Guest Commentary: Celiac advocacy group works to improve diagnosis of patients' relatives

In this guest commentary, Alice Bast, CEO of Beyond Celiac — the national patient advocacy group formerly known as the National Foundation for Celiac Awareness — discusses the importance of educating at-risk relatives of patients with celiac disease about getting tested themselves. Using patient-powered research, Beyond Celiac identified effective communication strategies for educating family members of celiac patients, and the resulting Seriously, Celiac Disease campaign aims to promote effective communication and increase diagnosis rates.

What if a personal, one-on-one conversation was the ticket to driving down the rate of undiagnosed celiac disease?

It very well may be.

Alice Bast

Eighty-three percent of people living with celiac disease remain undiagnosed or misdiagnosed. Celiac disease is a serious genetic autoimmune condition affecting just under 1% of the population, or about one in 133 Americans. It’s at least four times more common today than in 1950, yet remains misunderstood. This is partly a result of myths about the benefits of the gluten-free diet as a general health or weight-loss strategy, which has obstructed understanding of the severity of the disease and the medical necessity of a gluten-free diet for those living with celiac disease.

Living with undiagnosed celiac disease has been shown to put people at risk for cancer, such as lymphoma, bone disease and the onset of other autoimmune diseases. Prompt and accurate diagnosis, combined with elimination of gluten from the diet and proper disease management by a knowledgeable health care team, can help mitigate long-term health complications and preclude unnecessary tests and treatments.

Reaching the highly at-risk population

Because of celiac disease’s strong genetic link, researchers have identified testing family members of those diagnosed as a proactive approach to promoting diagnosis.

However, motivating this specific health care behavior can be notoriously difficult even for a health care professional who has the training and experience to support these efforts, and doing so can be even harder for individuals diagnosed with a hereditary condition who seek to educate and motivate their genetically at-risk relatives.

For celiac disease, an additional challenge is that despite the well-established genetic component, biological relatives often do not understand why testing is important for their own health.

Beyond Celiac, a national patient advocacy organization, drives diagnosis of celiac disease. As a first step in encouraging the testing of biological family members, Beyond Celiac first had to better understand this target population.

To tackle this problem head on, Beyond Celiac conducted qualitative research using an online community of patients and untested relatives to uncover the perceptions, barriers and knowledge gaps about disease risk and the testing process.

Traditionally, the celiac disease community approaches their relatives by sharing statistics about the disease through digital communications, like Facebook posts and emails. What we found, though, is that this exact approach is actually a barrier to diagnosis.

Our patient-powered research showed that when biological relatives of people diagnosed with celiac disease are educated about the condition in the appropriate setting and provided with the right resources, their receptiveness to taking a simple blood test increases. Rooted in the basics of verbal and non-verbal communication, a family member’s likelihood of getting tested is determined by key factors including how and when we talk about disease risk and severity and the mindful balance of being both informative and caring. Amid the deluge of technology and the internet, it is still the direct, one-on-one, personal conversations that focus on the basics of verbal and non-verbal communication that make an impact. This unique strategy can help those most at-risk for celiac disease ask their doctor to be tested for the genetic condition.

The results of this research is the Seriously, Celiac Disease campaign, which is grounded in proven health communication theories to help spur behavior change. It consists of a video public service announcement (PSA), which models the appropriate way to have the testing conversation. The video is supplemented with downloadable guides that provide patients diagnosed with celiac disease the “dos and don’ts” for having this important talk. Downloadable information on celiac disease and the testing process is available as follow up material for at-risk relatives. The relatives are encouraged to then initiate a conversation with their doctor.

Physicians play two important roles in breaking down barriers to celiac disease testing among genetically at-risk family members.

Physicians can provide their diagnosed patients with the right tools and information to learn the best way they can ask their at-risk family members to be tested. These resources are available at www.SeriouslyCeliac.org.
We urge physicians to be open to testing patients for celiac disease, especially if one of their biological relatives has been diagnosed. Celiac disease experts recommend that physicians actively ask their patients if celiac disease runs in their family and, when it does, test that person for celiac disease. Information on celiac disease blood testing can be found here.

Sharing the findings at Stanford Medicine X

In the first 7 months after launch, the campaign reached 642,000 people via online communications channels. After using the campaign resources, 95% of untested relatives surveyed said they are likely to ask their doctor for a celiac disease blood test.

The findings and recommendations born from the Seriously, Celiac Disease campaign will be presented at the Stanford Medicine X 2016 Conference, a meeting of innovators from around the world who are actively working to change the way physicians provide care to patients. The Beyond Celiac initiative will be highlighted during the workshop “Applying Behavior Change Models to Educate Genetically At-Risk Celiac Disease Patients.”

An expert panel will discuss how Beyond Celiac developed and used an in-depth patient engagement model to help advance celiac disease diagnosis rates. The workshop will also explore how Beyond Celiac leverages this model to educate and empower individuals living with celiac disease to encourage their biological relatives to be tested.

Aimee Corso, a nationally respected consultant on improving stakeholder communications within the health care system and board member of Beyond Celiac, will moderate the conversation at the workshop. The session will feature a panel of experts on celiac disease, clinical research, media production and patient engagement:

Alice Bast, CEO, Beyond Celiac – Bast will discuss the important role patient organizations have in driving diagnosis rates and the factors such organizations should consider when determining engagement strategies.
Daniel Leffler, MD, MS, Director of Research, The Celiac Center, Beth Israel Deaconess Medical Center; Beyond Celiac Scientific/Medical Advisory Council member – A recognized international thought leader in the celiac disease field, Dr. Leffler will present the foundational clinical research insights that guided this campaign and also share ideas on how clinicians can apply similar approaches to their care models.
Patrick McGovern, Senior Director, Global Strategy, Wondros – McGovern will discuss how Wondros and Beyond Celiac partnered to formulate the creative strategy and produce a video PSA that serves as the campaign’s centerpiece.
Kristin Voorhees, MA, Director of Healthcare Initiatives, Beyond Celiac – Responsible for the research, development, launch and evaluation of the campaign, Voorhees will outline how an online research community captured critical insights from patients and consumers and determined the campaign’s strategy and messaging.

New research is necessary for crafting innovative ways to reach the at-risk celiac disease community. Initiatives informed by this Beyond Celiac research can help spur diagnosis and raise awareness of the disease, and inform how other disease communities approach their own efforts to drive diagnosis rates.

Beyond Celiac urges all physicians to speak with their patients about the family risk of celiac disease and to share Seriously, Celiac Disease with them to help drive down the undiagnosed rate. Learn more at www.SeriouslyCeliac.org.