Daily life experiences, symptoms and well being in women with coeliac disease : A patient education intervention

Abstract: Background and aims: Despite living with a gluten-free diet (GFD) Swedish women with coeliac disease (CD) report a lower level of well-being than women without the disease and than men with the disease. The aims of this thesis were to describe the life experience of being a woman living with CD (I) and to assess the effects of patient education (PE) with problem based learning (PBL) on psychological well-being (II) and gastrointestinal symptoms (III).Subjects and methods: In total 106 women, > 20 years, with confirmed CD, who had been treated with a GFD for a minimum of five years were randomized (II&III) to one of two groups: either to the intervention group (n=54) that underwent a ten-session educational program, called ‘Coeliac School’, with PBL, or to a control group (n=52) that received information regarding CD, which was sent to their home on a regular basis.Assessments: Well-being (II & III) (the Psychological General Well-Being index and the Gastrointestinal Symptom Rating Scale) was assessed at baseline and after 10 weeks in all patients and after 6 months in the intervention group. Individual interviews (I) were carried out with purposefully selected women (n=15) before the start of the‘Coeliac School’.Result: The qualitative study showed that CD can influence women’s lives in different ways. A desire for a normalised life-world was described. Three conditions necessary to achieve a normalised life-world were described as: being secure, being in control and being seen and included. After ten weeks of education, participants in the “Coeliac school” reported a significant improvement in psychological well-being (p=0.001) and gastrointestinal symptoms (p=0.013). The controls did not improve significantly. However, at baseline the controls, for reasons which were not apparent, and despite randomization, expressed significantly better psychological well-being and fewer gastrointestinal symptoms than women in the intervention group. Six months after completion of the PE program some of its positive effect had decreased.Conclusions: A PE with PBL can help women with CD to benefit from a greater degree of well-being. It is important to offer PE to those women who fail to achieve a normalised lifeworld. However, intervention methods need to be refined in order to provide a more pronounced long-term effect.