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PAPERS: Sarah Hewlett, John Kirwan, Jon Pollock, Kathryn Mitchell, Maggie Hehir, Peter S Blair, David Memel, and Mark G Perry Patient initiated outpatient follow up in rheumatoid arthritis: six year randomised controlled trial BMJ 2005; 330: 171 [Abstract] [Full text]

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Patient-initiated follow-up in RA - the pitfalls

Andrew N Bamji   (24 January 2005)

Limitations on generalizibility of remarkble study on new strategy of treatment in patients with rheumatoid arthritis

Willem F Lems, Prof Dr Ben AC Dijkmans   (4 March 2005)

Look before you leap!

John Ryan, Eithne Murphy and Maurice Barry   (17 June 2005)

Patient-initiated follow-up in RA - the pitfalls 24 January 2005
Andrew N Bamji, Consultant (Rheumatology/rehabilitation) Queen Mary's Hospital, Sidcup, Kent DA14 6LT, UK Send response to journal: Re: Patient-initiated follow-up in RA - the pitfalls	The "radical response management" outlined by the Bristol group for rheumatoid arthritis may provide patient satisfaction, but I am not convinced that it provides good or safe care. The experience described is based on a "standard" pattern of interval review at three or six months. Most rheumatologists I suspect offer a much more flexible pattern of follow-up ranging from emergency access with a flare to yearly, or even two yearly review - and such an approach may be just as effective as discharging patients to emergency access only. I have tried discharging “stable” RA patients and have been most unhappy with the outcomes. The capacity, and ability, of general practitioners to troubleshoot effectively may be limited and patient re- referral may be delayed to their detriment. All too often patients reappear and you wish you hadn’t left them to their own devices. It is very common for patients to defer contact because they “do not want to be a nuisance”. New guidelines for the monitoring of disease-modifying drugs may also limit the opportunity for rheumatologists to discharge patients from routine review. If GPs won’t prescribe some drugs (leflunomide is an example) then the prescriptions must be hospital-initiated. If there is a block to monitoring (and recent guidelines for the management of methotrexate prescribing have led, in our part of the world, to a move towards hospital-only management) then the system outlined is impossible to sustain. I have nearly 300 such patients, and if my local GPs take fright and refuse either to prescribe, or monitor, or both, then they will need to be reviewed. Lastly the advent of the biologic agents (and I have another 100-plus on these) generates an absolute requirement for follow-up. GPs do not prescribe these agents, and the submission of data to the British Society for Rheumatology Biologics register requires regular review. I entirely accept that regular short-term review may be unnecessary, but consider that discharge to patient-initiated follow-up is too far a swing to the opposite pole. RA should be managed like cancer; depending on good progress, follow-up intervals can be extended, but it is a high- risk strategy to abandon regular supervision altogether. Competing interests: None declared
Limitations on generalizibility of remarkble study on new strategy of treatment in patients with rheumatoid arthritis 4 March 2005
Willem F Lems, Rheumatologist VU University Medical Centre, Postbox 7057, 1007MB, Amsterdam, the Netherlands, Prof Dr Ben AC Dijkmans Send response to journal: Re: Limitations on generalizibility of remarkble study on new strategy of treatment in patients with rheumatoid arthritis	We think the paper of the Bristol group is remarkable, because they have investigated new strategies for follow-up of RA-patients. We agree with them that the strategy of patient initiated follow-up might reduce unnecessary reviews and increase the capacity for rapid response to disease flares. In addition, it was also associated with high satisfaction and confidence by the patients and the general practitioners. However, we have some remarks about the generalizability of the study. Moreover, we want to discuss that we have nowadays strong arguments that more intensive treatment of RA results in a favorable outcome (1,2). Besides more intensive treatment, the prognosis is also largely improved by the use of TNFblocking agents and combination therapy with conventional DMARDs and the use of these drugs earlier in the disease(3,4). In our opinion, the generalizability of the study is limited by: a) the study has excluded patients with early rheumatoid arthritis (disease duration at baseline 7 and 10 years). Since it has been clearly shown that radiological deterioration is usually larger in early RA (5), the absence of the difference in radiological damage over time between the groups cannot be generalized to patients with early RA. b) the baseline characteristics suggest that the patients have not only long disease duration, but also low disease activity, e.g. pain score of 3 (VAS), morning stiffness of 30 minutes and CRP of 11 mg/l. From this point of view, it can be suggested that the absence in outcome between the groups is related to low disease activity at baseline, which is generally accepted as an important prognostic factor for a relatively favorable outcome (6). c) The patients who did not participate were older and had more severe disease. However, the most important issue is the low number of hospital reviews in the control group of the Bristol study: 13 in 6 years. Recently, it has been shown that tight control (the patients were seen every month by the rheumatologist and a disease activity score was calculated) was superior to conventional treatment (every 3 months without routinely measurement of disease activity)(1). The % of responders was much larger in the intensive group: 82% versus 44% (1). The positive effect of tight monitoring and the use of local corticosteroid injections has been shown before (2). In summary, we are impressed by the data from Bristol, but the baseline characteristics of the patients and particularly recent developments in strategies for agressive treatment of RA limit the introduction of patient initiated follow-up. WF Lems (Rheumatologist) BAC Dijkmans (Professor of Rheumatology) Vrije Universiteit medisch centrum, Amsterdam, the Netherlands 1. Grigor C, Capell H, Stirling A, et al. Effect of a treatment strategy of tight control for RA (TICORA): a single blind randomized controlled trial. Lancet 2004: 364: 263-7. 2. Conaghan PG, O'Connor P, McGonagle D, et al. Elucidation of the relationship between synovitis and bone damage: a randomized magnetic resonance imaging study of individual joints in patients with early rheumatoid arthritis. Arthritis Rheum. 2003 Jan;48(1):64-71. 3. Olsen NJ, Stein CM. New drugs in rheumatoid arthritis. New Engl J Med 2004; 350: 2167-9 4) Boers M. Understanding the window of opportunity concept in early rheumatoid arthritis. Arthritis Rheum. 2003;48(7):1771-4. 5) van der Heijde DM, van Leeuwen MA, van Riel Pl, van de Putte LB. Radiological progression on radiographs of hand and feet during the first 3 years of RA measured according to Sharp`s score. J Rheumatol. 1995 Sep;22(9):1792-6. 6). Jansen LM, van der Horst-Bruinsma IE, van Schaardenburg D, Bezemer PD, Dijkmans BA. Predictors of radiographic joint damage in patients with early rheumatoid arthritis.Ann Rheum Dis. 2001 Oct;60(10):924-7. Competing interests: None declared
Look before you leap! 17 June 2005
John Ryan, Specialist Registrar Connolly Hospital, Blanchardstown, Dublin 15, Ireland, Eithne Murphy and Maurice Barry Send response to journal: Re: Look before you leap!	We read with interest the recent article by Hewlett et al.(1) The authors highlight the increasing workloads faced by Rheumatologist and the inflexibility of “routine review” outpatient-scheduling. Novel approaches to clinic scheduling are to be welcomed. Hewlett et al present the data from a six year randomised trial in patients with established rheumatoid arthritis. The authors suggest that patients who initiated their own appointments, required fewer outpatient reviews, were happy with the service provided and had similar clinical outcomes to those who were followed in the conventional manner. However, this clinical trial setting does not reflect a true “patient initiated” service. Clinicians should be aware of the numerous safety nets, which ensured that patients remained in contact with rheumatology services. For the purposes of the trial, all patients had a formal clinic appointment every 2 years. The authors acknowledge that acts as a safety net and may have had an effect on outcomes. However, the authors failed to mention that in the first two years of the trial, all patients received a detailed questionnaire every three months. (2) Questionnaires were analysed by trained nursing staff and those with 20% deterioration were telephoned and advised to attend for medical attention. Those failing to complete questionnaires were contacted to ensure ongoing follow up if required. The authors do not clarify if these “safety net” procedures were kept in place for the entire 6 years of the trial. (1,2,3) This information would be useful in determining the true nature of “patient initiated” reviews particularly after the initial 2 years of the trial. Questionnaires are recognised to be as sensitive as detailed physician assessment in determining disease activity. (4) A pertinent finding of this trial may be that the use of simple self-administered questionnaires is a potential means of adequately assessing patients without the need for formal clinic review. Perhaps the use of questionnaires every few months may be a sufficient safety net in clinical practice. Further research is required; furthermore a thorough analysis of resource use in terms of questionnaire analysis, database management and personnel to trace patients is needed. We feel this article does not adequately address the use of the safety nets, particularly in the early stages of the trial. Clinicians reading this article could mistakenly introduce exclusively patient initiated clinics unaware of the safety nets used in this trial. Further research is clearly required before rushing to introduce patient initiated clinic reviews as the standard of care in the treatment of RA. References: 1. Hewlett S, Kirwan J, Pollock J. et al. Patient initiated outpatient follow up in rheumatoid arthritis: six year randomised controlled trial. BMJ 2005;330;171-177. 2. Hewlett S, Mitchell K, Haynes J et al. Patient initiated hospital follow-up for rheumatoid arthritis. Rheumatology 2000;39;990-997. Kirwan JR, , Hewlett S et al . Clinical and psychological outcome from a randomised controlled trial of patient-initiated direct-access hospital follow-up for rheumatoid arthritis extended to 4 years. Rheumatology 2003;42:422-426 Pincus T, Sokka T. Quantitative measures for assessing rheumatoid arthritis in clinical trials and clinical care. Best Practice & Research Clinical Rheumatology. 17(5) 753-781. 2003. Competing interests: None declared