WOMEN WITH IRRITABLE BOWEL SYNDROME. Aspects of quality of life and health

Sammanfattning: Irritable Bowel Syndrome (IBS) is a common, worldwide, functional disorder affecting a significant number of people, predominantly women. Etiology and pathophysiology is insufficiently understood, but the research over the past decade has led to progress in the understanding of IBS, and it is generally accepted that the symptoms of IBS are multidetermined. However, management of IBS is still a challenge as many patients fail to respond to the therapies available. For patients with IBS the uncertainty regarding cause, diagnosis and treatment may lead to anxiety and a constant search for answers. The chronic bowel problems affect daily life and lead to a reduction in quality of life.

The overall aim was to create a model for health care and to improve health and the quality of life in Swedish women with IBS.

In this thesis a multi-methodological design was used, including qualitative (Paper I) and quantitative (Paper II and III) research methods as well as psychometric testing (Paper IV). In Paper I an overall question about women's perception of their quality of life was analysed by Burnard's content analysis. A quantitative comparative design was used to study differences in symptoms and psychological well-being over time (Paper II) after intervention, a Course of Instruction, and between groups using different laxatives (Paper III). In Paper IV the Visual Analogue Scale for Irritable Bowel Syndrome (VAS-IBS) was psychometrically tested for content and criterion validity, internal consistency, reliability, item-reduction, acceptability of the scale and simplicity.

To be healthy, without physical symptoms, and to have a satisfying social life were important issues for a good quality of life according to the women participating (Paper I). All of the women reflected on issues related to physical, mental and social health, and the need to have balance between family, work and leisure time. The majority of the women mentioned the importance of support from family and friends and they pointed out that this support affected their quality of life in a positive way. A few of the women mentioned that it was important to them to be accepted as they are, in spite of their bowel symptoms. A majority of the women participating had not understood that they have a classified disorder based on established criteria and they were not familiar with the diagnosis or with all that it implies. The women mentioned that their feelings had been hurt by the attitudes of health professionals and they felt misunderstood since the doctors and nurses had been nonchalant about their problems. The women wanted more information and instruction about IBS.

Of the 29 women participating in a Course of Instruction (Paper II), 23 completed the Gastrointestinal Symptom Rating Scale (GSRS) and the Psychological General Well-being (PGWB) Index 12 months after the course. The women perceived less Abdominal Pain (p<0.037) and experienced more Vitality (p<0.045) than before they started the course, according to the scores of the GSRS and the PGWB. There were a reduced numbers of visits to physicians (p<0.037) and to dieticians (p<0.042) (Paper II), but there were no statistically significant changes between the women's consumption of pharmacological drugs, naturopathic preparations or reported sick-leave.

There were no statistically significant differences in symptoms according to the scores of the GSRS between those women who used sodium picosulphate regularly at least once a week, and those who used other laxatives, including sporadic use of sodium picosulphate (Paper III). There was, however, a statistically significant difference in psychological well-being according to the PGWB between the two treatment groups. The women who used sodium picosulphate had higher scores (97, interquartile range 79-106), compared to the patients who used other laxative treatments (86 interquartile range 77-95; p<0.017), thereby indicating better psychological well-being. The difference was seen in less Anxiety (p<0.0001).

The psychometric testing confirmed that the VAS-IBS is an acceptable, homogeneous, patient-reported questionnaire with acceptable content and criterion validity and internal consistency reliability.

In this thesis several aspects related to quality of life and health have been identified, and discussed, namely, confirmation of the diagnosis, confirmation of the patient, instructing the patient and treating the patient's symptoms. Health care in relation to these issues can be described in a pyramid-model. The aim of this model is to help the patients to take responsibility for their illness and to improve their health and quality of life to some extent. The goal should be for the patient to perceive; good physical, mental and social health, good welfare, strength and energy, and self-fulfilment.