Patient Education for People with Irritable Bowel Syndrome
patients completed a questionnaire aimed at revealing the practical consequences of living with IBS. The patients felt that IBS affected all aspects of their lives and that they would have coped better with their symptoms if they had been provided with more information about IBS. In particular, they wanted to know more about possible causes and treatment and they also wanted greater sensitivity from members of the healthcare system in terms of their management.29
IBS patients and significant others were interviewed in a study aimed at exploring the patient perspective of IBS. The patients perceived that their symptoms were not taken seriously, and the diagnostic work up was frustrating for many of them. They therefore felt a need for more information about their disorder. Even though many patients shared their knowledge of the illness with relatives and friends, many expressed a need for support groups that would provide the opportunity to share experiences and concerns with other patients.10
O’Sullivan and co-workers performed a study including IBS patients and IBD patients. Comparisons between these two groups demonstrate that 77% of the IBS patients needed information about their disease compared with 56% of the IBD patients. The IBS patients primarily wanted information about the risk of bowel cancer and dietary issues, whereas IBD patients required information about medications, prognosis and cancer risk. Moreover, 27% of the IBS patients and 10% of the IBD patients rated their knowledge about their disease as <25 out of 100 on a visual analogue scale.11
Focus groups have been used to reveal the patient perspective on how IBS affects their daily life and their interactions with physicians and the healthcare system. Interaction with the healthcare system was seldom perceived to provide understanding of the condition or to improve its management. Frustration was evident in the perceived inability to control and/or prevent symptoms, identify triggers and obtain medical validation of the condition. Withdrawal from social activities resulting in isolation was common.30
Moreover, as a first step to develop a self-care guidebook for patients with IBS, Kennedy and co-workers used focus groups to explore patients’ knowledge and experience of IBS. One finding that emerged during the study was the benefit that the patients felt from meeting and talking with others in the same situation. Few patients were aware of the UK self-help group, but once they knew about the self-help group they were interested in finding out more about it.31 The knowledge, fears and concerns of IBS patients have been evaluated, demonstrating that many patients have misconceptions about the causes, diagnostic work-up and prognosis of IBS. The vast majority of the patients believed that IBS develops because of anxiety, dietary factors and depression. Almost half of the patients thought that colonoscopy would diagnose IBS, 14% believed that IBS turns into cancer and 30% believed that it increases the risk of IBD.32
Similar
findings are demonstrated from another study, including 1,242 IBS patients, where a substantial number of the patients believed that IBS is caused by a lack of digestive enzymes, that it is a form of colitis or can develop into colitis or that it could cause malnutrition or cancer. These patients were mainly interested in learning about foods to avoid, causes of IBS, coping strategies, medications and if they would have to live with IBS for the rest of their lives.33
Two recent qualitative studies have investigated the patients’ explanatory models34
EUROPEAN GASTROENTEROLOGY & HEPATOLOGY REVIEW as well as the general practitioners’ (GPs’) explanatory models.35 The explanatory models for disease are notions
about an illness, addressing such questions as aetiology, pathophysiology, illness course and treatment. Both the patients and the GPs felt frustration regarding the management of IBS, but there were differences between the explanatory models of the patients and the GPs. The authors conclude that explaining the diagnostic work-up and treatment options to the patients is important, and would probably enable the patients to make sense of the diagnostic and treatment processes. It is also important to match the medical interventions with the patients’ perception of the disease.
Based on these studies, there certainly seems to be a need for more appropriate management of IBS patients, including information/ education. It also seems evident that many patients appreciate meeting and discussing IBS-related issues with other people who share the same negative impact of IBS symptoms in daily life.
Experiences of Patient Education/ Information in Irritable Bowel Syndrome Various patient educational programmes have been evaluated in IBS. One of the first studies compared the effects of an individual cognitive- based treatment (CT) with those of a self-help support group (SG). The aim with the SG was to give the patients an opportunity to share experiences and thoughts with each other in the group, which is why it was performed with very little didactic information. There was also a waiting list control group. The efficacy of the interventions was evaluated with questionnaires covering GI symptoms, psychological distress, cognitive measures and daily stressors at three months compared with baseline. The GI symptoms were most clearly improved in the CT group, followed by the SG group. Although the greatest improvement was seen in the CT group for all measures, the patients who participated in the SG appreciated taking part in a support group.36 Patient education has also been used as a control condition in a study evaluating the effects of cognitive behavioural therapy. This educational intervention was performed in 12 weekly individual sessions and the results showed that cognitive behavioural therapy was more effective than education.37
An IBS programme has also been
evaluated in IBS patients managed in a private gastroenterology practice. This programme was administered by a GI nurse under a physician’s direction and consisted of half-hour educational individual meetings with the nurse. The number of visits depended on the needs of the individual patient. The majority of the patients reported symptom improvement after the programme, and they also rated their job and social functioning as improved.38
Alternatively, patient education can be offered during regular visits to the healthcare system. The development and implementation of guidelines aimed at improving the management of IBS patients in primary care has been presented.39
A Norwegian study demonstrated
that by using a general therapeutic approach (including reassurance, explanations and dietary advice) in meetings with the patient, abdominal symptoms could be reduced. All consultations included a thorough explanation about IBS from a doctor and dietary advice from a dietician.40
Schmulson and co-workers showed that a
single session of reassurance can improve the self-perception of impairment in patients with IBS. Patients who had been referred to a gastroenterologist were given a thorough explanation of the disease and reassurance during their first consultation. Questionnaires covering abdominal pain, fear of cancer, impairment in daily function and symptom stressfulness were completed by the patients before
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