Our fatigue in IBD project is a collaboration with researchers at two leading research universities – King’s College London and University College London – and Addenbrookes NHS’ Trust. The researchers brought with them a wide range of skills and experience and have worked on different stages of the project. Crohns and Colitis UK worked closely with the other research partners to achieve the project’s objectives, and were closely involved with all stages of the study.
Wladyslawa (Wladzia) Czuber-Dochan - MSc Dip N RGN RNT
Wladzia has a professional background in acute adult nursing (surgery) and management of chronic conditions (stroke and inflammatory bowel disease). She has extensive experience in teaching and research. Wladzia has previously taught at the University of Nottingham (1994-99) and the University of Manchester (1999-2007). Following her appointment at King’s College London in 2007 she teaches on undergraduate and postgraduate programmes. Her research interests are in the area of developing and improving the quality of nursing care, advanced nursing role, patient assessment and health outcomes.
Wladzia’s methodological expertise lies in mixed-methods research with a current focus on translating research into practice. She has published in peer reviewed international journals, has co-authored a book on ‘Research Mindedness for Practice’ and has presented at national and international conferences. Wladzia also reviews for a number of nursing, medical and educational journals. She is a member of the RCN International Scientific Nursing Committee and a Scholar of the European Academy of Nursing Science. In September 2009 she registered for a part-time PhD and the topic of her study is fatigue in Inflammatory Bowel Disease. In May 2010 she was awarded Margery Simpson New Researchers Award for her work in inflammatory bowel disease related fatigue.
Role in the project
Wladzia worked on the project as a Nursing Research Fellow and she was responsible for four out of seven project work packages:
- Conduct in-depth qualitative interviews with people diagnosed with IBD and reporting fatigue in order to gain understanding of the nature of IBD-fatigue and how people try and deal with fatigue on daily bases. Outcome: Data were collected and analysed. The information fed into the IBD fatigue questionnaire development. Paper on description of fatigue and its impact in individuals’ life is currently in preparation.
- Undertake a literature review of IBD-fatigue and other chronic conditions where fatigue is one of frequently reported symptoms. Outcome: The literature review completed and published in ‘Alimentary Pharmacology & Therapeutics’ 2013, 37(5).
- Develop IBD-fatigue assessment questionnaire to enable self-assessment for people with IBD-related fatigue and IBD healthcare professionals. Outcome: A new, IBD specific fatigue scale has been developed and tested. A paper was accepted for publication in ‘Journal of Crohn’s & Colitis’ 2014. http://dx.doi:org/10.1016/j.crohns.2014.04.013
- Conduct in-depth qualitative interviews and gain an understanding of healthcare practitioners’ perceptions of IBD fatigue as experienced by people diagnosed with IBD. Outcome: The study was completed and published in ‘Journal of Crohn’s & Colitis’ 2014. http://dx.doi.org/10.1016/j.crohns.2014.01.004
Christine Norton - PhD MA RN
Christine is Professor of Nursing at Imperial College Healthcare NHS Trust & King’s College London. Christine trained as a nurse at St George’s Hospital in London after reading history at Cambridge University. She was one of the first continence nurse specialists in the UK and was the first Secretary of the Association for Continence Advice. Later she was founder and Director of the UK Continence Foundation.
Christine runs a nurse-led biofeedback service for people with faecal incontinence and constipation at St Mark’s Hospital in Harrow, UK. Christine writes and lecturers widely and has an active research programme. She was Director of the Burdett Institute of Gastrointestinal Nursing at King’s College London 2004-2010. Her book, “Bowel Continence Nursing” was published in 2004. She was Chair of the NICE guideline on faecal incontinence (2007) and is Chair of the International Consultation on Incontinence committee on faecal incontinence. She is nurse adviser to the Trustees committee of Crohn’s and Colitis UK.
Role in the project
Christine will be a key advisor on the project for the full 4 years of its duration. She supervises the work being undertaken for the project, by Wladzia Czuber-Dochan, and is a member of the Project Steering Group. Christine is undertaking an assessment of Health Care Professionals’ awareness of fatigue in IBD and will be key to communicating the outcomes of the research to healthcare professionals, patients, and the media.
Alastair Forbes - BSc (Hons), MD, FRCP, FHEA, AKC
Alastair Forbes is Professor of Medicine at the Norwich Medical School in the University of East Anglia. Until recently he was Professor of Gastroenterology and Clinical Nutrition at University College London (UCL), and University College London Hospitals NHS Foundation Trust (UCH), where he was the Theme Lead for Gastroenterology and Hepatology, Head of Centre for Gastroenterology, and Director of the UCL MSc in Clinical and Public Health Nutrition. He is an editor of the journal Clinical Nutrition, and has been a Faculty Senior Investigator for the National Institute of Health Research, and the Education Director for the European Society of Clinical Nutrition (ESPEN).
Alastair’s other previous roles include: Consultant Physician and Gastroenterologist at St. Mark’s Hospital (1992-2005), Reader in Gastroenterology at Imperial College London (2001-05), and Dean to the St. Mark’s Academic Institute (2002-05). His responsibilities have encompassed a major clinical role in intestinal gastroenterology (especially inflammatory bowel disease) and nutrition. He also has a major commitment to research and postgraduate medical education.
In addition to more than 220 original refereed papers, and 130 odd review articles and chapters, Alastair has co-authored 17 books, 9 educational videos, 5 CD-ROMs and 2 web-based video presentations. He is author of a popular single contributor volume on inflammatory bowel disease (with a 3rd edition in preparation). He takes a keen interest in the interface between disciplines, both within medicine and outside, recently exemplified by his collaborations with playwrights and actors in experimental multimedia work on faecal incontinence.
Role in the Project
Alastair’s responsibilities on the project include refining the checklist of items to consider when reviewing patients with IBD fatigue and has been conducting preliminary testing of this with his IBD patients, he is also the Principal Investigator for the ongoing research trial. Alastair will join in the drafting of publications for journals and make presentations to conferences. He will be a key figure communicating the outcomes of the research to healthcare professionals and patients.
Angela McNelly MA - (Cantab), PhD, MSc
Angela is a post-doctoral scientist with experience of academic research, and commercial development, project management, and medical writing within the publishing area. Following research into cellular chemotherapy and immunological aspects of multiple sclerosis during the early part of her career, she undertook a Masters in clinical and public health nutrition in 2010, developing a research interest in the impact and assessment of daily physical activity in different patient groups. She has investigated the use of a novel frailty score, and the applicability of activity monitors in community-based survivors of intensive care, recently presenting these data at national and international meetings. She has considerable experience approaching and interviewing individuals with chronic disease, either in the hospital out-patient or home settings.
Role in the Project
Angela has now taken over the role of lead researcher for the study, working with Indira Nathan, Alastair Forbes and Dr George Grimble at University College London. She has been working on setting up systems and databases for patient contact and recording of results from the various measures of fatigue being used.
Fran Bredin RGN, MSc, BSc
Fran is an IBD Specialist Nurse and Research Nurse. Her career in IBD was supported and enabled in the early stages by Crohn’s and Colitis UK when the Tayside local group sponsored her to attend the IBD Nurses training course at St Mark’s, Harrow. Fran subsequently moved from Ninewells Hospital, Dundee to Addenbrooke’s in Cambridge where she worked as IBD Specialist Nurse and Research Nurse for 8 years.
Fran moved to the Queen Elizabeth Hospital, King’s Lynn 3 years ago to set up an IBD Nurse service but still maintains a part-time research role in the IBD Research Unit at Addenbrooke’s. Fran has a particular interest in the ‘hidden symptoms’ of IBD – namely pain and fatigue, which is why she has been very keen to support this research project.
Role in the Project
As Fran’s role at present is mainly advisory. As the project progresses and we look at possible interventions, Fran will help us to achieve our project milestones.