Inflammatory bowel disease and complementary and alternative medicine - The perspectives of patients and healthcare professionals

Abstract: Background: Inflammatory bowel disease (IBD) is a term that covers ulcerative colitis (UC) and Crohn’s disease (CD). The causes of IBD are unknown and the incidence is increasing. IBD is a lifelong disease with severe symptoms that affect daily life and Health Related Quality of Life (HRQOL). The medical treatment for IBD is complex and many patients suffer from side effects of medication. Complementary and Alternative Medicine (CAM) encompasses methods that are not a part of conventional healthcare and not generally provided by the Swedish healthcare system. The use of CAM is increasing, especially in chronic diseases. Aim: The overall aim of this thesis was to investigate the use of CAM in patients with IBD and to explore attitudes to and experiences of CAM in patients with IBD and healthcare professionals (HCPs). An additional aim was to investigate IBD patients’ worries and disease related concerns in relation to CAM use. Study I was a controlled cross-sectional and multicentre study. The study enrolled 648 patients with IBD from 12 IBD clinics in Sweden. The control group comprised 440 individuals selected from Statens Personadressregister (SPAR). Data were collected by means of questionnaire. The results revealed that 48.5% (n = 313) of the IBD patients had used some form of CAM in the past year, compared with 53.5% (n = 235) in the control group. The most common CAM methods used by IBD patients compared to the control group were massage 21,3% vs 31,4%, herbal remedies 18,7% vs 21,3%, relaxation 10,5% vs 11,6%, yoga 8% vs 9,6%, acupuncture 7,6% vs 8,9%, counselling 7,3% vs. 6,2 and chiropractic 5,4 vs 5,7%. Study II was an interview study in which HCPs were asked to describe their experiences and attitudes to CAM. The participants were 16 physicians and nurses who had worked with IBD patients for 1-42 years. The results demonstrated that IBD nurses and physicians had confidence in and a positive attitude to CAM, especially when used as a complement to conventional medicine. The participants were of the opinion that patients considered and tested various CAM methods. They stated that CAM has a role in healthcare, which indicates acceptance. However, attitudes that constituted an obstacle to CAM were also reported, such as lack of evidence. Some participants had a restrictive approach and considered CAM unnecessary, while a few were sceptical. Study III comprised interviews in which 15 IBD patients described their experiences of CAM both alone and in combination with conventional medical treatment. It was found that patients with IBD wished to be consulted and have a discussion about CAM. They felt disparaged and not taken seriously when they wanted to discuss CAM. HCPs need to be aware of this issue in order to meet and understand IBD patients’ needs. The IBD patients considered it easier to discuss CAM with nurses than with physicians, which underlines IBD nurses’ important role in communicating with and monitoring IBD patients’ use of CAM. HCPs should be aware that IBD patients consider dietary changes an important CAM treatment. Study IV was a controlled, cross-sectional and multicentre study. Data from 12 IBD clinics in Sweden were collected by means of questionnaires. A total of 645 IBD patients were enrolled and asked to answer two questionnaires; a studyspecifik questionnaire concerning CAM use, disease and demographic data and the Rating Form of Inflammatory Bowel Disease Patients’ Concerns (RFIPC) questionnaire. The RFIPC consists of 25 questions to which patients respond by indicating how worried they are about a particular aspect on a VAS scale from 0-100. The questionnaire also contains an open question “Is there anything more that concerns you?”, which the patients answer in their own words. Of the participants, 313 used CAM and expressed more concerns in 15 of the 25 RFIPC items compared to patients who did not do so/non-users. CAM use was related to younger age and female gender. The open question revealed that IBD had a major impact on everyday life and that IBD patients’ worry concerned: The family and self, the burden of disease and associated factors. Conclusion: Patients with IBD used CAM in an attempt to achieve improvement and wellbeing. They considered dietary changes an important CAM treatment with positive effects on their condition. HCPs attitudes to CAM were mainly positive, although a problematic aspect was lack of knowledge and evidence. The HCPs acknowledged their need for education and respected the patients’ decision to use CAM. However, patients with IBD reported reluctance on the part of HCPs, being treated in a disparaging manner and not taken seriously when wishing to discuss CAM. They wanted to be asked about their CAM use and start a dialogue, but found it easier to discuss CAM treatment with nurses than physicians. Patients using CAM generally had more disease-related concerns compared to those who did not do so. IBD affects the whole of everyday life, especially the family and the self.