NIHR Signal New insights into living with inflammatory bowel disease
Published on 4 December 2018
Living with inflammatory bowel disease as a `hidden’ condition can lead to feelings of isolation and exclusion. These experiences are characterised by exhaustion, feelings of damaged body image, loss of control and living with the fear of complications.
The condition can be unpredictable and have a profound impact on quality of life, disrupting social relationships and interactions with the outside world. The ongoing emotional and psychological difficulties caused by this chronic, long term illness can result in loss of productivity and considerable cost to the NHS.
This systematic literature review looked at 23 studies combining 825 participants’ views to gain new insights into the experiences of people living with the condition. Person-centred care focussing on of the psychological impact of inflammatory bowel disease may require further consideration within health service provision.
- Gastrointestinal disorders, Haematological and immunological disorders, Public and patient involvement, Nursing, Primary care, Acute and general medicine
Why was this study needed?
Inflammatory bowel disease is a term used to describe Crohn’s Disease and Ulcerative Colitis. These are chronic conditions characterised by abdominal pain, fatigue, weight loss and diarrhoea. They can have a significant impact on quality of life.
Globally, the number of people with inflammatory bowel disease is growing. Europe is reported to have the highest annual incidence. In the UK 620,000 people have inflammatory bowel disease. The annual cost to the NHS per patient is estimated to be £3,084 for ulcerative colitis and £6,156 for Crohn’s Disease.
While therapies have advanced in recent years, and there are more specialist practitioners, it is recognised there are still aspects of care that require improvement. In particular, there is a lack of evidence on the experiences of people living with inflammatory bowel disease. A better understanding of what it is like to live with the condition could support the delivery of better, patient-centred healthcare.
What did this study do?
This systematic review included 23 qualitative studies, mostly by interview, published between 2000 and 2017 focussing on patient experiences of living with inflammatory bowel disease. Quality assessment of papers used a recognised tool and all studies identified had used appropriate methods. A rigorous two-tier process of analysis was undertaken to identify the main themes.
Studies were predominantly from the UK and Europe but also other developed countries. The opinions of 825 mostly Caucasian adults were represented in these combined studies. Only 6% were from black or ethnic minority groups and 3% in the 16-24 age group. Therefore the findings may not be representative of ethnic minorities or young people.
What did it find?
- People with inflammatory bowel disease report that it can have a profound impact on their everyday life which can limit their participation in normal activities. The feeling of living in isolation and exclusion is the strongest and most commonly reported experience of those with the condition.
- Fatigue and exhaustion are characteristics of the condition which were reported to impact on both small and major life decisions.
- Participants described an invisible illness for which there was a lack of public awareness or belief. They also felt unable to discuss their condition due to the embarrassing and perceived socially unacceptable nature of it, even with health professionals. Many felt the need to hide their illness.
- Damaged body image, the unpredictability of the condition, lack of bodily control and feelings of guilt due to the need for increased support were reported. These experiences had an impact on relationships, family life, career development, and social and working lives. Many avoided going out.
- Fear was reported particularly about being treated by non-specialist healthcare professionals with a limited understanding of the condition. Lack of information caused anxiety alongside fear of complications and death.
What does current guidance say on this issue?
Current guidelines emphasise managing the physical symptoms of inflammatory bowel disease. NICE advises that for Crohn’s Disease and Ulcerative Colitis a range of topical and oral drug treatments, biological therapies, and surgery are recommended. A multidisciplinary team of specialists should be involved in care provision with patients waiting no longer than four weeks for specialist assessment.
Support is recommended for the emotional, psychological and social consequences of inflammatory bowel disease which arguably, are the greatest challenges of the condition. No specific details are provided within any of the existing guidelines on the management of these aspects of the condition.
What are the implications?
The emotional and psychological impact of inflammatory bowel disease is under-addressed within existing services and guidelines. Building processes to support these aspects of the condition in patient-centred healthcare has the potential to reduce the social withdrawal associated with inflammatory bowel disease and support patients to have a better quality of life.
The findings of this study are likely to be useful to specialists, and non-specialists working in primary or secondary care. They are also likely to be relevant to those involved with the future development of guidelines. Insights from those with lived experience of this disease should also inform future research, identifying outcomes such as tiredness which are important to patients.
Citation and Funding
Fourie S, Jackson D, Aveyard H. Living with inflammatory bowel disease: a review of qualitative research studies. Int J Nurs Stud. 2018; 87:149-56.
No funding was attached to this study.
Ghosh N, Premchand P. A UK cost of care model for inflammatory bowel disease. Frontline Gastroenterology. 2015;6:169-74.
Molodecky N, Soon I, Rabi D et al. Increasing incidence and prevalence of the inflammatory bowel diseases with time, based on systematic review. Gastroenterology. 2012;142:46-54.
Mowat C, Cole A, Windsor A et al. Guidelines for the management of inflammatory bowel disease in adults. Gut. 2011;60:571-607.
NICE. Inflammatory bowel disease: quality standard. QS81. London: National Institute for Health and Care Excellence; 2015.
NICE. Ulcerative colitis: management. CG166. London: National Institute for Health and Care Excellence; 2013.
NICE. Crohn’s disease: management. CG152. London: National Institute for Health and Care Excellence; 2012.
Systematically reviewing qualitative evidence provides a rich and powerful account of living with inflammatory bowel disease. Clinicians’ and researchers’ views of the experience of an illness do not always overlap with patient views, and therefore it is important to give a voice to patients.
Assessing illness experience, often via patient-reported outcome measures, and delivering patient-centred care should become an integral part of services. The experiences reported in this paper do not yet feature within recommended outcome assessments in inflammatory bowel disease. This highlights that qualitative research needs to be used more effectively to ensure that outcome measurement reflects the patients’ perspective.
Dr Michele Peters, Associate Professor, Health Services Research Unit, University of Oxford
The commentator declares no conflicting interests