Healthcare use attributable to COVID-19: a propensity-matched national electronic health records cohort study of 249,390 people in Wales, UK.

BACKGROUND: To determine the extent and nature of changes associated with COVID-19 infection in terms of healthcare utilisation, this study observed healthcare contact 1 to 4 and 5 to 24 weeks following a COVID-19 diagnosis compared to propensity-matched controls. METHODS: Two hundred forty nine thousand three hundred ninety Welsh individuals with a positive reverse transcription-polymerase chain reaction (RT-PCR) test were identified from data from national PCR test results. After elimination criteria, 98,600 positive individuals were matched to test negative and never tested controls using propensity matching. Cohorts were split on test location. Tests could be taken in either the hospital or community. Controls were those who had tested negative in their respective environments. Survival analysis was utilised for first clinical outcomes which are grouped into primary and secondary. Primary outcomes include post-viral-illness and fatigue as an indication of long-COVID. Secondary outcomes include clinical terminology concepts for embolism, respiratory conditions, mental health conditions, fit notes, or hospital attendance. Increased instantaneous risk for positive individuals was quantified using hazard ratios (HR) from Cox regression, while absolute risk (AR) and relative risk were quantified using life table analysis. RESULTS: Analysis was conducted using all individuals and stratified by test location. Cases are compared to controls from the same test location. Fatigue (HR: 1.77, 95% CI: 1.34-2.25, p = < 0.001) and embolism (HR: 1.50, 95% CI: 1.15-1.97, p = 0.003) were more likely to occur in all positive individuals in the first 4 weeks; however, anxiety and depression (HR: 0.83, 95% CI: 0.73-0.95, p = 0.007) were less likely. Positive individuals continued to be more at risk of fatigue (HR: 1.47, 95% CI: 1.24-1.75, p = < 0.001) and embolism (HR: 1.51, 95% CI: 1.13-2.02, p = 0.005) after 4 weeks. All positive individuals are also at greater risk of post-viral illness (HR: 4.57, 95% CI: 1.77-11.80, p = 0.002). Despite statistical association between testing positive and several conditions, life table analysis shows that only a small minority of the study population were affected. CONCLUSIONS: Community COVID-19 disease is associated with increased risks of post-viral-illness, fatigue, embolism, and respiratory conditions. Despite elevated risks, the absolute healthcare burden is low. Subsequently, either very small proportions of people experience adverse outcomes following COVID-19 or they are not presenting to healthcare.

Cross-sectoral cancer care: views from patients and health care professionals regarding a personal electronic health record.

Cross-sectoral cancer care is complex and involves collaboration from health care professionals (HCPs) across multiple sectors. However, when health information exchange (HIE) is not adequate, it results in impeded coordination and continuity of care. A web-based personal electronic health record (PEPA) under patients' control, providing access to personal health data across sectors, is being developed. Aim of this study was to explore perceived benefits and concerns. Using a qualitative approach, 10 focus groups were performed collecting views of three prospective user groups: patients with colorectal cancer (n = 12), physicians (n = 17) and other HCPs (n = 16). Representatives from different health sectors across the Rhine-Neckar region (Germany) participated. Data were audio- and videotaped, transcribed verbatim and thematically analysed. Our study shows that patients and HCPs expected a PEPA to enhance cross-sectoral availability of information, cross-sectoral cooperation and facilitate data management. Quality of cancer care was expected to be improved. Concerns were expressed in terms of data protection and data security. Concepts like a PEPA offer the chance to support HIE and avoid gaps of information in cross-sectoral cancer care. This may lead to improvements in coordination and continuity of care. Issues concerning data security and protection have to be addressed.

Understanding and beliefs of diabetes in the UK Bangladeshi population.

AIMS: To examine the understanding and beliefs of people with diabetes from the Bangladeshi community living in the UK. METHODS: Structured interviews were carried out with 14 people invited to a peer educational programme. All interviews were on a one-to-one basis and were in Sylheti or in English. Interviews were transcribed and analysed by two independent researchers. RESULTS: The majority of participants did not know what caused diabetes. Knowledge of the management of diabetes was linked to controlling sugar intake and a number of participants reported eating bitter foods such as bitter gourd to control their diabetes. There was little access to information as many participants did not speak English and did not have a Bengali-speaking doctor. The majority of participants felt that education classes should teach them what the doctor thought was important and that these classes would best be advertised by word of mouth. Therefore, participants were quite passive about their own self management and relied very strongly on the doctor's views and recommendations. CONCLUSIONS: Findings from this study can be used to help health professionals working with Bangladeshi people. There is a need for improved information for Bangladeshi people and much of this information might need to come from health professionals. In addition, there is a need for increased awareness by health professionals of practices used by Bangladeshi people, such as eating bitter gourd (which may enhance the effects of rosiglitazone), and the influence these practices could have on the individual's diabetes management.

Examining the effectiveness of a peer-led education programme for Type 2 diabetes and cardiovascular disease in a Bangladeshi population.

AIMS: The aim of this study was to assess an adapted version of the X-PERT Programme for Type 2 diabetes within a Bangladeshi population. METHODS: Bangladeshi adults, living in the UK, with Type 2 diabetes participated in a diabetes educational session based on an adapted version of the X-PERT Programme. Participants attended a session, led by a trained peer educator and carried out in Sylheti. All participants who registered on the course were telephoned or visited in person the day before the course as a reminder. RESULTS: Registration to attend the course was excellent. However, actual attendance rates were 58% (42/72) out of those registered. Once participants attended, overall they enjoyed attending the sessions and felt they benefited as they understood more about how to better self-manage their condition. Those aspects of the sessions that were most enjoyed were group discussions and interactive posters to explain diabetes. Participants requested a home-based exercise guide, which was developed by the research team. The study was underpowered to show behaviour change, but did demonstrate a trend to improvement in self-care activities. All participants reported recommending the course to others. CONCLUSIONS: There was an excellent response in terms of registration for the course. However, the time to attend the course appeared to be a barrier to participants. Nevertheless, for those attending the course, responses were very positive. The amended X-PERT Programme could be used as a component of a package to improve outcome and self-management for people with diabetes in the Bangladeshi community.

Latent autoimmune diabetes in adults (LADA) in South Wales: incidence and characterization.

AIM: To define the incidence and characteristics of latent autoimmune diabetes in adults (LADA). METHODS: We estimated the incidence of LADA by examining the incidence of Type 2 diabetes and calculating the proportion that were antibody positive. The incidence of Type 2 diabetes was calculated by analysis of computer records of 35 out of 36 general practices in Swansea. In addition, thirty-two practices participated in recruiting people with Type 2 diabetes to have glutamic acid decarboxylase (GAD) antibody testing. RESULTS: The crude proportion of Type 2 patients testing positive for GAD antibodies (GADA) was 4.0% (28/683). This figure did not change when we analysed only the practices that tested more than 60% of all eligible patients. In these practices, 79% (387/487) of all eligible patients were GADA tested and 14/387 [3.6% (95% confidence interval: 2.1-6.1%)] were classified as having LADA. This gives an incidence of LADA of 9 per 100,000 (95% confidence interval: 4.4-17.8 per 100,000) people per year registered with a general practitioner. Patients testing positive for GADA were more likely to have a lower body mass index, other antibodies, to present with acute symptoms and to have higher glycated haemoglobin. CONCLUSIONS: This is the first study of the incidence of LADA in primary care. People with LADA make up a significant proportion of people with apparent Type 2 diabetes. Patients with LADA are likely to be symptomatic, have poorer glycaemic control and have other autoimmune antibodies.

Intervention, recruitment and evaluation challenges in the Bangladeshi community: experience from a peer lead educational course.

BACKGROUND: The incidence of Type 2 diabetes is increasing worldwide and diabetes is four times more common among ethnic minority groups than among the general Caucasian population. This study reflects on the specific issues of engaging people and evaluating interventions through written questionnaires within older ethnic minority groups. METHODS: The original protocol set out to evaluate an adapted version of the X-PERT patient program http://www.xpert-diabetes.org.uk/ using questionnaires and interviews. RESULTS: Questionnaires, even verbally completed, were unsuccessful and difficult to administer as participants found the questionnaire structure and design difficult to follow and did not perceive any benefit to completing the questionnaires. The benefits of attending the course were also poorly understood by participants and in many cases people participated in coming to the course as a favour to the researcher. Engaging participants required word of mouth and the involvement of active members of the community. CONCLUSION: Peer led courses and their evaluation in older ethnic minority communities needs a very different approach for that in younger Caucasian patients. A structured approached to evaluation (favoured by western educational system) is inappropriate. Engaging participants is difficult and the employment of local well known people is essential.

Routine glutamic acid decarboxylase autoantibody (GADA) testing: patients' perspective.

BACKGROUND: Latent autoimmune diabetes in adults (LADA) is a form of type 1 diabetes which in the UK is often diagnosed and treated as type 2 diabetes (T2D). People with LADA show slow progression to insulin dependence and can be distinguished from T2D by blood tests for glutamic acid decarboxylase autoantibodies (GADA). Aims. This study explores the views and experiences of patients who are newly diagnosed with LADA, with particular reference to (i) routine GADA testing; (ii) whether this diagnosis has any influence on the self-management of their diabetes; and (iii) the information needs of patients newly diagnosed with LADA. METHODS: Ten consecutive patients newly diagnosed with LADA (GADA positive) were invited to participate in individual qualitative semi-structured interviews. Their views and experiences were analysed into codes and categories, using a constant comparative method. FINDINGS: Participants supported routine GADA testing in all patients with diabetes because the provision of a correct diagnosis has an empowering effect on patients, as it encourages the consideration of treatment options early on in the condition. Participants preferred to rely on future Hba(1c) levels and their doctor's opinion to determine a change in treatment to insulin. Some participants had difficulty distinguishing between the different types of diabetes, including LADA. Others needed to ask questions about LADA in addition to written information. CONCLUSIONS: Participants were supportive of routine GADA testing, would prefer not to start insulin immediately following a diagnosis of LADA and needed to discuss treatment options with health professionals who were knowledgeable on LADA.

Interventions for latent autoimmune diabetes (LADA) in adults.

BACKGROUND: Latent autoimmune diabetes in Adults (LADA) is a slowly developing type 1 diabetes which presents as non-insulin dependent diabetes and progresses to insulin dependence. However, the best treatment strategy for LADA is unclear. OBJECTIVES: To compare interventions used for LADA. SEARCH STRATEGY: Studies were obtained from searches of electronic databases (including MEDLINE, EMBASE), supplemented by hand searches, conference proceedings and consultation with experts. SELECTION CRITERIA: Selection was in duplicate by two independent reviewers. RCT and controlled clinical trials evaluating interventions for LADA or type 2 diabetes with antibodies were included. DATA COLLECTION AND ANALYSIS: Two reviewers independently extracted data and assessed study quality. Studies were summarised in a descriptive manner. MAIN RESULTS: Searches identified 8067 citations. Eight publications (seven studies) were included, involving 735 participants. All studies had high risk of bias. There were no data on use of metformin or glitazones alone. Rosiglitazone or sulphonylurea (SU) with insulin did not improve metabolic control significantly more than insulin alone. SU alone gave either poorer (one study, mean difference in HbA1c 2.8% (95% confidence interval (CI) 0.9 to 4.7) or equivalent metabolic control compared to insulin alone (two studies). There was evidence that SU caused earlier insulin dependence (insulin treated at two years: 60% (SU) and 5% (conventional care) (P < 0.001); classified insulin dependent: 64% (SU) and 12.5% (insulin group) (P = 0.007)). No interventions influenced fasting C-peptide, but insulin maintained stimulated C-peptide better than SU (one study, mean difference 7.7 ng/ml (95% CI 2.9 to 12.5) and insulin with rosiglitazone was superior to insulin alone (one study) at maintaining stimulated C-peptide. A pilot study showed better metabolic control at six months with subcutaneously administered glutamic acid decarboxylase (GAD) GAD65, a major autoantigen in autoimmune diabetes, compared to placebo. There was no information regarding quality of life, mortality, complications or costs in any of the publications. Time from diagnosis varied between recruitment at diagnosis to recruitment at nine years of disease duration and there was a great deal of variation in the selection criteria for LADA patients, making it difficult to generalise findings from these studies. AUTHORS' CONCLUSIONS: There are few studies on this topic and existing studies have a high risk of bias. However, there does seem to be an indication that SU should not be a first line treatment for antibody positive type 2 diabetes. There is no significant evidence for or against other lines of treatment of LADA.

Modification of the home environment for the reduction of injuries.

BACKGROUND: Injury in the home is extremely common, accounting for around a third of all injuries. The majority of injuries of children under five and people aged 75 and over, occur at home. Multifactorial injury prevention interventions have been shown to reduce injuries in the home. However, few studies have focused specifically on the impact of physical adaptations to the home environment and the effectiveness of such interventions needs to be ascertained. OBJECTIVES: To review the evidence for the effect on injuries of modification of the home environment with a primary focus on interventions to reduce physical hazards. SEARCH STRATEGY: We searched The Cochrane Library, MEDLINE, EMBASE, National Research Register and other specialised databases. We also scanned conference proceedings and reference lists. In addition, we contacted experts and trialists in the field. The searches were not restricted by language or publication status. The searches were last updated in December 2004. SELECTION CRITERIA: Randomised controlled trials. DATA COLLECTION AND ANALYSIS: All abstracts were screened by two authors for relevance, outcome and design. Two authors independently assessed methodological quality and extracted data from each eligible study. MAIN RESULTS: We found 18 published and one unpublished trials. Trials were not sufficiently similar to allow pooling of data by statistical analyses, so this review takes a narrative form. Studies were divided into three groups based on the primary population sample; children (five studies), older people (14 studies) and the general population/mixed age group (no studies). None of the studies focusing on children demonstrated a reduction in injuries that might have been due to environmental adaptation in the home; one study reported a reduction in injuries and in hazards but the two could not be linked. Of the 14 included studies in older people, none demonstrated a reduction in injuries due to hazard reduction, although two demonstrated a reduction in falls that could be due to hazard reduction. AUTHORS' CONCLUSIONS: There is insufficient evidence to determine the effects of interventions to modify environmental home hazards. Further interventions to reduce hazards in the home should be evaluated by adequately designed randomised controlled trials measuring injury outcomes. Recruitment of large study samples to measure effect must be a major consideration for future trials.

Diagnostic accuracy of urinary cytokeratin 19 fragment for endometriosis.

Endometriosis affects up to 10% of women of reproductive age and 176 million women worldwide. The prevalence in women with infertility is between 30% and 50% but may be higher in women with pelvic pain, interstitial cystitis, or irritable bowel syndrome. Cytokeratin 19 has been suggested as a potential biomarker in urine for the diagnosis of this condition. The objective of this study was to prospectively determine the accuracy and the performance of a urinary cytokeratin 19 (uCYFRA 21-1) test for diagnosing endometriosis. Ninety-eight consecutive women who underwent laparoscopy had a urinary sample obtained before surgery and were included in the study. Endometriosis was diagnosed by laparoscopy and pathology in 64.3% (63 of 98 women). The estimates and 95% confidence intervals for sensitivity, specificity, positive and negative predictive values, and likelihood ratios were 11.1% (4.5%-21.5%), 94.3% (80.8%-99.3%), 77.7% (39.9-97.1), 37% (27-47.9), 1.94 (0.43-8.86), and 0.94 (0.84-1.06), respectively. Despite the high specificity, the uCYFRA 21-1 test has limited value for clinical practice to discriminate between women with and without endometriosis.

Perianal Crohn's disease and infliximab therapy.

INTRODUCTION: Perianal manifestations occur in almost half of patients with Crohn's disease and often respond poorly to conventional therapies. The introduction of anti-tumour necrosis factor alpha agents (e.g. infliximab) has altered the management of patients who fail first and second line medical and surgical therapies. METHODS: We performed a literature search of the PubMed database using the Medical Search Headings infliximab, perianal Crohn's disease, fistulae, cost and safety. We also performed a manual search using references from these articles, review articles and proceedings from major gastroenterology meetings. RESULTS: Use of infliximab, at a dose of 5mg/kg at intervals of 0, 2 and 6 weeks, results in significant improvement in disease in approximately 70% of patients with fistulae. Prior examination under anaesthesia with placement of non-cutting seton sutures in fistula tracks is a useful adjunct in many patients. Preliminary results show a benefit from maintenance infliximab therapy and from concomitant use of immunosuppressants such as azathioprine. No clinical or biochemical markers have been identified which predict non-response to infliximab, although its use is contraindicated in patients with strictures. Acute infusion reactions are the most common side-effect of infliximab therapy and they are usually mild. Despite initial fears, the incidence of opportunistic infection is low. There is inadequate information, at present, regarding a possible increase in incidence of lymphoma with infliximab therapy. Infliximab is expensive compared with established therapies and its use will increase the lifetime cost of treating Crohn's disease. CONCLUSION: While infliximab is a useful adjunct in selected patients, the cornerstones of management of perianal Crohn's are essentially unchanged.

Experience of the introduction of routine antibody testing in primary care and of running a trial for latent autoimmune diabetes in adults (LADA).

This brief report discusses the introduction of routine Glutamic Acid Decarboxylase Antibody (GADA) testing in primary care for newly diagnosed diabetes. GADA testing is well used and the majority of people found to be positive are initiated on insulin rapidly and progress to require a basal bolus regime.

GADA testing: the current state of knowledge.

This review considers the current knowledge and practice of GADA testing people with diabetes in Europe and the UK. Important issues are raised, including interpretation of the results and the clinical relevance of the GADA titre. Recommendations are made towards standardising GADA testing, using World Health Organization units.

A prospective evaluation of the Modified Hand Injury Severity Score in predicting return to work.

Hand injuries are the main cause of work-related disability in young adults. We have devised the Modified Hand Injury Scoring System to quantify hand, wrist and forearm injuries. This study aims to determine its value in predicting ability and time taken to return to work after such injury. Prospectively-assigned MHISS at presentation was compared with demographic, injury, employment and quality of life information 40-52months after acute hand or forearm injury. MHISS score was the only variable investigated found to predict ability to return to work. Factors not associated included age at injury, occupation, hand injury side or dominance, main earner status and compensation-seeking. Median time to return to work increased from 30 to 760days for Mild and Major MHISS categories respectively. Injury severity quantified using MHISS is an important determinant of return to work after hand or forearm injury. Only 60% of patients return to work following a Major injury and may take over a year to do so. Such information may allow the patient to make early informed personal financial and retraining decisions after their injury.

Predictors, costs and characteristics of out of area placement for people with intellectual disability and challenging behaviour.

BACKGROUND: Out of area placements for people with challenging behaviour represent an expensive and often ineffective strategy for meeting the needs of this service user group. METHODS: More than 800 agencies and service settings in a large area of South Wales were screened to identify children and adults with challenging behaviour against a number of defined operational criteria. Detailed data on identified individuals and the services they received were collected by interviewing key informants. Univariate and multivariate statistics were employed to identify predictors of out of area placement. RESULTS: In total, 1458 people were identified. Full data were available for 901 participants, 97 of whom were placed out of area. Predictors of out of area placement included behaviours resulting in physical injury and exclusion from service settings, a history of formal detention under the mental health act, the presence of mental health problems, a diagnosis of autism and higher total score on the Adaptive Behaviour Scale. Out of area placements were typically of high cost, and associated with only limited evidence of improved service quality. CONCLUSIONS: Identifying predictors for out of area placement can be used to highlight deficiencies in local services and individuals at increased risk of exclusion from local services.

Dyskinesia in Parkinson's disease treated by deep brain stimulation once electrode position was revised: case report.

Repositioning of a subthalamic nucleus deep brain stimulation lead alleviated a parkinsonian patient's dyskinesias without the need for parkinsonian medication reduction. After the initial placement and programming, the patient was doing well. During repair of a skin erosion, the lead moved ventral and the patient developed severe dyskinesias and, when the deep brain stimulation system was on, diplopia. Multiple reprogramming attempts did not alleviate these problems. The electrode was moved dorsally by about 6 mm. Intraoperatively the patient's dyskinesias stopped with no diplopia with the stimulator on. Two years after the revision the patient is doing very well.

Challenging behaviours: prevalence and topographies.

BACKGROUND: Variations in reported prevalence of challenging behaviour indicate the need for further epidemiological research to support accurate planning of future service provision. METHODS: All services providing for people with learning disabilities across seven unitary authorities, with a total population of 1.2 million, were screened to identify people with challenging behaviour. Interviews were conducted with primary carers to gain data on identified individuals' characteristics and support. Measures designed for a similar study conducted in Manchester University were incorporated to allow direct comparison with earlier findings, together with standardized tools to assess adaptive behaviour and social impairment. RESULTS: In total, 4.5 (2.5-7.5) people per 10 000 population were rated as seriously challenging, representing 10% (5.5-16.8%) of the learning disability population; the most prevalent general form was other difficult/disruptive behaviour, with non-compliance being the most prevalent topography. The majority showed multiple behaviours and multiple topographies within each general behaviour category. Also identified were substantial numbers of additional people reported as presenting challenging behaviours at lower degrees of severity. CONCLUSIONS: Prevalence rates for seriously challenging behaviours were comparable to those reported in the earlier studies, thus confirming previous findings. The prevalence of less serious challenging behaviour also has major clinical significance and emphasizes the need for enhanced understanding and skills among personnel within primary- and secondary-tier health, education and social care services, and for strengthening the capacity of community teams to provide behavioural expertise.

Preventing fractures among older people living in institutional care: a pragmatic randomised double blind placebo controlled trial of vitamin D supplementation.

INTRODUCTION: Osteoporotic fractures in older people are a major and increasing public health problem. We examined the effect of vitamin D supplementation on fracture rate in people living in sheltered accommodation. METHODS: In a pragmatic double blind randomised controlled trial of 3 years duration, we examined 3,440 people (2,624 women and 816 men) living in residential or care home. We used four-monthly oral supplementation using 100,000 IU vitamin D(2) (ergocalciferol). As a main outcome measure, we used the incidence of first fracture using an intention to treat analysis. This was a multicentre study in 314 care homes or sheltered accommodation complexes in South Wales, UK. RESULTS: The vitamin D and placebo groups had similar baseline characteristics. In intention-to-treat analysis, 205 first fractures occurred in the intervention group during a total of 2,846 person years of follow-up (7 fractures per 100 people per year of follow-up), with 218 first fractures in the control group over 2,860 person years of follow-up. The hazard ratio of 0.95 (95% confidence interval 0.79-1.15) for intervention compared to control was not statistically significant. CONCLUSION: Supplementation with four-monthly 100,000 IU of oral vitamin D(2) is not sufficient to affect fracture incidence among older people living in institutional care.

Thrombomodulin expression in colorectal carcinoma is protective and correlates with survival.

Thrombomodulin (TM) is an endothelial receptor that exhibits anticoagulant, antifibrinolytic and anti-inflammatory activity by inhibiting thrombin and cellular adhesion. In this study, the expression and significance of TM was examined in primary colorectal cancer and its prognostic implications explored. TM immunostaining was performed on formalin-fixed, paraffin-embedded tissue sections, from primary lesions of 200 patients with colorectal carcinoma. Institutional Ethical approval was granted and clinical data retrieved from patients' records. All normal colonic tissue expressed TM on endothelial cells. TM tumour cell expression was demonstrated in 53 (26.5%) cases and 147 (73.5%) showed no neoplastic cell staining. On univariate and multivariate analysis TM expression on tumour cells correlated significantly with tumour stage, differentiation, Jass score and 5 year survival. TM expression decreases as overall stage and tumour size increase (P=0.03). In all, 91% TM positive tumours were well differentiated and 85% of TM negative tumours were poorly differentiated (P<0.01). Five year survival rates of patients with positive and negative TM expression were 71 and 41%, respectively. Survival rate was poorer in those patients who were TM negative compared with those who were positive (P<0.01). A total of 101 (50.5%) of the cases were node negative. In this group, 5 year survival rates of patients with positive and negative TM expression were 87.5 and 37.8%, respectively, demonstrating a poorer survival rate for those who are node negative and TM negative at the time of surgery (P<0.001). This study demonstrates that loss of TM is a key indicator in tumour biology and prognosis.

Ankylosing spondylitis: interaction between genes, joints, age at onset, and disease expression.

OBJECTIVE: Ankylosing spondylitis (AS) is a chronic inflammatory disorder with symptom onset generally occurring in the late teens/mid-twenties. In women, a younger age at onset enhances disease susceptibility in the next generation. We examined the influence of age at symptom onset on phenotypic expression. METHODS: Patients were divided into cohorts according to age of symptom onset. The primary outcome measure was radiological progression (by Bath AS Radiology Index, BASRI). Secondary measures were disease activity (Bath AS Disease Activity Index, BASDAI), function (Bath AS Functional Index, BASFI), numbers undergoing AS related surgery, and percentage with secondary disorders. RESULTS: Age at onset had no significant effect on radiological progression (young onset vs late onset, 8.0, 8.6, respectively) disease activity (young vs late, 4.4, 4.4), need for non-hip surgical intervention (9%, 8%, respectively), or prevalence of secondary disorders (iritis, 40%, 41%; psoriasis, 20%, 19%; inflammatory bowel disease, 7.5%, 8.9%). By contrast, there was a striking increase in prevalence of total hip replacement in those with juvenile onset (18%, 8%, respectively; p < 0.001). Regardless of age at onset, spinal progression determined radiologically was greater in those with hip arthritis compared to those without (young onset hip involvement vs non-hip involvement, 9.7 (2.4), 7.2 (3.0) (p < 0.001); late onset hip involvement vs non-hip involvement, 10.1 (2.5), 7.1 (3.0), respectively]. Function deteriorates with age (young onset vs late onset, 3.7, 4.5, respectively; p < 0.01). CONCLUSION: (1) Hip disease (young or late onset) is a major prognostic marker for longterm severe disease (patients with hip disease have a spinal score increased by 2.5-3 points or 35-40% more change). (2) Hip involvement is more prevalent among patients with young age at onset. (3) Young onset patients without hip involvement do not have more severe disease. Thus, age at onset, itself, does not influence disease severity. (4) Since hip involvement and not age at onset is associated with worse outcome, patients with a young age at onset may be assumed to have an increased susceptibility load (i.e., genetic component or environmental trigger) rather than more severity genes. The lack of association between severity and age at onset implies that the determinants of susceptibility and severity are independent.