A list of 585 gastroenterologists actively practicing in Canada was compiled from the sources listed above. Of the surveys sent, 11 were returned because of an invalid address; a search of printed and online sources did not yield an alternative address. Six respondents indicated that they were retired or no longer actively practicing. One individual reported having been contacted at practices in two provinces in the same region. Therefore, of the 585 surveys mailed, only 567 surveys were expected to be returned.
A total of 242 completed surveys were received from gastroenterologists in active practice, for an overall response rate of 42.7%. These included one survey from a hepatologist who did not treat patients with celiac disease and did not indicate a region. Six respondents identified having a mixed practice that included both adult and pediatric patients, and were asked to estimate the proportion of patients in each group. Those who had a practice with 75% or more adult or pediatric patients were included in subsequent analyses as either adult or pediatric gastroenterologists, respectively. One individual who did not identify the practice mix did not follow patients with celiac disease, and another who had a 60%/40% distribution was not classified. Because of these two physicians with mixed practices, the total number of gastroenterologists was not equal to the sum of the adult and pediatric gastroenterologists.
To investigate regional differences, participants were asked to identify their geographical region as West (British Columbia, Alberta, Saskatchewan and Manitoba), Central (Ontario and Quebec), Atlantic (Nova Scotia, New Brunswick, Prince Edward Island, and Newfoundland and Labrador) or North (Yukon Territory, Northwest Territories and Nunavut). There were no respondents who were based in the North, a sparsely populated region with no tertiary care centres. shows the number of surveys mailed, the number of completed surveys expected to be returned, and the response rate in each region and practice group. The response rate was higher for the Atlantic region (76%) than for the West (44%) and Central (38%) regions of Canada. A greater proportion of pediatric (57%) than adult gastroenterologists (38%) responded.
Response rate according to region and gastroenterologist type
Of the 242 responding gastroenterologists in active practice, five had an academic practice that did not include patients with celiac disease. Of the remaining 237 gastroenterologists, 184 had a practice that was primarily adult patients, 51 had a practice that was primarily pediatric patients and two had a mixed practice. The characteristics of respondents whose practice included patients with celiac disease are shown in . Approximately one-half of all respondents had an academic practice, with significantly more pediatric than adult gastroenterologists in academic practice (86% versus 43%; OR 8.4; 95% CI 3.6 to 20; P<0.0001). Each region had a similar proportion of adult and pediatric gastroenterologists.
Characteristics of respondents whose practice included patients with celiac disease
Overall, nearly 40% of respondents had been in practice for 10 years or less. As a group, pediatric gastroenterologists who responded had significantly fewer cumulative years in practice than their adult counterparts. The majority of respondents had between 11 and 100 patients with celiac disease in their practice.
Sources of information
Professional conferences (81%), medical journals (79%) and practice guidelines (67%) were the most common sources of information about celiac disease. Pediatric gastroenterologists were more likely to use conferences and practice guidelines than adult gastroenterologists, and also used practice guidelines more often than adult gastroenterologists who had a primarily academic practice (86% versus 66%; P<0.05). With respect to specific practice guidelines, significantly more adult gastroenterologists were familiar with the AGA guidelines; pediatric gastroenterologists were more familiar with the NASPGHAN guidelines. The 27 respondents (11%) who were not familiar with any practice guideline were all adult gastroenterologists. Slightly more than one-quarter of respondents listed the Canadian Celiac Association (CCA) as a source of information.
Duodenal biopsy practices
Participants were asked whether they routinely performed follow-up duodenal biopsy after diagnosis and their indications for biopsy during long-term follow-up. With respect to routine follow-up biopsy after initiation of a gluten-free diet, 38% almost always and 36% almost never performed a follow-up duodenal biopsy. The practice was significantly more common among adult than pediatric gastroenterologists (46% versus 10%; OR 7.8; 95% CI 2.9 to 22). There was no association between routine biopsy to confirm normal villous architecture and years in practice. The other 26% only performed a repeat duodenal biopsy in select cases. The most common indications were incomplete or inadequate response to a gluten-free diet (69%), persistently abnormal serology or other laboratory values (18%) and normal serology at diagnosis (9%).
The most common indication for duodenal biopsy during long-term follow-up was ongoing symptoms despite claiming adherence to a gluten-free diet (76%). Other reasons included concern of continued consumption of gluten (30%), concern of consumption with negative serology (22%) and to confirm normal histology (25%). Adult gastroenterologists were significantly more likely than pediatric gastroenterologists to perform a biopsy because of concern of continued consumption of gluten (34% versus 16%; P<0.05).
Use of serology
Participants were asked whether and when they performed follow-up serology. The majority of respondents (56%) almost always performed follow-up serological tests (tissue transglutaminase [tTG] antibody, antigliadin antibody or endomysial antibody [EMA]). In contrast to follow-up duodenal biopsy, pediatric gastroenterologists almost always perform follow-up serology more often than their adult counterparts (86% versus 48%; P<0.01). Of the remainder, 29% almost never performed follow-up serology. Those who did not provide routine long-term follow-up care were significantly more likely to almost never perform follow-up serology (57% versus 20%; P<0.01).
The timing of follow-up serology varied depending on how frequently the respondent reported performing the test. Those who perform routine follow-up serology ‘almost always’ tended to test early, with 16% first testing at three months, 57% at six months and 26% first testing at one year. Those who did not perform follow-up serology routinely tested later, with 47.4% waiting six months after initiation of a gluten-free diet and 42.1% waiting one year. The remaining 10.5% reported that their practices were highly variable or that they waited nine months. These rates did not vary significantly with practice demographics or between subgroups, including pediatric and adult gastroenterologists, and those who almost always provided follow-up care versus those who did not.
Long-term follow-up care
Participants were asked to indicate either the frequency of routine long-term follow-up or reasons for not providing routine follow-up. Three-quarters of respondents reported providing routine long-term follow-up care to patients with celiac disease. There were seven respondents who indicated both their long-term follow-up practices and reasons for not providing long-term follow-up. These responses were not included in the analysis of long-term follow-up practices because they could not be accurately categorized. There was no significant difference in the proportion of adult (75%) and pediatric (82%) gastroenterologists who provided routine long-term follow-up care.
Provision of long-term follow-up care was not significantly associated with practice type or the number of patients with celiac disease in a practice. The characteristics of gastroenterologists who did and did not provide routine follow-up to patients with celiac disease are compared in . Gastroenterologists in Central Canada were significantly more likely to provide long-term follow-up (86% versus 71% in the West, and 68% in the Atlantic regions; P<0.05).
Comparison of respondents who provided and did not provide long-term follow-up to patients with celiac disease
Gastroenterologists who did not routinely provide long-term follow-up to patients diagnosed with celiac disease tended to have a mixed rather than an academic practice and to have been in practice for longer than those who routinely provide long-term follow-up. They were significantly less likely to use conferences (53% versus 88%; P<0.01) or practice guidelines (49% versus 71%; P<0.01) for information. There was a trend toward increased levels of unfamiliarity with any practice guidelines (18% versus 9%; P=0.08). The most commonly cited reason for not providing long-term follow-up was that the patient’s primary care physician provided this care (86%). Other reasons cited included not having an organized system to recall patients (39%) and lack of time (33%). Many indicated that, in their view, follow-up is not required once the patient is on a gluten-free diet (20%) or that patients do not want follow-up (12%).
Long-term follow-up: Who should be involved?
Participants were asked to indicate who they believe should be involved in long-term follow-up care of patients with celiac disease (). Gastroenterologists with celiac disease patients in their practices were divided on whether care should be provided by a specialist gastroenterologist (54%) or by a family physician (59%). These numbers sum to greater than 100% because some respondents believe that care should be provided by both health care providers. The 6% who selected ‘other’ expressed the opinion that the discipline and title of the individual providing long-term follow-up is less important than interest and knowledge, and that the key element is access to a gastroenterologist or an endoscopist if indicated. Consistent with their reported practices, 92% of those who did not routinely provide long-term follow-up believed that this care should be provided by a primary care physician, and 67% of those who provide long-term follow-up care believed that gastroenterologists should fulfill this role.
Who should follow patients with celiac disease?
Compared with adult gastroenterologists, pediatric gastroenterologists believed more strongly that care should be provided by a specialist gastroenterologist (P<0.05) or internist/pediatrician (P<0.01), and were significantly less likely to believe that care should be provided by family physicians (OR 0.291; 95% CI 0.152 to 0.557; P<0.01). When only those who provided long-term follow-up care to their own patients were considered, there was no significant difference between adult and pediatric gastroenterologists regarding whether gastroenterologists should be involved in providing long-term follow-up; however, the differences regarding involvement of internists/pediatricians and family doctors remained significant.
Long-term follow-up: Who is involved?
Gastroenterologists who reported that they provide long-term follow-up care routinely to their patients with celiac disease were asked who was involved in providing this care. Overall, three-quarters of participants indicated that the patient’s primary care physician and specialist gastroenterologist were always involved and one-half always involved a dietitian. Only 1% always involved a psychologist. One individual reported involving members of the local celiac association in follow-up.
Pediatric follow-up was generally more multidisciplinary, with 29% almost always involving a nurse (versus 2% of adult gastroenterologists; OR 18; 95% CI 4.8 to 68; P<0.01) and 81% almost always involving a dietitian (versus 43% of adult gastroenterologists; OR 5.8; 95% CI 2.5 to 13; P<0.01). Pediatric gastroenterologists were less likely to involve the primary care physician (55% versus 70%; OR 0.322; 95% CI 0.155 to 0.670; P<0.01). These differences were independent of practice type.
The role of specific team members was not elicited; however, gastroenterologists were asked who reviewed the gluten-free diet with patients if they were followed. More than three-quarters involved a dietitian and this did not vary appreciably between adult and pediatric practitioners, or between those who did and did not provide long-term follow-up. The highest rate (81%) was reported among pediatric gastroenterologists who provided long-term follow-up, and the lowest rate (76.1%) was among adult gastroenterologists who provided long-term follow-up. The rate of gastroenterologist participation in diet review was much more variable. The overall rate was 44.9% and did not vary significantly between adult and pediatric practitioners. Nearly one-half of those who provided long-term follow-up reviewed the diet with their patients. The lowest rate of gastroenterologist involvement in dietary review (30.2%) was among adult gastroenterologists who did not provide long-term follow-up.
Gastroenterologists with a primarily academic practice were significantly more likely to involve a gastroenterologist in follow-up care (83% versus 62%; OR 2.9; 95% CI 1.4 to 6.3; P<0.01). None of the private practices involved a nurse. There was no statistically significant association between practice type and involvement of dietitians in follow-up care. The rate of involvement of primary care physicians varied significantly across regions (82% West, 65% Central and 94% East; P<0.01), but the involvement of other team members did not.
Long-term follow-up: What is involved?
Most gastroenterologists (67%) provided long-term follow-up care in the form of an annual clinic visit, whereas 19% provided care during the first year only. Several respondents indicated that they provided more frequent follow-up in the years following the diagnosis. Most (72%) provided similar follow-up to patients with silent celiac disease. A single approach to symptomatic and asymptomatic patients was significantly more common among pediatric (86%) than adult (67%) gastroenterologists (OR 2.9; 95% CI 1.1 to 7.4).
The details of provision of various elements of long-term follow-up are summarized in . The majority of gastroenterologists surveyed almost always measured the patient’s weight and height (72%), and performed a physical examination (78%). The patient’s diet was reviewed (76%), the need for adherence was reinforced (90%) and membership in an advocacy group was recommended (65%).
Elements of long-term follow-up of celiac disease
Investigations commonly requested included serology (65%), a hemoglobin level or complete blood count (83%), ferritin (65%), albumin (64%), calcium (50%), liver transaminases (60%) and alkaline phosphatase (51%). A dual-energy x-ray absorptiometry (DEXA) scan was almost always included in follow-up by 52% of respondents. Of the 48 individuals who used EMA and/or antigliadin antibody serology in long-term follow-up, 47 used tTG as often or more often than EMA/antigliadin antibody; therefore, serology in the present article refers to tTG.
When comparing the responses of the two types of gastroenterologists, pediatric specialists were significantly more likely to measure patient weight and height (P<0.001). The adult gastroenterologists were much less likely than pediatric gastroenterologists to measure body mass index and perform a physical examination (). As with the entire population of gastroenterologists, adult gastroenterologists who follow their celiac disease patients were much less likely to follow serology (OR 0.28; 95% CI 0.12 to 0.69). Adult gastroenterologists were more likely to follow folate (OR 4.3; 95% CI 1.8 to 10), ferritin (OR 2.6; 95% CI 1.3 to 5.3) and calcium levels (OR 3.8; 95% CI 1.8 to 8.1) and to order DEXA scans (OR 6.8; 95% CI 2.9 to 16).
Participants were given the option of indicating whether they included follow-up investigations as part of long-term follow-up of patients with celiac disease ‘almost always’, ‘only if previously abnormal’, ‘if symptoms recur’ or ‘almost never’. Many respondents almost never monitor vitamin A (33%), B12 (18%), D (28%) and E (41%) levels. Parathyroid hormone and thyroid-stimulating hormone levels were almost never tracked by 39% and 17% of respondents, respectively. Serology was almost never repeated in follow-up by 8.8% of respondents. Divergence between adult and pediatric practices was most evident for DEXA scanning, which 62% of adult gastroenterologists almost always included compared with 19% of pediatric gastroenterologists. Nearly one-half (45%) of pediatric gastroenterologists almost never ordered DEXA scans during follow-up. Similarly, calcium levels were almost always monitored by 57% of adult gastroenterologists and almost never by 26% of pediatric gastroenterologists.