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  • Jefferson Adams
    Jefferson Adams

    Many Celiac Patients Diagnosed in Childhood Do Not Seek Follow-up care as Adults

    Celiac.com 07/08/2016 - If their symptoms don't get worse, many patients diagnosed with celiac disease as children do not pursue follow-up care as adults, according to data presented at Digestive Disease Week 2016.

    There's been some really good stuff coming out of Digestive Disease Week 2016 in San Diego. One example is a talk given by Norelle Reilly, MD, from the division of pediatric gastroenterology and the Celiac Disease Center at Columbia University Medical Center in New York City.

    According to data presented by Dr. Reilly many patients diagnosed with celiac disease as children do not pursue follow-up gastroenterology care as adults, unless symptoms worsen.

    Reilly and colleagues sent a 33-question survey to nearly 8,000 recipients via the medical center's proprietary distribution list and received 98 qualified responses.

    According to Reilly, 37% of respondents said they were not seeking ongoing care for celiac disease. These respondents reported an average of 2 to 5 years, and sometimes as many as 10 years, between doctor visits for their celiac disease. Compare that with an average of six months between doctor visits for people who were getting regular care.

    Large numbers of patients diagnosed with celiac disease in childhood do not seek follow-up care as adults, especially those diagnosed earlier in childhood, who may have fewer ongoing symptoms, Reilly said.Â

    She ended her talk by asking "providers caring for children and adolescents with celiac disease [to] educate early as to the importance of ongoing care, emphasize the importance of follow-up and the reasons for follow-up, particularly with patients who lack symptoms and may not seek care otherwise and to provide a referral, and formally transition the patient to adult care to improve compliance."

    Reference: Reilly N, et al. Abstract #35. Presented at: Digestive Disease Week; May 21-24, 2016; San Diego.

    Read more at Helio.com.

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    Dr. Riley sent out 8,000 surveys and got 98 back. So 7,902 did not respond. Sorry, the methodology was flawed. We have no idea why the nearly 80 times as many respondents chose not to respond. If the survey was perceived as irrelevant to just 1-2% of these (over 100), any conclusion based on just 98 responses is noise.

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  • About Me

    Jefferson Adams earned his B.A. and M.F.A. at Arizona State University, and has authored more than 2,000 articles on celiac disease. His coursework includes studies in biology, anatomy, medicine, science, and advanced research, and scientific methods. He previously served as Health News Examiner for Examiner.com, and devised health and medical content for Sharecare.com. Jefferson has spoken about celiac disease to the media, including an appearance on the KQED radio show Forum, and is the editor of the book "Cereal Killers" by Scott Adams and Ron Hoggan, Ed.D.

  • Related Articles

    Destiny Stone
    Celiac.com 02/22/2010 - Celiac disease affects approximately 1 in 100 people in the United States. Celiac disease is a genetic disease and the only known cure is a gluten-free diet for life. While most people with celiac disease experience a relief from symptoms while on a gluten free diet, studies are showing an increased mortality rate in patients with the disease compared to the general population.
    Out of the 21 papers that have been published over the last 25 years addressing the issue of celiac and mortality rates, the studies show conflicting results, ranging from a 0.52% (decrease) to 3.9% (increase) in mortality rates for patients with celiac compared to the general population. The reasons for the conflicting results are based on the fact that the papers vary vastly from each other, and while some studies are location based or population based, others are cohort based. So for the sake of this particular study, celiac patient's have been categorized into four different groups: symptomatic celiac disease, dermatitis herpetiformis, unrecognized celiac disease and refractory celiac disease. Because these groups of celiac patients differ greatly, it is necessary to analyze their mortality rates individually.
    Ten papers in five different countries studied mortality in patients with symptomatic celiac, or celiac symptoms that indicate the presence of celiac disease in a patient. All ten papers on the subject came to the same conclusion, patients with symptomatic celiac disease have been shown to have a increased mortality rate. The primary reason for increased mortality in these particular patients was found to be caused by complications from celiac disease like gastrointestinal malignancies such as, non-Hodgkin lymphoma and small bowel cancer. Other conditions that led to increased mortality for these patients included, autoimmune conditions, ischemic heart disease and violence (including suicide and accidents).
    Dermatitis herpetiformis is a gluten agitating blistering of the skin which has frequently been associated with celiac disease. Four studies have been conducted on the mortality rates of celiac patients with dermatitis herpetiformis and found that mortality rates did not increase for them compared to the general public.
    Four studies were also conducted to determine the mortality rates of people with unrecognized, and therefore untreated celiac disease. Two of the studies showed no increase in mortality, while the other two (including the United States study) showed a considerable increase in mortality of people with unrecognized celiac disease. The reason for the conflicting evidence can be merited to the difficulty in obtaining non-biased, random subjects for the study.
    Refractory celiac disease is known as an inexorable form of celiac disease. Symptoms associated with refractory celiac do not improve with a gluten-free diet. Refractory celiac disease is classified into two types: type I and type II. Type II refractory celiac patients are inclined to develop enteropathy associated T-cell lymphoma and have a lower survival rate than type I patients. While the 5 year survival rate for type I patients is between 80%-96%, those with type II refractory celiac only had a 44%-58% chance of survival which dropped to 8% in those patients that developed enteropathy-associated T-cell lymphoma.
    Other studies of mortality rates in celiac patients have indicated that there is a actual amount of gluten that one can exceed which will eventually lead to complications with celiac disease. Thus, if a person continually consumes more gluten than can be processed by their body, usually as a result of malabsorption associated with celiac disease, it is more likely to activate refractory celiac disease and lymphoma in some individuals.
    Overall these studies have aided in proving that compared to the general population, the risk of mortality rates are increased for celiac patients. While mortality rates decreased over time starting from the point of celiac diagnosis, mortality rates tended to increase significantly in patients who did not adhere to a strict gluten free diet. Standard mortality rates doubled for patients who were unlikely to stick to a gluten free diet, and for patients that definitely did not follow a strict gluten free diet, the mortality rate was six times higher. Therefore, if you have celiac disease, early diagnosis and strict adherence to a gluten free diet can be a life-saver, and is very likely to extend and improve your quality of life.
    Source:

    Biagi, F. & Corazza, G. R. Nat. Rev. Gastroenterol. Hepatol. advance online publication 2 February 2010; doi:10.1038/nrgastro.2010.2

    Jefferson Adams
    Celiac.com 09/15/2010 - Until the present study, no clinical research had been published regarding the relative effects of clinical and psychosocial variables on outcome in celiac disease.
    A team of researchers examined psychosocial factors that may influence disease activity in celiac patients, such as relationships among demographics, psychosocial factors, and disease activity with health-related quality of life (HRQOL), health care utilization, and symptoms.
    The research team included Spencer D. Dorn, Lincoln Hernandez, Maria T. Minaya, Carolyn B. Morris, Yuming Hu, Suzanne Lewis, Jane Leserman, Shrikant I. Bangdiwala, Peter H. R. Green and Douglas A. Drossman of the Center for Functional GI and Motility Disorders at the University of North Carolina, Chapel Hill, USA.
    The team enrolled 101 adult patients with celiac disease with the goal of charting any relationships among demographics, psychosocial factors, and disease activity with health-related quality of life (HRQOL), health care utilization, and symptoms. All patients were newly referred to a tertiary care center with biopsy-proven celiac disease.
    The team examined: (a) demographic factors and diet status; ( disease measures (Marsh score, tissue transglutaminase antibody (tTG) level, weight change and additional blood studies); and © Psychosocial status (psychological distress, life stress, abuse history, and coping). They then conducted multivariate analyses to predict HRQOL, daily function, self-reported health, number of physician visits, and GI symptoms, such as pain and diarrhea.
    They found that patients with psychological distress and poor coping skills suffered from impaired HRQOL and daily function.
    Patients who reported poorer health generally showed poorer coping, longer symptom duration, lower education, and greater weight loss. Patients with poorer coping, abnormal tTG levels, and milder Marsh classification generally had more physician visits.
    Patients with higher psychological distress and greater weight loss also showed higher pain scores. Patients with greater psychological distress and poorer coping also showed higher rates of diarrhea.
    Their results show that among patients at celiac disease referral centers, psychosocial factors have a greater impact on health status and GI symptoms than does disease activity. Such factors should be considered as part of the patient's treatment and prognosis.
    Source:

    Dig Dis Sci. 2010 Jul 30. DOI: 10.1007/s10620-010-1342-y

    Jefferson Adams
    Celiac.com 08/08/2011 - In the face of steadily rising numbers of people with celiac disease, very little information exists on the economic costs and impacts associated with celiac disease.
    A team of researchers recently set out to assess the impact of celiac disease diagnosis on health care costs and the incremental costs associated with celiac disease.
    The research team included K. H. Long, A. Rubio-Tapia, A. E. Wagie, L. J. Melton III, B. D. Lahr, C. T. Van Dyke, and J. A. Murray.
    They are affiliated variously with the Division of Health Care Policy & Research, the Division of Gastroenterology and Hepatology, the Division of Epidemiology, and the Division of Biomedical Statistics and Informatics at the College of Medicine of the Mayo Clinic in Rochester, Minnesota.
    To carry out their population-based cohort, the team used administrative data on celiac disease cases and matched controls from Olmsted County, Minnesota.
    They compared: 1) direct medical costs one year before and one year after celiac disease diagnosis for 133 index cases and for control subjects; and 2) cumulative direct medical costs over four years for 153 index celiac cases and for control subjects. Their analyses did not include diagnostic-related and outpatient pharmaceutical costs.
    They found that a diagnosis of celiac disease lowers the average total costs by $1,764 in the year following diagnosis (pre-diagnosis cost of $5,023 vs. $3,259; 95% CI of difference: $688 to $2,993).
    They found also that, over a 4-year period, people with celiac disease faced an average of $1,457 in higher outpatient costs (P = 0.016), and an average of $3,964 in higher total costs of $3,964; (P = 0.053), compared with the control group.
    Men with celiac disease bore the brunt of those higher costs, with excess average total costs of just over $14,000 compared to costs of $4,000 for male controls; 95% CI of difference: $2,334 to $20,309).
    Costs associated with celiac disease pose a significant economic burden, especially for men with the disease.
    Early detection, diagnosis and treatment of celiac disease lowers medical costs, and will likely benefit patients and health care providers alike.
    Source:

    Alimentary Pharmacology & Therapeutics, Volume 32, Issue 2, pages 261–269, July 2010

    Jefferson Adams
    Celiac.com 09/07/2012 - Many people with celiac disease will tell you that getting a proper diagnosis is just part of the battle. Maintaining a strict gluten-free diet, and getting adequate medical follow-up care can be nearly as challenging as getting a proper diagnosis.
    A group of researchers, led by Joseph A. Murray, MD, AGAF, of Mayo Clinic, confirms that assessment in a new study. The study appears in Clinical Gastroenterology and Hepatology, and shows that follow-up care for patients with celiac disease is often poor and inconsistent.
    For their study, researchers collected data on 122 patients diagnosed with celiac disease between 1996 and 2006 in Olmsted County, MN. The patients were 70 percent women, and averaged 42 years of age.
    The researchers then calculated the rates at which patients were given follow-up exams from six months to five years after celiac disease diagnosis.
    Of the 113 patients the study followed for more than four years, only 35 percent received follow-up analyses that met AGA guidelines. The other patients did not receive medical follow-up that met "even the most lax interpretation of current guidelines,” said Dr. Murray.
    The researchers used the Kaplan-Meier method to estimate event rates at 1 and 5 years. They classified patients according to categories of follow-up procedures recommended by the American Gastroenterological Association (AGA).
    The study shows that even with widespread circulation of follow-up recommendations, plenty of patients are not getting proper follow-up for celiac disease.
    According to Dr. Murray, gastroenterologists with the expertise in celiac disease need to encourage active follow-up of celiac patients and improve their overall quality of medical care.
    Basically, says Dr. Murray, celiac disease "should not be different from other chronic conditions for which medical follow up is a given such as liver disease, inflammatory bowel disease or even gastroesophageal reflux disease."
    Anecdotally, many patients with celiac disease feel that they must manage celiac disease on their own,” Murray adds, pointing out that it is important for doctors and patients to understand the need for proper medical follow-up of celiac disease.
    The authors note that, since gastroenterologists are leading the way in the detection of celiac disease, and since it is a chronic condition, with possible long-term complications, improved communication between gastroenterologists and patients can help to ensure that patients get important follow-up care, and thus improve outcomes in celiac disease.
    What are your thoughts? Do you feel that you've gotten adequate follow-up care for your celiac disease? Share your comments below.
    Source:
    Clinical Gastroenterology and Hepatology

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