Electronic Linkage for Inflammatory Bowel Disease to Deliver Joint Access to Health Reports
NCT ID: NCT02985476
Last Updated: 2016-12-07
Study Results
The study team has not published outcome measurements, participant flow, or safety data for this trial yet. Check back later for updates.
Basic Information
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COMPLETED
NA
61 participants
INTERVENTIONAL
2010-05-31
2011-08-31
Brief Summary
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The study made individualised reports available to patients and General Practitioners and gave much more detail about participants chronic disease and treatments, and evaluated its effectiveness in a randomised controlled feasibility trial.
One third of patients received care as usual, two thirds of patients received the intervention.
Detailed Description
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This study utilised Inflammatory Bowel Disease as an exemplar of chronic disease management.
To inform the intervention the investigators held a focus group with patients who told the investigators about their concerns relating to education, care planning and communication about their condition. The participants expressed a preference for individualised information about their care, and plans of what to do if symptoms increase.
The investigators departmental electronic patient record (GeneCIS), was extended to provide personalised, educationally enriched information to each participant about their Inflammatory Bowel Disease. The investigators customised GeneCIS to develop output reports i.e.: "My History", "My plan" and "My Update", that attach specific educational information to the detailed, structured clinical data held on the system, and shared this with participants and their General Practitioner.
Conditions
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Keywords
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Study Design
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RANDOMIZED
PARALLEL
SUPPORTIVE_CARE
SINGLE
Study Groups
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Interventional
Care as usual plus 8 weekly ELIJAH health reports shared with the participant and General Practitioner for 6 months i.e.: My history, My plan, My Update delivered via post or by email (dependant on participant preference) in addition to care as usual.
Health reports
Participants were sent 3 sets of individualised, educationally enriched health reports about their diagnosed inflammatory bowel disease history, care plan and updates on their recent health status, results or encounters with health care services.
Observational
Care as usual dictated by disease pathway of diagnosed inflammatory bowel disease i.e.; access to out-patient and in-patient hospital based care and community health resources via General Practitioner.
No interventions assigned to this group
Interventions
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Health reports
Participants were sent 3 sets of individualised, educationally enriched health reports about their diagnosed inflammatory bowel disease history, care plan and updates on their recent health status, results or encounters with health care services.
Eligibility Criteria
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Inclusion Criteria
2. Aged 18 to 90 years.
3. Under the care of Consultant Gastroenterologists.
4. Patient registered with collaborating General Practitioner practice.
Exclusion Criteria
18 Years
90 Years
ALL
No
Sponsors
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Swansea University
OTHER
The Health Foundation
OTHER
Phedra Dodds
OTHER
Responsible Party
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Phedra Dodds
Consultant Nurse
Principal Investigators
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John G Williams, MSc
Role: PRINCIPAL_INVESTIGATOR
Professor of Health Services Research
Locations
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Neath Port Talbot Hospital
Port Talbot, West Glamorgan, United Kingdom
Countries
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References
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Travis SP, Stange EF, Lemann M, Oresland T, Bemelman WA, Chowers Y, Colombel JF, D'Haens G, Ghosh S, Marteau P, Kruis W, Mortensen NJ, Penninckx F, Gassull M; European Crohn's and Colitis Organisation (ECCO). European evidence-based Consensus on the management of ulcerative colitis: Current management. J Crohns Colitis. 2008 Mar;2(1):24-62. doi: 10.1016/j.crohns.2007.11.002. Epub 2008 Jan 18. No abstract available.
Stange EF, Travis SP, Vermeire S, Reinisch W, Geboes K, Barakauskiene A, Feakins R, Flejou JF, Herfarth H, Hommes DW, Kupcinskas L, Lakatos PL, Mantzaris GJ, Schreiber S, Villanacci V, Warren BF; European Crohn's and Colitis Organisation (ECCO). European evidence-based Consensus on the diagnosis and management of ulcerative colitis: Definitions and diagnosis. J Crohns Colitis. 2008 Mar;2(1):1-23. doi: 10.1016/j.crohns.2007.11.001. Epub 2008 Jan 18. No abstract available.
Williams JG, Cheung WY, Russell IT, Cohen DR, Longo M, Lervy B. Open access follow up for inflammatory bowel disease: pragmatic randomised trial and cost effectiveness study. BMJ. 2000 Feb 26;320(7234):544-8. doi: 10.1136/bmj.320.7234.544.
Robinson A, Thompson DG, Wilkin D, Roberts C; Northwest Gastrointestinal Research Group. Guided self-management and patient-directed follow-up of ulcerative colitis: a randomised trial. Lancet. 2001 Sep 22;358(9286):976-81. doi: 10.1016/S0140-6736(01)06105-0.
Osman LM, Abdalla MI, Beattie JA, Ross SJ, Russell IT, Friend JA, Legge JS, Douglas JG. Reducing hospital admission through computer supported education for asthma patients. Grampian Asthma Study of Integrated Care (GRASSIC). BMJ. 1994 Feb 26;308(6928):568-71. doi: 10.1136/bmj.308.6928.568.
Politi P, Bodini P, Mortilla MG, Beltrami M, Fornaciari G, Formisano D, Munkholm P, Riis L, Wolters F, Hoie O, Katsanos K, O'Morain C, Shuhaibar M, Lalli P, De Falco M, Pereira S, Freitas J, Odes S, Stockbrugger RW; European Collaborative Study Group on Inflammatory Bowel Disease. Communication of information to patients with inflammatory bowel disease: A European Collaborative Study in a multinational prospective inception cohort. J Crohns Colitis. 2008 Sep;2(3):226-32. doi: 10.1016/j.crohns.2008.01.007. Epub 2008 May 16.
Richardson G, Bloor K, Williams J, Russell I, Durai D, Cheung WY, Farrin A, Coulton S. Cost effectiveness of nurse delivered endoscopy: findings from randomised multi-institution nurse endoscopy trial (MINuET). BMJ. 2009 Feb 10;338:b270. doi: 10.1136/bmj.b270.
Other Identifiers
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40189
Identifier Type: -
Identifier Source: org_study_id