Experience of inpatients with ulcerative colitis throughout the UK UK inflammatory bowel disease (IBD) audit Executive summary report June 2014 Prepared by the Clinical Effectiveness and Evaluation Unit at the Royal College of Physicians on behalf of the IBD programme steering group
The Royal College of Physicians The Royal College of Physicians plays a leading role in the delivery of high quality patient care by setting standards of medical practice and promoting clinical excellence. We provide physicians in over 30 medical specialties with education, training and support throughout their careers. As an independent charity representing 30,000 fellows and members worldwide, we advise and work with government, patients, allied healthcare professionals and the public to improve health and healthcare. The Clinical Effectiveness and Evaluation Unit (CEEU) of the Royal College of Physicians runs projects that aim to improve healthcare in line with the best evidence for clinical practice: national comparative clinical audit, the measurement of clinical and patient outcomes, clinical change management and guideline development. All of our work is carried out in collaboration with relevant specialist societies, patient groups and NHS bodies. The unit is self funding, securing commissions and grants from various organisations including the Department of Health and charities such as the Health Foundation. Healthcare Quality Improvement Partnership (HQIP) The Healthcare Quality Improvement Partnership (HQIP) is led by a consortium of the Academy of Medical Royal Colleges, the Royal College of Nursing (RCN) and National Voices. HQIP s aim is to increase the impact that clinical audit has on healthcare quality and stimulate improvement in safety and effectiveness by systematically enabling clinicians, managers and policymakers to learn from adverse events and other relevant data. Citation for this document: Royal College of Physicians. Inpatient experience as reported by patients with ulcerative colitis throughout the UK. UK IBD audit. London: RCP, 2014. Copyright All rights reserved. No part of this publication may be reproduced in any form (including photocopying or storing it in any medium by electronic means and whether or not transiently or incidentally to some other use of this publication) without the written permission of the copyright owner. Applications for the copyright owner s written permission to reproduce any part of this publication should be addressed to the publisher. Copyright ISBN 978 1 86016 537 5 eisbn 978 1 86016 540 5 Royal College of Physicians 11 St Andrews Place Regent s Park London NW1 4LE www.rcplondon.ac.uk Registered Charity No 210508
Executive summary Background Ulcerative colitis (UC) is the most common type of inflammatory bowel disease (IBD); it is a lifelong, chronic, relapsing remitting condition. The main symptoms include abdominal pain, bloody diarrhoea, fatigue, weight loss and rectal bleeding, all of which can contribute to a poor quality of life. Effective multidisciplinary care can offset relapse, prolong remission, treat complications and improve quality of life. The incidence of UC continues to rise and is reported to be as high as 24.3 per 100,000 per year in Europe. Reported prevalence is as high as 505 per 100,000 and this corresponds to 320,000 people in the UK with a diagnosis of UC. The cause of UC is unknown and, although it can develop at any age, the peak incidence is between the ages of 15 and 25 years, resulting in profound effects on education, work, social and family life. 1,2 The 3 month, per patient cost for UC was calculated at 1211 in 2010, with the majority of this cost attributed to inpatient stays. 3 This report examines the experiences of patients admitted to hospitals in the UK for treatment of UC between 1 January and 31 December 2013. For the first, time a specific section of questions was targeted at adolescent patients. The UK IBD audit provides the widest view of current practice of treatment for people with UC in the UK. Through the collection of these data, the audit seeks to improve all aspects of care for people with IBD. Reports due to be published in September 2014 will address organisational aspects of care and biological therapies. Key message A total of 1550 completed inpatient questionnaires were received from 34% of adult (1484/4359) and 22% of paediatric (66/298) respondents who took part in the inpatient care audit. The response rate was similar to that of the previous round, but with a greater total number of patients in this round. For the first time, a specific section of questions was targeted at adolescents. Overall, there was a variation in satisfaction for adolescents depending on whether they were seen by a paediatric or an adult service. The full results are presented for the UK, divided into adults and children where possible and compared with the previous round of results for patients with UC. For the majority of questions, there was no significant change compared to the previous round. Therefore, patients with UC have not experienced any significant improvement in their inpatient experience over this time, which is disappointing. A more concerted effort is required to address the areas that continue to be rated poorly. The consistency of results over two rounds adds weight to the key messages and means that our recommendations are unchanged from the previous report. Stakeholders are encouraged to familiarise themselves with the range of questions contained in the questionnaire (see section 5) to inform their interpretation of the key findings. There are many positive findings; this report focuses mainly on areas for potential improvement in the hospital experience.
Key findings 1 47% of adult admissions rated their overall care as excellent. Fewer than one in ten (8%) rated their overall inpatient care as either fair (6%) or poor (2%). These results are similar to those reported by adult ulcerative colitis (UC) admissions in the previous round (fair 7%, poor 3%). 2 There were no paediatric UC admissions where the patients rated their overall care as poor in either round of the survey. The percentage of responses that rated patient care as fair was 2% in the present round (4% in the previous round). 3 There were small improvements in domain scores for respect, involvement and cleanliness, but changes were not statistically significant. No improvements were seen in the two domains where UC patients give lower ratings than those for general inpatients ( consistency and coordination of care or nursing care ). 4 Overall, there was a variation in satisfaction for adolescent admissions depending on whether they were treated by a paediatric or an adult service. 73% (27/37) of adolescent admissions treated by a paediatric service rated the overall care that they received as excellent; in comparison, only 26% (12/46) of the adolescents treated by an adult service rated it as excellent. 5 75% of adult and 89% of paediatric admissions reported having full confidence and trust in the doctors responsible for their treatment. 6 78% (1206/1543) of admissions reported experiencing some pain during their inpatient stay, and 41% (493/1202) of these rated their pain as severe. 13% (159/1187) of those with pain said that the amount of pain relief medication provided was not enough. 7 For 17% (256/1542) of admissions, hospital food was rated as poor. It is disappointing that 62% (955/1542) of admitted patients reported not seeing a dietitian during their inpatient stay. 8 IBD nurses play a vital role in the care given to patients. It is encouraging to see that 66%, (974/1471) of admissions to adult sites and 82% (53/65) of admissions to paediatric sites reported being visited by a specialist nurse during their inpatient stay. 9 For most UC admissions the patients reported a positive experience of pre discharge information, but a significant proportion stated that they were not told about medication side effects (35% of adult respondents; 11% of paediatric respondents) or danger signals (33% of adult respondents; 20% of paediatric respondents) of which to be aware after going home. Recommendations 1 All UC inpatients should receive input from specialist multidisciplinary teams with experience of managing such complex disorders. This will maximise the opportunity for provision of consistent and coordinated care. 2 Local IBD teams should consider whether the general nursing staff have sufficient awareness and knowledge of IBD, and initiate appropriate educational interventions and care pathways to support high quality nursing. The routine involvement of specialist IBD nurses in the day to day care of IBD patients at ward level is seen as a potential driver to improve the overall experience of nursing care. 3 All admitted patients with active UC require routine documentation of nutritional intake and weight. Nursing care plans should identify nutrition as a key element of day to day care. Food provided should be appropriate to patients dietary needs. Standard A5 of the IBD standards 4 states that access to a dietitian should be available to all IBD patients. 4 Ward medical and nursing teams should review their local policies and current practice with regard to the frequency and effectiveness of pain assessment and provision of analgesia. 5 Discharge policies for IBD patients require local review to ensure that patients receive highquality pre discharge information regarding medication, self care and follow up plans. In particular, improvements are needed in the provision of information about potential drug side effects and the warning signs of which to be aware after discharge.
Implementing change: action plan This action plan has been produced to enable you to take forward the recommendations of this national audit and allows for adaptation through the addition of further actions as you feel appropriate for your own service. You can download a copy of this action plan from www.rcplondon.ac.uk/ibd. National recommendations Staff responsible Progress at your site (Include date of review, name of individual responsible for action 1 All UC inpatients should receive input from specialist multidisciplinary teams with experience of managing such complex disorders. This will maximise the opportunity for provision of consistent and coordinated care. 2 Local IBD teams should consider whether the general nursing staff have sufficient awareness and knowledge of IBD, and initiate appropriate educational interventions and care pathways to support high quality nursing. The routine involvement of specialist IBD nurses in the day to day care of IBD patients at ward level is seen as a potential driver to improve the overall experience of nursing care. 3 All admitted patients with active UC require routine documentation of nutritional intake and weight. Nursing care plans should identify nutrition as a key element of day to day care. Food provided should be appropriate to patients dietary needs. Standard A5 of the IBD standards 4 states that access to a dietitian should be available to all IBD patients. 4 Ward medical and nursing teams should review their local policies and current practice with regard to the frequency and effectiveness of pain assessment and provision of analgesia. 5 Discharge policies for IBD patients require local review to ensure that patients receive high quality pre discharge information regarding medication, self care and follow up plans. In particular, improvements are needed in the provision of information about potential drug side effects and the warning signs of which to be aware after discharge. All healthcare professionals responsible for treating people with IBD NHS managers IBD nurses Consultant gastroenterologists Nursing staff Healthcare assistants Consultant gastroenterologists NHS managers IBD nurses Consultant gastroenterologists NHS managers IBD nurses Consultant gastroenterologists
References 1 Molodecky NA, Soon IS, Rabi DM et al. Increasing incidence and prevalence of the inflammatory bowel diseases with time, based on systematic review. Gastroenterology 2012;142:46 54. 2 National Institute for Health and Care Excellence. Ulcerative colitis: management in adults, children and young people, CG166. London: NICE, 2013. 3 Vaizey CJ, Gibson PR, Black CM et al. Disease status, patient quality of life and healthcare resource use for ulcerative colitis in the UK: an observational study. Frontline Gastroenterology 2014; doi:10.1136/flgastro 2013 100409. 4 IBD Standards Group. Standards for the healthcare of people who have inflammatory bowel disease (IBD Standards), 2013 update. www.ibdstandards.org.uk [Accessed 3 June 2014].
Royal College of Physicians 11 St Andrews Place Regent s Park London NW1 4LE IBD programme: Clinical Effectiveness and Evaluation Unit Tel: +44 20 3075 1565/1566 Email: ibd.audit@rcplondon.ac.uk www.rcplondon.ac.uk/ibd