Patients with well-established ankylosing spondylitis show limited deterioration in a ten-year prospective cohort study.

This study aims to describe the deterioration of well-established ankylosing spondylitis (AS) over a 10-year period. Patients with well-established AS under secondary care review were assessed at baseline and re-assessed after a 10-year period. Data on patient characteristics, spinal mobility and self-reported health status (AS Quality of Life, Bath AS Disease Activity Index, EuroQoL, Revised Leeds Disability Questionnaire and Short Form-12) were compared between the two time points. One hundred fifty-nine patients took part in the initial assessment. After 10 years, 69/117 patients still under secondary care follow-up attended a second assessment. At the second assessment, this cohort was predominately male (92.8 %), mean age of 48.7 years (SD 9.7) and mean disease and symptom duration of 14.9 (SD 9.0) and 21.9 years (SD 13.3), respectively. Amongst the physical and patient-reported measures, only tragus to wall (p < 0.001), cervical rotation (p = 0.001) and disability (p = 0.02) had significantly deteriorated over time. The percentage of patients who had withdrawn from the workforce before normal retirement age increased from 37 to 53 % over the 10-year period. Many of the measures used in the assessment of AS do not generally deteriorate over time in those with well-established disease. This suggests that deterioration may plateau in established disease. However, AS has a long-term social impact with levels of employment in this cohort 30 % lower than the general population. Interventions directed at preventing deterioration may be more effective earlier in their disease course, before this plateau is reached.

The impact of a nurse-led chronic musculoskeletal pain clinic on healthcare utilization.

AIMS AND OBJECTIVES: To determine whether a nurse-led chronic musculoskeletal pain clinic for fibromyalgia patients can reduce utilization of healthcare services. BACKGROUND: People with fibromyalgia often consult multiple specialities due to the vast nature of their symptoms but receive little or no help in managing their symptoms. DESIGN: A retrospective evaluation of a nurse consultant-led chronic pain management clinic. METHODS: The frequency of hospital attendances in the five years before and three years after pain clinic attendance was evaluated. General practitioner (GP) attendances in the 12-month period before and after pain clinic attendance were compared with attendances for two groups of patients from an established GP cohort: (i) patients referred to rheumatology new patient clinics and (ii) all patients with fibromyalgia referred to any hospital new patient clinic. RESULTS: In the three years following attendance at the pain clinic, the mean number of hospital appointments fell significantly from 2.8 to 1.4 per annum (p < 0.001). The mean reduction seen in hospital clinic attendances in the first year (0.8/annum) improved in the second (1.2/annum) and third (2.1/annum) years. Seventy-eight per cent of pain clinic patients reduced their visits to their GP in the 12 months following treatment in the pain service, compared with 53% of patients referred to rheumatology clinics and 46% of patients with fibromyalgia. CONCLUSION: A nurse-led chronic pain clinic for fibromyalgia patients can have a positive impact on primary and secondary healthcare utilization. RELEVANCE TO CLINICAL PRACTICE: Having a designated nurse-led pain clinic can enable patients to access the appropriate service at an earlier stage in their condition and receive the support needed to manage the impact of their pain.

Evaluation of a modified arthritis self-efficacy scale for an ankylosing spondylitis UK population.

OBJECTIVES: To evaluate an Ankylosing Spondylitis-specific Arthritis Self-Efficacy Scale (ASES-AS) United Kingdom (UK) secondary care population. METHODS: The ASES-AS is based on the 8-item ASES with minor alterations in phraseology. Patients from ten secondary care rheumatology centres across England were asked to complete a postal questionnaire concerning sociodemographic and clinical characteristics: Bath AS Functional Index (BASFI), Bath AS Disease Activity Index (BASDAI), numerical pain rating scale (NRS), Hospital Anxiety and Depression Scale (HADS), Short Form 36 (SF-36), Evaluation of AS Quality of Life questionnaire (EASi-QoL) and ASES-AS. Respondents received repeat questionnaires at 2 weeks and 6 months including health transition questions assessing change in AS-specific and general health. The ASES-AS was assessed for data quality, reliability, validity, and responsiveness. RESULTS: Response rate was 64% (n=612), 72% (n=438) were male, mean age 50.8yrs (SD 12.2 yrs), mean disease duration 17.3 yrs (SD 11.7 yrs) and mean symptom duration 22.4 yrs (SD 12.4 yrs). Missing data for each item/total score range was 0.7%-3.1%. Item-total correlations range was 0.66 to 0.83. Cronbach's alpha was 0.93 and test-retest reliability (intraclass correlation coefficient) 0.77. A priori hypothesised associations between ASAS-AS and disease status measures were supported. Social variables potentially related to self-efficacy demonstrated evidence of convergent validity (employment p<0.001, educational level p<0.005). A Modified Standard Response Mean (MSRM) of 0.44 and 0.26 in AS-specific and general health respectively at 6 months indicates moderate responsiveness. CONCLUSIONS: ASES-AS has good evidence supporting its application as an AS-specific self-efficacy measure in research including clinical trials at a group level.

Impact of ankylosing spondylitis on work in patients across the UK.

OBJECTIVES: To examine the impact of ankylosing spondylitis (AS) on patients across the UK and to identify factors associated with unemployment, absenteeism, and presenteeism. METHODS: One thousand patients with AS from 10 specialist rheumatology centres across the UK were invited to participate in a study evaluating a new outcome measure. Patients completed a questionnaire, which included questions relating to their work, sociodemographic and clinical characteristics. RESULTS: The questionnaire was completed by 612 patients (438 males; 72%). The mean age of the participants was 50.8 (SD 12.2) years, mean disease duration was 17.3 (SD 11.7) years, and mean symptom duration 22.4 (SD 12.4) years. A total of 206 (40%) patients of working age were not employed. Factors associated with not being employed were social deprivation [odds ratio (OR) 3.52, 95% confidence interval (CI) 2.14-5.80], poor function (OR 3.42, 95% CI 1.90-6.13), depression (OR 2.05, 95% CI 1.12-3.78), increasing age (OR 1.05 per year, 95% CI 1.02-1.08), and longer disease duration (OR 1.03 per year, 95% CI 1.01-1.06). Disease activity (OR 3.24, 95% CI 1.11-9.48) and depression (OR 3.22, 95% CI 1.22-8.48) were associated with absenteeism, while depression (OR 5.69, 95% CI 1.77-18.27, disease activity (OR 3.97, 95% CI 1.76-8.98), anxiety (OR 3.90, 95% CI 1.83-8.31), self-efficacy (OR 0.71, 95% CI 0.58-0.86), and increasing age (OR 1.04 per year, 95% CI 1.00-1.08) were associated with presenteeism. CONCLUSION: Psychological, sociodemographic, and disease-related factors were all found to be related to work status. These factors should be taken into account when considering early treatment and management. Depression, in particular, appears to be associated with employment, absenteeism, and presenteeism, and should therefore be prioritized in clinical practice.

Fibromyalgia in patients with rheumatoid arthritis: driven by depression or joint damage?

OBJECTIVES: Studies have shown an increased incidence of fibromyalgia (FMS) in RA patients. The aims of this study were to explore the effect of mood and disease damage on the prevalence of FMS. METHODS: RA patients underwent a standardised clinical assessment, including disease activity (DAS-28), disease damage (mechanical joint score, MJS), fibromyalgia tender point assessment and the Hospital Anxiety and Depression Scale (HADS) and Health Assessment Questionnaire (HAQ). Patients were classified with FMS using two criteria a) tender-swollen joint count was ≥7 or b) tender point score of ≥11/18. RESULTS: 44/285 (15%) patients were classified as having FMS using the joint count difference of ≥7, compared to 18/285 (6%) using the tender point score of >11. Using the joint count difference to classify patients as having FMS, those with FMS had higher HAQ scores than those without FMS (2.12 vs. 1.5, p<0.0001). Although the DAS-28 was higher in this group (5.4 vs. 3.82, p<0.0001), the MJS was similar (8 vs. 7, p=0.19), suggesting similar levels of joint damage. Those classified as having FMS were more likely to have HAD-D scores of >11 (25% vs. 6%, p=0.0001). CONCLUSIONS: Coexistent FMS was common in our cohort, although using the tender point count to define FMS classified fewer patients with FMS. Within this group those with FMS had higher levels of depression but similar scores for joint damage indicating that in this cohort FMS and poorer physical functioning is mediated by low mood rather than joint damage.

The direct healthcare costs associated with ankylosing spondylitis patients attending a UK secondary care rheumatology unit.

OBJECTIVES: To explore the direct healthcare resources associated with ankylosing spondylitis (AS) in the UK. A secondary objective was to establish if resources, and thus healthcare costs, vary by disease severity. METHODS: Medical records of 147 sequential AS patients attending a UK secondary care rheumatology unit were examined to assess the direct healthcare resources used over the previous 12 months. Starting with a detailed inventory and measurement of resources consumed, unit cost multipliers were applied to the quantity of each type of resource consumed. The mean cost per patient was estimated using the total cost divided by the number of patients included. RESULTS: The mean (median) annual cost per patient was 1852 pounds sterling (892 pounds sterling). The distribution of cost data was skewed, with 11% of patients incurring 50% of the total costs. The three most relevant cost domains were physiotherapy, hospitalization and medication costs at 32, 21 and 20% of the total costs, respectively. Twenty percent of the patients received physiotherapy, 13% received inpatient care and almost all incurred medication costs. Thirty-four percent of patients were prescribed disease-modifying anti-rheumatic drugs and 85% non-steroidal anti-inflammatory drugs. Over 50% of patients had at least one comorbidity. CONCLUSION: Direct costs accelerate steeply with disease activity (Bath Ankylosing Spondylitis Disease Activity Index >6.0) and increasing loss of function (Bath Ankylosing Spondylitis Functional Index >6.0) in patients with AS. The most severely affected patients incur 50% of the total costs, and physiotherapy accounts for 32% of the total healthcare costs in the UK.

Premature ovarian failure in women with juvenile idiopathic arthritis (JIA).

OBJECTIVE: To examine the effect of longstanding juvenile idiopathic arthritis (JIA) on menstrual irregularity and the incidence of premature ovarian failure in women. METHODS: Women with longstanding JIA who had abnormal or absent menstrual cycles had their circulating levels of gonadotrophins measured to check for the presence of ovarian failure. Disease demographics and subsets, function, age at onset of menstrual irregularity, previous medical intervention, concurrent diseases and history of pregnancy/delivery were documented. RESULTS: 177/187 (95%) of female adults with JIA who were identified and contacted, participated in the study. The average age at review was 35.4 years (19-78) with average disease duration of 28.7 years. 47.4% of all patients had clinically active arthritis. 44.6% of all patients had severe disability (HAQ score > 1.5). Six patients had premature ovarian failure unrelated to medication use, comprising 3.4% of the females in the study, compared to an expected incidence of 1% in the general population (p < 0.01). In addition, three (1.7%) of these had onset of symptoms before age 30, compared to an expected incidence of 0.1% in the general population (p < 0.01). The average maternal age at first delivery in women with JIA (27.2 years) was higher than the general population (23.5 years). CONCLUSION: Idiopathic premature ovarian failure was more commonly found in individuals with juvenile idiopathic arthritis. In addition a small number of patients had iatrogenic premature ovarian failure related to chlorambucil use.

Long-term follow-up of 246 adults with juvenile idiopathic arthritis: functional outcome.

OBJECTIVE: To examine the clinical and functional outcome of adults with juvenile idiopathic arthritis (JIA) using the recent World Health Organization/International League Against Rheumatism (ILAR) classification. PATIENTS AND METHODS: Two hundred and fifty-nine adults with long-standing JIA (average disease duration 28.3 yr) were eligible for the study; 246 (95%) attended for an interview, clinical examination and notes review and 231 (89.2%) returned a comprehensive functional and psychosocial self-assessment questionnaire. RESULTS: Of all patients, 43.3% had active arthritis clinically and 54.4% on laboratory measures (C-reactive protein). Clinical inflammation was less common in systemic-onset JIA. The percentage of all patients with severe disability (Health Assessment Questionnaire score >1.5) was 42.9. Uveitis occurred frequently in the oligoarticular-onset and enthesitis-related subsets. Over 30% of the extended oligoarticular group with uveitis developed glaucoma compared with none of the enthesitis group. CONCLUSIONS: Adults with JIA often have significant levels of disability, often related to continuing active disease over prolonged periods. There is a clear need for good transition from paediatric to high-quality adult rheumatology care.

Long-term follow-up of 246 adults with juvenile idiopathic arthritis: education and employment.

OBJECTIVE: To examine the levels of education and employment in adults with juvenile idiopathic arthritis (JIA) compared with their siblings and national figures. PATIENTS AND METHODS: Two hundred and forty-six adults identified with long-standing JIA had an average disease duration of 28.3 yr. Educational achievements and employment status were recorded and comparative data obtained from siblings and the National Office for Statistics, UK. The effects, incidence and nature of discrimination in the workplace were also explored. RESULTS: Across all levels of education the study group achieved significantly better results than both the national average and their siblings. In contrast, the rate of unemployment in the patient group was more than twice that in the national population. The percentage of patients who had encountered discrimination in the workplace was 25.1.

Long-term follow-up of 246 adults with juvenile idiopathic arthritis: social function, relationships and sexual activity.

OBJECTIVE: To examine social function, relationships and sexual activity in adults with juvenile idiopathic arthritis (JIA). PATIENTS AND METHODS: Two hundred and forty-six adults identified with long-standing JIA had an average disease duration of 28.3 yr. Specific information was sought on marital status, offspring, age at first sexual encounter, and problems related to disease in sexual activity and pregnancy. RESULTS: Fewer patients (42.8%) were in stable relationships than their siblings (55.3%). The percentage of patients with children was 27.5. Twenty-three per cent of all known pregnancies ended in miscarriage. Of the women who had had a Caesarean, 78.9% had either reduced hip mobility or short stature. JIA had a detrimental effect on body image in 50.7% of patients but relationships were affected in only 28.2%. The percentage of patients who were sexually active or had had previous sexual experience was 83.3; 58.3% of these had disease-related sexual problems. CONCLUSIONS: A significant proportion of individuals are sexually active before transfer to adult rheumatology care at the age of 18 yr. This highlights the need to introduce sexual counselling in adolescent clinics. The high incidence of psychological sexual problems may benefit from appropriate counselling and training.

Long-term follow-up of 246 adults with juvenile idiopathic arthritis: predictive factors for mood and pain.

OBJECTIVE: To examine the predictive factors for anxiety, depression and pain in adults with juvenile idiopathic arthritis (JIA). PATIENTS AND METHODS: Two hundred and forty-six adults identified with long-standing JIA had an average disease duration of 28.3 yr. Candidate factors potentially predictive for pain, anxiety and depression were assessed by multiple regression analysis. RESULTS: Of the patients, 31.6% were anxious, 5.2% were depressed, and 21.1% had previously suffered from depression. The percentage of the variance accounted for by other variables was 78.8 for anxiety variance and 54.5 for depression, but there was little influence from physical disease-related factors. Severe pain, measured on a visual analogue scale, occurred in 32.9% of patients, and 22.8% had poor perceived control over their pain. Function, coping strategies, pain self-efficacy, inflammation and previous depression could predict 39.6% of the variance in pain. CONCLUSIONS: Comparing adults with children, disease activity and control over pain remain predictors of pain but become less important than disability and coping strategies.