The development and initial validation of a questionnaire to measure help-seeking behaviour in patients with new onset rheumatoid arthritis.

BACKGROUND: Early treatment for rheumatoid arthritis (RA) is vital. However, people often delay in seeking help at symptom onset. An assessment of the reasons behind patient delay is necessary to develop interventions to promote rapid consultation. OBJECTIVE: Using a mixed methods design, we aimed to develop and test a questionnaire to assess the barriers to help seeking at RA onset. DESIGN: Questionnaire items were extracted from previous qualitative studies. Fifteen people with a lived experience of arthritis participated in focus groups to enhance the questionnaire's face validity. The questionnaire was also reviewed by groups of multidisciplinary health-care professionals. A test-retest survey of 41 patients with newly presenting RA or unclassified arthritis assessed the questionnaire items' intraclass correlations. RESULTS: During focus groups, participants rephrased questions, added questions and deleted items not relevant to the questionnaire's aims. Participants organized items into themes: early symptom experience, initial reactions to symptoms, self-management behaviours, causal beliefs, involvement of significant others, pre-diagnosis knowledge about RA, direct barriers to seeking help and relationship with GP. The test-retest survey identified seven items (out of 79) with low intraclass correlations which were removed from the final questionnaire. CONCLUSION: The involvement of people with a lived experience of arthritis and multidisciplinary health-care professionals in the preliminary validation of the DELAY (delays in evaluating arthritis early) questionnaire has enriched its development. Preliminary assessment established its reliability. The DELAY questionnaire provides a tool for researchers to evaluate individual, cultural and health service barriers to help-seeking behaviour at RA onset.

General practitioners' perspectives on campaigns to promote rapid help-seeking behaviour at the onset of rheumatoid arthritis.

OBJECTIVE: To explore general practitioners' (GPs') perspectives on public health campaigns to encourage people with the early symptoms of rheumatoid arthritis (RA) to seek medical help rapidly. DESIGN: Nineteen GPs participated in four semi-structured focus groups. Focus groups were audio-recorded, transcribed verbatim, and analysed using thematic analysis. RESULTS: GPs recognised the need for the early treatment of RA and identified that facilitating appropriate access to care was important. However, not all held the view that a delay in help seeking was a clinically significant issue. Furthermore, many were concerned that the early symptoms of RA were often non-specific, and that current knowledge about the nature of symptoms at disease onset was inadequate to inform the content of a help-seeking campaign. They argued that a campaign might not be able to specifically target those who need to present urgently. Poorly designed campaigns were suggested to have a negative impact on GPs' workloads, and would "clog up" the referral pathway for genuine cases of RA. CONCLUSIONS: GPs were supportive of strategies to improve access to Rheumatological care and increase public awareness of RA symptoms. However, they have identified important issues that need to be considered in developing a public health campaign that forms part of an overall strategy to reduce time to treatment for patients with new onset RA. This study highlights the value of gaining GPs' perspectives before launching health promotion campaigns.

Biologic agents for rheumatoid arthritis--negotiating the NICE technology appraisals.

In England and Wales, the National Institute for Health and Clinical Excellence (NICE) has provided guidance [technology appraisals (TAs) 130, 186, 195, 198 and 225] on the use of biologic drugs for the treatment of RA. This is based on an analysis of efficacy, safety and cost-effectiveness, and has resulted in a complex management pathway that restricts freedom to prescribe biologics according to their licensed indications. Specifically, TNF antagonists are the only class of biologics that can be used first line in DMARD-inadequate responders, and only in patients with a persistent 28-joint DAS score of ≥5.1. Alternative biologic agents are denied to those with contraindications to anti-TNF drugs and are also not supported following intolerance to TNF antagonists. Rituximab is the only class of biologic permitted after TNF antagonist inefficacy, in the absence of a contraindication to its use, whereas abatacept and tocilizumab are licensed and may be a more efficacious choice at this stage in some patient groups. Furthermore, for patients who demonstrate sequential inadequate responses, treatment is restricted to one TNF antagonist, rituximab and tocilizumab, whereas abatacept is only a permitted choice when rituximab is contraindicated or has been withdrawn because of an adverse event. In this review, we discuss the treatment algorithm published by NICE, and suggest alternatives where perceived deficiencies exist.

UK rheumatology consultant workforce provision 2007-9: results from the BSR/Arthritis Research UK Consultant Workforce Register.

The objective of this study was to describe the provision of consultant rheumatology services and the pattern of inequalities in UK rheumatology service provision, and to summarise the five-year impact of the new NHS consultant contract and the Musculoskeletal Services Framework in England and Wales. All consultants on the British Society for Rheumatology/Arthritis Research UK Consultant Workforce Register in January 2007 and January 2009 were sent questionnaires about timetable and working conditions and the personal and job-related details currently held about them on the register. Response rates were 87% in 2007 and 86% in 2009. The number of whole-time equivalent (WTE) rheumatologists in the UK increased from 470 to 531 (13%). Levels of provision in 2009 were lower in Scotland (1 WTE per 113,286 population) than the rest of the UK. There are now few regional variations in rheumatology consultant provision within the UK, and the number of WTE consultants is approaching recommended levels.

Withdrawal of disease-modifying antirheumatic drugs in patients with rheumatoid arthritis: a systematic review and meta-analysis.

OBJECTIVE: To define the effects of withdrawing disease-modifying antirheumatic drug (DMARD) treatment from patients with established rheumatoid arthritis (RA) receiving stable, effective long-term DMARD treatment. METHODS: A systematic literature search was conducted. Studies were included that were of high quality and enrolled adults with RA over 2 years' duration. A meta-analysis was performed on the number of disease flares in groups withdrawn from DMARD treatment compared with those who continued to receive DMARD. RESULTS: The randomised controlled trial data were pooled into a meta-analysis and this showed that patients who withdrew from DMARD had a significantly worse risk of disease flare or deterioration than those who continued DMARD treatment. CONCLUSION: In patients who have their disease adequately controlled by DMARD and wish to reduce the dose or withdraw them, this should be done cautiously. Their disease activity should be monitored carefully so that they recommence DMARD therapy in the event of disease flare or deterioration.

Benefit of anti-TNF therapy in rheumatoid arthritis patients with moderate disease activity.

OBJECTIVES: Anti-TNF therapy has improved outcomes for patients with highly active RA. Less is known about its effectiveness in patients with lower disease activity. The aim of this analysis is to compare the response to anti-TNF therapy between RA patients with high (DAS28 > 5.1) and moderate (DAS28 > 3.2-5.1) disease activity. METHODS: A total of 4687 anti-TNF and 344 DMARD patients with high disease activity despite treatment with two standard DMARDs (including MTX) and 224 anti-TNF- and 300 DMARD-treated patients with moderate disease activity were selected from the British Society For Rheumatology Biologics Register. Mean change in HAQ over the first 12 months of enrolment was compared first between anti-TNF-treated and untreated patients in each DAS28 group, and then between anti-TNF-treated patients in the moderate and high DAS28 groups, using doubly robust estimates, adjusting for age, gender, disease duration, baseline HAQ and DAS28 score, number of previous DMARDs and steroid use. RESULTS: Compared with anti-TNF-untreated patients within each DAS group, treated patients were younger, had higher DAS28 and HAQ and had failed a higher number of previous DMARDs. The mean adjusted change in HAQ over 12 months was similar in anti-TNF-treated patients with moderate and high disease activity at baseline: moderate -0.26 (95% CI -0.35, -0.16), high -0.28 (95% CI -0.34, -0.23) and mean difference -0.03 (95% CI -0.14, 0.08). CONCLUSIONS: Improvement in HAQ score 12 months after start of anti-TNF therapy was not dependent on baseline DAS28 scores, suggesting that substantial benefits may also be gained by treating those with moderately active disease despite standard DMARD therapy.

Delays between the onset of symptoms and first rheumatology consultation in patients with rheumatoid arthritis in the UK: an observational study.

OBJECTIVE: To investigate delays from symptom onset to rheumatology assessment for patients with a new onset of rheumatoid arthritis (RA) or unclassified arthritis. METHODS: Newly presenting adults with either RA or unclassified arthritis were recruited from rheumatology clinics. Data on the length of time between symptom onset and first seeing a GP (patient delay), between first seeing a general practitioner (GP) and being referred to a rheumatologist (general practitioner delay) and being seen by a rheumatologist following referral (hospital delay) were captured. RESULTS: 822 patients participated (563 female, mean age 55 years). The median time between symptom onset and seeing a rheumatologist was 27.2 weeks (IQR 14.1-66 weeks); only 20% of patients were seen within the first 3 months following symptom onset. The median patient delay was 5.4 weeks (IQR 1.4-26.3 weeks). Patients who purchased over-the-counter medications or used ice/heat packs took longer to seek help than those who did not. In addition, those with a palindromic or an insidious symptom onset delayed for longer than those with a non-palindromic or acute onset. The median general practitioner delay was 6.9 weeks (IQR 2.3-20.3 weeks). Patients made a mean of 4 GP visits before being referred. The median hospital delay was 4.7 weeks (IQR 2.9-7.5 weeks). CONCLUSION: This study identified delays at all levels in the pathway towards assessment by a rheumatologist. However, delays in primary care were particularly long. Patient delay was driven by the nature of symptom onset. Complex multi-faceted interventions to promote rapid help seeking and to facilitate prompt onward referral from primary care should be developed.

Rheumatoid hand surgery: is there a decline? A 22-year population-based study.

BACKGROUND: Rheumatoid arthritis (RA) is the most common idiopathic inflammatory arthritis affecting 0.8 % of the population. It can cause significant hand and wrist damage and dysfunction. Recent advances in anti-rheumatic treatments have the potential to decrease the prevalence of hand deformities in patients with RA. Our aim was to investigate whether there has been a decline over 22-years in the number of hand surgical procedures being undertaken for patients with RA and whether this correlates with the introduction of new anti-rheumatic therapies. METHODS: We performed a retrospective, population-based (Derbyshire) study of all patients with RA who underwent hand surgery at the Pulvertaft Hand Centre from 1990 to 2012. Index procedures included (1) teno-synovectomy and soft tissue procedures, (2) wrist arthrodesis/arthroplasty and (3) finger arthrodesis. RESULTS: A total of 297 procedures were performed in 153 Derbyshire patients with RA over the 22-year period, with mean age at surgery 59 years (range 24-88 years). The female to male ratio was 2.5:1. The overall trend showed a peak in 2004 and a subsequent decline thereafter. This coincides with an increasing tendency by local rheumatologists to introduce earlier and more intensive conventional disease-modifying drugs and biological therapies for more resistant disease. CONCLUSIONS: There has been a decline in the number of hand surgery procedures being performed on patients with RA during our 22-year population-based study. It indicates that medical treatments and strategies have been successful at preventing disease progression.

Health Assessment Questionnaire disability progression in early rheumatoid arthritis: systematic review and analysis of two inception cohorts.

OBJECTIVE: The Health Assessment Questionnaire is widely used for patients with inflammatory polyarthritis (IP) and its subset, rheumatoid arthritis (RA). In this study, we evaluated the progression of HAQ scores in RA (i) by systematically reviewing the published literature on the methods used to assess changes in functional disability over time and (ii) to study in detail HAQ progression in two large prospective observational studies from the UK. METHODS: Data from two large inception cohorts, ERAS and NOAR, were studied to determine trajectories of HAQ progression over time by applying latent class growth models (LCGMs) to each dataset separately. Age, sex, baseline DAS28, symptom duration, rheumatoid factor, fulfilment of the 1987 ACR criteria and socio-economic status (SES) were included as potential predictors of HAQ trajectory subgroup membership. RESULTS: The literature search identified 49 studies showing that HAQ progression has mainly been based on average changes in the total study population. In the HAQ progression study, a LCGM with four HAQ trajectory subgroups was selected as providing the best fit in both cohorts. In both the cohorts, older age, female sex, longer symptom duration, fulfilment of the 1987 ACR criteria, higher DAS28 and lower SES were associated with increased likelihood of membership of subgroups with worse HAQ progression. CONCLUSION: Four distinct HAQ trajectory subgroups were derived from the ERAS and NOAR cohorts. The fact that the subgroups identified were nearly identical supports their validity. Identifying distinct groups of patients who are at risk of poor functional outcome may help to target therapy to those who are most likely to benefit.

Cost-effectiveness of combination nonbiologic disease-modifying antirheumatic drug strategies in patients with early rheumatoid arthritis.

OBJECTIVE: To compare the costs and benefits of alternative combination strategies of disease-modifying antirheumatic drugs (DMARD) and DMARD monotherapy in patients with early, active rheumatoid arthritis (RA). METHODS: Data were drawn from randomized controlled trials that compared DMARD monotherapy or any DMARD combination strategy, with or without combined steroid therapy. Mixed treatment comparison methods were used to estimate the relative effectiveness of the different strategies. A mathematical model was developed to compare the longterm costs and benefits of the alternative strategies, combining data from a variety of sources. Costs were considered from a health sector viewpoint and benefits were expressed in terms of quality-adjusted life-years (QALY). RESULTS: If decision makers use a threshold of £20,000 (US$29,000) per QALY, then the strategies most likely to be cost-effective are either DMARD combination therapy with downward titration (probability of being optimal = 0.50) or intensive, triple DMARD combination therapy (probability of being optimal = 0.43). The intensive DMARD strategy generated an additional cost of £27,392 per additional QALY gained compared to the downward titration strategy. Other combination strategies were unlikely to be considered cost-effective compared to DMARD monotherapy. Results were robust to a range of scenario sensitivity analyses. CONCLUSION: Combination DMARD therapy is likely to be cost-effective compared to DMARD monotherapy where treatment entails rapid downward dose titration or intensive, triple DMARD therapy.