preference was for psychological support to be delivered by the rheumatology ... support services at any time. Conclusion: ... from Arthritis Research UK. All other ...
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Methods: A questionnaire was designed by researchers, patient partners and clinicians to collect patients’ views on, and preferences for, psychological support provision for their IA. Local team members handed 1080 questionnaires to patients attending outpatient appointments at six regional rheumatology units across England. A national patient charity posted 1200 surveys to patients randomly selected from their membership database. Surveys were completed anonymously and returned directly to the research team. Results: 1210 patients responded (53%): 74% female; mean age 59 years (12.7); patient global 5 (2.3); disease duration < 5 years (41%), 5–10 (20%), >10 (39%). Only 23% of patients reported being asked about social and emotional issues by a rheumatology professional, but 46% would like the opportunity to discuss psychological impact. If offered, 66 % of patients would use a self-management/coping clinic (63% pain management; 60% occupational therapy; 48% peer support groups; 46% patient education; 46% psychology/counselling). The preference was for psychological support to be delivered by the rheumatology team (nurse, 74%; doctor, 55%) and GP (51%). Other preferred sources were family and friends (49%; 35%), other people with arthritis and patient support groups (37%; 33%), written/online information (31%), psychologist/counsellor (29%), and occupational therapist (27%). 3% would prefer not to receive any support. The preferred mode of delivery was face-to-face (80%), compared with telephone (14%) and email/online (8%). Patients want support with the impact of pain and fatigue (82%); and managing resulting problems with emotions (57%); work and leisure (52%); relationships (37%); and depression (34%). Support might include help with relaxation techniques (42%) and talking to others with arthritis (36%). Only 6% of participants stated that social and emotional issues were not relevant. Preferred timing for psychological support was whenever needed (68%), within 6 months of diagnosis (51%) and during a flare (49%); only 4% would not use psychological support services at any time. Conclusion: Demand is high for psychological support to manage the impact of IA across the disease trajectory; however, few patients reported being asked about social and emotional issues, suggesting a gap between patients’ needs and current provision. The preference for delivery from rheumatology clinicians and GPs compared with psychologists fits with a stepped approach to care, in which the usual team address less complex issues and the psychology specialist is reserved for those with more distress. Data are now needed on whether rheumatology teams have the skills and resources to meet patients’ needs. Disclosure statement: E.D. has received grants/research support from Arthritis Research UK. All other authors have declared no conflicts of interest. 55. ORCHID: CLINICIAN-LED HEALTH INFORMATICS Ira Pande1, Ian Gaywood1, Tadeusz Jones1 and John Chelsom2 Department of Rheumatology, Nottingham University Hospitals NHS Trust, Nottingham, 2Department of Health Informatics, City University, London, UK 1
Background: Electronic health records will bring unprecedented opportunities to create very large datasets from routinely collected clinical data. The ability to exploit their potential value for research, audit and other secondary purposes depends on organizing those data in ways which allow sharing, aggregation and complex searching. This requires, above all, clinicians’ insights into how data should be collected, displayed, organized and analysed. Aims: To develop a clinician-led health informatics solution for use in routine clinical care and for secondary purposes including research, audit and registries. Methods: Practising rheumatologists (IG and IP) identified a complex data set which captured their diagnostic repertoire and the elements of their clinical practice. These data items were organized into an ontology and represented as a series of hierarchies. Core data sets were designed to capture additional detail, particularly in relation to disease phenotypes. The full model is deployed using an XML-based open source EHR platform, cityEHR. The deployed product, ORCHID (Ontological Research and Clinical Hierarchically Indexed Database) incorporates generic and specialty specific data dictionaries, custom forms for data collection and display including a wide range of disease indices and PROMS, image maps (interactive data collection tools), a bespoke search engine and a configurable dashboard. Extensive use of messaged data, default values, automated checking for numerical data and calculated fields will ensure that data can be entered easily and with minimum risk of error. All ORCHID information models share consistent rules of construction which ensure that different specialty models can be merged without loss or distortion of data. Despite the complexity of the model, the tools used to create and maintain it are simple spreadsheets and graphing tools. Data sets in ORCHID are specified in a formal, yet open, representation that conforms to accepted international standards for the representation of clinical data (ISO-13606 and HL7 CDA).
Results: ORCHID is an example of a complex health informatics solution developed through the collaboration of clinicians, who invented the information model and defined its clinical content, and academic IT experts who created and configured the open source platform. As a clinical tool, it mirrors the data flow in routine care whilst allowing data captured only once to be reused for many secondary purposes. An ORCHID patient record will therefore contain an accurate diagnosis, detailed phenotype, treatment and outcome data allowing cohort assembly at any desired level of detail. Conclusion: The ORCHID project demonstrates that clinician-led development of health informatics solutions is feasible and can be achieved using open source products. Placing clinical expertise at the heart of the development process is likely to generate products which best meet the needs of health professionals and ensure better clinical engagement in the transition to EHRs. Disclosure statement: The authors have declared no conflicts of interest. 56. GIANT CELL ARTERITIS: IMPROVING THE DIAGNOSTIC PATHWAY Malvika Gulati1, Christopher Wincup1, Varo Kirthi1 and Shahir Hamdulay1 1 Department of Rheumatology, Northwick Park Hospital, Middlesex, UK Background: GCA is the most common vasculitis. The disease involves large and medium sized arteries, frequently affecting the temporal arteries (TA). GCA occurs in 2.2 per 10000 patient years in the UK; it is rare in those under 50 years. Early diagnosis and treatment can prevent significant morbidity, particularly blindness. Gold standard diagnosis is made histologically by temporal artery biopsy (TAB). A retrospective study has shown that one-third of biopsies are positive for GCA. The BSR recommend urgent referral for TAB and EULAR suggest that this should be performed within 14 days. The presence of a positive biopsy provides diagnostic certainty in patients who fail to respond to prednisolone and may require second line therapy. Methods: This was a retrospective analysis conducted in two consecutive cohorts (Jan 2007–Sept 2009, Jan 2010–March 2012) in order to audit the improvement in service after the introduction of a TAB referral pathway. This pathway can be accessed through our Trust intranet. Patients were identified through coding for Giant Cell Arteritis or Temporal Arteritis. Data were collected through our results system (ICE), discharge summaries (EDC) and clinic letters (GCIS). The parameters of interest were age, gender, date of referral and date of biopsy. The temporal artery biopsies were performed by the Vascular Surgery team at Northwick Park Hospital. Results: As shown in Table 1, during the 2007–09 period, 87% of procedures were performed within 14 days. Three patients waited 5–8 weeks for TAB. In 2010–12, all biopsies were performed within 14 days. Conclusion: After the introduction of the TAB pathway, our compliance with international guidelines increased to 100%. Our rate for positive biopsy (26–30%) is similar to reported levels elsewhere (28%). There are differences in the characteristics of the two cohorts. We can speculate that the reduction in cases of suspected GCA may be due to increased referrals to other sites. Data were collected in the same way for both audits with no change in coding. Our site now performs all TA biopsies within the recommended time period. We will be adding the referral pathway to our ICE requesting system to enhance ease of access. 56 TABLE 1. Patients undergoing temporal artery biopsy before (Cohort 1) and after (Cohort 2) introduction of the pathway
Number of patients Mean age M: F (F%) Median time to biopsy Biopsy within 14 days, % Biopsy positive for GCA, %
Cohort 1 (Jan 2007–Sept 2009)
Cohort 2 (Jan 2010– March 2012)
54 73.3 18M: 36F (66.67) 5 days (0–56) 87 26
21 73.3 4M: 28F (87.5) 5 days (0–13) 100 30
Disclosure statement: The authors have declared no conflicts of interest. 57. DEVELOPMENT AND VALIDATION OF A MUSCULOSKELETAL PATIENT REPORTED OUTCOME MEASURE Jonathan C. Hill1, Elaine Thomas1, Susan Hill1, Nadine E. Foster1, Yvonne Rimmer1, Julie Shufflebotham1, Carol Doyle1, Treena Larkin1 and Danielle van der Windt1 1 Arthritis Research UK Primary Care Centre, Keele University, Stoke, UK
