Resources for the gastroparesis patient

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.