Dietary management of IBD: The patient’s perspective and bridging the clinician-patient divide
Dearbhaile O'Hanlon, D-ECCO Member
“One cannot think well, love well, sleep well, if one has not dined well.” ― Virginia Woolf
Unfortunately for many of our patients, dining well is often not an option since their disease symptoms give rise to wariness about the foods they eat. Patients are forced to consider how they may feel after a meal and to take into account their requirement for toilet facilities and ability to cope with pain. They often forego social eating to manage these aspects. This can negatively impact their social interactions, daily activities and food-related quality of life . Coupled with this, patients with IBD have higher rates of depression and anxiety  and a higher incidence of behavioural, psychological and eating disorders . Self-directed food exclusions can trigger these disorders and lead to higher nutritional risk. We need to be mindful of this when addressing diet and nutrition with our patients. It is important that we consider the implications of asking patients to modify their diets for disease or symptom management while taking into account their desire to use diet as a tool to manage their disease.
Multiple surveys have asked both patients and clinicians about their perceptions of diet and IBD. In a French survey, 48% of patients felt that diet could be the initiating factor in IBD and nearly 50% reported the disease had changed their pleasure in eating . Limdi et al., in the United Kingdom, showed that 57% of patients felt diet could trigger a flare, but 50% reported that they received no formal dietary advice and two-thirds requested further dietary advice . An Australian study found that over two-thirds of patients assume what they eat affects their IBD, while 61% felt their clinicians disregarded the importance of diet. Most of the gastroenterologists (98%) felt they were providing dietary advice but only 26% of the patients reported receiving diet advice from their specialists . In the Netherlands, a questionnaire highlighted that nearly 60% of patients felt nutrition to be at least as important as medication, and a larger number believed that diet influenced the disease course more than medicine . An American survey and focus group of IBD providers highlighted that only 41% of providers felt they had a “very good knowledge” of nutrition in IBD; 46% reported inadequate access to nutritional resources to initiate and guide discussions with patients. In their focus groups they also admitted that there was a knowledge gap, with even the dietitians acknowledging that they may not have specialist training for IBD patients. Moreover, restrictions on insurance coverage often precluded access to dietetic input .
If patients do not receive evidence-based advice specific to their disease from their IBD multidisciplinary team (MDT), they will seek it out themselves. We know that patients will turn to the internet to get more information [9, 10]. The non-specific nature of this advice and lack of robust evidence can lead to inappropriate dietary behaviour, over-restriction, increased nutrition risk and further negative impact on quality of life.
The diets most commonly used to manage IBD all involve varying degrees of food restriction. Exclusive enteral nutrition allows no food for a period of up to 8 weeks. It is very safe and effective in managing inflammation in both paediatric and adult Crohn’s Disease, while it has been shown to improve newly diagnosed patients’ quality of life to the same extent as standard treatment . Many patients report they would do another course if required but think a solid food diet would be better . The social and psychological impact of undertaking the diet and the food-related quality of life have not been fully assessed. The more recent Crohn’s Disease Exclusion Diet (CDED) provides a whole-food alternative to exclusive enteral nutrition for management of active Crohn’s Disease but also requires long-term restriction and adaption of normal diet. For stricturing Crohn’s Disease and symptom management, we often ask our patients to modify their dietary fibre. This leaves many patients feeling their diet is unhealthy and that it is contributing to their overall poor health. In quiescent IBD, if patients have functional symptoms we may ask them to follow a low FODMAPs diet to identify their food triggers. The first phase of this diet involves restricting many grains, fruits, vegetables and, in many cases, lactose. Adequate education, resources and supervision are again required to ensure that nutritional requirements are being met, that the diet is being complied with adequately and that the diet is followed by food reintroduction. We need to better understand the burden and long-term impact of doing these diets. Ideally this should be the role of the specialist trained dietitian. Unfortunately, specialist dietitians are not always available within the IBD MDT.
So how do we safely bridge the gap between patients’ desire for dietary-based treatments and the limited dietitian access and knowledge gaps within the MDT?
Development of international, national and local guidelines and protocols for dietary management would be helpful in guiding decision making and allowing a consistent standard of care which could be audited and monitored (e.g. AuSPEN group EEN pathway) . However, this would not supersede the need for well-trained dietetic expertise. Dietitians should be responsible for nutrition training within their local IBD MDT and should lead on the implementation and supervision of therapeutic diets. Unfortunately, we know that not all centres have access to dietetic expertise and that funding may not be a priority. However, the role of diet in IBD management cannot be overlooked. Therefore it is the responsibility of senior MDT members to highlight the clinical and funding need.
Patients often implement restrictive popular diets that currently lack evidence of efficacy and have the potential to reduce energy and other nutrient intake . Further research into the safety and efficacy of such diets is required and findings need to be critically appraised prior to use of a diet in standard practice, particularly if patients need to implement long-term dietary restrictions. Further research into the psychosocial and quality of life impact of diet therapy is also required. This will help ensure adequate provision of specialist dietetic and MDT support for patients who are often already under more psychological strain than the rest of the population.
IBD dietary management is not part of core dietetic training in many countries, but ECCO, D-ECCO and N-ECCO offer multiple resources and opportunities for specialist education for dietitians and the MDT. The annual N-ECCO School reserves ten places for dietitians, the annual D-ECCO Workshop is a perfect opportunity for further specialist education and networking, and the D-ECCO Topical Reviews, Talking Heads and e-Learning modules all provide further depth of learning. Promoting local/national IBD conferences, training courses and symposia to the wider MDT, including dietitians, will allow further specialist education and insight.
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