Long-term impact of irritable bowel syndrome: a qualitative study

AIM To explore how irritable bowel syndrome (IBS) impacts on patients' lives in order to explain the reported reduction in quality of life (QOL). BACKGROUND IBS affects 10-20% of the population and over half of the people with the condition consult in primary care, with many consultations ending unsatisfactorily. IBS is known to have a detrimental effect on the QOL, though the mechanisms through which this is affected are poorly understood. A greater understanding of the patient experience of IBS would facilitate better healthcare provision. METHODS Eighteen semi-structured, in-depth interviews were undertaken in the West Midlands, United Kingdom from August 2006 to March 2008. Interviews were carried out until data saturation was achieved. All interviewees had previously taken part in one of the two recent primary care-based IBS studies and were long-term sufferers of IBS. Participants were purposively sampled to capture a range of experiences and included both genders, a range of ages, symptom severity scores and IBS sub-types. FINDINGS In contrast to the previously reported 'worried well' label, participants reported integration of the disease into their lives to the extent that it became a part of their identity. Even so, IBS did at times prevent their participation in everyday activities. Strategies used by participants to manage symptoms were an integral part of daily living and events which threatened routine coping strategies caused stress and exacerbated symptoms. Both adaptive and maladaptive coping strategies were identified. These were in part patient created, but for many incorporated advice or medication provided by their doctor. The findings not only confirm the extensive impact of IBS on daily living but also expose the additional impacts of IBS on emotional well-being and self-identity. The reduced QOL reported in previous studies may be an underestimate of the impact of IBS on patients' lives as patients integrate coping mechanisms completely into daily living.