- Email: [email protected]
N007 Patient empowerment through increased physical fitness. The Belgian IBD patient support group Mt Ventoux cycling and hiking event
S298 • Provides extra contact and continuity with patients at a vulnerable time. • Minimises those “lost to follow-up” allowing healthcare resources such as outpatient visits, to be more efficiently used. This patient-centred approach minimises poor adherence to treatment and potentially avoidable flares or toxicities, which are all well-recognised problems in IBD. With this approach there has been no hospital admission or major myelosuppression this year. N005 Examination of the efficacy of Chronic Disease Self-management Programme (CDSMP) for patients with inflammatory bowel disease (IBD): a pilot study M. Forry1 *, E. McDonnell2 , J. Wilson-O’Raghallaigh2 , O. Kelly1 , A. O’Toole1 , F. Murray1 , G. Harewood1 , S. Patchett3 . 1 Beaumont Hospital, Gastroenterology, Dublin, Ireland, 2 Beaumont Hospital, Psychology, Dublin, Ireland, 3 Beaumont Hospital, Dublin, Ireland Background: The need for a psychosocial intervention for patients with IBD was recognised by multidisciplinary healthcare professionals working at a major Irish hospital. CDSMP was identified as a leading model of psychosocial intervention in development since 1992 at Stanford University. This pilot study is the first reported use of CDSMP for patients with IBD. Methods: A repeated measures design with waitlist control (n = 44) was utilised with treatment group participating in CDSMP, which consisted of 6 weekly sessions of 2.5 hours duration co-facilitated by a trained patient and healthcare professional. Mood was measured using the hospital anxiety and depression scale (HADS). The Rand 36-Item Health Survey (SF-36) was used to measure general health related quality of life (HRQoL) using eight scales (General Health, Physical Functioning, Bodily Pain, Role-Physical, Role-Emotional, Energy/Fatigue, Social Functioning & Emotional Well Being). Total scores range from 0 100 with higher scores indicating better (HRQoL). The Short Inflammatory Bowel Disease Questionnaire (SIBDQ) was used to measure physical, social, and emotional status (score 10 70, poor to good HRQoL) in patients with IBD. Results: Of the 44 patients participated in the pilot study, 11 were male (25%) and 33 female (75%). Data relating to mood, impact of illness and social role functioning was obtained with significant improvement in mood achieved in the treatment group in comparison to the waitlist control. Paired sample t-tests indicated a significant reduction in levels of depression noted on the HADS (p = 0.05). Pre-intervention 14% of the treatment group displayed mild depression. Post-intervention no clinical levels of depression were evident in the treatment group compared to 17% of waitlist control who displayed mild to severe levels of depression. Paired sample t-tests indicated significant improvement in the SF-36 on the factor of emotional well-being (p = 0.04). Of note, 14% of the treatment group were experiencing relapses in their condition at the end of the CDSMP. The SIBDQ showed positive trends towards an improvement of symptoms though at a non-significant level. Conclusions: The results of this study indicate that CDSMP appears to be an effective psychosocial intervention for patients with IBD. Considerations are made to the implementation of the CDSMP in hospital and community settings in Ireland for this patient group.
Nurses presentations N006 Supported Self Help and Management 1
1
1
SSHAMP
1
K. Lithgo *, T. Price , M. Johnson . Luton and Dunstable NHS Foundation Trust, Gastroenterology, Luton, United Kingdom Background: In February 2012 the Luton & Dunstable University Hospital in Bedfordshire became the first hospital in UK to commence a remote management programme for stable inflammatory bowel disease (IBD) patients. The project is entitle IBD-SSHAMP (Supported, Self Help And Management Programme) was funded by an Innovation Award from East of England Primary Care Trust Innovation Team. The aim was to discharge patients from routine clinic visits, whilst maintaining an efficient remote monitoring that could be co-ordinated through our specialist nurses. Methods: We had to ensure we had a complete, up-to-date database containing all our IBD patients. After a retrospective 10 year review we identified a total of 2790 IBD patients, from 19 different ethnic backgrounds. Of these, 26 patients lacked mental capacity and 117 did not have internet access. 370 of our original cohort had died by the time of commencing the project. Using Patient Knows Best we developed individualised websites to offer a communication portal between patients and specialist care, through which we could monitor their symptoms and offer management advice through a traffic light system. An alert is sent out to the IBD nurses and clinician involved if any patients symptom indices deteriorate markedly. Periodic faecal calprotectin and inflammatory markers will also be used to support the monitoring process. Virtual clinics will be held for these patients twice a year. Results: Of the available 2,277 IBD patients, we have successfully discharged 400 onto the first wave of IBD-SSHAMP, with a further 300 due to follow shortly. With confidence in the system building it will primarily contain patients stable on immunosuppressants eg. azathioprine. With most patients being seen at 6 monthly intervals, and follow up clinic appointments costing our PCT £85, this project could save £119,000 per year, whilst still provide a patient friendly and efficient management system. Conclusions: IBD-SSHAMP is UK’s first internet based remote management system for managing stable IBD. It aims to reduce cost and free up NHS outpatient time, whilst providing efficient monitoring and management programme. This is a proof of concept programme from which further data outcomes will be presented. N007 Patient empowerment through increased physical fitness. The Belgian IBD patient support group Mt Ventoux cycling and hiking event E. Weyts1 *, P. Geens2 , F. Van Dijk3 , D. Staes4 , F. Wieme4 , K. Van Eyken4 , J. Van Campfort4 , D. De Bast5 , Y. Van Craenenbroeck6 , H. Peeters7 , S. Vermeire1 , G. Van Assche1 . 1 University Hospitals Leuven, Gastroenterology, Belgium, 2 Imelda Hospital, Bonheiden, Belgium, 3 University Hospital Antwerp, Gastroenterology, Antwerp, Belgium, 4 CCV-VZW, Belgium, 5 Association Crohn-RCUH asbl, Belgium, 6 Fitclass, Belgium, 7 University Hospital Gent, Gastroenterology, Gent, Belgium Background: Physical training programs and improvement of general fitness have become standard components of modern care in several chronic disorders but data in IBD are limited. We aimed to test the ability of patients with IBD to improve their physical performance and to work towards an athletic challenge in a pilot project managed by a national patient association with expert nursing and medical support. Methods: A monitored training program with repeated testing was offered to patients with IBD to prepare them for an ascent of Mt Ventoux, 1912 m. Patients and support team
Nurses poster presentations members were recruited through the Belgian IBD support groups network. Progress of performance over a period of 10 months was monitored by repeated heart rate based endurance tests. Questionnaires were collected from all participants to assess disease characteristics and to minimize medical risks. Baseline blood results (Hb, Hct, CRP), were recorded when available. One month after completing the project patients were polled with a Likert scale questionnaire about the impact of the challenge on living with their disease. Two Olympic athletes publicly supported the program. Results: A total of 23 patients (median age 46 (25 74), 16 M/7F) with a diagnosis of CD (14) or UC (9) participated in the project. Baseline fitness levels were highly variable. After the training program, the median change in peak performance expressed as IAND Watts was 15% ( 16% to 57%) and 77% increased their performance level. The body weight did not change. In the actual one day challenge in Sep 2012 22 patients attempted to reach the summit. All but one cyclist and 100% of the hikers succeeded and all achieved their personal predefined goal. Symptoms interfering with the ascent included abdominal cramping, urgency and pelvic floor discomfort. In 3 cases these led to intervention by nursing staff or termination of the attempt. Eighty-seven, 75, 63 and 75% of patients felt that the project had positively influenced their performance, self-esteem, quality of life and coping strategies respectively, but only 38% felt a positive impact on fatigue. Worsening of symptoms during the challenge was recorded by 6%. Conclusions: This pilot project shows that patient empowerment through a monitored training program and an athletic challenge is feasible in IBD and has a positive influence on disease perception and quality of life, but not on fatigue. Long term programs are needed to study the influence of physical training on disease outcomes.
S299 injection of infliximab) with varying results. A high percentage of patients required surgical treatment, the majority (60%) by placement of setons and/or simple drainage (31%). A temporary colostomy was performed in 4 patients (7.8%) and radical proctectomy was performed in 3 cases (6%). 72.5% of patients required admission, primarily due to surgery, 90% of which were for a short period (48 72 hours). The majority of cases (88.24%) were controlled in the nursing clinic with dressing changes, psychosocial support and early detection of recurrences (66%). Conclusions: The percentage of patients with complicated fistula disease in our unit is similar to that seen in the majority of published studies, as are the treatments offered. Notable is the combined medical-surgical treatment strategy: biological therapy+setons. Specialized nursing care plays an important role in the early detection and follow-up of patients with complex fistulas, as well as help and support in the loss of quality of life involved. N009 Confirmed: the knowledge of inflammatory bowel disease patients is poor
M. Morete1 *, P. Puig1 , L. Fuster2 , G. Vila3 , V. Ollero1 , A. Echarri1 . 1 Hospital A. Marcide, Gastroenterology, Ferrol, Spain, 2 Hospital A. Marcide, Pharmacy, Ferrol, Spain, 3 Hospital A. Marcide, Infusion Unit, Ferrol, Spain
M. Sephton1 *, S. Tattersall2 , K. Kemp3 , R. Campbell4 , J. Dougherty5 , A. Fergusson6 , L. Gray7 , B. Gregg8 , A. Hurst9 , T. Law10 , L. Parkinson11 , V. Hall2 . 1 University Hospital South Manchester, Gastroenterology, Manchester, United Kingdom, 2 Royal Bolton Hospital, Gastroenterology, Greater Manchester, United Kingdom, 3 Manchester University, Nursing Department, Manchester, United Kingdom, 4 Stepping Hill Hospital, Gastroenterology, Stockport, United Kingdom, 5 Warrington & Halton Hospital, Gastroenterology, Warringtion, United Kingdom, 6 East Lancashire Hospitals, Gastroenterology, Blackburn, United Kingdom, 7 Countess of Chester Hospital, Gastroenterology, Chester, United Kingdom, 8 Royal Liverpool & Broadgreen University Hospitals, Gastroenterology, Liverpool, United Kingdom, 9 University Hospital Aintree, Gastroenterology, Liverpool, United Kingdom, 10 Pennine Acute Trust, Gastroenterology, Greater Manchester, United Kingdom, 11 Blackpool Teaching Hospitals, Gastroenterology, Blackpool, United Kingdom
Background: The incidence of perianal fistulas in IBD varies between 10 48% for Crohn’s disease (CD) and 5% for ulcerative colitis (UC), constituting a complication that affects patient quality of life and often requires urgent attention. New biological treatments and management in multidisciplinary units has improved clinical course among this complicated group of patients. Objectives: Retrospective analysis of patients with IBD and complex perianal fistulas in follow-up in our Unit over the last 15 years. Methods: The IBD Unit currently performs follow-up on 750 patients (CD: 350; UC: 400) whose most significant data has been collected in a database. In the first phase, patients with perianal disease were selected, however only complex fistulas were included. The type of medical treatment received, use of setons or need for drainage, index of recurrences and abscesses, number of proctectomies performed, as well as the number of patients in follow-up in the IBD Nursing Unit were evaluated. Results: 13.7% of patients with CD and 0.7% of patients with UC had complicated fistulas with no difference based on gender. 19.6% of patients remained in remission with azathioprine, with the use of biological therapies required in 80.3% of cases. During the follow-up period, methotrexate was used in 9 cases (17%), two of these in combination with biological therapy. We have used different strategies in refractory patients (hyperbaric chamber, oral or topical tacrolimus, topical treatment with 10% metronidazole, local
Background: The knowledge of Inflammatory Bowel Disease (IBD) patients has recently been deemed to be poor [1]. It’s not clear if this represents the knowledge of just a single hospital trust, or if it is representative of the whole IBD patient community. Furthermore, it is also unclear how satisfied patients are with their own knowledge. Methods: We repeated a prospective questionnaire based study using the Crohn’s and Colitis knowledge (CCKNOW) questionnaire across 8 different hospital trusts in the Northwest (NW) region of the UK. We also asked patients to rate their level of satisfaction with their level of knowledge of IBD. 127 patients were selected randomly from 8 different hospital trusts. We compared our results in the NW to the 139 questionnaires that have been previously completed and published from one hospital trust. Results: The number of correct answers per validated question was compared to previous published data from a single centre. The results of our study and previous published data are similar with the exception of 5 questions. It is difficult to clarify the rational for the variations in these 5 questions, but is probably due to a variation in the past experiences and type of patients completing the questionnaire, as these 5 questions were based on treatments as opposed to symptoms or anatomy. The mean and median CCKNOW score was 10.12 and 9 respectively in the NW cohort. Patients do not recognise their deficit in their knowledge because none of our patients reported dissatisfaction with their level of knowledge despite the results showing a poor level of IBD knowledge.
N008 Inflammatory bowel disease and complicated perianal fistulas. A 15 year follow-up
Nurses presentations N006 Supported Self Help and Management 1
1
1
SSHAMP
1
K. Lithgo *, T. Price , M. Johnson . Luton and Dunstable NHS Foundation Trust, Gastroenterology, Luton, United Kingdom Background: In February 2012 the Luton & Dunstable University Hospital in Bedfordshire became the first hospital in UK to commence a remote management programme for stable inflammatory bowel disease (IBD) patients. The project is entitle IBD-SSHAMP (Supported, Self Help And Management Programme) was funded by an Innovation Award from East of England Primary Care Trust Innovation Team. The aim was to discharge patients from routine clinic visits, whilst maintaining an efficient remote monitoring that could be co-ordinated through our specialist nurses. Methods: We had to ensure we had a complete, up-to-date database containing all our IBD patients. After a retrospective 10 year review we identified a total of 2790 IBD patients, from 19 different ethnic backgrounds. Of these, 26 patients lacked mental capacity and 117 did not have internet access. 370 of our original cohort had died by the time of commencing the project. Using Patient Knows Best we developed individualised websites to offer a communication portal between patients and specialist care, through which we could monitor their symptoms and offer management advice through a traffic light system. An alert is sent out to the IBD nurses and clinician involved if any patients symptom indices deteriorate markedly. Periodic faecal calprotectin and inflammatory markers will also be used to support the monitoring process. Virtual clinics will be held for these patients twice a year. Results: Of the available 2,277 IBD patients, we have successfully discharged 400 onto the first wave of IBD-SSHAMP, with a further 300 due to follow shortly. With confidence in the system building it will primarily contain patients stable on immunosuppressants eg. azathioprine. With most patients being seen at 6 monthly intervals, and follow up clinic appointments costing our PCT £85, this project could save £119,000 per year, whilst still provide a patient friendly and efficient management system. Conclusions: IBD-SSHAMP is UK’s first internet based remote management system for managing stable IBD. It aims to reduce cost and free up NHS outpatient time, whilst providing efficient monitoring and management programme. This is a proof of concept programme from which further data outcomes will be presented. N007 Patient empowerment through increased physical fitness. The Belgian IBD patient support group Mt Ventoux cycling and hiking event E. Weyts1 *, P. Geens2 , F. Van Dijk3 , D. Staes4 , F. Wieme4 , K. Van Eyken4 , J. Van Campfort4 , D. De Bast5 , Y. Van Craenenbroeck6 , H. Peeters7 , S. Vermeire1 , G. Van Assche1 . 1 University Hospitals Leuven, Gastroenterology, Belgium, 2 Imelda Hospital, Bonheiden, Belgium, 3 University Hospital Antwerp, Gastroenterology, Antwerp, Belgium, 4 CCV-VZW, Belgium, 5 Association Crohn-RCUH asbl, Belgium, 6 Fitclass, Belgium, 7 University Hospital Gent, Gastroenterology, Gent, Belgium Background: Physical training programs and improvement of general fitness have become standard components of modern care in several chronic disorders but data in IBD are limited. We aimed to test the ability of patients with IBD to improve their physical performance and to work towards an athletic challenge in a pilot project managed by a national patient association with expert nursing and medical support. Methods: A monitored training program with repeated testing was offered to patients with IBD to prepare them for an ascent of Mt Ventoux, 1912 m. Patients and support team
Nurses poster presentations members were recruited through the Belgian IBD support groups network. Progress of performance over a period of 10 months was monitored by repeated heart rate based endurance tests. Questionnaires were collected from all participants to assess disease characteristics and to minimize medical risks. Baseline blood results (Hb, Hct, CRP), were recorded when available. One month after completing the project patients were polled with a Likert scale questionnaire about the impact of the challenge on living with their disease. Two Olympic athletes publicly supported the program. Results: A total of 23 patients (median age 46 (25 74), 16 M/7F) with a diagnosis of CD (14) or UC (9) participated in the project. Baseline fitness levels were highly variable. After the training program, the median change in peak performance expressed as IAND Watts was 15% ( 16% to 57%) and 77% increased their performance level. The body weight did not change. In the actual one day challenge in Sep 2012 22 patients attempted to reach the summit. All but one cyclist and 100% of the hikers succeeded and all achieved their personal predefined goal. Symptoms interfering with the ascent included abdominal cramping, urgency and pelvic floor discomfort. In 3 cases these led to intervention by nursing staff or termination of the attempt. Eighty-seven, 75, 63 and 75% of patients felt that the project had positively influenced their performance, self-esteem, quality of life and coping strategies respectively, but only 38% felt a positive impact on fatigue. Worsening of symptoms during the challenge was recorded by 6%. Conclusions: This pilot project shows that patient empowerment through a monitored training program and an athletic challenge is feasible in IBD and has a positive influence on disease perception and quality of life, but not on fatigue. Long term programs are needed to study the influence of physical training on disease outcomes.
S299 injection of infliximab) with varying results. A high percentage of patients required surgical treatment, the majority (60%) by placement of setons and/or simple drainage (31%). A temporary colostomy was performed in 4 patients (7.8%) and radical proctectomy was performed in 3 cases (6%). 72.5% of patients required admission, primarily due to surgery, 90% of which were for a short period (48 72 hours). The majority of cases (88.24%) were controlled in the nursing clinic with dressing changes, psychosocial support and early detection of recurrences (66%). Conclusions: The percentage of patients with complicated fistula disease in our unit is similar to that seen in the majority of published studies, as are the treatments offered. Notable is the combined medical-surgical treatment strategy: biological therapy+setons. Specialized nursing care plays an important role in the early detection and follow-up of patients with complex fistulas, as well as help and support in the loss of quality of life involved. N009 Confirmed: the knowledge of inflammatory bowel disease patients is poor
M. Morete1 *, P. Puig1 , L. Fuster2 , G. Vila3 , V. Ollero1 , A. Echarri1 . 1 Hospital A. Marcide, Gastroenterology, Ferrol, Spain, 2 Hospital A. Marcide, Pharmacy, Ferrol, Spain, 3 Hospital A. Marcide, Infusion Unit, Ferrol, Spain
M. Sephton1 *, S. Tattersall2 , K. Kemp3 , R. Campbell4 , J. Dougherty5 , A. Fergusson6 , L. Gray7 , B. Gregg8 , A. Hurst9 , T. Law10 , L. Parkinson11 , V. Hall2 . 1 University Hospital South Manchester, Gastroenterology, Manchester, United Kingdom, 2 Royal Bolton Hospital, Gastroenterology, Greater Manchester, United Kingdom, 3 Manchester University, Nursing Department, Manchester, United Kingdom, 4 Stepping Hill Hospital, Gastroenterology, Stockport, United Kingdom, 5 Warrington & Halton Hospital, Gastroenterology, Warringtion, United Kingdom, 6 East Lancashire Hospitals, Gastroenterology, Blackburn, United Kingdom, 7 Countess of Chester Hospital, Gastroenterology, Chester, United Kingdom, 8 Royal Liverpool & Broadgreen University Hospitals, Gastroenterology, Liverpool, United Kingdom, 9 University Hospital Aintree, Gastroenterology, Liverpool, United Kingdom, 10 Pennine Acute Trust, Gastroenterology, Greater Manchester, United Kingdom, 11 Blackpool Teaching Hospitals, Gastroenterology, Blackpool, United Kingdom
Background: The incidence of perianal fistulas in IBD varies between 10 48% for Crohn’s disease (CD) and 5% for ulcerative colitis (UC), constituting a complication that affects patient quality of life and often requires urgent attention. New biological treatments and management in multidisciplinary units has improved clinical course among this complicated group of patients. Objectives: Retrospective analysis of patients with IBD and complex perianal fistulas in follow-up in our Unit over the last 15 years. Methods: The IBD Unit currently performs follow-up on 750 patients (CD: 350; UC: 400) whose most significant data has been collected in a database. In the first phase, patients with perianal disease were selected, however only complex fistulas were included. The type of medical treatment received, use of setons or need for drainage, index of recurrences and abscesses, number of proctectomies performed, as well as the number of patients in follow-up in the IBD Nursing Unit were evaluated. Results: 13.7% of patients with CD and 0.7% of patients with UC had complicated fistulas with no difference based on gender. 19.6% of patients remained in remission with azathioprine, with the use of biological therapies required in 80.3% of cases. During the follow-up period, methotrexate was used in 9 cases (17%), two of these in combination with biological therapy. We have used different strategies in refractory patients (hyperbaric chamber, oral or topical tacrolimus, topical treatment with 10% metronidazole, local
Background: The knowledge of Inflammatory Bowel Disease (IBD) patients has recently been deemed to be poor [1]. It’s not clear if this represents the knowledge of just a single hospital trust, or if it is representative of the whole IBD patient community. Furthermore, it is also unclear how satisfied patients are with their own knowledge. Methods: We repeated a prospective questionnaire based study using the Crohn’s and Colitis knowledge (CCKNOW) questionnaire across 8 different hospital trusts in the Northwest (NW) region of the UK. We also asked patients to rate their level of satisfaction with their level of knowledge of IBD. 127 patients were selected randomly from 8 different hospital trusts. We compared our results in the NW to the 139 questionnaires that have been previously completed and published from one hospital trust. Results: The number of correct answers per validated question was compared to previous published data from a single centre. The results of our study and previous published data are similar with the exception of 5 questions. It is difficult to clarify the rational for the variations in these 5 questions, but is probably due to a variation in the past experiences and type of patients completing the questionnaire, as these 5 questions were based on treatments as opposed to symptoms or anatomy. The mean and median CCKNOW score was 10.12 and 9 respectively in the NW cohort. Patients do not recognise their deficit in their knowledge because none of our patients reported dissatisfaction with their level of knowledge despite the results showing a poor level of IBD knowledge.
N008 Inflammatory bowel disease and complicated perianal fistulas. A 15 year follow-up