using a physician as a resource

While patient-to-patient relationships seem to be one of the most important resources, GP-POR responders also find a relationship with medical professionals as an essential resource. Members of the gastroparesis community frequently turn to physicians for information on their disease. Doctors also help patients make informed decisions regarding their care, often being the main resource for information on medications; therefore, it is very important for patients to choose a reputable gastroenterologist for their care . There are many things to consider when searching for a medical specialist. In general, patients should always take the following into consideration :

• •
  

  Look for board certification (All gastroenterologists should be certified through the American Board of Medical Specialties with a specialty of Internal Medicine and a subspecialty of Gastroenterology. You can check whether a physician is board certified at certificationmatters.org.)

  
  
• •
  

  Is this physician trustworthy? (Ask the people you trust and/or research the physician on the Internet.)

  
  
• •
  

  Is this physician in your insurance network? (Check with your insurance carrier to be sure.)

  
  
• •
  

  Is the gender and/or age of the physician important to you as a patient?

  
  
• •
  

  Are the office hours of the physician compatible with your lifestyle and needs?

When searching for a physician who specializes in a rare disease such as gastroparesis, the Genetic and Rare Diseases Information Center (GARD), a program of the National Center for Advancing Translational Sciences (NCATS), advises patients to look for healthcare professionals who have recently published material concerning gastroparesis on well-respected websites, such as NORD (rarediseases.org), IFFGD (iffgd.org), AGMD ( www.agmdhope.org ), and G-PACT (g-pact.org) or in peer-reviewed medical journals . Patients can find published journal articles on PubMed, a free search engine maintained by the United States National Library of Medicine at the National Institutes of Health (ncbi.nlm.nih.gov/pubmed) . When searching PubMed, patients should ensure they are looking at recently published work as well as articles published in well-respected peer-reviewed journals. There are several ways Journals are ranked; however, the easiest for patients to quickly reference is the SCImago Journal Rank (SJR) found at www.scimagojr.com and selecting Journal Rankings for Gastroenterology .

If participating in research trials for gastroparesis is important, patients can find research testing sites by searching on clinicaltrials.gov or on iffgd.org. Both list ongoing research studies in the area of gastroparesis . The National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) sponsors a Gastroparesis Clinical Research Consortium (GpCRC) which focuses on the etiology, natural history, and therapy of gastroparesis. This research consortium has a listing of medical centers and physicians involved in its research available on their website (jhuccs1.us/gpcrc) .

Finding a physician or other healthcare provider who is knowledgeable about a motility disorder such as gastroparesis may seem overwhelming to some; yet, it is essential to find providers who understand the intricacies and complexities of gastroparesis and are experienced in proper patient diagnosis, treatment, and care. General physicians and gastroenterologists can help provide motility specialist referrals. In addition, it should be noted that the names, locations and contact information for all authors in this publication are provided at the end of the book. Patients can also find lists of healthcare providers through several physician groups and societies who provide their membership lists on their websites. The International Foundation for Gastrointestinal Disorders maintains a listing of these resources on their website ( https://www.iffgd.org/manage-your-health/finding-a-doctor.html ) :

• •
  

  Finding a Gastroenterologist – Compiled and maintained by American College of Gastroenterology (ACG) – (gi.org/patients/find-a-gastroenterologist)

  
  
• •
  

  AGA GI Locator Service – Compiled and maintained by American Gastroenterological Association (AGA) – (mygi.health/find-a-specialist)

  
  
• •
  

  A Registry of GI Motility Laboratories for Patient Evaluation – Compiled and maintained by The American Neurogastroenterology and Motility Society (ANMS) – (motilitysociety.org/wp-content/uploads/2016/11/current_registry.pdf)

  
  
• •
  

  Doctors Interested in Motility Disorders – Compiled and maintained by Gastroparesis Patient Association for Cures and Treatments, Inc. (G-PACT) – (g-pact.org/doctors-for-gpact)

  
  
• •
  

  Finding a Surgeon – Compiled and maintained by American College of Surgeons (ACS) – (facs.org/search/find-a-surgeon)

  
  
• •
  

  Finding a Pediatric Gastroenterologist – Compiled and maintained by the North American Society for Pediatric Gastroenterology, Hepatology and Nutrition (NASPGHAN) – (members.naspghan.org/NASPGHANMembers/Find_a_Pediatric.aspx)

  
  
• •
  

  Finding a Dietitian – Compiled and maintained by the International Foundation for Gastrointestinal Disorders (IFFGD) – (iffgd.org/resources/dietitian-listing.html)

  
  
• •
  

  Finding a Psychologist who specializes in Gastroenterology- Compiled and Maintained by The Rome Foundation PsychoGastroenterology Group – ( https://romegipsych.org )

The Association of Gastrointestinal Motility Disorders, Inc. (AGMD) also maintains several helpful resource lists in this area:

• •
  

  List of Digestive Neurogastroenterology and Motility Experts (by State) – Compiled and maintained by Association of Gastrointestinal and Motility Disorders, Inc. (AGMD) – ( https://www.agmdhope.org/locate-a-physician/ )

  
  
• •
  

  List of Neurogastroenterology & Motility Centers/Clinics/Programs – Compiled and maintained by Association of Gastrointestinal Motility Disorders, Inc. (AGMD) – ( https://www.agmdhope.org/neurogastroenterology-and-motility-centers/ )

  
  
• •
  

  List of Digestive Motility Disorders Dietitians – Compiled and maintained by Association of Gastrointestinal Motility Disorders, Inc. (AGMD) – ( https://www.agmdhope.org/dietitians/ )

  
  
• •
  

  List of Motility Disorders-Related Specialists – Compiled and maintained by Association of Gastrointestinal Motility Disorders, Inc. (AGMD) – ( https://www.agmdhope.org/locate-specialists/ )

Resources used to prepare for a doctor’s appointment

We asked the following: “What resource(s) do you use to prepare for a doctor’s visit?”, in an open-ended question in the Gastroparesis Patient Opinion about Resources (GP-POR). Almost 10% of responders indicated that they do not use any resources, stating that they do not feel doctors are open to outside resources and/or that they have lived with gastroparesis long enough that they do not feel it is necessary. Of those who entered resources used, the Internet is the most mentioned, with 39% of responders listing Internet searches and specific websites. Specific web sources utilized include: Iffgd.org, g-pact.org, hospital health portals, and open access medical journal publications.

Use of online support groups and social media ranked second in this study, with 32% of responders stating they use them as a resource. Some responders specified using online social channels to discuss concerns prior to doctor’s visits or gather ideas about what to prepare. The third most common resource was a prepared list including information such as symptoms, foods eaten, activities, questions, and medications they have taken. The 29% of responders who utilize this resource, do so in the form of written lists, journals, and phone apps. Other resources used were reaching out to personal connections, including family, friends, caregivers, and therapists, medical books, printed brochures and handouts, as well as bringing something for relaxation during waiting times, such as a stress ball or music.

The National Institutes of Health (NIH) and Medicare recommend preparing for appointments well in advance of the actual date. If any special services are required, such as an interpreter or accessible medical equipment, arrangements should be made at the time of scheduling in order to make the most out of the time available with the physician . In addition, to prevent a delay or potential cancellation with a late arrival, it is recommended to plan to arrive at least fifteen minutes early. This allows time to find the correct building and/or office and to fill out any necessary paperwork .

It is important to bring all relevant medical documentation and a written medical history to each appointment. Having this information together and readily available is convenient for patients and healthcare providers alike, while allowing for efficient review of all information. At a minimum, this readily available packet of information should include medical insurance cards, records from previous doctor’s offices, relevant test results and x-rays.

A list of personal information that will need to be updated regularly and brought to each appointment includes :

• •
  

  All current and previous medications taken by the patient, along with the dose; this includes supplements and over the counter (OTC) medications

  
  
• •
  

  All known allergies and listing of reactions to the allergens

  
  
• •
  

  All previous surgeries and procedures, with dates

  
  
• •
  

  All hospitalizations, with dates

  
  
• •
  

  Any other medical diagnoses

  
  
• •
  

  A list of the patient’s current symptoms, as well as a listing of previous (but no longer relevant) symptoms related to gastroparesis

  
  
• •
  

  A detailed family history of significant medical conditions

  
  
• •
  

  An up-to-date list of all other physicians seen by the patient, including their contact information

Other considerations when preparing for an appointment include:

• •
  

  Bringing a friend or family member to the first visit to help take notes, validate the patient story, and/or share any personal observations .

  
  
• •
  

  Planning time during the appointment for discussion on how follow-up should be handled. This includes information on best days/times to contact the physician’s office as well as the contact person (nurse, aide, or secretary) and means (phone, web portal, app, e-mail) .

  
  
• •
  

  Bringing all necessary medical supplies and other emergency back-up supplies, including eyeglasses and hearing aids.

  
  
• •
  

  Because the gastroparesis community often has many dietary restrictions, patients should bring with them fluids and snacks they are able to tolerate.

  
  
• •
  

  Bringing a notebook and pen to make notes and write down any questions the doctor may have that will need answered in a follow-up session .

The following organizations have a track record of high-quality patient education developed by thought leaders who do research in the area of gastroparesis.

The Gastroparesis Patient Association for Cures and Treatments, Inc. (G-PACT)

The Gastroparesis Patient Association for Cures and Treatments (G-PACT) is a 501(c)(3) non-profit which was founded on August 23, 2001 by a small handful of patients actively involved in a Yahoo support group. The Yahoo group, which was founded in September 2000 by Former G-PACT President, Carissa Haston, rapidly grew to over 3000 patients, in multiple countries, who were seeking information and support from others in an era in which social media did not yet exist and resources were limited.

G-PACT has a strong patient focus and many programs have been developed at the request of patients. G-PACT provides many opportunities for patients to get involved in various aspects of the work they do. Recognizing the challenges of consistency with chronic illness, G-PACT is flexible with volunteer opportunities, allowing patients to get involved and feel productive without the pressure of meeting certain deadlines.

G-PACT provides the following resources:

• •
  

  Hosts a detailed IRB approved patient research study; which can be completed by anyone and updated as changes occur in the condition or management of it.

  
  
• •
  

  Various accessibility cards including Restaurant, Restroom, Backpack, and Venue cards to request certain accommodations in public settings.

  
  
• •
  

  Manages multiple online support groups providing accurate information, while still allowing safe places for patients to connect with others in a compassionate atmosphere.

  
  
• •
  

  A PAL (Patient Awareness Liaison) phone line for patients to reach out to trained volunteers to speak with someone in person for support.

  
  
• •
  

  One-on-one assistance with Social Security or insurance applications or appeals, references to additional programs for assistance, and maintain relationships with specific organizations, businesses, or individuals to help with various personal advocacy needs.

  
  
• •
  

  Interactive Zoom! or Facebook Live educational sessions.

  
  
• •
  

  A list of medical professionals by state/country.

  
  
• •
  

  A thorough booklet with information about Gastroparesis, G-PACT, and additional resources available.

  
  
• •
  

  Gastroparesis cookbooks including nutritional information evaluated by dietitians.

  
  
• •
  

  An online store for gastroparesis awareness products.

  
  
• •
  

  An online newsletter/blog.

G-PACT participates in the following events:

• •
  

  Founded Gastroparesis Awareness Month in 2010; which provides many activities for patients to easily get involved in increasing awareness in creative ways, learn more, or participate in fun contests and express themselves.

  
  
• •
  

  Exhibit and speak at various conferences or local events upon request.

  
  
• •
  

  Members of ANMS and DDNC and advocate on Capitol Hill annually.

  
  
• •
  

  Contributes to various medical publications and outside blogs/newsletters.

G-PACT ensures information provided is accurate and current. They have a Medical Advisory Board of leading professionals to ensure they always meet this standard. G-PACT can be found online (g-pact.org, thepactblog.wordpress.com and www.gastroparesisawarenessmonth.org ) and on social media through the following channels: Twitter (@4GPACT), Facebook (@4GPACT) and Instagram (@4GPACT) .

The International Foundation for Gastrointestinal Disorders (IFFGD)

The International Foundation for Gastrointestinal Disorders (IFFGD) was founded in 1991 by Nancy Norton, a patient struggling with the challenges of a chronic gastrointestinal disorder, during a time where resources and educational materials were nearly nonexistent. IFFGD is a 501(c)(3) registered nonprofit education and research organization with a mission to inform, assist, and support people affected by gastrointestinal (GI) disorders. Working with patients, families, medical professionals, researchers, regulators and employers allows IFFGD to broaden understanding of GI disorders, support and encourage research and improve digestive health in adults and children .

IFFGD manages eight websites on various gastrointestinal areas (IFFGD.org, aboutGastroparesis.org, aboutConstipation.org, aboutIBS.org, about GERD.org, aboutGIMotility.org, aboutIncontinence.org, and aboutKidsGI.org). In a 2014 review by Rayner, et al. of four websites evaluated for their ability to provide reliable information to gastroparesis patients, IFFGD (aboutGastroparesis.org) was listed as top source above the National Digestive Diseases Information Clearinghouse (NIDDIC), MedicineNet and WebMD .

The organization’s main website, IFFGD.org houses several resources for patients including

• •
  

  Dietitian Listing database; where patients can find a local dietitian specializing in working with those with gastrointestinal conditions.

  
  
• •
  

  Research Study Listing; where patients can find research studies, including clinical trials, that are currently enrolling new patients.

  
  
• •
  

  Resource Library; searchable directory of over three hundred fact sheets covering various topic areas in interest to the GI patient community, encompassing over thirty disease states.

Other educational resources from IFFGD are

• •
  

  Norton Patient Education Series as an opportunity to equip chronic GI disorder patients with the knowledge and tools to navigate everyday life. Three events are to be held each year with each event going very in depth with covering a specific topic or disease.

  
  
• •
  

  Research on the Road is an opportunity for patients to hear from experts IFFGD interviews while traveling to GI conferences.

  
  
• •
  

  Digestive Health Monthly , IFFGD’s monthly newsletter is available to community members who wish to stay up to date on IFFGD’s events and relevant news and announcements.

IFFGD has been a voice advocating for those affected by functional gastrointestinal and motility disorders for almost three decades. Throughout each year, IFFGD is in contact with and makes several visits to government offices such as the Federal Drug Administration, National Institute of Health, Department of Health and Human Services, Department of Defense, Social Security Administration and Department of Veterans Affairs. In an effort to support legislation benefitting the GI community, IFFGD regularly visits congressional offices and shares pertinent information from the patient community relevant to current legislation.

All resources from IFFGD are free and fully available to people who want to learn more about chronic gastrointestinal and motility disorders. IFFGD can be found on social media through the following channels: Facebook (@IFFGD), Twitter (@IFFGD), LinkedIn (International Foundation for Gastrointestinal Disorders) and Instagram (@digestivehealthmatters) .

The Association of Gastrointestinal Motility Disorders, Inc. (AGMD)

The Association of Gastrointestinal Motility Disorders, Inc. (AGMD) was founded in 1991 by a patient diagnosed with chronic idiopathic intestinal pseudo-obstruction which progressed over the years to affect her entire digestive tract and many other body systems. Mary-Angela DeGrazia-DiTucci has dedicated her life to improving the outcome for other patients affected by gastrointestinal and motility disorders while working to advocate for research and connecting medical professionals to patients and families. This international organization seeks to create a sense of community among patients, family members, and healthcare professionals. AGMD provides information for members of the medical, scientific and nutritional communities and support for patients (and their families) suffering from digestive motility diseases and disorders .

AGMD is one of the few organizations which provides structured support opportunities for various gastrointestinal and motility disorders, such as gastroparesis. These encompass in-person and telephone/Internet meetings, webinars and online communities. All support programs are listed on their calendar of events and an Audio Support Library that houses recordings of Telephone/Internet Community Support Group Meetings is available as well. In addition, patients are encouraged to submit stories and photos relevant to their lives as they are affected by GI disorders and to participate in Open Discussion Programs.

Other resources from AGMD:

• •
  

  Lists of physicians, medical centers, and dietitians are available on the website.

  
  
• •
  

  The AGMD Online Education Center offers resources and educational materials relevant to gastroparesis and other digestive motility disorders and pertinent to patients, family members, and medical and nutritional communities.

  
  
• •
  

  Hosts conferences and symposiums with featured guests from throughout the GI community, including professionals and the patient community.

  
  
• •
  

  Publishes a quarterly e-magazine, AGMD Beacon of Hope Journal , that includes educational articles, insights into current research and issues, and patient stories and photos.

AGMD stays up to date on medical, health and advocacy news. Corporate collaborations are facilitated to increase education, awareness, research, diagnosis and treatments. AGMD can be found on the web at AGMDHope.org and on social media through the following channels: Facebook (@gimotility), Twitter (@gimotility and @AGMDHope), and Instagram (@AGMDHope) .

The Oley Foundation

The Oley Foundation was founded in 1983 by Lyn Howard, MD and her patient, Clarence “Oley” Oldenburg, as a national, independent, non-profit 501(c)(3) organization that strives to enrich the lives of those living with home intravenous (parenteral) and tube feeding (enteral) nutrition through education, advocacy, and networking. The Foundation also serves as a resource for consumer’s families, clinicians and industry representatives, and other interested parties.

Programs provided by the Oley Foundation include:

• •
  

  LifelineLetter: a bi-monthly newsletter with articles about medical advances and personal experiences, written for consumers.

  
  
• •
  

  Oley Ambassador Network: a national grassroots network of 60+ volunteers — all consumers or caregivers — who run support groups and provide outreach and education at the local level.

  
  
• •
  

  National and Regional Conferences: opportunities for consumers, clinicians, providers and industry representatives to share support and information.

  
  
• •
  

  Consumer Networking: online chat forum and connection to experienced consumers and caregivers.

  
  
• •
  

  Equipment/Supply Exchange: a program that provides patients with free supplies and equipment donated by members who no longer need them.

Oley provides all their resources at no charge to the patient community. They can be found on the web at oley.org and on social media through the following channels: Facebook (the Oley Foundation), and Twitter (@oleyfoundation) .

Nord

The National Organization for Rare Disorders (NORD) is a registered 501(c)(3), patient advocacy organization that has been a resource for patients and their families, patient organizations and medical professionals affected by rare diseases for over thirty-six years. NORD’s goal is “to improve the lives of individuals and families affected by rare diseases” . The policy team at NORD is actively working with policy makers on Capitol Hill, in the White House, locally and at government agencies so that they are aware of the needs of the rare disease community. Patient community members are welcome to join NORD in their advocacy efforts. Disease-specific organizations can partner with NORD through their mentorship program, providing the tools and guidance to strengthen and grow.

NORD supports research for rare diseases such as gastroparesis through a grant program. As rare diseases are a cost burden, NORD has developed a Patient Assistance Program to help with applicable treatment and clinical trial related costs. NORD has over 280 patient organization members, collaborates internationally as a member of umbrella organizations and is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services . They can be found on the web at raredeiseases.org and on social media through the following channels: Facebook (@NationalOrganizationforRareDisorders), LinkedIn(National Organization for Rare Disorders), Twitter (@RareDiseases), Instagram (@nord_rare) and YouTube (National Organization for Rare Disorders (NORD)) .

The NIH

The National Institutes of Health is the primary agency of the United States government responsible for biomedical and public health research . MedlinePlus is a website available through the National Institute of Health, produced by the National Library of Medicine. MedlinePlus.gov is regularly updated with treatments, drug or supplement information, medical illustrations and videos, and links to other resources .

The NIH also has a website dedicated to Genetic and Rare Diseases (GARD), rarediseases.info.nih.gov, which houses reliable and current information for many disease states, including gastroparesis. GARD lists sources that they recommend patients continue to for more information. This website includes a very general overview of gastroparesis with a link to aid in finding clinical research trials .

Gastroparesis clinical research consortium (gpcrc)

The National Institute of Diabetes and Kidney Diseases (NIDDK) formed the Gastroparesis Clinical Research Consortium (GpCRC), to “advance research on the etiology, natural history, and therapy of gastroparesis” . The consortium, established in 2006, hosts a patient registry and consists of several medical and scientific research centers :

• •
  

  Baylor College of Medicine

  
  
• •
  

  Johns Hopkins University

  
  
• •
  

  Massachusetts General Hospital

  
  
• •
  

  Temple University

  
  
• •
  

  Texas Tech University Health Science Center

  
  
• •
  

  The Mayo Clinic

The Consortium has advanced both physician and patient knowledge of gastroparesis. Through its research and data collection efforts, the “GPCRC has provided a detailed understanding of the clinical characteristics and course of patients, has identified specific pathological changes and has implicated putative etiologies, setting the stage for disease-modifying therapy” that offers great hope for gastroparesis patients .

The American Neurogastroenterology and Motility Society (ANMS)

Established in 1980, the American Neurogastroenterology and Motility Society (ANMS) seeks to promote “excellence in research, education, training, and patient care” in the field of functional gastrointestinal and gastrointestinal motility disorders and through the study of brain-gut function and interaction .

The ANMS publishes a journal dedicated to reviewing and highlighting the latest research in the field, and offers clinical training, continuing education classes, workshops, conferences, and mentoring programs to those in the medical field. Further, the society maintains a list of GI motility laboratories and other useful patient resources on its website.

ANMS endeavors to educate and engage patients, physicians, and other industry participants through its numerous offerings and outreach efforts .

What other resources are needed?

Participants in the GP-POR survey where asked, in an open-ended response, in what areas more resources are needed for gastroparesis. Fifty-one participants responded to this question, with 41% specifying the need for more education on gastroparesis. Of those responders, 86% indicated that physicians and medical professionals need more education on this disease. The need for various day-to-day resources for patients was listed by 25% of the responders. Of those, 54% specified the need for support, both in person and online, and 38% requested more resources on symptom management.

Resources to learn about treatment options were requested by twenty-four of the responders. These needs include information on current and upcoming treatments, medications and procedures. In a survey of 1423 adult patients living with gastroparesis, Yu et al. found that 64% are not satisfied with current treatment options and 48% are seeking out treatment options specific for gastroparesis .

Through our conversations and interactions with patients, we have found that patients frequently state their desire for more information told from the patient perspective. The general feeling is that the available resources do not adequately portray or address the daily life and hardships endured by many patients. They feel current literature offers a “sanitized” view that often downplays the potentially serious nature of gastroparesis. Consequently, a newly diagnosed patient can be taken off guard and is unprepared if they suffer from a more severe case. They desire literature which address symptoms and treatments in accordance with the level of severity of their condition and feel current resources do not adequately stress how debilitating the illness can be.

They would further like to see these resources provided at the point of care (GI offices, hospitals, PCP offices), upon diagnosis, to every patient. Many note the lack of resources offered to them immediately upon and after diagnosis and wish to walk away with literature in hand – literature that includes a listing of additional resources. Patients additionally cite the need for greater emphasis on physician education, especially regarding the emotional impact and daily hardships of living with the illness, as well as empathy training.

It should be noted that the overall readability of educational resources provided to patients can also be a major hindrance, especially for those newly diagnosed or unfamiliar with the disease. In a 2017 readability review by Meillier and Patel, twenty-six patient education resources for gastroparesis were analyzed for their grade level readability. In this evaluation, all twenty-six sources were analyzed on ten readability scales. The reading grade level for each resource was determined by the average of all ten readability scale scores . Although the American Medical Association (AMA) recommends publishing patient materials at a fifth to sixth grade reading level to improve readability , the review found the average reading grade level of gastroparesis resources analyzed to be 12.7±1.78, well above these AMA recommendations. It is vitally important to consider readability as new research findings are implemented, treatments are discovered, and resources are made available to the gastroparesis patient community. Resources are only beneficial if the patient community can fully understand the material provided to them .

Mental health resources

One area that is sometimes overlooked in the treatment of chronic illness is the impact of mental health on patients. Our conversations with patients and informal surveys reveal that disorders such as anxiety and depression often affect a patient’s ability to cope with the physical effects of gastroparesis, and yet, community members often note that the mental and emotional aspects of the illness are not raised or discussed by their provider; nor are they referred to mental health professionals or given resources about where they might seek such assistance. Further, there is a general lack of availability and knowledge of chronic illness-specific therapists among the patient community.

But increased interest in the field of pshychogastroenterology is changing this. GI psychologists are increasingly sought to work with GI teams to “assess and treat patients with an evidence-based, holistic lens that integrates biology and psychology” to produce “tailored assessment of symptoms and goals” that “match the patient’s priorities” .

One resource patients and physicians alike might find useful is the Rome Foundation. The Rome Foundation is committed to legitimizing the mental and emotional health struggles associated with gastrointestinal symptoms through educational and training programs designed to benefit patients and providers. Rome maintains a “Gastropsych Directory” at https://romegipsych.org/ .

Patients and providers are encouraged to discuss mental and emotional needs and to seek out therapists specializing in the treatment of chronic illnesses when appropriate.

Conclusion

Though gastroparesis remains somewhat poorly understood and little recognized, awareness of the available resources at the disposal of both patients and physicians can help mitigate the associated burdens. Knowledge is key in obtaining an accurate diagnosis and effective treatments, and we hope the numerous available resources outlined in this chapter assist in the journey to better care.