Ulcerative colitis outpatient management - Wiley Online Library

Boyle et al.

26 Schutte AE, Shemesh T, Rowley K, Best JD,

29 Apridonidze T, Essah PA, Iuorno MJ,

influence of criteria for the diagnosis of PCOS. Eur J Endocrinol 2006; 154: 141–5.

McDermott R, O’Dea K. The metabolic

Nestler JE. Prevalence and characteristics

syndrome and changing relationship be-

of the metabolic syndrome in women

tween blood pressure and insulin with age,

with polycystic ovary syndrome. J Clin

Pocognoli P, Cognigni GE et al. Prominent

as observed in Aboriginal and Torres Strait

Endocrinol Metab 2005; 90: 1929–35.

role of low HDL-cholesterol in explaining

30 Wijeyaratne CN, Seneviratne Rde A,

the high prevalence of the metabolic syn-

Islander peoples. Diabet Med 2005; 22: 1589–97.

Dahanayake S, Kumarapeli V, Palipane E,

32 Gambineri A, Repaci A, Patton L, Grassi I,

drome in polycystic ovary syndrome. Nutr

Kuruppu N et al. Phenotype and metabolic

Metab Cardiovasc Dis 2009; 19: 797–804.

syndrome and incident coronary heart dis-

profile of South Asian women with poly-

33 Shroff R, Syrop CH, Davis W, Van Voorhis

ease in Australian Indigenous populations.

cystic ovary syndrome (PCOS): results of a

BJ, Dokras A. Risk of metabolic complica-

Obesity (Silver Spring) 2012; 20: 1308–12.

large database from a specialist Endocrine

tions in the new PCOS phenotypes based

Clinic. Hum Reprod 2011; 26: 202–13.

on the Rotterdam criteria. Fertil Steril 2007;

27 Li M, McCulloch B, McDermott R. Metabolic

28 Janus ED, Laatikainen T, Dunbar JA, Kilkkinen A, Bunker SJ, Philpot B et al.

31 Carmina E, Napoli N, Longo RA, Rini GB,

88: 1389–95. 34 Després JP. Is visceral obesity the cause of

Overweight, obesity and metabolic syn-

Lobo RA. Metabolic syndrome in polycystic

drome in rural southeastern Australia. Med

ovary syndrome (PCOS): lower prevalence

the metabolic syndrome? Ann Med 2006;

J Aust 2007; 187: 147–52.

in southern Italy than in the USA and the

38: 52–63.

Ulcerative colitis outpatient management: development and evaluation of tools to support primary care practitioners A. L. Bennett,1 S. Buckton,2 I. Lawrance,3,4 R. W. Leong,5,6 G. Moore7 and J. M. Andrews8 1

Department of Gastroenterology, Royal Adelaide Hospital, 2Department of Gastroenterology, Nambour General Hospital, Nambour, Queensland, 3Centre for Inflammatory Bowel Diseases, Saint John of God Hospital, 4School of Medicine and Pharmacology, University of Western Australia, Harry Perkins Institute for Medical Research, Perth, Western Australia, 5Gastroenterology and Liver Services, Concord Hospital, 6Sydney Medical School, Sydney, New South Wales, 7 Inflammatory Bowel Diseases, Gastroenterology and Hepatology Unit, Monash Medical Centre, Melbourne, Victoria, Australia and 8Inflammatory Bowel Disease Services, Department of Gastroenterology and Hepatology, School of Medicine, University of Adelaide at Royal Adelaide Hospital, Adelaide, South Australia

Key words Key words rapid response team, adult, effectiveness, PCOS, indigenous, metabolic syndrome, implementation. obesity, reproductive. Correspondence Correspondence Ian A. Scott, Department of Internal Medicine Jacqueline Boyle, Monash Centre for Health and Clinical Epidemiology, Level 5A, Princess Research Implementation, School of Public Alexandra Hospital, Ipswich Road, Brisbane, Qld Health and Preventive Medicine, Monash 4102, Australia. University, PO Box 1108, Clayton, Vic. 3168, Email: [email protected] Australia. Email: [email protected] Received 22 June 2015; accepted 23 June 2015. Received 24 May 2015; accepted 9 September 2015. doi:

doi:10.1111/imj.12872

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Abstract Background: Current models of care for ulcerative colitis (UC) across healthcare systems are inconsistent with a paucity of existing guidelines or supportive tools for outpatient management. Aims: This study aimed to produce and evaluate evidence‐based outpatient management tools for UC to guide primary care practitioners and patients in clinical decision‐making. Methods: Three tools were developed after identifying current gaps in the provision of healthcare services for patients with UC at a Clinical Insights Meeting in 2013. Draft designs were further refined through consultation and consolidation of feedback by the steering committee. Final drafts were developed following feasibility testing in three key stakeholder groups (gastroenterologists, general practitioners and patients) by questionnaire. The tools were officially launched into mainstream use in Australia in 2014. Results: Three quarters of all respondents liked the layout and content of each tool. Minimal safety concerns were aired and those, along with pieces of information that were felt to be omitted, that were reviewed by the steering committee and incorporated into the final documents. The majority (over 80%) of respondents felt that the tools would be useful and would improve outpatient management of UC. Conclusion: Evidence‐based outpatient clinical management tools for UC can be developed. The concept and end‐product have been well received by all stakeholder groups. These tools should support non‐specialist clinicians to optimise UC management and empower patients by facilitating them to safely self‐manage and identify when medical support is needed.

© 2015 Royal Australasian College of Physicians

Ulcerative colitis management tools

Introduction Ulcerative colitis (UC) is a chronic disease characterised by variable periods of relapse and remission. Long‐term management should be aimed at achieving remission, preventing relapse and, if unavoidable, to minimise the impact of flares. Failure to implement this approach leads to longer and more frequent periods of active disease and risks, prolonged exposure to steroids, their adverse effects and morbidity due to UC complications,1 thereby increasing the burden on the patient, the healthcare system and the economy.1 In Australia, UC is estimated to affect 33000 people with 846 new cases and $34.1 million spent on healthcare annually.2 Current models of care for people with UC across healthcare systems are inconsistent with inequitable access to patient support and education and a lack of clear consistent guidelines for non‐specialist outpatient management.1 Furthermore, primary healthcare practitioners each deal with low inflammatory bowel disease (IBD) numbers and consistent with this, do not have a high level of knowledge, or confidence, in providing up‐to‐date care to people with UC.3 By addressing these issues, improved quality of life and work productivity and reduced morbidity and economic burden may be achieved.1 Part of the difficulty providing optimal UC care stems from the lack of educational support and guidelines for non‐gastrointestinal specialist, primary healthcare practitioners. Existing treatment guidelines for IBD are clearly outlined by several international organisations4–7 including the European Crohn's and Colitis Organisation;8

Funding: Provided by Shire Australia for the administration, teleconferencing and artwork necessary to develop the tools; however, the Steering Committee had full intellectual control over the meeting theme, content and tools development with no directional influence from Shire or any other companies. Conflict of interest: A. L. Bennett has served as a speaker for Janssen, Abbvie and Shire, and has received research funding from Janssen and Abbvie. S. Buckton served as a speaker, a consultant and an advisory board member for Ferring Shire Abbvie and Janssen. I. Lawrance has served as an advisory board member for Schering‐Plough (Merck) Crohn's disease Advisory board, Abbott AustralasiaCrohn's disease Advisory board, Abbott Australasia Crohn's Disease Advisory Board, Takeda Pharmaceuticals Australia, Hospira Advisory Board, Jannsen Cilag Advisory Board. R. W. Leong has been an advisory board member for Ferring, Aspen, Takeda, Janssen, Hospira and AbbVie and has received research funding from Shire. G. Moore has served as a speaker, a consultant and an advisory board member for Janssen, Sherring Plough, MSD, Abbvie, Abbott, Takeda, Shire, Ferring, Orphan, Astra Zeneca, Nycomed, Pharmatel Fresenius Kabi. J. M. Andrews has served as a speaker, a consultant and an advisory board member for Janssen, Abbvie, Abbott, MSD, Takeda, Shire, Hospira, Ferring, Orphan, Astrazeneca, Nycomed. © 2015 Royal Australasian College of Physicians

however, these guidelines are complex and are designed to support specialist care. We recently performed a systematic review9 that documented a paucity of UC educational tools and/or guidelines for primary healthcare practitioners and an absence of action plans with individualised treatment plans for UC. This is despite two separate surveys reporting that 70% of general practitioners (GP) would value such clinical support tools3,10 and contrasts with chronic diseases such as asthma, congestive cardiac failure and diabetes where such tools are readily found, and additionally, at least for asthma, action plans are also easily discovered.9 Data from the Royal Adelaide Hospital (J.M. Andrews, pers. comm., 2015) and Flinders Medical Centre (P.A. Bampton, pers. comm., 2015) IBD databases revealed 1100 and 1300 patients with IBD respectively. Given that approximately 4700 people are estimated to have IBD in South Australia based upon 2005 statistics,2 approximately 50% of IBD patients are not seen regularly by a gastroenterologist. The quality of GP care is therefore vital. In view of the logical value of quality primary healthcare, the documentation that most GP do not have a high level of comfort or knowledge of IBD3 and the lack of tools to support them currently,9 we set out to develop such tools. Our aim, therefore, was to produce evidence‐ based educational tools for primary healthcare practitioners for outpatient management of UC and to evaluate them through stakeholder consultation prior to launching the tools publicly.

Methods Design of tools: needs' analysis, consultation process and initial tools development A steering committee of four gastroenterologists with large IBD‐focussed teaching hospital practices (JMA, GM, RL, IL) and one IBD nurse practitioner (SB) developed a Clinical Insights 2013 meeting programme following a needs' assessment identifying key objectives. During the steering committee discussions, the key objective identified was to improve the outcome of non‐ specialist UC outpatient management. As the aim of the meeting was to share best practices and identify gaps in the provision of healthcare for patients with UC, various stakeholders including psychologists, dieticians, IBD nurses, patient organisation representatives, IBD patients, GP and gastroenterologists were targeted and invited to attend. The meeting (Sydney, March 2013) was held over 2 days with 43 stakeholders. Delegates were sent pre‐reading of UC overviews and guidelines8,11 and examples of treatment action plans for other chronic diseases. The meeting 1255

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content consisted of a mixture of expert talks detailing evidence‐based UC management and dietary, psychological, social aspects of UC in addition to small group workshops. Workshops focussed on compliance, challenges in offering non‐specialist care, lessons from other chronic disease management tools, safety and acceptability of support tools and practical aspects of what could/should be included in tools. Feedback from workshops was presented to the meeting as a whole and an in‐principle consensus agreed prior to the meeting's conclusion. Three draft clinical tools were endorsed for further development. The steering committee met on several further occasions to progress and refine the tools. Once the tools were at an advanced stage, all three were circulated to all delegates of the original meeting for consultation. Feedback was considered and adopted by consensus decided by the steering committee. Following which, the second draft designs were further refined through consultation and consolidation of feedback.

Tools Tool 1 – Clinician's guide to UC management This two‐sided guide was designed to facilitate safe, evidence‐based, guided management of patients with UC (Fig.1). It provides recommendations regarding clinical assessment and management of outpatients, and importantly, highlights and provides advice regarding when specialist referral is required. Tool 2 – Differentiating between IBS and IBD This one page guide aims to help better differentiate between irritable bowel syndrome and IBD, as it is a recognised area of clinical uncertainty distinguishing between these diagnoses (Fig.1). This document aims to assist healthcare practitioners in identifying irritable bowel syndrome patients more easily, which may in return lead to earlier and better care in irritable bowel syndrome, likely IBD patients being referred earlier avoiding therapeutic/diagnostic delay and prevent inappropriate treatment escalation in IBD. Tool 3 – ‘My gut feeling’ action plan This two‐sided tool guides and empowers patients with known UC in safe, self‐assessment and initial management of changes in their clinical state and serves as a document for healthcare practitioners to refer to as a record of each patient's IBD history (Fig.1). Generic information about UC is included and the document can be tailored to individual requirements with details of personal UC history, current management plan and advice in the event of a flare. 1256

Feasibility testing In their ‘pre‐final’ form, three key stakeholder groups (gastroenterologists, GP and patients) were invited to review the tools through structured surveys distributed by mail, email and face‐to‐face, with a letter of invitation explaining the study and a copy of each tool. Questions were both multiple choice and open‐ended, and related to each tool's layout, content, usefulness and safety (see Appendix). Completed de‐identified surveys were returned by fax, reply‐paid envelope or online at a SurveyMonkey site. Gastroenterologists (expert clinicians) were recruited at the 2013 Australian Gastroenterology Week conference and at four South Australian metropolitan teaching hospitals: Royal Adelaide Hospital, Flinders Medical Centre, Queen Elizabeth Hospital and Lyell McEwin Hospital. Gastroenterologists employed where steering committee members worked (Queensland, Victoria, New South Wales and Western Australia) were also invited. GP (non‐expert clinicians) were recruited through face‐ to‐face contact and postal delivery of the survey pack with approximately 80 SA GP in large rural centres and 150 GP in large metropolitan practices approached. Interstate, snowballing techniques were used where local GP referring patients to centres where steering committee members worked were made aware of the study and invited to share electronic links with any other interested GP. Doctors were surveyed on all three tools. Adult patients with UC were invited to review the self‐ management tool ‘My gut feeling’ action plan. Email recruitment in South Australia occurred through the use of two IBD centre databases at the Royal Adelaide Hospital and Flinders Medical Centre. A reminder email was sent after 1 month. Similar recruitment occurred interstate with steering committee members contacting patients on their respective IBD databases. IBD patient support and advocacy groups, IBD support and Crohn's and Colitis Association, who were involved in the original meeting, also invited patient members to participate. All feedback obtained was provided to the steering committee to further refine the documents. Ethics approval was obtained from the Royal Adelaide Hospital Research Ethics Committee.

Launch The three clinician guides were officially launched to gastroenterologists at the second National Clinical Insights meeting in August 2014 to promulgate the tools, report on their development and results from the feedback surveys. The further aim was to gain endorsement from expert clinicians so that the tools could be disseminated across multiple clinician and patient networks. © 2015 Royal Australasian College of Physicians


Figure 1 Inflammatory bowel disease management tool: Clinician's guide to ulcerative colitis (UC) management. © 2015 Royal Australasian College of Physicians

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Figure 1 Continued.

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Results In South Australia approximately 50 gastroenterologists, 230 GP and 185 UC patients from October 2013 to April 2014 were invited to participate. Due to using the snowballing recruitment technique, it is not possible to estimate the numbers approached interstate. In total, 46 gastroenterologists, 33 GP and 62 patients with UC returned completed surveys, with not all three surveys being completed by all participants.

Tool 1 – Clinician's guide to ulcerative colitis (UC) management Completed surveys were received by 44 gastroenterologists and 32 GP. A total of 40 gastroenterologists and 32 GP liked the content, whereas 36 gastroenterologists and 30 GP liked the layout. Vital pieces of information missing from the guide were nominated by 13 gastroenterologists, as did 3 GP. Common issues mentioned included advice re‐oral steroid use and wanting more information regarding medications. When respondents were asked what they liked best about the guide, the most frequent responses from both gastroenterologists and GP were that it was simple, concise and clear. When asked what they liked least, the majority (18 GP and 25 gastroenterologists) made no response or specifically replied ‘nothing’. Fifteen clinicians commented that the guide was ‘too busy, too rigid and included the investigation tool “Faecal Calprotectin”’ (which is not currently publically funded in Australia). Eleven gastroenterologists and three GP had safety concerns, which included that it was ‘too specific and that GPs would not be interested or that they would not have the time to use the guide’. The majority of practitioners (31/32 GP and 38/44 gastroenterologists) felt that the document would improve IBD management.

Tool 2 – Differentiating between IBS and IBD Completed surveys were received from 44 gastroenterologists and 33 GP. Forty two of 44 gastroenterologists and 32/33 GPs liked the content, whereas 37 gastroenterologists and 29 GP liked the layout. Eleven gastroenterologists and two GP reported that vital pieces of information were missing, including dietary low FODMAP advice (although it was present), psychological treatments (also already present), differential diagnoses and other irritable bowel syndrome management options. The best attributes of the document were reported similarly by both cohorts as simple, clear, concise and colourful with specific positive mention of the flow chart approach. The majority of gastroenterologists and GP reported ‘nothing’ when asked what they liked least about the guide. Other responses included that the guide was ‘too busy and complex’ and ‘that it included the Faecal calprotectin’ (only objection was lack of third‐party © 2015 Royal Australasian College of Physicians

funding). Five gastroenterologists had safety concerns including that ‘it may result in the under‐treatment of IBD, that GPs would not consider differential diagnoses’ and ‘that many GPs would not read it’. One GP had a safety concern stating that they ‘did not feel comfortable in making the diagnosis’ (of irritable bowel syndrome). A total of 37 gastroenterologists and 32 GP thought it would improve IBD management.

Tool 3 – ‘My gut feeling’ action plan Gastroenterologist/GP Completed surveys were received from 46 gastroenterologists and 32 GP. Forty gastroenterologists and all 32 GP liked the content and 41 gastroenterologists and 30 GP liked the layout. Eleven gastroenterologists and one GP felt that vital pieces of information were missing, including patient weight (added), surveillance procedures (information increased), vaccination history (section augmented) and talking points for pregnancy (resource link added) and travel. Both groups responded similarly when asked what they liked best: clear, straight‐forward, comprehensive, patient centred and included an individualised action plan. When asked what they liked least, 25/46 gastroenterologists and 19/32 GP did not reply or stated ‘nothing’. Negative comments included ‘too complex, poor wording and double sided layout’. Eight gastroenterologists and two GP had safety concerns; however, the only specific comment (by gastroenterologist) was they did not want their patient self‐medicating. Forty gastroenterologists and 26 GPs thought other practitioners would use it and 42 gastroenterologists were happy to endorse the document and use it to co‐manage patients compared with 28 GP happy to endorse it and 31 GPs happy to co‐manage patients. Patients Feedback was received from 62 patients. Fifty‐three liked the content of the document and 54 liked the layout. The best aspects of the document were ‘flare advice, inclusion of a diagram and being colour‐coded, comprehensive and straight‐forward’. Twenty‐one felt vital pieces of information were missing, common responses being: ‘dietary advice, sections to record over the counter medication use, drug monitoring and medication changes’. When they asked what they liked least, 33 patients left the question blank or reported ‘nothing’. Other responses included: ‘it wasn't available in the past, it was only a paper document and not available online and it was too wordy’. Fifty‐two patients thought the action plan would be useful and 53 thought others would use the guide. Safety concerns were reported by nine patients, including the ‘lack of space for allergies and other symptoms in the action plan and the idea that it may replace regular gastroenterologist reviews’. Fifty‐one 1259

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Figure 2 Inflammatory bowel disease management tool: Differentiating IBS and IBD.

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Figure 3 Inflammatory bowel disease management tool: ‘My gut feeling’ action plan.


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Figure 3 Continued.

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patients would be happy to use the guide and 50 would recommend it to others.

Discussion This is the first study to develop, feasibility test and launch doctor and patient education guides for non‐specialist and primary healthcare practitioners to support safe, evidence‐ based outpatient management of UC in addition to providing a UC action plan. Whilst UC management guidelines are outlined by the European Crohn's and Colitis Organisation,8 they are not designed for the primary care setting. In primary care, GP generally only have 2–10 people with IBD in their caseload and their IBD knowledge and comfort in management is suboptimal.3 Yet there is a near absence of appropriate guidelines in the literature designed specifically for this cohort as shown in a recent systematic review.9 This is in contrast to other chronic illnesses such as asthma, congestive cardiac failure and diabetes, where tools including action plans are readily found.9 The European Crohn's and Colitis Organisation quality of healthcare group addressed the importance of this issue in a paper12 concerning the formation of a consensus of simple guidelines for GP to optimise one aspect of IBD healthcare. However, since publication in 2008, only one booklet has been produced by the American Gastroenterology Association outlying IBD patients' self‐management strategies through the use of ‘action plan tools’.13 The need for such guidelines derives from several key points. First, evidence exists that GP lack IBD management experience. Primary healthcare practitioners play a vital role in the care of patients with UC, particularly as specialist care is more costly, and not always conveniently available in all jurisdictions. They are usually the first point of contact for a patient presenting with new symptoms consistent with a diagnosis of UC, and for known people with UC having a possible flare. Moreover, they are ideally positioned to conduct day‐to‐day management in between specialist appointments, closer to patients' homes and at lower cost to healthcare systems. Despite this, previous literature has addressed the quality of GP IBD care and found that a significant proportion of GP were uncomfortable in general with IBD and with many commonly used IBD therapies.3 Second, a large burden of patients with IBD can be managed in the outpatient setting. Mild to moderately active UC has repeatedly been proven to be effectively treated with five aminosalicylic acid formulations for induction14 and maintenance of remission.15 Such treatment regimens can be safely and efficiently directed from an outpatient setting by primary healthcare practitioners. Langholz et al.16 and © 2015 Royal Australasian College of Physicians

Munholm et al.17 and more recently Burisch et al.18 showed in European epidemiological cohorts that a minority of both UC and Crohn disease patients run a severe and aggressive course. Whilst this cohort still needs specialist guidance, the indolent to mild IBD cohort exists on a large scale and can be managed by GP. Thus, we are obliged to help them do this well, rather than ignoring this patient group until they encounter specialist care. Lastly, there are no consistent guidelines upon discharge for the coordination of support outside IBD clinics. Referral processes are often unclear, and unfortunately, a substantial proportion of patients commonly visit several healthcare practitioners without effective communication or coordination of care.1 There is a clear imperative for addressing the variation in care received by UC patients worldwide. Addressing these problems in the care model may lead to improved healthcare outcomes.2 With the increasing need to look into techniques to improve the outpatient management of IBD patients, apart from up‐skilling GP, another strategy should be to empower patients and thus focus on supporting safe self‐management. This has been demonstrated to improve outcomes of symptoms, psychological well‐ being and healthcare resource use.19 Action management plans are a form of self‐management if designed and completed appropriately and have been shown to improve healthcare outcomes in other chronic illnesses such as asthma.20 To our knowledge, our action plan is the first UC‐specific document to be produced and used in clinical care. All three tools were designed with evidence base and feasibility testing insured that the documents were repeatedly critically appraised, by all major stakeholders prior to dissemination. Testing insured that safety concerns, content and usefulness were reviewed. From the results, we can see that over 75% of all participants like the layout and content of each resource. Minimal safety concerns were aired and of those that were, together with pieces of information that were felt to be left out, were reviewed by the steering committee and the final documents adjusted accordingly. Reassuringly, the majority of healthcare practitioners interviewed felt that the documents would be useful and would improve IBD management.

Conclusion Timely intervention and proactive management are ideal to optimise the care of people with UC in the community. Educational resources for non‐specialist clinicians to support and optimise patient management and action plans aimed at educating and empowering patients are important to improve healthcare outcomes. This paper 1263

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presents three such tools designed with these key elements in mind and critically appraised by key stakeholder groups. They are now freely available to download by anyone worldwide from the Crohn's

References

and Colitis Association 21 website (https://www. crohnsandcolitis.com.au/find‐support/clinical‐insights‐tools/) and are also hosted within Australian versions of GP software: Medical Director and Best Practice.

Gastroenterology Organization practice

15 Feagan BG, Macdonald JK. Oral 5‐

guidelines for the diagnosis and manage-

aminosalicylic acid for maintenance of re-

Improving inflammatory bowel disease

ment of IBD in 2010. Inflamm Bowel Dis

mission in ulcerative colitis. Cochrane

care across Australia. 2013 [cited 2014 Oct

2010; 16: 112–24.

1 PricewaterhouseCoopers Australia (PwC).

6]. Available from URL: https://www.

8 Dignass A, Lindsay JO, Sturm A, Windsor

Database Syst Rev 2012; CD000544. 16 Langholz E, Munkholm P, Davidsen M,

crohnsandcolitis.com.au/site/wp‐content/

A, Colombel JF, Allez M et al. Second Eu-

Binder V. Course of ulcerative colitis: anal-

uploads/PwC‐report‐2013.pdf

ropean evidence‐based consensus on the

ysis of changes in disease activity over

2 Access Economics. The economic costs of Crohn's disease and ulcerative colitis. Australian Crohn's and Colitis. 2007 [cited 2014 Oct 6]. Available from URL: http://

diagnosis and management of ulcerative colitis part 2: current management. J Crohns Colitis 2012; 6: 991–1030. 9 Bennett AL, Munkholm P, Andrews JM.

www.crohnsandcolitis.com.au/content/

Tools for primary care management of in-

Final_IBD_report_9_June.pdf

flammatory bowel disease: do they exist?

3 Tan M, Holloway RH, Lange K, Andrews JM. General practitioners' knowledge of

World J Gastroenterol 2015; 21: 4457–65. 10 Sossai P, Filippetti F, Muselmani AA,

years. Gastroenterology 1994; 107: 3–11. 17 Munkholm P, Langholz E, Davidsen M, Binder V. Disease activity courses in a regional cohort of Crohn's disease patients. Scand J Gastroenterol 1995; 30: 699– 706. 18 Burisch J, Pedersen N, Cukovic‐Cavka S, Turk N, Kaimakliotis I, Duricova D et al.

and attitudes to inflammatory bowel dis-

Catalini G. Inflammatory bowel diseases

Initial disease course and treatment in an

ease. Int Med J 2012; 42: 801–7.

and the general practitioner's role in a re-

inflammatory bowel disease inception co-

gion of Central Italy. Clin Exp Gastroenterol

hort in Europe: the ECCO‐EpiCom cohort.

4 Mowat C, Cole A, Windsor A, Ahmad T, Arnott I, Driscoll R et al. Guidelines for the management of inflammatory bowel disease in adults. Gut 2011; 60: 571–607. 5 Kornbluth A, Sachar D. Ulcerative colitis practice guidelines in adults: American

2010; 3: 27–31.

Inflamm Bowel Dis 2014; 20: 36–46.

11 Ordas I, Eckmann L, Talamini M, Baumgart

19 Barlow C, Cooke D, Mulligan K, Beck E,

D, Sandborn W. Ulcerative colitis. Lancet

Newman S. A critical review of self‐

2012; 380: 1606–19.

management and educational interven-

12 Elkjaer M, Moser G, Reinisch W,

tions in inflammatory bowel disease. Gastroenterol Nurs 2010; 33: 11–8.

College of Gastroenterology, Practice Pa-

Durovicova D, Lukas M, Vucelic B et al. IBD

rameters Committee. Am J Gastroenterol

patients need in health quality of care

2010; 105: 501–23.

ECCO consensus. J Crohns Colitis. 2008; 2:

management education for adults with

181–8.

asthma. Cochrane Database Syst Rev 2003;

6 Lichtenstein G, Abreu M, Cohen R, Tremaine W. American Gastroenterological Association Institute medical position statement on corticosteroids, immunomodulators, and infliximab in

13 Kane S. IBD Self‐Management: The AGA Guide to Crohn's Disease and Ulcerative Colitis. Bethesda, MD: AGA Press; 2010. 14 Sutherland L, Macdonald JK. Oral 5‐

20 Powell H, Gibson PG. Options for self‐

CD004107. 21 Crohn's and Colitis Association. IBD management tools. 2014 [cited 2014 Dec 20]. Available from URL: https://www.

inflammatory bowel disease. Gastroenterol-

aminosalicylic acid for induction of remis-

crohnsandcolitis.com.au/find‐support/clin-

ogy 2006; 130: 935–9.

sion in ulcerative colitis. Cochrane Database

ical‐insights‐tools/

7 Bernstein CN, Fried M, Krabshuis JH, Co-

Sys Rev 2006; CD000543.

hen H, Eliakim R, Fedail S et al. World

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Appendix: Tool surveys Enhancing knowledge regarding the management of inflammatory bowel disease Survey 1 for GP and gastroenterologists – Clinician's guide to ulcerative colitis management 1 Do you like the content of the information sheet? a. Yes b. No Please explain 2 Are there any vital pieces of missing information that you feel would be important to include? a. Yes b. No If yes – please describe 3 What do like BEST about the information sheet? 4 What do you LEAST about the information sheet? 5 Do you like the layout of the information sheet? a. Yes b. No Please explain 6 Do you think that the information sheet would be useful for GP? a. Yes b. No Please explain 7 Would you have any concerns about GP using this? a. Yes b. No Please explain 8 Do you think this tool is likely to improve IBD management? a. Yes b. No Please explain

Survey 2 for GP and gastroenterologists – Differentiating between IBS and IBD 1 Do you like the content of the information sheet? a. Yes b. No Please explain 2 Are there any vital pieces of missing information that you feel would be important to include? a. Yes b. No If yes – please describe 3 What do like BEST about the information sheet? 4 What do you LEAST about the information sheet? 5 Do you like the layout of the information sheet? a. Yes b. No Please explain 6 Do you think that the information sheet would be useful for GPs? 7 Would you have any concerns about GPs using this? Please explain. 8 Do you think this tool is likely to improve IBD management? a. Yes b. No Please explain

Survey 3 for GP and gastroenterologists – My gut feeling (action plan) 1 Do you like the content of the action plan? a. Yes b. No Please explain 2 Are there any vital pieces of information that you feel would be important to include? a. Yes b. No If yes – please describe 3 What do like BEST about the action plan? 4 What do you LEAST about the action plan? 5 Do you like the layout of the action plan? a. Yes b. No Please explain 6 Do you think that action plan would be useful for patients? a. Yes b. No Please explain 7 Do you think that Gastroenterologists will utilise the action plan for their patients? a. Yes b. No Please explain 8 Do they have safety concerns? a. Yes b. No Please explain 9 Would you be happy to complete these plans with patients? a. Yes b. No 10 Would you be prepared to endorse them to referring doctors/GP? Patients? a. Yes b. No © 2015 Royal Australasian College of Physicians

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Survey 1 for UC patients – My gut feeling (action plan) 1 Do you like the content of the patient guide? a. Yes b. No Please explain 2 Are there any vital pieces of information that you feel would be important to include? a. Yes b. No If Yes, please describe what information? 3 What do like BEST about the patient guide? 4 What do you like LEAST about the patient guide? 5 Do you like the layout of the action plan? a. Yes b. No If No, please explain why? 6 Do you think that the action plan would be useful for patients? a Yes b. No If No, please explain why? 7 Do you think other patients would use this patient guide? a. Yes b. No If No, please explain why? 8 Do you have safety concerns with the use of this patient guide? a. Yes b. No If Yes, please explain these concerns? 9 Would you be happy to use this patient guide? a. Yes b. No If No, why not? 10 Would you recommend them to other patients with UC? a. Yes b. No c. Unsure If No, why not?

Safety and retention of combination triple disease-modifying anti-rheumatic drugs in new-onset rheumatoid arthritis L. Cummins,1,2 V. S. Katikireddi,1 S. Shankaranarayana,1 K. Y. C. Su,1 E. Duggan,1 V. Videm,1,3,4 H. Pahau1 and R. Thomas1,2 1

University of Queensland Diamantina Institute, Translational Research Institute, 2Princess Alexandra Hospital, Brisbane, Queensland, Australia, 3Department of Laboratory Medicine, Children’s and Women’s Health, Norwegian University of Science and Technology and 4Department of Immunology and Transfusion Medicine, St Olav University Hospital, Trondheim, Norway

Key words rheumatoid arthritis, agents, rapid response team,anti-rheumatic adult, effectiveness, medication persistence.. implementation. Correspondence Ranjeny Thomas, The University of Queensland Ian A. Scott, Department of Internal Medicine Diamantina Translational and Clinical Institute, Epidemiology, Level 5A,Research PrincessInstitute,Brisbane, QldIpswich 4102, Australia. Alexandra Hospital, Road, Brisbane, Qld Email: [email protected] 4102, Australia. Email: [email protected] Received 28 April 2015; accepted 9 August 2015. Received 22 June 2015; accepted 23 June 2015. doi:10.1111/imj.12896 doi:

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Abstract Background: While efficacy of combination treatment with methotrexate (MTX), sulfasalazine (SSZ) and hydroxychloroquine (HCQ) (‘triple therapy’) has been shown in clinical trials, few studies have examined its longevity in a real-life setting. Aim: Our aim was to assess the tolerability, longevity and efficacy of a triple diseasemodifying anti-rheumatic drug (DMARD) regimen initiated in new-onset rheumatoid arthritis (RA) patients. Methods: Patients who met 1987 American College of Rheumatology criteria for RA with disease duration less than 2 years were offered triple therapy upon diagnosis. Treatment was intensified according to a response-driven step-up algorithm, which included progression to leflunomide (LEF) or a biologic agent. Results: Of 181 new-onset RA patients, 119 commenced triple therapy. Median duration of triple therapy was 39 weeks, and 23.5% remained on it at last follow up, with median follow up 104 weeks. Continuous therapy with any three-DMARD combination (including LEF) occurred in 32% at last follow up, with median duration of 70 weeks. Cessation of at least one of MTX, SSZ or HCQ occurred because of an adverse event in 38%, remission in 7% and incomplete response in 28% of patients. SSZ accounted for 49% of initial drug withdrawals for an adverse event. Continuation of three-drug therapy did not significantly influence the proportion of patients achieving remission or low disease activity (LDA). Conclusions: Triple therapy in new-onset RA was reasonably well tolerated, persisting for median 39 weeks. SSZ intolerance commonly reduces longevity of triple therapy. Treating to the target of remission or LDA is more important than the number of DMARD continued. © 2015 Royal Australasian College of Physicians