The coding of telephone consultations in UK primary care databases: are we picking up all the calls?

OBJECTIVES: To examine the use of two coding systems used in the THIN UK primary care research database for the coding of telephone encounters between patient and healthcare professional in primary care. This is relevant to other research databases built on GP clinical systems. Consideration of telephone consultations was particularly important during the COVID-19 pandemic as remote interactions between patient and GP are more numerous than before and are likely to remain at a higher frequency. RESULTS: Telephone encounters could either be indicated by a consultation-type code or by a Read code. All three possible combinations (coded by one method, the other method and both) were in use. In 2014, 30% were coded by the consultation-type, 55% by Read codes and 15% by both. In contrast, in 2000, 77% were coded by the consultation-type, 21% by Read codes and 2% by both. This has important implications because national and regional consultation rates by GPs are often estimated from these research databases by looking only at the consultation-type codes and consequently many encounters will not be detected.

Predicting a diagnosis of ankylosing spondylitis using primary care health records-A machine learning approach.

Ankylosing spondylitis is the second most common cause of inflammatory arthritis. However, a successful diagnosis can take a decade to confirm from symptom onset (via x-rays). The aim of this study was to use machine learning methods to develop a profile of the characteristics of people who are likely to be given a diagnosis of AS in future. The Secure Anonymised Information Linkage databank was used. Patients with ankylosing spondylitis were identified using their routine data and matched with controls who had no record of a diagnosis of ankylosing spondylitis or axial spondyloarthritis. Data was analysed separately for men and women. The model was developed using feature/variable selection and principal component analysis to develop decision trees. The decision tree with the highest average F value was selected and validated with a test dataset. The model for men indicated that lower back pain, uveitis, and NSAID use under age 20 is associated with AS development. The model for women showed an older age of symptom presentation compared to men with back pain and multiple pain relief medications. The models showed good prediction (positive predictive value 70%-80%) in test data but in the general population where prevalence is very low (0.09% of the population in this dataset) the positive predictive value would be very low (0.33%-0.25%). Machine learning can be used to help profile and understand the characteristics of people who will develop AS, and in test datasets with artificially high prevalence, will perform well. However, when applied to a general population with low prevalence rates, such as that in primary care, the positive predictive value for even the best model would be 1.4%. Multiple models may be needed to narrow down the population over time to improve the predictive value and therefore reduce the time to diagnosis of ankylosing spondylitis.

Real-world use of an etanercept biosimilar including selective versus automatic substitution in inflammatory arthritis patients: a UK-based electronic health records study.

Objective: Biosimilars are approved as an alternative treatment to their originators. We compared the clinical outcomes of etanercept (ETN) biosimilar compared with ETN originator in real-world practice, from two local health boards in Wales with different policies on switching: automatic vs selective. Methods: Data from the Secure Anonymised Information Linkage (SAIL) databank in Wales were used to create a retrospective cohort study using linked primary and secondary care data. Patients aged ≥18 years with diagnosis codes for RA, PsA or AS were included. Outcomes included treatment failure and DAS-28 score (for RA). The local health board with a policy of automatic switching (i.e. clinician/nurse involvement not mandated) is labelled as automatic switch area, and the other, which required clinician/nurse supervision, as selective switch. Results: Of 8925 individuals with inflammatory arthritis, 13.3% (365) received ETN biosimilar and 31.5% (863) ETN originator. The treatment discontinuation rate was similar for ETN biosimilar and originator by Kaplan-Meier analysis. More biosimilar failure patients were treated in the automatic switch area (15 vs 4.8%). In the automatic switch area, 28.8% (75 of 260) of patients switched automatically from ETN originator to biosimilar compared with 10.5% (11 of 105) in the selective switch area. ETN biosimilar reduced DAS-28 by 1.6 ± 1.8 in the selective switch area vs 0.4 ± 0.6 in the automatic switch area. Conclusion: The ETN biosimilar was well tolerated. Fewer people were switched using selective policy, but this was associated with lower failure rates. Automatic switch policy led to more patients being switched and did not lead to significant worsening of disease.

Shielding reduced incidence of COVID-19 in patients with inflammatory arthritis but vulnerability is associated with increased mortality.

OBJECTIVES: Investigate whether individuals with inflammatory arthritis (IA), their treatments and shielding status affect the risk of adverse outcomes from COVID-19 for the entire population of Wales, UK. METHODS: Retrospective, population-based cohort study using linked, anonymized electronic health data from SAIL Databank, including primary/secondary care, rheumatology, Office for National Statistics Mortality and COVID-19 laboratory data. Individuals aged 18 years and over testing positive for COVID-19 between March 2020 and May 2021 with READ Codes present for rheumatoid arthritis, psoriatic arthritis and ankylosing spondylitis formed the study cases. RESULTS: A total of 1966 people with IA and 166 602 without tested positive for COVID-19. The incidence rate was 3.5% (1966/56 914) in IA, vs 6% in the general population (166 602/2 760 442), (difference: 2.5%, 95% CI: 2.4%, 2.7%, P ≤0.001). In an adjusted Cox proportional hazard model, IA was not associated with higher mortality (HR: 0.56, 95% CI: 0.18, 1.64, P=0.286). Significant risk factors included shielding (HR: 1.52, 95% CI: 1.40, 1.64, P ≤0.001), hospitalization for previous infections (HR: 1.20, 95% CI: 1.12, 1.28, P ≤0.001), hospitalizations one year pre-pandemic (HR: 1.34, 95% CI: 1.25, 1.44, P ≤0.001) and glucocorticoid use (HR: 1.17, 95% CI: 1.09, 1.25, P ≤0.001). CONCLUSIONS: Individuals with IA had a lower incidence of COVID-19, probably due to shielding. IA was not associated with increased mortality following COVID-19 infection; being vulnerable (shielded), comorbidities and other factors were associated with increased risk. These key risk factors can identify individuals with IA at greater risk from COVID-19 and advised to shield during high community prevalence.

Biologic use in psoriatic arthritis and ankylosing spondylitis patients: a descriptive epidemiological study using linked, routine data in Wales, UK.

OBJECTIVES: PsA and AS are chronic diseases associated with significant morbidities. National and international management guidelines include treatment with biologic therapies to improve outcomes and quality of life. There are limited real-world data on the patients' journey from symptom onset to diagnosis and treatment in the UK. We use real-life, linked health data to explore patient pathways and the impact of biologics on patient outcomes. METHODS: Data from the Secure Anonymised Information Linkage databank in Wales were used to assess diagnosis and treatment of patients ≥18 years of age with at least one International Classification of Diseases, Tenth Revision code present for PsA/AS in rheumatology clinic data and at least one Read code present in primary care records. We investigated the use of biologics while exploring demographics, comorbidities and surgical procedures of 641 AS patients and 1312 PsA patients. RESULTS: AS patients were significantly younger at diagnosis and were predominantly male. The average time from presenting symptoms to diagnosis of AS and PsA was 7.9 (s.d. 5.5) and 9.3 (s.d. 5.5) years, respectively. The proportion of patients receiving biologic treatment was significantly higher in AS (46%) compared with PsA patients (28.8%); of these, 23.1% of AS and 22.2% of PsA patients stopped/switched a biologic. There was a significant reduction in primary care involvement, sick notes and disability living allowance for both AS and PsA patients following biologic initiation. CONCLUSION: This real-world descriptive study confirms that patients treated with biologics have reduced disability and time off work despite being initiated ∼13 years after the first symptoms and 6 years after diagnosis.

Mining Primary Care Electronic Health Records for Automatic Disease Phenotyping: A Transparent Machine Learning Framework.

(1) Background: We aimed to develop a transparent machine-learning (ML) framework to automatically identify patients with a condition from electronic health records (EHRs) via a parsimonious set of features. (2) Methods: We linked multiple sources of EHRs, including 917,496,869 primary care records and 40,656,805 secondary care records and 694,954 records from specialist surgeries between 2002 and 2012, to generate a unique dataset. Then, we treated patient identification as a problem of text classification and proposed a transparent disease-phenotyping framework. This framework comprises a generation of patient representation, feature selection, and optimal phenotyping algorithm development to tackle the imbalanced nature of the data. This framework was extensively evaluated by identifying rheumatoid arthritis (RA) and ankylosing spondylitis (AS). (3) Results: Being applied to the linked dataset of 9657 patients with 1484 cases of rheumatoid arthritis (RA) and 204 cases of ankylosing spondylitis (AS), this framework achieved accuracy and positive predictive values of 86.19% and 88.46%, respectively, for RA and 99.23% and 97.75% for AS, comparable with expert knowledge-driven methods. (4) Conclusions: This framework could potentially be used as an efficient tool for identifying patients with a condition of interest from EHRs, helping clinicians in clinical decision-support process.

Proton pump inhibitors and dementia risk: Evidence from a cohort study using linked routinely collected national health data in Wales, UK.

OBJECTIVES: Proton pump inhibitors (PPIs) are commonly prescribed for prevention and treatment of gastrointestinal conditions or for gastroprotection from other drugs. Research suggests they are linked to increased dementia risk. We use linked national health data to examine the association between PPI use and the development of incident dementia. METHODS AND FINDINGS: A population-based study using electronic health-data from the Secure Anonymised Information Linkage (SAIL) Databank, Wales (UK) from 1999 to 2015. Of data available on 3,765,744 individuals, a cohort who had ever been prescribed a PPI was developed (n = 183,968) for people aged 55 years and over and compared to non-PPI exposed individuals (131,110). Those with prior dementia, mild-cognitive-impairment or delirium codes were excluded. Confounding factors included comorbidities and/or drugs associated with them. Comorbidities might include head injury and some examples of medications include antidepressants, antiplatelets and anticoagulants. These commonly prescribed drugs were investigated as it was not feasible to explore all drugs in this study. The main outcome was a diagnosis of incident dementia. Cox proportional hazard regression modelling was used to calculate the Hazard ratio (HR) of developing dementia in PPI-exposed compared to unexposed individuals while controlling for potential confounders. The mean age of the PPI exposed individuals was 69.9 years and 39.8% male while the mean age of the unexposed individuals was 72.1 years and 41.1% male. The rate of PPI usage was 58.4% (183,968) and incident dementia rate was 11.8% (37,148/315,078). PPI use was associated with decreased dementia risk (HR: 0.67, 95% CI: 0.65 to 0.67, p<0.01). CONCLUSIONS: This study, using large-scale, multi-centre health-data was unable to confirm an association between PPI use and increased dementia risk. Previously reported links may be associated with confounders of people using PPI's, such as increased risk of cardiovascular disease and/or depression and their associated medications which may be responsible for any increased risk of developing dementia.

Mixed-methods evaluation comparing the impact of two different mindfulness approaches on stress, anxiety and depression in school teachers.

OBJECTIVES: This study compared the impact of two different 8-week mindfulness based courses (.b Foundations and Mindfulness-Based Stress Reduction (MBSR)), delivered to school teachers, on quantitative (stress, anxiety and depression) and qualitative (experience, acceptability and implementation) outcomes. DESIGN: A mixed-methods design was employed. Matched-paired t-tests were used to examine change from baseline, with imputation conducted to account for those lost to follow-up. Qualitative methods involved 1:1 semistructured interviews (n=10). Thematic analysis was used to explore differences in experience between courses. SETTING: Courses took place in UK primary schools or nearby leisure centres, 1:1 interviews took place via telephone. PARTICIPANTS: 44/69 teachers from schools in the UK were recruited from their attendance at mindfulness courses (.b and MBSR). INTERVENTIONS: Participants attended either an MBSR (experiential style learning, 2 hours per week) or .b Foundations (more classroom focused learning, 1.5 hours per week) 8-week mindfulness course. OUTCOME MEASURES: Stress (Perceived Stress Scale), anxiety and depression (Hospital Anxiety and Depression Scale) were evaluated in both groups at baseline (n=44), end of intervention (n=32) and 3-month follow-up (n=19). RESULTS: Both courses were associated with significant reductions in stress (.b 6.38; 95% CI 1.74 to 11.02; MBSR 9.69; 95% CI 4.9 to 14.5) and anxiety (.b 3.36; 95% CI 1.69 to 5.0; MBSR 4.06; 95% CI 2.6 to 5.5). MBSR was associated with improved depression outcomes (4.3; 95% CI 2.5 to 6.11). No differences were found in terms of experience and acceptability. Four main themes were identified including preconceptions, factors influencing delivery, perceived impact and training desires/practical application. CONCLUSION: .b Foundations appears as beneficial as MBSR in anxiety and stress reduction but MBSR may be more appropriate for depression. Consideration over implementation factors may largely improve the acceptability of mindfulness courses for teachers. Further research with larger samples is needed.

Curriculum-based outdoor learning for children aged 9-11: A qualitative analysis of pupils' and teachers' views.

The relationship between child health, wellbeing and education demonstrates that healthier and happier children achieve higher educational attainment. An engaging curriculum that facilitates children in achieving their academic potential has strong implications for educational outcomes, future employment prospects, and health and wellbeing during adulthood. Outdoor learning is a pedagogical approach used to enrich learning, enhance school engagement and improve pupil health and wellbeing. However, its non-traditional means of achieving curricular aims are not yet recognised beyond the early years by education inspectorates. This requires evidence into its acceptability from those at the forefront of delivery. This study aimed to explore headteachers', teachers' and pupils' views and experiences of an outdoor learning programme within the key stage two curriculum (ages 9-11) in South Wales, United Kingdom. We examine the process of implementation to offer case study evidence through 1:1 interviews with headteachers (n = 3) and teachers (n = 10) and focus groups with pupils aged 9-11 (n = 10) from three primary schools. Interviews and focus groups were conducted at baseline and six months into implementation. Schools introduced regular outdoor learning within the curriculum. This study found a variety of perceived benefits for pupils and schools. Pupils and teachers noticed improvements in pupils' engagement with learning, concentration and behaviour, as well as positive impacts on health and wellbeing and teachers' job satisfaction. Curriculum demands including testing and evidencing work were barriers to implementation, in addition to safety concerns, resources and teacher confidence. Participants supported outdoor learning as a curriculum-based programme for older primary school pupils. However, embedding outdoor learning within the curriculum requires education inspectorates to place higher value on this approach in achieving curricular aims, alongside greater acknowledgment of the wider benefits to children which current measurements do not capture.

Cardiovascular risk factors predicting cardiac events are different in patients with rheumatoid arthritis, psoriatic arthritis, and psoriasis.

OBJECTIVES: Increased cardiovascular risk in rheumatoid arthritis (RA) is well established. Examining traditional cardiovascular risk factors alone underestimates cardiovascular risk in RA. Systematic inflammation, measured by erythrocyte sedimentation rate or C-reactive protein is also a major risk factor. However, the contribution of traditional cardiovascular risk factors (such as obesity and hyperlipidaemia) compared to inflammation is uncertain in psoriatic arthritis (PsA) and RA. We examine the incidence of major adverse cardiac events (MACE) among patients with RA, PsA psoriasis, and controls adjusting for risk factors, inflammation and disease modifying anti-rheumatic drug treatment, to better define cardiovascular risk. METHODS: Using the Secure Anonymised Information Linkage databank, comprising routinely collected Welsh health data from 1999 to 2013, the incidence and first occurrence of a MACE in individuals with RA (n = 8650), PsA (n = 2128) and psoriasis (n = 24,630) compared to controls (n = 11,87,706) was investigated. RESULTS: Traditional cardiovascular risk factors are higher in RA, PsA and psoriasis than controls. After adjusting for these factors, additional cardiovascular risk was only significantly increased in female RA patients (HR = 1.3; 95% CI: 1.0-1.7; p = 0.05) and psoriasis (HR = 1.2; 95% CI: 1.0-1.4; p = 0.02) but not statistically significant for PsA (HR = 1.5; 95% CI: 0.9-2.5; p = 0.13). ESR and CRP were increased in patients with RA but not in patients with psoriasis. CONCLUSION: Additional increased cardiovascular risk was observed in female RA and psoriasis but not PsA. Systematic inflammation is higher in RA but not psoriasis, indicating that there are varying mediators of cardiovascular risk across these conditions.

Defining Disease Phenotypes in Primary Care Electronic Health Records by a Machine Learning Approach: A Case Study in Identifying Rheumatoid Arthritis.

OBJECTIVES: 1) To use data-driven method to examine clinical codes (risk factors) of a medical condition in primary care electronic health records (EHRs) that can accurately predict a diagnosis of the condition in secondary care EHRs. 2) To develop and validate a disease phenotyping algorithm for rheumatoid arthritis using primary care EHRs. METHODS: This study linked routine primary and secondary care EHRs in Wales, UK. A machine learning based scheme was used to identify patients with rheumatoid arthritis from primary care EHRs via the following steps: i) selection of variables by comparing relative frequencies of Read codes in the primary care dataset associated with disease case compared to non-disease control (disease/non-disease based on the secondary care diagnosis); ii) reduction of predictors/associated variables using a Random Forest method, iii) induction of decision rules from decision tree model. The proposed method was then extensively validated on an independent dataset, and compared for performance with two existing deterministic algorithms for RA which had been developed using expert clinical knowledge. RESULTS: Primary care EHRs were available for 2,238,360 patients over the age of 16 and of these 20,667 were also linked in the secondary care rheumatology clinical system. In the linked dataset, 900 predictors (out of a total of 43,100 variables) in the primary care record were discovered more frequently in those with versus those without RA. These variables were reduced to 37 groups of related clinical codes, which were used to develop a decision tree model. The final algorithm identified 8 predictors related to diagnostic codes for RA, medication codes, such as those for disease modifying anti-rheumatic drugs, and absence of alternative diagnoses such as psoriatic arthritis. The proposed data-driven method performed as well as the expert clinical knowledge based methods. CONCLUSION: Data-driven scheme, such as ensemble machine learning methods, has the potential of identifying the most informative predictors in a cost-effective and rapid way to accurately and reliably classify rheumatoid arthritis or other complex medical conditions in primary care EHRs.

The Cost of Ankylosing Spondylitis in the UK Using Linked Routine and Patient-Reported Survey Data.

BACKGROUND: Ankylosing spondylitis (AS) is a chronic inflammatory arthritis which typically begins in early adulthood and impacts on healthcare resource utilisation and the ability to work. Previous studies examining the cost of AS have relied on patient-reported questionnaires based on recall. This study uses a combination of patient-reported and linked-routine data to examine the cost of AS in Wales, UK. METHODS: Participants in an existing AS cohort study (n = 570) completed questionnaires regarding work status, out-of-pocket expenses, visits to health professionals and disease severity. Participants gave consent for their data to be linked to routine primary and secondary care clinical datasets. Health resource costs were calculated using a bottom-up micro-costing approach. Human capital costs methods were used to estimate work productivity loss costs, particularly relating to work and early retirement. Regression analyses were used to account for age, gender, disease activity. RESULTS: The total cost of AS in the UK is estimated at £19016 per patient per year, calculated to include GP attendance, administration costs and hospital costs derived from routine data records, plus patient-reported non-NHS costs, out-of-pocket AS-related expenses, early retirement, absenteeism, presenteeism and unpaid assistance costs. The majority of the cost (>80%) was as a result of work-related costs. CONCLUSION: The major cost of AS is as a result of loss of working hours, early retirement and unpaid carer's time. Therefore, much of AS costs are hidden and not easy to quantify. Functional impairment is the main factor associated with increased cost of AS. Interventions which keep people in work to retirement age and reduce functional impairment would have the greatest impact on reducing costs of AS. The combination of patient-reported and linked routine data significantly enhanced the health economic analysis and this methodology that can be applied to other chronic conditions.

Severe flare as a predictor of poor outcome in ankylosing spondylitis: a cohort study using questionnaire and routine data linkage.

OBJECTIVE: To explore severe flare and constant disease pattern (no periods of remission) in AS as predictors of poor outcomes [impaired function, unemployment/early retirement, work impairment, anti-TNF, surgery, frequent general practitioner (GP) visits, depression and anxiety]. METHODS: Three hundred and forty-eight AS patients completed questionnaires about their experience with disease flares. Questionnaire data were linked to electronic medical records to examine visits to GPs and hospital admission data. Outcomes were stratified in two ways: self-reported experience of severe flare and constant disease pattern using the flare illustration tool. RESULTS: The majority of patients (72%, 208/289) experienced flare pre-diagnosis. Severe flares were reported by 58% (202/348) of participants (self-report); of these, 195 responded about earliest flares and 69% (135/195) of severe flare patients experienced flares pre-diagnosis. Patients who self-reported severe flares had worse function, disease activity, work impairment and symptoms of anxiety and depression, were less likely to be employed and had more GP encounters per year compared with those who never reported severe flares. Participants who reported constant unremitting disease on the flare illustration tool had worse disease activity, impaired function and work impairment and were more likely to smoke compared with those with intermittent disease. Analysis showed a relationship between self-report of severe flare and subsequent depression, impaired function, increased disease activity and work limitations. CONCLUSION: Severe flare is associated with poor outcomes such as work impairment and impaired function. The onset of severe flare early in the disease course may be a risk factor for later poor outcome and this group could benefit from targeted early aggressive treatment to improve prognosis.

Feasibility and Domain Validation of Rheumatoid Arthritis (RA) Flare Core Domain Set: Report of the OMERACT 2014 RA Flare Group Plenary.

OBJECTIVE: The Outcome Measures in Rheumatology (OMERACT) Rheumatoid Arthritis (RA) Flare Group was established to develop an approach to identify and measure RA flares. An overview of our OMERACT 2014 plenary is provided. METHODS: Feasibility and validity of flare domains endorsed at OMERACT 11 (2012) were described based on initial data from 3 international studies collected using a common set of questions specific to RA flare. Mean flare frequency, severity, and duration data were presented, and domain scores were compared by flare status to examine known-groups validity. Breakout groups provided input for stiffness, self-management, contextual factors, and measurement considerations. RESULTS: Flare data from 501 patients in an observational study indicated 39% were in flare, with mean (SD) severity of 6.0 (2.6) and 55% lasting > 14 days. Pain, physical function, fatigue, participation, and stiffness scores averaged ≥ 2 times higher (2 of 11 points) in flaring individuals. Correlations between flare domains and corresponding legacy instruments were obtained: r = 0.46 to 0.93. A combined definition (patient report of flare and 28-joint Disease Activity Score increase) was evaluated in 2 other trials, with similar results. Breakout groups debated specific measurement issues. CONCLUSION: These data contribute initial evidence of feasibility and content validation of the OMERACT RA Flare Core Domain Set. Our research agenda for OMERACT 2016 includes establishing duration/intensity criteria and developing criteria to identify RA flares using existing disease activity measures. Ongoing work will also address discordance between patient and physician ratings, facilitate application of flare criteria to clinical care, elucidate the role of self-management, and finalize recommendations for RA flare measurement.

Patient perspectives of managing fatigue in Ankylosing Spondylitis, and views on potential interventions: a qualitative study.

BACKGROUND: Fatigue is a major component of living with ankylosing spondylitis (AS), though it has been largely over-looked, and currently there are no specific agreed management strategies. METHODS: This qualitative exploratory study involved participants who are members of an existing population-based ankylosing spondylitis (PAS) cohort. Participants residing in South West Wales were invited to participate in a focus group to discuss; (1) effects of fatigue, (2) self-management strategies and (3) potential future interventions. The focus groups were audio-recorded and the transcripts were analysed using thematic analysis. RESULTS: Participants consisted of 3 males/4 females (group 1) and 4 males/3 females (group 2), aged between 35 and 73 years (mean age 53 years). Three main themes were identified: (1) The effects of fatigue were multi-dimensional with participants expressing feelings of being 'drained' (physical), 'upset' (emotional) and experiencing 'low-mood' (psychological); (2) The most commonly reported self-management strategy for fatigue was a balanced combination of activity (exercise) and rest. Medication was reluctantly taken due to side-effects and worries over dependency; (3) Participants expressed a preference for psychological therapies rather than pharmacological for managing fatigue. Information on Mindfulness-Based Stress Reduction (MBSR) was received with interest, with recommendations for delivery in a group format with the option of distance-based delivery for people who were not able to attend a group course. CONCLUSIONS: Patients frequently try and manage their fatigue without any formal guidance or support. Our research indicates there is a need for future research to focus on psychological interventions to address the multi-faceted aspects of fatigue in AS.

The effect of physical activity and motivation on function in ankylosing spondylitis: a cohort study.

OBJECTIVES: Exercise is reported to improve function for people with ankylosing spondylitis (AS) but it is not clear if this effect is causal or if patients with milder disease find it easier to exercise. This study examines the effect of exercise and motivation to exercise on function, while controlling for disease severity. METHODS: Participants who were members of an existing AS cohort were asked about physical activity, motivation to exercise, function, and disease severity. Path analysis on STATA was used to examine the correlation between factors associated with function at time of exercise and with function after 3 months of follow-up. RESULTS: The response rate to the questionnaire was 88% (326/371). Improvement in function was greatest for people with higher physical activity levels and those who were more motivated to exercise-this was especially the case for patients with the most severe disease activity. The effect of motivation to exercise not only had a direct effect on function, but also an indirect effect of improving activity levels thereby improving both current and future function. People with high intrinsic motivation (driven by pleasure) had the greatest benefit to activity and function. CONCLUSIONS: Exercise does improve function, especially for those with severe disease. In addition, motivation alone improves function as much as exercising itself. Therefore, interventions targeting motivation to exercise would have as much effect on improving function as interventions offering exercise opportunities. In addition, any intervention that both improves motivation and increases opportunities to exercise would have a 2-fold influence on function.

Fatigue in ankylosing spondylitis: treatment should focus on pain management.

OBJECTIVES: Fatigue is an important symptom associated with ankylosing spondylitis (AS). This study examines patients' perspectives and clinical associations of fatigue to help inform potential strategies to alleviate fatigue in AS. METHODS: A mixed methods approach was taken to examine fatigue in a cohort of people with AS. Fatigue levels were evaluated from 3 consecutive monthly questionnaires. Open-ended questions on fatigue were analyzed using thematic analysis and logistic regression was used to examine quantitative data. In addition, fatigue levels were examined before and after treatment with anti-tumor necrosis factor (TNF) compared to nontreated controls. RESULTS: Three hundred forty-eight of 385 participants completed a fatigue questionnaire. Fatigue was reported to have significant physical, social, and psychological effects. A third of the participants reported that there was nothing they could do to reduce their fatigue, whereas other participants reported that medication, exercise, and resting helped. The main factor associated with fatigue was pain [ß-coefficient: 0.74 (95% CI: 0.66 to 0.81)], whereas depression was much less strongly associated. However, these factors only explained 40% of the variation in fatigue levels. Starting anti-TNF therapy reduced fatigue and pain levels compared to the period of time before taking anti-TNF [difference: 14.4 (95% CI: 5.3 to 23.5) on a scale of 0-100] and this reduction was not seen in controls over the same period. CONCLUSIONS: Fatigue is not strongly associated with anxiety, motivation, and depression; instead the factor most associated with fatigue is pain. This suggests that in addition to treatments to reduce disease activity, strategies for alleviating fatigue in AS should focus on pain management techniques and actively treating inflammation.

The information needs of people living with ankylosing spondylitis: a questionnaire survey.

BACKGROUND: Today, health care is patient-centred with patients more involved in medical decision making and taking an active role in managing their disease. It is important that patients are appropriately informed about their condition and that their health care needs are met. We examine the information utilisation, sources and needs of people with ankylosing spondylitis (AS). METHODS: Participants in an existing AS cohort study were asked to complete a postal or online questionnaire containing closed and open-ended questions, regarding their information access and needs. Participants were stratified by age and descriptive statistics were performed using STATA 11, while thematic analysis was performed on open-ended question narratives. Qualitative data was handled in Microsoft Access and explored for emerging themes and patterns of experiences. RESULTS: Despite 73% of respondents having internet access, only 49% used the internet to access information regarding AS. Even then, this was only infrequently. Only 50% of respondents reported accessing written information about AS, which was obtained mainly in specialist clinics. Women were more likely than men to access information (63% (women) 46% (men)) regardless of the source, while younger patients were more likely to use online sources. The main source of non-written information was the rheumatologist. Overall, the respondents felt there was sufficient information available, but there was a perception that the tone was often too negative. The majority (95%) of people would like to receive a regular newsletter about AS, containing positive practical and local information. Suggestions were also made for more information about AS to be made available to non-specialist medical professionals and the general public. CONCLUSIONS: There appears to be sufficient information available for people with AS in the UK and this is mostly accessed by younger AS patients. Many patients, particularly men, choose not to access AS information and concerns were raised about its negative tone. Patients still rely on written and verbal information from their specialists. Future initiatives should focus on the delivery of more positive information, targeting younger participants in particular and increasing the awareness in the general population and wider non-specialist medical community.

No increased rate of acute myocardial infarction or stroke among patients with ankylosing spondylitis-a retrospective cohort study using routine data.

OBJECTIVES: To examine if people with ankylosing spondylitis (AS) are at higher risk of acute myocardial infarction (MI) or stroke compared to those without AS. METHODS: Primary care records were linked with all hospital admissions and deaths caused by MI or stroke in Wales for the years 1999-2010. The linked data were then stratified by AS diagnosis and survival analysis was used to obtain the incidence rate of MI and separately cerebrovascular disease (CVD)/stroke. Cox regression was used to adjust for gender and age. Logistic regression was used to examine prevalence of diabetes, hypertension, or hyperlipidemia for those with AS compared to those without. RESULTS: There were 1686 AS patients (75.9% male, average age 46.1 years) compared to 1,206,621 controls (48.9% male, average age 35.9 years). Age- and gender-adjusted hazard ratios for MI were 1.28 (95% CI: 0.93 to 1.74) P = 0.12, and for CVD/stroke 1.0 (95% CI: 0.73 to 1.39) P = 0.9, in AS compared to controls. The prevalence of diabetes and hypertension, but not hyperlipidemia/hypercholesterolemia, was higher in AS. CONCLUSIONS: There is no increase in the MI or CVD/stroke rates in patients with AS compared to those without AS, despite higher rates of hypertension, which may be related to nonsteroidal anti-inflammatory drug use.

HERALD (health economics using routine anonymised linked data).

BACKGROUND: Health economic analysis traditionally relies on patient derived questionnaire data, routine datasets, and outcomes data from experimental randomised control trials and other clinical studies, which are generally used as stand-alone datasets. Herein, we outline the potential implications of linking these datasets to give one single joined up data-resource for health economic analysis. METHOD: The linkage of individual level data from questionnaires with routinely-captured health care data allows the entire patient journey to be mapped both retrospectively and prospectively. We illustrate this with examples from an Ankylosing Spondylitis (AS) cohort by linking patient reported study dataset with the routinely collected general practitioner (GP) data, inpatient (IP) and outpatient (OP) datasets, and Accident and Emergency department data in Wales. The linked data system allows: (1) retrospective and prospective tracking of patient pathways through multiple healthcare facilities; (2) validation and clarification of patient-reported recall data, complementing the questionnaire/routine data information; (3) obtaining objective measure of the costs of chronic conditions for a longer time horizon, and during the pre-diagnosis period; (4) assessment of health service usage, referral histories, prescribed drugs and co-morbidities; and (5) profiling and stratification of patients relating to disease manifestation, lifestyles, co-morbidities, and associated costs. RESULTS: Using the GP data system we tracked about 183 AS patients retrospectively and prospectively from the date of questionnaire completion to gather the following information: (a) number of GP events; (b) presence of a GP 'drug' read codes; and (c) the presence of a GP 'diagnostic' read codes. We tracked 236 and 296 AS patients through the OP and IP data systems respectively to count the number of OP visits; and IP admissions and duration. The results are presented under several patient stratification schemes based on disease severity, functions, age, sex, and the onset of disease symptoms. CONCLUSION: The linked data system offers unique opportunities for enhanced longitudinal health economic analysis not possible through the use of traditional isolated datasets. Additionally, this data linkage provides important information to improve diagnostic and referral pathways, and thus helps maximise clinical efficiency and efficiency in the use of resources.