Abstract
Objectives
Dietary therapy is often used in the management of children with inflammatory bowel diseases (IBD). Nevertheless, appropriate dietetic support and resources are not universally available, potentially leading to variable practices. This survey aimed to describe contemporary dietary practices and resourcing across IBD member centers of European Society of Paediatric Gastroenterology Hepatology & Nutrition (ESPGHAN).
Methods
An anonymous 33‐item questionnaire survey on nutritional care and dietetic resources was circulated to the Porto Group and IBD Interest Group of ESPGHAN in November 2023.
Results
We obtained responses from 63/145 (43%) physicians from 31 countries. Fifty‐four (86%) physicians, routinely use exclusive enteral nutrition (EEN) for induction of remission, 26/63 (41%) partial enteral nutrition (PEN) for maintenance of remission and 28 (44%) implement food‐based dietary therapies, the most popular being Crohn's Disease (CD) exclusion Diet coupled with PEN 36 (61%). Notably, 41 (65%) reported offering dietary counseling for active CD compared to 20 (32%) for ulcerative colitis (UC, p = 0.005). Availability of a dietitian varied between centers, with 13 (21%) rarely or never having a dietitian available. Among sites where a dietitian was always or mostly available, 93% used EEN compared to 70% of sites where a dietitian was less available (p = 0.028). Access to dietitians was reported for 31% of CD patients in lower‐income countries versus 66% in high‐income countries (p = 0.015). Over 50% of CD patients sought dietary advice, compared to 41% of UC patients (p < 0.001).
Conclusions
We identified variable practices in nutritional therapy and dietetic resources among pediatric IBD centers. Addressing these challenges will improve IBD therapy and integrate nutritional therapies in the multi‐disciplinary care of these patients.
Keywords: Crohn's disease, dietary therapy, exclusive enteral nutrition, multidisciplinary care, ulcerative colitis
What is Known
Nutritional therapy is effective for Crohn's disease but may not be universally accepted or available.
Differences in healthcare systems affect access to dietitians and the use of dietary interventions.
Standardized guidelines for dietetic therapy and nutritional support in inflammatory bowel diseases (IBD) remain limited.
What is New
This survey highlights variations in dietetic resources and nutritional practices across European Society of Paediatric Gastroenterology Hepatology & Nutrition (ESPGHAN) centers.
The use of dietary therapies, including exclusive enteral nutrition (EEN) and Crohn's Disease Exclusion Diet is common, particularly where dietitians are available.
Lower‐income countries have less access to dietitians than high‐income countries.
Variability in dietetic support is associated with the use of EEN and dietary counseling, emphasizing the need for universally agreed guidelines.
1. INTRODUCTION
While in several conditions, dietary counseling and nutritional support serve predominantly as supportive means for nutritional rehabilitation, 1 in Crohn's disease (CD), nutritional therapy, particularly exclusive enteral nutrition (EEN), additionally plays a pivotal role in the management of active disease 2 , 3 (Figure 1). This multimodal role of nutrition in inflammatory bowel disease (IBD) has been increasingly recognized and documented in the literature and quality indicators of health care emphasize the inclusion of dietitians as integral members of the IBD multidisciplinary team. 4 , 5 , 6 , 7 , 8
Figure 1.
The growing influence of diet and dietitian in IBD management. CDED, Crohn's disease exclusion diet; IBD, inflammatory bowel diseases; SCD, specific carbohydrate diet.
Despite this growing recognition of the importance of the integral role of diet in the management of paediatric IBD, practice variation related to nutritional care and dietetic resourcing remain poorly documented across Europe and beyond. 9
The objective of this survey was to evaluate current practices and resources in nutrition care in European Society of Paediatric Gastroenterology Hepatology & Nutrition (ESPGHAN) members paediatric hospitals. We sought to establish a baseline which will serve as benchmark for future initiatives aiming to enhance and set minimal standards for nutritional care in ESPGHAN member paediatric hospitals as well as identifying gaps in resources. This survey builds on previous international research 10 , 11 by specifically evaluating dietetic resourcing, patient access to dietitians and patient support systems, and socioeconomic disparities in pediatric IBD nutrition care. The aim was to benchmark not only clinical practices in Europe and beyond, but also the underlying infrastructure that supports the delivery of nutritional therapies. Although this paper is produced by the ESPGHAN Porto Group and IBD Special Interest Group it does not necessarily represent ESPGHAN policy and is not endorsed by ESPGHAN.
2. METHODS
2.1. Ethics statement
As this study involved an anonymous survey of healthcare professionals and did not include any patient data, formal ethics approval was not required, according to guidance from the Research Governance Office at the University of Glasgow.
2.2. Study design
This study employed an anonymous questionnaire survey distributed exclusively to physician members of the Porto Group and the IBD Special Interest Group of the European Society of Paediatric Gastroenterology Hepatology and Nutrition. The questionnaire, created using Google Forms, was distributed via email to all registered physician members of both groups in November 2023 and was available for 1 month, with three consecutive email reminders. To minimize duplication, if two or more members were employed at the same hospital, only one was asked to complete the survey, which may have contributed to the overall response rate.
The 33‐item questionnaire was developed by two Porto Group members, academic dietitians with clinical and research expertise in the management of patients with IBD (Supporting Information: File 1). Questions were selected based on their relevance to the study objectives including key aspects on nutritional care, level of dietetic resourcing and use of dietary therapies in the management of paediatric IBD. The draft questionnaire was reviewed and amended by the steering committee of the Porto IBD Group and the final draft was evaluated and revised based on feedback received from four independent academic expert IBD dietitians to ensure appropriateness and face validity.
2.3. Statistical analysis
Descriptive statistics were used to present data. Chi‐squared tests or Fisher's exact test (where appropriate) were used to test statistical significance for categorical variables between groups. For the purpose of analysis, upper‐middle and lower‐middle income countries were grouped together to gain statistical power and also assuming that such countries may share more similar resources and practices than high‐income countries. Statistical analysis was performed with IBM SPSS Statistics software (Version 25.0, Armonk, NY: IBM Corp).
3. RESULTS
3.1. Participants characteristics
We obtained responses from 63 out of 145 registered members (43%) from 31 countries, including 26 European countries (Figure 2 and Supporting Information: Table 1). Respondent characteristics are presented in supplementary figures, including the size of the local catchment population (Supporting Information: Figure 1), the current number of pediatric IBD patients under care (Supporting Information: Figure 2), and the clinical settings in which IBD care is provided (Supporting Information: Figure 3). We divided the countries into two categories based on their income economies: high‐income versus upper‐middle and lower‐middle income economies based on the World Bank annual updates (Figure 2 and Supporting Information: Table 1).
Figure 2.
Countries participating in the survey and classification by income level.
3.2. Dietetic staff resourcing
Dietetic staff resourcing Among the responders, 46% reported having one full‐time equivalent (FTE) dietitian, 22% had less than one FTE, 16% had two, and 8% had three FTE dietitians. When adjusting the FTE number for the number of IBD patients under care, smaller centers tended to have a higher FTE‐per‐patient ratio than larger centers (p = 0.068), suggesting better dietitian availability in smaller settings.
In sites with at least one FTE dietitian, 48% of CD patients received dietary advice for preoperative optimization, compared to only 22% at sites with less than one FTE (p = 0.052). Similarly, 93% of sites with more than one FTE dietitian used EEN as part of their treatment strategy, compared to 55% of sites with less than one FTE dietitian (p < 0.001). For maintenance of remission, 55% of sites with at least one FTE dietitian used Crohn's Disease Exclusion Diet and Partial Enteral Nutrition (CDED + PEN), while only 27% of sites with less than one FTE employed this dietary therapy (p = 0.046).
Regarding dietitian availability to review patients, 25% reported always having a dietitian available, 32% most of the time, and 21% rarely or never. Among sites with a dietitian always or mostly available, 93% used EEN for CD patients compared to 70% of sites with more limited availability (p = 0.028). For maintenance of remission, 47% of sites with frequent dietitian availability used CDED alone, compared to 22% in sites with less frequent access (p = 0.041).
Overall, 84% reported that dietitians were solely funded by the hospital, with 71% noting dietitians were part of the dietetic department and 21% as part of the gastroenterology department. Team meetings with dietitian attendance were reported by 32%, while active dietitian participation was reported by 35% of respondents.
3.3. Patient support systems for dietary advice and care
From those responded to the survey, 89% reported having a support system in place for patients for dietary advice, with 66% providing a telephone line to contact dietitians, 59% offering email support, 34% utilizing the Modulife app, and 32% using mail or phone communication with the team.
3.4. Reimbursement of EEN therapy
Among sites where the cost of EEN was fully covered, 94% utilized EEN, compared to 70% using EEN at sites where it was only partially covered or not covered at all (p = 0.01). Reimbursement refers to the cost of the enteral nutrition formulas (e.g., EEN, PEN) by health services or insurance.
3.5. Dietary treatments for IBD
Eighty‐six percent of respondents indicated routine use of EEN for induction of remission, while 40% used PEN without a food‐based diet during maintenance, and 44% implemented food‐based dietary therapies (Figure 3A). Among those using dietary therapies for active disease, 61% employed CDED alongside PEN, and 37% used CDED alone (Figure 3B). For maintenance of remission, 45% adopted CDED + PEN, 40% used CDED alone, 25% recommended a Mediterranean‐type diet, and 25% did not recommend any dietary therapy (Figure 3C). Additionally, 58% reported full and 26% reported partial reimbursement of formula used with EEN or PEN.
Figure 3.
(A) Routine use of nutritional treatment options. (B) The use of elimination diets for active disease. (C) The use of elimination diet for maintenance of remission. CD, Crohn's disease; CDED, Crohn's disease exclusion diet; EEN, exclusive enteral nutrition; FODMAP, fermentable oligosaccharides, disaccharides, monosaccharides and polyols; MD, Mediterranean diet; ONS, oral nutritional supplements; PEN, partial enteral nutrition.
3.6. Provision of dietary advice by physicians
Provision of dietary advice by survey respondents varied according to the type of IBD (Figure 4A). Notably, 65% of physicians reported offering dietary advice for active CD compared to 32% for ulcerative colitis (UC) patients (p = 0.005). Similarly, 62% provided dietary advice for maintenance of remission in CD, while only 17% did so for UC (p = 0.018). Additionally, 48% offered dietary advice for preoperative CD patients, compared to 27% for preoperative UC patients (p < 0.001). Almost two‐thirds (62%) of respondents reported offering dietary advice for overnutrition, with no difference between CD and UC. Likewise, 82.5% provided dietary advice for undernutrition in CD compared to 71% in UC, with no significant difference. General dietary recommendations (CD: 76% vs. UC: 73%) and dietary advice for IBS‐like symptoms (CD: 40% vs. UC: 41.3%) also showed no significant differences between CD and UC.
Figure 4.
Differences between Crohn's disease and ulcerative colitis. (A) Provision of dietary advice to the management of inflammatory bowel diseases. (B) The percentage of patients that are seen by dietitians in CD versus UC. (C) Families/patients asking for dietary advice. CD, Crohn's disease; IBS, irritable bowel syndrome; NS, not significant; UC, ulcerative colitis.
Sixteen percent of survey responders reported that all patients with CD are also referred to a clinical dietitian, compared to 19% for UC. For CD, 38% said that dietitians see over half of their patients, versus only 17% for UC (p < 0.001) (Figure 4B). Conversely, 35% indicated that dietitians see fewer than 25% of CD patients, compared to 65% of UC patients (p < 0.001).
When analyzing responses by country income level (Figure 2 and Supporting Information: Table 1), we found that 50% of respondents in lower‐middle‐income countries reported dietitians seeing fewer than 25% of their CD patients, compared to only 23% in high‐income countries (p = 0.045). Furthermore, 66% of physicians in high‐income countries reported that patients had access to a dietitian always or most of the time, versus 31% in lower‐income countries (p = 0.015).
Notably, 57% of responders reported that over half of CD patients or their families seek dietary advice, compared to 41% for UC (p < 0.001) (Figure 4C). In contrast, 32% said that fewer than 25% of UC patients or families sought dietary advice, compared to only 17% for CD patients (p < 0.001).
3.7. Nutritional assessment
Responders were asked which nutritional assessment methods they routinely use. Almost all reported measuring body weight (98%) and height (92%), while fewer measured BMI at every patient visit (78%) (Supporting Information: Figure 4). Growth charts were consistently used by 90% of respondents, and 71% conducted additional nutritional status assessments. Among them, 83% assessed recent weight changes, 91% measured albumin as a nutritional biomarker, 52% evaluated dietary changes, and 76% considered pubertal staging. Nearly two‐thirds reported assessing height velocity (59%) and routinely measuring vitamin D and iron status (61%) or other micronutrients.
Measurement of height velocity was significantly more common in academic hospitals (70%) than in public hospitals (35%) or combined academic/public institutions (35%) (p = 0.039). Fewer than a fifth of responders measured mid‐upper arm circumference (15%) or body composition (13%) (Supporting Information: Figure 5). Malnutrition screening tools were used by 29% of respondents, and among them, 72% used STRONGkids. Notably, 82.5% indicated the need for developing a specific nutrition screening tool for pediatric IBD. No other differences were observed by country or between large and smaller healthcare facilities (data available on request).
4. DISCUSSION
This survey provides important insights into the current practices of dietary management of patients with pediatric inflammatory bowel disease across a wide range of different countries. It highlights variations in the use of different dietary therapies, nutritional assessment and dietetic resources.
According to current guidelines, EEN is the recommended first‐line therapy for induction of remission in CD. 2 , 6 The results of our survey showed reassuringly that current practices align to these recommendations, with most respondents reporting using EEN. In addition, our findings complement those of Bronsky et al., who surveyed over 100 pediatric IBD centers worldwide and reported widespread use of EEN as first‐line therapy in pediatric CD, while also noting that EEN was used less commonly in the USA and highlighting regional differences in treatment approaches. 12 However, it appears that a substantial proportion of centers may not be resourced to effectively offer this first‐line therapy. 10 For maintenance of remission, fewer respondents reported using PEN without dietary modifications. This may reflect the current uncertainty regarding its use and the optimal volume required to prolong disease remission. 13 A recent systematic review with meta‐analysis showed that a high volume of PEN intake ( > 50%) is more likely to be of clinical benefit in preventing disease relapse in patients who achieved remission through surgery, medical therapy, or nutritional therapy. 14
In recent years, several food‐based dietary approaches have emerged for IBD treatment, predominantly for CD. 15 , 16 , 17 , 18 Almost half of the respondents reported implementing food‐based dietary therapies, with CDED + PEN being the most common. Surprisingly, despite limited evidence, 37% reported using CDED without PEN.
Thirty‐six (61%) respondents reported frequent use of CDED (with PEN and 22 (37%) or without PEN), reflecting its growing adoption. This shift aligns with accumulating evidence and recommendations within the ESPEN guidelines, 6 , 8 although the recent ECCO consensus only recommends CDED with PEN and states there is insufficient evidence to support CDED without PEN for induction therapy. 8 The relatively high use of CDED without PEN may indicate misinterpretation of existing evidence or lack of reimbursement of enteral nutrition formula. Likewise, although there is currently no conclusive evidence to support the benefit of Mediterranean diet for maintenance of remission, a quarter of responders used this as strategy to maintain disease management. This may not be considered poor practice, especially when alternative dietary regimens are currently lacking. Moreover, evidence from association studies suggests a potential positive benefit in disease management outcomes. 18 , 19 , 20 , 21 , 22 Still, the benefit of Mediterranean diet in management of IBD may be relevant to its general cardiometabolic benefits rather than disease management. 23 , 24 Such variation in practices may reflect differences in healthcare resources, or awareness about the role of diet as therapy in IBD. In turn, this underscores the need for better evidence from well‐designed studies to support the development of evidence‐based dietary guidelines. Indeed, in the current survey we found differences in dietetic resourcing and practices between high compared to lower to upper middle countries.
Dietary therapy is more effective and widely used in CD than in UC. 5 Only recently has research started to show potential benefits for UC, though the supporting evidence remains by far less robust. 25 This lack of evidence was reflected in our survey findings, where use of dietary interventions was more frequent among CD patients, especially during management of active disease. Likewise, the carers of patients with CD expressed greater interest in dietary options compared with those carers of children with UC. Dietitian's support was markedly higher for patients with CD compared to those with UC. Collectively, this highlights the critical role of dietitians in providing dietary education and support, particularly in CD management, where diet‐based therapies are more commonly used and the evidence for their efficacy is much stronger. 5
The impact of dietitian availability was also evident in sites with at least one FTE dietitian, where use of EEN and CDED + PEN was notably higher. Increasing dietetic resources in healthcare settings may improve patient care by enabling better access to dietary therapies and dietary advice in general. In reverse, greater availability of dietitians in settings where EEN and CDED + PEN are used may be the result of their routine use in clinical practice and need for dietitians to provide support.
Patients with CD in lower‐middle‐income countries were significantly less likely to receive dietitian support. This variation may reflect broader resource constraints within healthcare systems in these regions. For example, high‐income countries reported more frequent dietitian involvement in patient care, with greater availability and integration into multidisciplinary teams. Interestingly, when adjusting the FTE number to the number of IBD patients under care, we found that smaller centers had a higher FTE per patient ratio. This suggests that dietetic resources may be more readily available in smaller settings However, this finding should be interpreted with caution, as it may be confounded by unmeasured factors such as dietitians serving multiple specialties (not solely IBD), variability in how FTEs are defined across centers, and differences in clinic structure or referral pathways. These aspects were not assessed in the current survey. In terms of clinical assessments, the near‐universal use of growth monitoring, weight tracking, and BMI evaluations suggests a strong emphasis on tracking nutritional status among pediatric IBD patients. Only a minority of respondents reported measuring body composition and mid‐upper arm circumference, highlighting potential areas for expanding nutritional assessment practices. This is especially important given consistent evidence to show that a high proportion of patients with CD present body composition features consistent with the definition of sarcopenia. 26 The limited use of body composition and mid‐upper arm circumference assessments may stem from several factors, including a lack of equipment, time constraints, their perceived lower priority or importance in patient care. Addressing such barriers could improve early identification of nutritional risk and better guide targeted interventions.
Importantly, most respondents recognized the need for a specific malnutrition screening tool tailored for pediatric IBD, which could improve the early detection of nutritional deficiencies and better guide dietary interventions.
Finally, economic considerations, specifically reimbursement for EEN and PEN, play a significant role in the uptake of dietary therapies. Nearly all sites using EEN had full or partial reimbursement, reinforcing the role of funding in dietary treatment accessibility. Policymakers and healthcare administrators should consider these findings to ensure dietary therapies are financially accessible.
A previous survey from 2003 found significant regional differences in CD management, with North American physicians favoring steroids and azathioprine, while Western Europeans preferred nutritional therapy. 11 Similarly, Jeff Critch's work highlighted that exclusive enteral nutrition, although effective, remained underused in pediatric Crohn's disease. 10 However, our study shows a shift over the past 20 years, with dietary therapies now more widely adopted, particularly in Europe, reflecting a growing recognition of their role in CD management, and aligning with trends observed in earlier surveys. 10 , 11
The main limitation of this survey is that it reflects the practices of the healthcare settings of the Porto IBD and IBD SIG. It is therefore possible that these settings are more actively involved in the management of patients with IBD. As a result, our findings may not be fully applicable to other clinical services across Europe, especially smaller centers or those outside of Europe. An additional limitation is the response rate; the overall response rate may not fully reflect the true response rate, as we requested only one physician per center to respond. Moreover, since the total number of centers in the IBD SIG is unknown, we could only assess participation based on the total number of Porto and IBD SIG members, limiting accurate response rate estimation. Furthermore, some centers may be overrepresented if multiple physicians from the same institution responded to the survey.
5. CONCLUSIONS
This study portrayed the current variation in nutritional care across Europe and beyond. We identified areas of consistent practices and others where variation exists, reflecting the need for better evidence base and more consistent dietetic resourcing. The important role of dietitians in providing nutritional care and dietary therapy is emphasized. Future quality research in this area is essential to increase awareness of the role of diet therapy as a primary or adjunct treatment for IBD and help standardize dietary care across diverse healthcare settings.
CONFLICT OF INTEREST STATEMENT
Rotem Sigall Boneh: Received funds for consulting or speaker ‐ from Nestlé Health Science, Takeda, Megapharm and Janssen; serves on advisory board for Evinature and Nestlé Health Science. 2. Javier Martín‐de‐Carpi: Honoraria for talks and advisory from Abbvie, Nestle, Merck Sharp & Dohme, Adacyte, Janssen. 3. Eytan Wine: Advisory board: AbbVie, Nestle Health Sciences, Pfizer, BioJamp; Speaker: AbbVie, Nestle Health Sciences, Janssen, Pfizer, Mead Johnson Nutrition 4. Dror Shalom Shouval: Speaker fees from Takeda. 5. Richard Russell: AbbVie, Nestle Health Sciences, Janssen, Pharmacosmos, Lilly, Celltrion Healthcare, Ferring. 6. Konstantinos Gerasimidis: Received research grants and speakers from Nestle Health Science, Nutricia‐Danone, and speaker fees from Abbvie, Bristol Myers Squibb, Janssen, Servier, Abbott, Baxter, Lilly.
Supporting information
Supplementary Figure 1: Size of the local catchment population of the IBD service.
Supplementary Figure 2: Number of pediatric IBD patients under care.
Supplementary Figure 3: Areas of clinical practice of survey respondents.
Supplementary Figure 4: Frequency of nutritional assessment approaches by survey respondents.
Supplementary Figure 5: Nutritional assessment methods used by survey respondents.
Supplemental Digital Content 1.
Supplementary table S1.
ACKNOWLEDGMENTS
We would like to thank the academic expert inflammatory bowel disease dietitians who offered advice in revising the content of the survey questionnaire: Dr. Lihi Godny, Dr Chen Sarbagili‐Shabat, Dr. Konstantinos Gkikas and Dr. Vaios Svolos This study was presented as a poster at the European Crohn's & Colitis Organisation Annual Meeting 2024 and at the European Society of Paediatric Gastroenterology, Hepatology & Nutrition Annual meeting 2024 conferences. This study did not receive any financial support.
Boneh RS, Oren N, Wine E, et al. Nutrition care and dietetic resources in pediatric inflammatory bowel disease: an initiative of the European Society for Paediatric Gastroenterology, Hepatology and Nutrition Porto Group and Special Interest Group. J Pediatr Gastroenterol Nutr. 2026;82:1233‐1241. 10.1002/jpn3.70343
[Correction added on 10 April 2026, after first online publication. Article format has been updated.]
Disclaimer: Although this paper is produced by the ESPGHAN Porto Group and IBD Special Interest Group it does not necessarily represent ESPGHAN policy and is not endorsed by ESPGHAN.
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Associated Data
This section collects any data citations, data availability statements, or supplementary materials included in this article.
Supplementary Materials
Supplementary Figure 1: Size of the local catchment population of the IBD service.
Supplementary Figure 2: Number of pediatric IBD patients under care.
Supplementary Figure 3: Areas of clinical practice of survey respondents.
Supplementary Figure 4: Frequency of nutritional assessment approaches by survey respondents.
Supplementary Figure 5: Nutritional assessment methods used by survey respondents.
Supplemental Digital Content 1.
Supplementary table S1.