Developing a Standard Set of Patient-Centred Outcomes for Inflammatory Bowel Disease-an International, Cross-disciplinary Consensus.

BACKGROUND AND AIMS: Success in delivering value-based healthcare involves measuring outcomes that matter most to patients. Our aim was to develop a minimum Standard Set of patient-centred outcome measures for inflammatory bowel disease [IBD], for use in different healthcare settings. METHODS: An international working group [n = 25] representing patients, patient associations, gastroenterologists, surgeons, specialist nurses, IBD registries and patient-reported outcome measure [PROM] methodologists participated in a series of teleconferences incorporating a modified Delphi process. Systematic review of existing literature, registry data, patient focus groups and open review periods were used to reach consensus on a minimum set of standard outcome measures and risk adjustment variables. Similar methodology has been used in 21 other disease areas [www.ichom.org]. RESULTS: A minimum Standard Set of outcomes was developed for patients [aged ≥16] with IBD. Outcome domains included survival and disease control [survival, disease activity/remission, colorectal cancer, anaemia], disutility of care [treatment-related complications], healthcare utilization [IBD-related admissions, emergency room visits] and patient-reported outcomes [including quality of life, nutritional status and impact of fistulae] measured at baseline and at 6 or 12 month intervals. A single PROM [IBD-Control questionnaire] was recommended in the Standard Set and minimum risk adjustment data collected at baseline and annually were included: demographics, basic clinical information and treatment factors. CONCLUSIONS: A Standard Set of outcome measures for IBD has been developed based on evidence, patient input and specialist consensus. It provides an international template for meaningful, comparable and easy-to-interpret measures as a step towards achieving value-based healthcare in IBD.

N-ECCO survey results of nursing practice in caring for patients with Crohn's disease or ulcerative colitis in Europe.

BACKGROUND AND AIMS: The difference in nursing roles when caring for patients with inflammatory bowel disease varies across Europe with different levels of responsibility. This might vary widely from country to country and even hospital to hospital depending on the local requirements of the patients and the gastroenterology team. This survey was developed to assess the current nursing practice across Europe. METHODS: A total of 220 nursing delegates who attended the N-ECCO Meeting and School in 2012 were invited to complete a survey. The survey consisted of 11 questions about the role and responsibility of nurses in the care of patients with inflammatory bowel disease. RESULTS: Of the 220 European nurses, 192 responded (87%). A majority (61%) came from 5 European countries, most were between 30 and 50 years old, 73% worked in public hospitals and 68% were involved in adult care. The level of education varied equally between certificate level, degree level, diploma level and masters' level. The nurses' level of experience, above that of the level of education, was the main factor in determining whether to offer advice or not to the patient, independent of a doctor (p<0.01). CONCLUSION: This survey has provided an understanding of the nursing role in the care of patients with IBD across Europe as well as Australia, Canada and Israel. It demonstrates that the role of nurses in IBD exists in various settings within hospital care, providing complex management and autonomous nursing care in a range of services to a significant number of patients with IBD.

Improving quality of care in inflammatory bowel disease: what changes can be made today?

BACKGROUND AND AIMS: There are a number of gaps in our current quality of care for patients with inflammatory bowel diseases. This review proposes changes that could be made now to improve inflammatory bowel disease care. METHODS: Evidence from the literature and clinical experience are presented that illustrate best practice for improving current quality of care of patients with inflammatory bowel diseases. RESULTS: Best care for inflammatory bowel disease patients will involve services provided by a multidisciplinary team, ideally delivered at a centre of excellence and founded on current guidelines. Dedicated telephone support lines, virtual clinics and networking may also provide models through which to deliver high-quality, expert integrated patient care. Improved physician-patient collaboration may improve treatment adherence, producing tangible improvements in disease outcomes, and may also allow patients to better understand the benefits and risks of a disease management plan. Coaching programmes and tools that improve patient self-management and empowerment are likely to be supported by payers if these can be shown to reduce long-term disability. CONCLUSIONS: Halting disease progression before there is widespread bowel damage and disability are ideal goals of inflammatory bowel disease management. Improving patient-physician communication and supporting patients in their understanding of the evidence base are vital for ensuring patient commitment and involvement in the long-term management of their condition. Furthermore, there is a need to create more centres of excellence and to develop inflammatory bowel disease networks to ensure a consistent level of care across different settings.

Survey on the use of adalimumab as maintenance therapy in Crohn's disease in England and Ireland.

INTRODUCTION: Adalimumab is effective in inducing and maintaining response/remission in patients with Crohn's disease either naive to biological therapies or after secondary failure of infliximab. AIM: To present the first 'real-life' survey data from England and Ireland on the use of adalimumab. METHOD: A retrospective audit conducted through a web-based questionnaire in England/Ireland. RESULTS: We analysed data on 61 patients (35 female, 26 male) with a median age of 33 years (range 17-71 years) and an average follow-up of 8 months. The maximal maintenance dose was 40 mg every other week in 84% of patients, 40 mg weekly in 13% and 80 mg weekly in 3%. Maintenance adalimumab achieved remission in 57% of patients. The ongoing response rate was 83.6%. An additional 8% had a secondary loss of response after an average of 8.4 months (range 2-17). Adverse effects were observed in 23% of patients: of which there was local pain in 29%, infection in 36%, headaches in 14%, leucopenia (on azathioprine) in 7%, a painful rash in 7% and serum-sickness-type reaction in 7%. Adverse events led to discontinuation in two patients. CONCLUSION: This English/Irish audit shows an acceptable response/remission and safety profile of adalimumab in the treatment of Crohn's disease. In contrast to earlier data from Scotland, dose escalation was only observed in 16% of patients. The majority of responders were steroid-free at follow-up.