Crohn's disease and ulcerative colitis (UC) are two of the most common chronic inflammatory bowel diseases (IBD) affecting approximately 240,000 people in the UK (IBD Standards Group 2009). Worldwide, incidence rates are reported to be highest in northern Europe and America (Jäghult et al. 2011) with severe symptoms affecting sufferers of all ages and which include rectal bleeding, abdominal pain and diarrhoea. The consequence of repeated severe relapses is profound in terms of the impact on quality of life, continuity of education and the ability to work.
Jäghult et al. (2011) provide an insight into health-related quality of life (HRQOL) using four quality-of-life instruments in a sample of Swedish patients diagnosed with IBD for differing lengths of time. The study is of international importance as in identifying which patients perceive their quality of life to be lowest, healthcare specialists can direct resources to provide greatest support at the point of greatest need. The authors conclude that patients with Crohn's disease have lower HRQOL scores than those with UC, and those more recently diagnosed are more likely to report lower scores than those with disease of longer duration (Jäghult et al. 2011). Interestingly, the study compares HRQOL scores in patients receiving their diagnosis within two years and over five years, both periods of time being within the relatively early stages of disease management. Throughout both periods of time, a range of treatment options are likely to be tried to provide optimum relief from symptoms, which frequently vary markedly within individuals. The results convey an important message for service delivery, that is, newly diagnosed patients require greater support than those who may have lived with the condition long enough to come to terms with the disease and achieved some degree of control of symptoms through interventions. It would be interesting to see how HRQOL changes over time throughout the lifespan.
It is recognised that IBD presentation often occurs at a young age, with symptoms flaring throughout life (Carter et al. 2004) and treated with a variety of treatment options including corticosteroids and immunosuppressive drugs, through to surgery for disease not responding to medical interventions. The value of the emerging role of the IBD nurse specialist role is recognised by the UK IBD Standards Group (2009). The complexity of interventions delivered by IBD specialist nurses is described by Hall (2011) as including clinics for advice, early access for relapses and long-term care, and telephone help lines. The IBD nurse specialist is ideally placed to respond to the needs of the newly diagnosed patient to promote understanding of the disease, acceptance of lifestyle changes and self-management of symptoms to improve quality of life.
Taylor et al. (2008) believe the phrase ‘quality of life’ although commonly used, has no single definition but includes sociological, economical, psychological, philosophical and ethical elements of a person's experience of living with the disease and receiving treatment. Their study led them to add the need to consider developmental stage, use of language and an individual's concept of health in young people with chronic disease (Taylor et al. 2008). The evidence presented by the study of Jäghult et al. (2011) contributes to understanding the necessity to provide support additional to that of managing the disease process in the early stages following diagnosis of the IBD patient and affirms the need to recognise the value of the IBD nurse specialist in this role.