The Development and Evaluation of a Nurse led Food Intolerance clinic in Primary Care
FINAL REPORT (BRIEF) January 2009
A copy of the Final Report (Executive Summary) can be downloaded here.
Authors: Jane Ogden, Joe Pope and Mia Nelson, Department of Psychology, University of Surrey
Funding Body: Foundation for Allergy Information and Research (FAIR)
Ethics committee: NHS MREC approval
Literature Review
The following can be concluded from existing research and discussion papers:- There are several and often contradictory ways of defining food intolerance which vary in their emphasis on underlying mechanisms and the symptom experience.
- Diagnosis of food intolerance is therefore problematic and requires a detailed patient history. Other more objective tests are not always appropriate for food intolerance.
- The symptoms of food intolerance can occur after a period of time has past after any food has been consumed.
- Symptoms are various but include headaches, fatigue, stomach and bowel problems and skin problems.
- Although food intolerance can be caused by any food, common culprits are those foods which are most commonly consumed and are often wheat and dairy based.
- The only treatment for food intolerance is the detection and avoidance of culprit foods.
- Estimating the prevalence of food intolerance is problematic due the different definitions used.
- To date there are no Primary Care based specialist services available for those suffering from perceived food intolerance.
The focus of the current project was as follows:
- To define food intolerance using a pragmatic approach with a focus on patient symptoms.
- To focus on an individual's perception of food intolerance and their symptom experience.
- To assess the prevalence of perceived food intolerance in a community sample.
- To develop and evaluate a nurse led food intolerance clinic based in Primary Care.
- To explore patients' experiences of living with a food intolerance
- To explore patients' experiences of a nurse led service in Primary Care.
- To explore General Practitioners' beliefs about food intolerance.
The project therefore consisted of five studies as follows:
- A community survey in four UK General Practices of the prevalence of perceived food intolerance and food allergy and an assessment of the need for a food intolerance clinic.
- The development and evaluation of a nurse led primary care food intolerance clinic in 4 General Practices.
- An assessment of patients' experiences of living with a food intolerance.
- An assessment of patients' experiences of the clinic.
- An assessment of GPs beliefs about food intolerance.
Study 1
A community survey in four UK General Practices of the prevalence of perceived food intolerance and food allergy and an assessment of the need for a food intolerance clinic.
Overview
Background: Adverse reactions to food are becoming an increasingly common presentation in Primary Care.
Aim: To assess the prevalence and characteristics of perceived food allergy (PFA) and perceived food intolerance (PFI) in a community sample and to assess the need for a food intolerance clinic
Design of study: A cross-sectional design
Setting: Four General Practices across the UK.
Methods: Questionnaires concerning demographics, PFA and PFI, symptoms and help seeking were completed by 2384 patients in Primary Care (response rate=37%). Results: The overall prevalence for PFA was 17.7% and for PFI was 33.5%. In terms of demographic differences those with PFA or PFI had a significantly higher educational level and were younger. Women were more likely to report any adverse reaction to food than men and a higher proportion of non white participants reported PFA than PFI. Those with PFA only were more likely to report mouth symptoms, and skin reaction, whereas those with PFI were more likely to report bowel symptoms. The majority with either PFA or PFI reported food avoidance although this was higher for those with PFA. Only a minority had been tested and a large majority who reported symptoms expressed a need a for a clinic based in primary care (70%).
Conclusion: Both PFA and PFI are common conditions which may result in food avoidance. A focus on symptoms differentiates between these two conditions. There appears to be a need for a clinic based in primary care.
Study 2
The development and evaluation of a nurse led food intolerance clinic based in Primary care
Overview
Background: Study 1 identified a need for a nurse led food intolerance clinic in Primary Care.
Aims: To develop and evaluate such a clinic.
Development: Following discussions with experts and evaluation of the literature a clinic was developed involving a five week programme that could be administered by Practice Nurses with minimal previous experience of dietary change or food intolerance.
The clinic: The clinic consisted of 1 week baseline, 2 weeks healthy eating plan (HE), 2 weeks wheat and dairy free plan (WD). Patients were discharged after the healthy eating plan if their symptoms were deemed to have improved. Otherwise they continued onto the wheat and dairy free plan.
The nurses: Four nurses were employed for 24 months and following structured training ran clinics in 4 practices in South London, Glasgow, Norfolk and Birmingham.
Results: 281 patients were recruited into the clinic. 150 completed the programme. The most common symptoms were bowel symptoms, tiredness, stomach symptoms, and headaches. The majority were discharged after the HE plan as their symptoms had improved (n=106, 70.6%). A third completed the WD plan (n=44, 29%). Over 70% of patients reported an improvement in their symptoms on all symptom measures from baseline to the end of the intervention. The majority of patients also showed an improvement in their mood and health status. Those who progressed onto the WD showed added value as their symptoms improved from the end of the HE plan to the end of the WD plan.
Conclusion: There was a need for the clinic. The intervention was effective at improving a number of different symptoms. The majority responded to the HE plan. Those who progressed to the WD plan showed added benefit.
Study 3
Patient experiences of having food intolerance:A qualitative study
Overview
Background: A large minority of the population believe that they have a food intolerance.
Aims: To explore how they experience living with a food intolerance.
Design: A qualitative study with in depth telephone interviews.
Participants: 10 men and women who attended the food intolerance clinic and believed they had a food intolerance were interviewed about their experiences.
Results: Participants described their symptoms in detail and illustrated the severity and duration of their problem which were shown to impact upon their psychological and social lives. They described their symptoms as confusing and they searched for meaning by trying to find a cause. They had sought help from a number of sources to try and find out what was causing their problem. One source of help had been their GP. At times the GPs was described as helpful, but some participants described feeling that the legitimacy of their symptoms had been questioned.
Conclusion: The symptoms resulting from a perceived food intolerance are unpleasant and confusing. GPs are not always supportive of patients. Patients therefore need support and help to find the cause of their problems.
Study 4
Patient experiences of the food intolerance clinic: A qualitative study
Overview
Background: Study 2 involved the development and evaluation of a nurse led food intolerance clinic in Primary care.
Aims: To explore patients' experiences of this service.
Method: A qualitative design with in depth telephone interviews.
Participants: 10 men and women who had attended the clinic and shown improvement were interviewed about their experiences.
Results: Patients attended the clinic because they wanted to identify which foods were causing their symptoms. This need was met as many identified individual culprits which they could avoid. For others however the clinic simply enabled them to reflect on their diet and adopt a more healthy eating plan. The nurse played a central part in these changes as they could offer advice, support and time.
Conclusion: The clinic helped to bring about a change in patients symptoms by identifying a cause to their problem, helping them to reflect upon their eating habits and by offering them time and support.
Study 5
General Practitioners (GP) beliefs about food intolerance.
Overview
Background: People who believe they have a food intolerance increasing seek help from their GP in the absence of any specialist services.
Aims: To explore GPs' beliefs about food intolerance.
Method: A qualitative design with in depth interviews.
Participants: 17 GPs were interviewed about their beliefs about food intolerance.
Results: The GPs in the present study understood food intolerance within a spectrum of conditions relating to three dimensions: clinical importance, authenticity of the patients' experience and the ease that they would have in making a diagnosis. They preferred not to use the term food intolerance but saw it as a dustbin diagnosis that could be used when all other possible diagnoses had been ruled out. Using the term, even though were sceptical about it, helped them to maintain their relationship with the patient.
Conclusions: GPs are sceptical about food intolerance but use the term when all other diagnoses have been ruled out and to maintain a good relationship with their patients.
Overall conclusion
The results show that a substantial minority of the population believed that they have a food intolerance and expressed a need for a clinic in Primary Care. The study developed a nurse led service for Primary Care that could be run by Practice Nurses who had minimal experiences of dietary change and / or food intolerance if offered some structured training. The service involved a 5 week programme offering a healthy eating plan followed by a wheat and dairy free plan. The clinics attracted an acceptable level of interest from the practices' populations. The majority showed improvement in their symptoms following the healthy eating plan. A third progressed to the wheat and dairy plan and showed added improvement. The clinics seemed to work by enabling patients to identify a cause of their problems in the form of a specific culprit food or to adopt a more healthy diet in general. Patients also benefited from the use of a diary and the time they spent with the nurse. GPs may be sceptical of the concept of food intolerance but are willing to use it when all other diagnoses have been ruled out, if they are confident that the patient will be managed appropriately and as a means to maintain a good doctor patient relationship.
Address for correspondence:
Jane Ogden Professor in Health Psychology
Department of Psychology
University of Surrey
Guildford
GU2 7XH
Email: Contact Jane Ogden via email
Tel: 01483 686929
Acknowledgements
The authors are grateful to Sarah Abbott, Julie Pittaway, Frances Marshall and Oluwayemisi Fagbeja for running the clinics and collecting the data and to Joan Manning for clinical support. They are also grateful to members of the steering committee for their help with setting the project up: Professor Roger Jones, Professor Norman Staines, Dr Joe Rosenthal and Dr Mark Ashworth. Finally they wish to thank Hazel Clayton from FAIR for her ongoing interest and support with the project.