Use of a corporate needs assessment to define the information requirements of an arthritis resource centre in Birmingham: comparison of patients' and professionals' views.

OBJECTIVES: Education and information are important components of the management of chronic disease, though provision of these in the routine clinic setting may be suboptimal. We carried out a corporate needs assessment, both to evaluate stakeholders' perceived usefulness of potential facilities that could be offered by a community-based arthritis resource centre in Birmingham and to compare the views of patients with rheumatological conditions and health professionals. METHODS: Rheumatology patients (n = 201 responders/309 contacted) and health professionals (n = 232/430) were asked to complete a questionnaire to assess both current rheumatology service provision and perceived needs for further information that could be offered within the proposed resource centre. Views of patients and professionals were compared using odds ratios. Logistic regression analysis determined patient characteristics associated with perceived usefulness of various information types. RESULTS: The overall response rate was 58%. Most patients were currently receiving medication but only 38% received written information on arthritis. Over 80% of responders felt that more information would be useful, particularly information in written leaflets. Compared with professionals, patients gave higher value to certain types of medical, non-medical, support and skills information, particularly individual information from trained volunteers, and specific information on benefits, diet and alternative therapy, and symptom management. Non-Caucasian patients gave higher value to the provision of material in different languages and the availability of multilingual volunteer staff. CONCLUSION: Rheumatology patients and professionals identified a relative lack of information for patients. There was wide interest in the provision of more information, with value placed on the provision of material in different languages, at an educational resource centre. This work has been used to develop the facilities currently offered at the Birmingham Arthritis Resource Centre. Further research is needed to investigate the effectiveness of the provision of good quality information to patients with arthritis.

Development and assessment of a World Wide Web site for systemic lupus erythematosus patient information.

Patient education is an important component of the management of chronic diseases such as SLE. We have investigated the value of the World Wide Web as a medium for delivery of SLE patient information. Volunteers recruited from the clinic and from the website completed interviews and questionnaires aimed at defining their information needs. A new website was then established and its impact on users tested using knowledge questionnaires. The new website was used extensively (20-30 users each day) over the 24 month period of study until April 2001. A total of 510 participants completed an online questionnaire that showed that for some users it was their first use of the internet to gather lupus information, but the majority (58.9%) accessed it at least monthly for this purpose. We also found that, while most users (56.9%) found current disease information was at an appropriate level, 37.5% thought it was too basic. Knowledge questionnaires from 42 participants before and after using the site showed a significant rise in users' knowledge of the areas covered by the site. As far as we are aware this study is the first to show that a patient-oriented website can have a positive effect on disease knowledge. The relative ease with which good quality information can be disseminated via the web suggests that this medium is likely to be less costly and perhaps more educationally effective than printed information, and so is likely to become a primary vehicle for patient education. The website tested can be found at: www.rheumatology.bham.ac.uk/lupus/intro.html.

Percutaneous image-guided biopsy of lung nodules in the assessment of disease activity in Wegener's granulomatosis.

OBJECTIVE: In patients with known Wegener's granulomatosis (WG) and persistent chest radiographic abnormalities, assessment for disease activity is often difficult, prompting the need for histological diagnosis to determine appropriate treatment. Here we report the use of automated image-guided core needle biopsy of pulmonary lesions for the assessment of disease activity in WG, rather than for primary diagnosis. METHODS: Image-guided percutaneous core needle biopsy was performed on five occasions in four patients with thoracic WG and persistent radiographic abnormalities of the chest. Clinical features, indication for biopsy, radiographic abnormalities and pathological findings were recorded. RESULTS: Adequate pathological specimens were obtained, allowing exclusion of infection and tumour. Active chronic inflammation with or without vasculitis was demonstrated in each case, indicating the need for further immunosuppressive therapy. A small pneumothorax following biopsy in one case required no treatment. Follow-up chest imaging revealed a reduction in the extent of thoracic disease following therapy in all cases. CONCLUSIONS: The safety and diagnostic accuracy of image-guided core biopsy of thoracic lesions makes it a useful tool in the assessment of disease activity in WG patients with persistent chest radiographic lesions.

Consistency and validity of patient administered assessment of quality of life by the MOS SF-36; its association with disease activity and damage in patients with systemic lupus erythematosus.

OBJECTIVE: To investigate the metric properties and validity of the assessment of quality of life by the MOS Short Form 36 (SF-36) in patients with systemic lupus erythematosus (SLE) and to examine the effect of disease on quality of life. METHODS: Cross sectional study of 150 patients with SLE (age: mean 39.7 yrs, SD 11.4 yrs; 95% female) attending 2 specialist lupus clinics between November 1994 and April 1995. Shortly before or after the consultation patients completed the SF-36 and the MOS SF-20 with an additional question about fatigue (SF-20+) in random order. Disease activity was measured by the British Isles Lupus Activity Group System (BILAG), disease damage by the Systemic Lupus International Collaborating Clinics/American College of Rheumatology (SLICC/ACR) damage index (SLICC). RESULTS: SF-36 domains were shown to be internally consistent (Cronbach's coefficient alpha > or = 0.71). Significant associations of the SF-36 domains with the corresponding domains of the SF-20+ and with global disease activity measured by BILAG were observed. SF-36 scores in patients with SLE were significantly lower than in controls. Different disease activity levels were significantly associated with different quality of life scores, with excellent ability to record the continuum from good health to serious illness by the SF-36. Disease activity had greater effect on quality of life than age, cumulative damage, or disease duration. CONCLUSION: This study shows the SF-36 is internally consistent and proves construct, discriminatory, and criterion validity for the SF-36 and construct validity for the SF-20+ in patients with SLE. The SF-36 is preferred because of its broader scope of questions, its widespread use, and previous international validation for a wide variety of diseases.

Disease assessment and management of the vasculitides.

The improvement in survival with chemotherapy has resulted in a change of the natural history of the systemic vasculitic syndromes. The vasculitides are now viewed as chronic disease rather than fatal conditions. Their course is frequently characterized by relapse as well as the scars of irreversible organ damage from disease and drug toxicity. Assessment tools are available which can serve as outcome measures in clinical trials as well as a guide to better management of individual patients. Improvements in therapy in future are dependent on a better understanding of the pathogenesis of these conditions and the ability to assess disease accurately.

Development and initial validation of the Vasculitis Damage Index for the standardized clinical assessment of damage in the systemic vasculitides.

OBJECTIVE: To develop and validate the Vasculitis Damage Index (VDI) for the standardized clinical assessment of damage in the systemic vasculitides. METHODS: Using a nominal group consensus approach, the Birmingham Vasculitis Group generated guiding principles for assessment of damage in all systemic vasculitides. Damage was defined as irreversible change resulting from scars. Consensus principles were developed into the VDI, including guidelines for use, a list of items of damage, and a glossary. RESULTS: For 100 surviving patients with systemic vasculitis, the median VDI score at last observation was 3 (range 0-8). Within the Wegener's granulomatosis subgroup, the median VDI score for 12 non-survivors was higher than for 47 survivors (non-survivors median score 7, interquartile range 5-8 versus survivors median score 4, interquartile range 2-5; P = 0.003). VDI scores for 100 patients with systemic vasculitis increased from initial presentation to last observation by a median score of 3 (range 1-4; P < 0.001). The VDI assesses more items and is more sensitive to change than other indices of damage (P < 0.001). Using the VDI, trained observers can produce moderately consistent damage scores. CONCLUSION: The VDI is a sensitive, reproducible, comprehensive, and credible clinical tool for quantifying damage. The data presented herein should enable further validation and testing of the VDI in specific vasculitic syndromes, and should facilitate the comparison of different therapies.

Assessment of rheumatoid arthritis.

Accurate assessment of disease activity and progression is essential in diseases with marked chronicity such as rheumatoid arthritis. It is not surprising that rheumatologists continue to seek improvement in old indices and to develop new ones. In the field of clinical indices, selection of data that contribute independently to the overall value of a compound assessment index will simplify trial methodology considerably. The trend is to reduce the number of tests done, but there is still a need to include functional indices and perhaps psychologic ones, because disability and self-image clearly affect prognosis. In the laboratory area, the trend is to develop methods to specifically assess different aspects of inflammation rather than to rely on overall nonspecific measures such as acute-phase proteins. Radiographs remain the simplest method for detecting scars of previous disease and the potential exists to improve and perhaps mechanize the reading of such films. Magnetic resonance imaging has the potential for assessment of the current state of inflammation if newer methodologies are used. Radionuclides may also have much to offer in joint assessment in the 1990s.

Development and assessment of a computerized index of clinical disease activity in systemic lupus erythematosus. Members of the British Isles Lupus Assessment Group (BILAG).

Five centres in Great Britain and the Republic of Ireland have collaborated to produce a computerized index of clinical disease activity in systemic lupus erythematosus, based on the principle of the physician's intention to treat. The index assesses separately eight organ-based systems. The index has proved quick and easy to use despite a comprehensive database and compares favourably with two other indices of disease activity. It has great potential for use in multicentre studies of disease outcome and new therapies in systemic lupus erythematosus.

Methods of X-ray assessment in rheumatoid arthritis: a re-evaluation.

We have re-examined the value of hand radiographs in the assessment of joint damage in rheumatoid arthritis in a series of related studies. Our objectives were: to assess the reproducibility of scoring hand radiographs and the relationships between different types of changes; to analyse the correlations between radiographic changes and hand function; and to assess the inter-relation between hand changes and overall joint damage. We confirmed the reproducibility of radiological assessments and showed that two observers can reproducibly score hand radiographs separately for joint space loss and erosions; both of these correlated with the Larsen score derived from standard radiographs. However, hand radiographic changes were not closely related to hand function; nor did they predict damage to large joints. Finally, examination of changes in 13 joint groups showed that there is a weak relationship between damage and disease duration, and the rate of damage is greatest in the initial years. We conclude that the status of hand radiography as a measure of overall outcome in rheumatoid arthritis remains an open question.

The effect of synovial iron on the progression of rheumatoid disease. A histologic assessment of patients with early rheumatoid synovitis.

Seventeen patients with early rheumatoid synovitis underwent synovial biopsy to assess the interrelationship between both ferritin (the intracellular iron storage protein) and Perls' positive iron (ferric iron in loose combination with protein), on the activity and course of rheumatoid disease. The amount of ferritin was associated to a significant degree with the activity of the disease at the time of biopsy, but showed no relation to the way the disease progressed over the following year. In contrast, the amount of Perls' iron bore no relation to the activity of the disease at biopsy, but its presence was associated with persistent disease. It is argued that this association is direct, that ferritin production may fail in a population of synovial macrophages, and that Perls' ferric iron may either be reduced to the ferrous form and promote the formation of toxic free radical species, or stimulate collagenase and prostaglandin release from synovial macrophages.

Assessment of iron stores in inflammation by assay of serum ferritin concentrations.

A serum ferritin concentration of below 15 microgram/l is accepted as indicating diminished iron reserves in an otherwise normal person. In patients with inflammatory disease this lower limit of normality may be inappropriate as inflammation may directly stimulate the production of ferritin protein. Results obtained in a survey of 150 patients with early inflammatory joint disease suggest that a ferritin concentration of 55 microgram/l is a more appropriate lower limit of normality.

Problems in the assessment of disease activity in ankylosing spondylitis.

Serial assessments of disease activity using clinical, laboratory and thermographic indices were made on 20 patients with ankylosing spondylitis (AS) before and after active in-patient exercise classes and two months after discharge. Clinical measurements and the erythrocyte sedimentation rate suggested decreased activity by the time of the final assessment but plasma viscosity and thermography suggested increased activity and levels of C-reactive protein were unchanged. Functional improvements occurred mostly during the in-patient period. A wide range of complement levels was found but did not change, and IgG rheumatoid factor levels were negative throughout. The problems of laboratory assessment in AS are stressed.

A combined clinical and immunological assessment of four cyclophosphamide regimes in rheumatoid arthritis.

Four dosage regimes of cyclophosphamide have been compared in patients with late rheumatoid arthritis, in an attempt to separate toxicity from efficacy. Joint inflammation was assessed clinically and objectively by quantitative thermography. Delayed hypersensitivity in vitro was assessed using leucocyte migration inhibition (L.M.T.) to a standard antigen, Streptokinase. There was no significant difference in clinical response or side-effects between a continuous oral regime (1 mg/kg/day) and the same total dose given as an intermittent oral regime. Responders and non-responders were seen in both groups and there was a significant relationship between clinical response and fall in platelet count, suggesting a variable threshold. The same total dose given as an intermittent intravenous regime caused considerable side-effects but these could be avoided by the addition of methylprednisolone. Both intravenous regimes induced a much more rapid fall in the Thermographic Index (T.I.) than the oral regimes. Indeed many patients receiving oral cyclophosphamide showed an increase in joint inflammation in the first three weeks of treatment. Immunological studies demonstrated a corresponding increase in reactivity to Streptokinase over this period. There was a highly significant correlation between changes in L.M.T. and T.I. both early in treatment and, in the oral groups, over a period of six months.

A thermographic assessment of three intra-articular prednisolone analogues given in rheumatoid synovitis.

1 Three intra-articular prednisolone analogues have been studied in a group of forty-six rheumatoid arthritic subjects. Each compound was tested at 50 mg and 100 mg dose over 3 weeks. 2 The anti-inflammatory effect was assessed by quantitative thermography. Systemic escape of the drug was monitored by plasma prednisolone and cortisol levels. 3 Both the systemic escape from the joint and the duration of effect on injected and uninjected knees were related to drug solubility. 4 Depression of plasma cortisol occurred with all three preparations and was most prolonged with the long-acting preparation. 5 Increasing the dose from 50 mg to 100 mg increased the antiflammatory effect only with the soluble acetate preparation.

Quantitative thermographic assessment of inositol nicotinate therapy in Raynaud's phenomena.

The basal temperature of the hands has been measured by quantitative thermography in a group of normal controls and rheumatoid patients exhibiting Raynaud's phenomenon. The thermographic index for both the dorsum of the hand and the fingers was significantly lower in the patients with Raynaud's. Oral treatment with inositol nicotinate (Hexopal) was followed by an initial rise in the thermographic index in both areas. After the initial increase the temperature fell again but then rose after two months treatment. At nine months two subjects on continuous therapy had higher indices than the four who had discontinued therapy. It is suggested that long-term treatment with nicotinate acid derivatives may produce improvement in the peripheral circulation by a different mechanism than the transient effect detected by short-term studies.