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2.
Rheumatology (Oxford) ; 62(12): 3819-3827, 2023 12 01.
Artigo em Inglês | MEDLINE | ID: mdl-37018151

RESUMO

OBJECTIVES: To estimate the cost-effectiveness of a cognitive behavioural approach (CBA) or a personalized exercise programme (PEP), alongside usual care (UC), in patients with inflammatory rheumatic diseases who report chronic, moderate to severe fatigue. METHODS: A within-trial cost-utility analysis was conducted using individual patient data collected within a multicentre, three-arm randomized controlled trial over a 56-week period. The primary economic analysis was conducted from the UK National Health Service (NHS) perspective. Uncertainty was explored using cost-effectiveness acceptability curves and sensitivity analysis. RESULTS: Complete-case analysis showed that, compared with UC, both PEP and CBA were more expensive [adjusted mean cost difference: PEP £569 (95% CI: £464, £665); CBA £845 (95% CI: £717, £993)] and, in the case of PEP, significantly more effective [adjusted mean quality-adjusted life year (QALY) difference: PEP 0.043 (95% CI: 0.019, 0.068); CBA 0.001 (95% CI: -0.022, 0.022)]. These led to an incremental cost-effectiveness ratio (ICER) of £13 159 for PEP vs UC, and £793 777 for CBA vs UC. Non-parametric bootstrapping showed that, at a threshold value of £20 000 per QALY gained, PEP had a probability of 88% of being cost-effective. In multiple imputation analysis, PEP was associated with significant incremental costs of £428 (95% CI: £324, £511) and a non-significant QALY gain of 0.016 (95% CI: -0.003, 0.035), leading to an ICER of £26 822 vs UC. The estimates from sensitivity analyses were consistent with these results. CONCLUSION: The addition of a PEP alongside UC is likely to provide a cost-effective use of health care resources.


Assuntos
Doenças Reumáticas , Medicina Estatal , Humanos , Análise Custo-Benefício , Fadiga/etiologia , Fadiga/terapia , Terapia por Exercício , Cognição , Anos de Vida Ajustados por Qualidade de Vida
3.
RMD Open ; 8(2)2022 09.
Artigo em Inglês | MEDLINE | ID: mdl-36104116

RESUMO

OBJECTIVE: Multiple long-term conditions (MLTCs) are prevalent in rheumatoid arthritis (RA) and associated with worse outcomes and greater economic burden. However, little is known about the impact of MLTCs on the cost-of-illness (COI) in early RA, including direct and indirect costs. The objective of this study was to quantify this impact on COI. METHODS: The Scottish Early Rheumatoid Arthritis study is a national cohort of adults with new-onset RA. Direct costs were estimated applying relevant unit costs to health resource utilisation; indirect costs were measured by productivity loss due to health conditions. Two-part models were used, adjusting for age, gender, baseline functional disability and health-related quality of life. The Charlson Comorbidity Index score was calculated using ICD-10 diagnoses. Individuals were defined as 'RA alone', 'RA plus LTC' and 'RA plus MLTCs' according to the number of coexisting LTCs. RESULTS: Data were available for 818 participants. Average annualised direct costs incurred by people with early RA plus MLTCs (£4444; 95% CI £3100 to £6371) were twice as, and almost five times higher than, those with a single LTC (£2184; 95% CI £1596 to £2997) and those without LTC (£919; 95% CI £694 to £1218), respectively. Indirect costs incurred by RA plus MLTCs (£842; 95% CI £377to £1521) were 3.1 times higher than RA alone (£530; 95% CI £273to £854). The relative proportion of direct costs increased with LTC category, ranging from 77.2% to 84.1%. In addition to increased costs with LTCs, costs also increased with age and were higher for men regardless of LTC category. CONCLUSIONS: MLTCs impact on COI early in the course of RA. The presence of LTCs is associated with significant increases in both direct and indirect costs among people with early RA.


Assuntos
Artrite Reumatoide , Qualidade de Vida , Adulto , Artrite Reumatoide/diagnóstico , Artrite Reumatoide/epidemiologia , Efeitos Psicossociais da Doença , Humanos , Masculino
4.
J Rheumatol ; 49(6 Suppl 1): 64-67, 2022 06.
Artigo em Inglês | MEDLINE | ID: mdl-35428713

RESUMO

Each year, the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) holds a trainee symposium adjacent to the GRAPPA annual meeting. The target audience for this meeting includes trainees in rheumatology, dermatology, and related fields. The 2021 GRAPPA Trainee Symposium focused on challenges in the diagnosis and assessment of psoriatic arthritis (PsA). During the meeting, speakers focused on identification of psoriasis (PsO), the differential diagnosis for both PsO and PsA, diagnostic errors and pitfalls, physical examination in PsA, patient-reported outcomes and composite measures in the assessment of PsA, and the patient perspective on diagnosis and assessment, followed by a panel discussion. This paper summarizes the content discussed at the meeting.


Assuntos
Artrite Psoriásica , Dermatologia , Psoríase , Reumatologia , Artrite Psoriásica/diagnóstico , Humanos
5.
Sci Total Environ ; 799: 149505, 2021 Dec 10.
Artigo em Inglês | MEDLINE | ID: mdl-34371416

RESUMO

The regular drought episodes in South Africa highlight the need to reduce drought risk by both policy and local community actions. Environmental and socioeconomic factors in South Africa's agricultural system have been affected by drought in the past, creating cascading pressures on the nation's agro-economic and water supply systems. Therefore, understanding the key drivers of all risk components through a comprehensive risk assessment must be undertaken in order to inform proactive drought risk management. This paper presents, for the first time, a national drought risk assessment for irrigated and rainfed systems, that takes into account the complex interaction between different risk components. We use modeling and remote sensing approaches and involve national experts in selecting vulnerability indicators and providing information on human and natural drivers. Our results show that all municipalities have been affected by drought in the last 30 years. The years 1981-1982, 1992, 2016 and 2018 were marked as the driest years during the study period (1981-2018) compared to the reference period (1986-2015). In general, the irrigated systems are remarkably less often affected by drought than rainfed systems; however, most farmers on irrigated land are smallholders for whom drought impacts can be significant. The drought risk of rainfed agricultural systems is exceptionally high in the north, central and west of the country, while for irrigated systems, there are more separate high-risk hotspots across the country. The vulnerability assessment identified potential entry points for disaster risk reduction at the local municipality level, such as increasing environmental awareness, reducing land degradation and increasing total dam and irrigation capacity.


Assuntos
Agricultura , Desastres , Secas , Gestão de Riscos , África do Sul
6.
Int J Biometeorol ; 65(4): 565-576, 2021 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-33252716

RESUMO

One of the major sources of uncertainty in large-scale crop modeling is the lack of information capturing the spatiotemporal variability of crop sowing dates. Remote sensing can contribute to reducing such uncertainties by providing essential spatial and temporal information to crop models and improving the accuracy of yield predictions. However, little is known about the impacts of the differences in crop sowing dates estimated by using remote sensing (RS) and other established methods, the uncertainties introduced by the thresholds used in these methods, and the sensitivity of simulated crop yields to these uncertainties in crop sowing dates. In the present study, we performed a systematic sensitivity analysis using various scenarios. The LINTUL-5 crop model implemented in the SIMPLACE modeling platform was applied during the period 2001-2016 to simulate maize yields across four provinces in South Africa using previously defined scenarios of sowing dates. As expected, the selected methodology and the selected threshold considerably influenced the estimated sowing dates (up to 51 days) and resulted in differences in the long-term mean maize yield reaching up to 1.7 t ha-1 (48% of the mean yield) at the province level. Using RS-derived sowing date estimations resulted in a better representation of the yield variability in space and time since the use of RS information not only relies on precipitation but also captures the impacts of socioeconomic factors on the sowing decision, particularly for smallholder farmers. The model was not able to reproduce the observed yield anomalies in Free State (Pearson correlation coefficient: 0.16 to 0.23) and Mpumalanga (Pearson correlation coefficient: 0.11 to 0.18) in South Africa when using fixed and precipitation rule-based sowing date estimations. Further research with high-resolution climate and soil data and ground-based observations is required to better understand the sources of the uncertainties in RS information and to test whether the results presented herein can be generalized among crop models with different levels of complexity and across distinct field crops.


Assuntos
Agricultura , Zea mays , Tecnologia de Sensoriamento Remoto , Solo , África do Sul
7.
Ann Rheum Dis ; 79(6): 771-777, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-32245893

RESUMO

BACKGROUND: The past decades have seen rapid advances in the treatment of rheumatoid arthritis (RA). In particular, the introduction of biologic and targeted synthetic disease-modifying antirheumatic drugs have improved clinical outcomes and reconfigured traditional RA cost compositions. OBJECTIVES: To map the existing evidence concerning cost of illness of RA, as the treatment pathway evolves in the biologic era, and examine how costs have been measured and estimated, in order to assemble and appropriately interpret available data. METHODS: Systematic review of studies that estimated the costs of patients with RA. Multiple electronic databases were searched to identify studies published between 2000 and 2019. The reported total costs and cost components were evaluated according to the study and population characteristics. The Cochran-Armitage test was used to determine statistically significant trends in increasing or decreasing proportions over time. RESULTS: Overall, 72 studies were included. Drug costs compromised the main component (up to 87%) of direct costs with an increasing trajectory over time, although not statistically significant. The proportion of costs for hospitalisation showed a statistically significant decrease chronologically (p=0.044). Indirect costs, primarily associated with absenteeism and work disability accounted for 39% to 86% of total costs. The reported indirect costs are highly sensitive to the approach to estimation. CONCLUSIONS: A decreasing trend in inpatient costs chronologically suggested a cost shift in other components of direct costs. Indirect costs still contributed a considerable proportion of total costs, with work disability being the main cost component. Economic analyses that do not incorporate or appropriately measure indirect costs will underestimate the full economic impact of RA.


Assuntos
Artrite Reumatoide/economia , Efeitos Psicossociais da Doença , Emprego/economia , Custos de Cuidados de Saúde , Absenteísmo , Artrite Reumatoide/tratamento farmacológico , Produtos Biológicos/uso terapêutico , Pessoas com Deficiência , Custos de Medicamentos , Humanos
8.
Rheumatology (Oxford) ; 58(10): 1746-1754, 2019 10 01.
Artigo em Inglês | MEDLINE | ID: mdl-31220322

RESUMO

OBJECTIVES: To examine how comorbidities cluster in axial spondyloarthritis (axSpA) and whether these clusters are associated with quality of life, global health and other outcome measures. METHODS: We conducted a cross-sectional study of consecutive patients meeting ASAS criteria for axSpA in Liverpool, UK. Outcome measures included quality of life (EQ5D), global health and disease activity (BASDAI). We used hierarchical cluster analysis to group patients according to 38 pre-specified comorbidities. In multivariable linear models, the associations between distinct comorbidity clusters and each outcome measure were compared, using axSpA patients with no comorbidities as the reference group. Analyses were adjusted for age, gender, symptom duration, BMI, deprivation, NSAID-use and smoking. RESULTS: We studied 419 patients (69% male, mean age 46 years). 255 patients (61%) had at least one comorbidity, among whom the median number was 1 (range 1-6). Common comorbidities were hypertension (19%) and depression (16%). Of 15 clusters identified, the most prevalent clusters were hypertension-coronary heart disease and depression-anxiety. Compared with patients with no comorbidities, the fibromyalgia-irritable bowel syndrome cluster was associated with adverse patient-reported outcome measures; these patients reported 1.5-unit poorer global health (95%CI 0.01, 2.9), reduced quality of life (0.25-unit lower EQ5D; 95%CI -0.37, -0.12) and 1.8-unit higher BASDAI (95% CI 0.4, 3.3). Similar effect estimates were found for patients in the depression-anxiety cluster. CONCLUSION: Comorbidity is common among axSpA patients. The two most common comorbidities were hypertension and depression. Patients in the depression-anxiety and fibromyalgia-IBS clusters reported poorer health and increased axSpA severity.


Assuntos
Efeitos Psicossociais da Doença , Depressão/epidemiologia , Hipertensão/epidemiologia , Índice de Gravidade de Doença , Espondilartrite/epidemiologia , Adulto , Ansiedade/epidemiologia , Análise por Conglomerados , Comorbidade , Doença das Coronárias/epidemiologia , Estudos Transversais , Feminino , Fibromialgia/epidemiologia , Humanos , Síndrome do Intestino Irritável/epidemiologia , Modelos Lineares , Masculino , Pessoa de Meia-Idade , Medidas de Resultados Relatados pelo Paciente , Qualidade de Vida , Espondilartrite/psicologia , Reino Unido/epidemiologia
9.
BMJ Open ; 9(1): e026793, 2019 01 30.
Artigo em Inglês | MEDLINE | ID: mdl-30705244

RESUMO

INTRODUCTION: Fatigue remains pervasive, disabling and challenging to manage across all inflammatory rheumatic diseases (IRDs). Non-pharmacological interventions, specifically cognitive-behavioural approaches (CBAs) and graded exercise programmes designed to support and increase exercise, are valuable treatments which help patients with IRD to manage their fatigue. Yet, healthcare systems have encountered substantial barriers to the implementation of these therapeutic options. Lessening the Impact of Fatigue in Inflammatory Rheumatic Diseases: a Randomised Trial (LIFT) is designed to give insights into the effectiveness of a remotely delivered standardised intervention for a range of patients with IRD. It will also enable the exploration of putative moderating factors which may allow for the future triage of patients and to investigate the precise mediators of treatment effect in IRD-related fatigue. METHODS AND ANALYSIS: LIFT is a pragmatic, multicentre, three-arm randomised, controlled trial, which will test whether adapted CBA and personalised exercise programme interventions can individually reduce the impact and severity of fatigue. This will be conducted with up to 375 eligible patients diagnosed with IRD and interventions will be delivered by rheumatology healthcare professionals, using the telephone or internet-based audio/video calls. ETHICS APPROVAL AND DISSEMINATION: Ethical approval has been granted by Wales REC 7 (17/WA/0065). Results of this study will be disseminated through presentation at scientific conferences and in scientific journal. A lay summary of the results will be sent to participants. TRIAL REGISTRATION NUMBER: NCT03248518; Pre-results.


Assuntos
Terapia Cognitivo-Comportamental/métodos , Terapia por Exercício/métodos , Fadiga/terapia , Febre Reumática/terapia , Análise Custo-Benefício , Humanos , Estudos Multicêntricos como Assunto , Qualidade de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto , Febre Reumática/fisiopatologia , Índice de Gravidade de Doença
10.
Glob Chang Biol ; 21(11): 4031-48, 2015 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-26227557

RESUMO

This study evaluates the impacts of projected climate change on irrigation requirements and yields of six crops (winter wheat, winter barley, rapeseed, grain maize, potato, and sugar beet) in Europe. Furthermore, the uncertainty deriving from consideration of irrigation, CO2 effects on crop growth and transpiration, and different climate change scenarios in climate change impact assessments is quantified. Net irrigation requirement (NIR) and yields of the six crops were simulated for a baseline (1982-2006) and three SRES scenarios (B1, B2 and A1B, 2040-2064) under rainfed and irrigated conditions, using a process-based crop model, SIMPLACE . We found that projected climate change decreased NIR of the three winter crops in northern Europe (up to 81 mm), but increased NIR of all the six crops in the Mediterranean regions (up to 182 mm yr(-1) ). Climate change increased yields of the three winter crops and sugar beet in middle and northern regions (up to 36%), but decreased their yields in Mediterranean countries (up to 81%). Consideration of CO2 effects can alter the direction of change in NIR for irrigated crops in the south and of yields for C3 crops in central and northern Europe. Constraining the model to rainfed conditions for spring crops led to a negative bias in simulating climate change impacts on yields (up to 44%), which was proportional to the irrigation ratio of the simulation unit. Impacts on NIR and yields were generally consistent across the three SRES scenarios for the majority of regions in Europe. We conclude that due to the magnitude of irrigation and CO2 effects, they should both be considered in the simulation of climate change impacts on crop production and water availability, particularly for crops and regions with a high proportion of irrigated crop area.


Assuntos
Irrigação Agrícola , Dióxido de Carbono/metabolismo , Mudança Climática , Produtos Agrícolas/fisiologia , Transpiração Vegetal , Produtos Agrícolas/crescimento & desenvolvimento , Europa (Continente) , Modelos Biológicos , Água/metabolismo
11.
PLoS One ; 10(7): e0126105, 2015.
Artigo em Inglês | MEDLINE | ID: mdl-26185984

RESUMO

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.


Assuntos
Efeitos Psicossociais da Doença , Custos de Cuidados de Saúde/estatística & dados numéricos , Gastos em Saúde/estatística & dados numéricos , Espondilite Anquilosante/economia , Absenteísmo , Adulto , Idoso , Doença Crônica , Análise Custo-Benefício , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Aposentadoria/estatística & dados numéricos , Índice de Gravidade de Doença , Espondilite Anquilosante/epidemiologia , Espondilite Anquilosante/patologia , Inquéritos e Questionários , País de Gales/epidemiologia
12.
BMC Musculoskelet Disord ; 13: 243, 2012 Dec 10.
Artigo em Inglês | MEDLINE | ID: mdl-23227937

RESUMO

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.


Assuntos
Acesso à Informação , Informação de Saúde ao Consumidor , Sistemas de Informação em Saúde , Conhecimentos, Atitudes e Prática em Saúde , Necessidades e Demandas de Serviços de Saúde , Educação de Pacientes como Assunto , Pacientes/psicologia , Espondilite Anquilosante/psicologia , Adulto , Fatores Etários , Atitude Frente aos Computadores , Conscientização , Informação de Saúde ao Consumidor/estatística & dados numéricos , Feminino , Sistemas de Informação em Saúde/estatística & dados numéricos , Humanos , Internet , Masculino , Pessoa de Meia-Idade , Satisfação do Paciente , Percepção , Fatores Sexuais , Espondilite Anquilosante/fisiopatologia , Inquéritos e Questionários , Reino Unido , Redação , Adulto Jovem
13.
BMC Med Inform Decis Mak ; 12: 24, 2012 Mar 29.
Artigo em Inglês | MEDLINE | ID: mdl-22458665

RESUMO

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.


Assuntos
Doença Crônica/economia , Efeitos Psicossociais da Doença , Coleta de Dados/métodos , Avaliação de Processos e Resultados em Cuidados de Saúde/economia , Padrões de Prática Médica , Adulto , Idoso , Doença Crônica/prevenção & controle , Doença Crônica/terapia , Custos e Análise de Custo , Testes Diagnósticos de Rotina/economia , Serviços Médicos de Emergência/economia , Serviços Médicos de Emergência/estatística & dados numéricos , Feminino , Clínicos Gerais/estatística & dados numéricos , Hospitalização/economia , Hospitalização/estatística & dados numéricos , Humanos , Masculino , Pessoa de Meia-Idade , Avaliação de Processos e Resultados em Cuidados de Saúde/estatística & dados numéricos , Padrões de Prática Médica/estatística & dados numéricos , Encaminhamento e Consulta , Estudos Retrospectivos , Espondilite Anquilosante/diagnóstico , Espondilite Anquilosante/terapia , Inquéritos e Questionários , País de Gales
14.
BMC Musculoskelet Disord ; 11: 197, 2010 Sep 01.
Artigo em Inglês | MEDLINE | ID: mdl-20809952

RESUMO

BACKGROUND: To develop a population-based cohort of people with ankylosing spondylitis (AS) in Wales using (1) secondary care clinical datasets, (2) patient-derived questionnaire data and (3) routinely-collected information in order to examine disease history and the health economic cost of AS. METHODS: This data model will include and link (1) secondary care clinician datasets (i.e. electronic patient notes from the rheumatologist) (2) patient completed questionnaires (giving information on disease activity, medication, function, quality of life, work limitations and health service utilisation) and (3) a broad range of routinely collected data (including; GP records, in-patient hospital admission data, emergency department data, laboratory/pathology data and social services databases). The protocol involves the use of a unique and powerful data linkage system which allows datasets to be interlinked and to complement each other. DISCUSSION: This cohort can integrate patient supplied, primary and secondary care data into a unified data model. This can be used to study a range of issues such as; the true economic costs to the health care system and the patient, factors associated with the development of severe disease, long term adverse events of new and existing medication and to understand the disease history of this condition. It will benefit patients, clinicians and health care managers. This study forms a pilot project for the use of routine data/patient data linked cohorts for other chronic conditions.


Assuntos
Protocolos Clínicos/normas , Estudos de Coortes , Inquéritos Epidemiológicos/métodos , Espondilite Anquilosante/epidemiologia , Estudos Transversais/métodos , Coleta de Dados/métodos , Humanos , Projetos Piloto , Espondilite Anquilosante/economia , Espondilite Anquilosante/terapia , País de Gales/epidemiologia
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