Background Primary Sjögren’s syndrome (pSS) is one of the most common systemic autoimmune disorders and leads to an impaired health related quality of life. However, treatment mainly focuses on the management of physical manifestations. Little is known about the lived experiences of people with pSS, including the impact on people’s life, functioning and their social relationships. Objectives To explore the perspectives of people with pSS from different European countries with various cultural backgrounds in order to achieve a broad understanding of concepts that are important and meaningful to people with pSS. This study is a part of a project which aims to evaluate the coverage of the patient perspectives by patient reported outcome measures in pSS, which is funded by the Austrian Association of Rheumatology. Methods A multicentre focus group study was performed in five European countries, namely Austria, Germany, Italy, Romania and Sweden. Patients were recruited from the outpatient clinics of the local centres. Focus groups were chaired by a trained moderator and followed an interview guide which included questions about impairments and limitations in body structures, body functions, activities and participation as well as contextual factors and resources, such as coping strategies. Focus groups were audiotaped and transcribed. We conducted a content-analysis of each focus group and subsequently combined the extracted concepts from each country, using the International Classification of Functioning, Disability and Health as a frame of reference. Results A total of 12 focus groups was conducted in seven participating centres in five countries. Fifty people (48 women; 96%) with pSS participated in the focus groups (ranging from two to four groups per country). All focus groups had a total duration of 1030 min and resulted in 252 pages of transcript. From qualitative analysis we derived concepts meaningful to people with pSS from all countries, especially those concepts that were linked to a physical dimension. However, we identified differences in the description of these experiences in daily life, for example for pain-concerning sensations or for the impact on social relationships. Furthermore, the attitudes towards the treatment and towards the disease differed between the participants. People with pSS had various coping strategies, such as gaining more knowledge about the disease or utilising non-pharmacological treatment. Conclusions This is the first multicentre qualitative European study which investigated the patient perspectives in pSS with a cross-cultural understanding. Clinicans, health professionals and researchers need to know about the perspectives, experiences and needs of people with pSS in order to ensure a comprehensive treatment. Disclosure of Interest None declared

Background: Workforce requirement studies should be conducted in order to ensure the right number of people with the right skills, in the right place at the right time to deliver organizational objectives. Objectives: As part of the EULAR project to develop points to consider for the conduction of workforce studies in rheumatology, we reviewed the literature on workforce prediction with the aim to develop a workforce prediction quality appraisal tool and apply it to existing studies in rheumatology. Methods: Two literature searches were performed in Ovid MEDLINE, EMBASE, CINAHL, Cochrane Library and the grey literature comprising: (1) an update of a previous systematic literature review (SLR) of workforce prediction studies in rheumatology[1] and (2) a hierarchical SLR of workforce prediction studies in other medical fields. We extracted data on type of model used, details on need, demand and supply factors considered in the model, and other relevant aspects such as regional heterogeneity or uncertainty analyses. Based on the results, key general as well as specific need/demand, and supply factors for workforce calculation in rheumatology were identified and each factor was assigned a quality level (low, moderate, high). The quality appraisal tool was applied to the existing workforce modeling studies in rheumatology. Results: Data was extracted from 14 original workforce prediction studies in rheumatology and 10 SLRs in other fields. Studies used a variety of prediction models based on a heterogeneous set of need and/or demand and/or supply factors. While only a few studies attempted to empirically validate the prediction quality of the model (n=3), the consensus was that an integrated model including all these factors is expected to have the highest validity. Based on the different factors considered in existing studies, our quality appraisal tool included the three groups of factors: general factors (e.g. type of the model, stakeholder involvement), need/demand factors (e.g. scope of diseases covered by rheumatologists, morbidity, demography) and supply factors (e.g. time dedicated to clinical work, entry to profession, demographic composition of workforce) (table 1). The majority of studies scored low or moderate on most of the factors. Conclusions: The existing evidence on workforce prediction in rheumatology and other fields is scarce, heterogeneous and of low or moderate quality. The workforce prediction quality appraisal tool will enable future evaluation of workforce prediction studies. This review informs the EULAR points to consider for the conduction of workforce requirement studies in rheumatology. Reference 1. Dejaco C, et al. Arthritis Care Res (Hoboken)2016. Disclosure of Interest: None declared

Background Patients with primary Sjögren Syndrome (PSS) are affected by glandular and extraglandular manifestations leading to physical and psychological impairment. To what extent these factors affect the health related quality of life (HRQL) of these patients is largely unexplored. Disease activity scores for PSS have been developed but there is no disease-specific HRQL questionnaire available so far. Objectives To develop a questionnaire for the assessment of HRQL in PSS. Methods In a previous qualitative study, concepts related to HRQL in PSS were identified by focus-group interviews with PSS patients. Based on these concepts, a questionnaire (PSS-QoL) was developed focusing on two main topics: physical (pain and dryness) and psychosocial dimension. The first draft of this questionnaire was evaluated by semi-structured interviews with PSS patients (n=6) and rheumatologists (n=4). Based on their feedback, a revised questionnaire was constructed and re-evaluated by the patients and physicians. Subsequently, psychometric testing of PSS-QoL was performed in 75 PSS patients of the outpatient clinic of the Medical University Graz. For testing of internal consistency Crohnbach9s α was used. Convergent construct validity was tested by correlating the scores with the ESSPRI and the EQ-5D. Reliability was examined by asking patients who considered themselves to be in a stable disease to complete the questionnaire 1–2 weeks apart. In addition, an English version of PSS-QoL was was developed using a standard methodology for translation. Results Out of the 75 PSS patients, 91% were female, disease duration was 4.8±4.08 years and age of patients was 58.5±12.5 years.The internal consistency of the PSS-QoL showed a Crohnbach9s α of 0.892 and we found a moderate correlation of the PSS-QoL with the ESSPRI (Corrcoeff=0.625) and the EQ-5D (EQ5D-pain/discomfort; corrcoeff=0.531). A second assessment was performed after 1–2 weeks in 21 patients with stable disease. The ICC for PSS-QoL was 0.958 (95% CI 0.926 to 0.981). In comparison, the ICC for EQ-5D in this population was 0.854 (95% CI 0.735 to 0.933). Subsequently, the final German version of PSS-QoL was translated forward and back into English by native speakers. Conclusions A questionnaire to assess the HRQL in PSS patients has been developed and tested for its psychometric properties. The PSS-QoL should allow for a better and more comprehensive assessment on patients9 HRQL in PSS. Multicentre studies for further validation are needed. Disclosure of Interest None declared

Background Patients with primary Sjögren Syndrome (PSS) are affected by glandular and extraglandular manifestations leading to physical and mental impairment. How these factors affect the health related quality of life (HRQL) of these patients is largely unexplored. Objectives This qualitative study was conducted to investigate patients9 perspectives and needs influencing HRQL in PSS. Methods We recruited 20 consecutive PSS patients fulfilling the American-European consensus classification criteria out of the PSS cohort of the Medical University Graz, Austria. A total of 6 focus group sessions were performed. A discussion guide with four open-ended questions was developed containing all elementary components of HRQL (physical, mental, social, daily life). All interviews were audio-recorded and transcribed verbatim. A modified meaning condensation procedure was used to analyse the data. Results All patients were female, the mean age was 61 (SD ±8) years and mean disease duration was 5 (±2) years. The focus group sessions took on average 58 ±13 minutes. The number of patients in each group ranged from three to four. The interview analysis resulted in 484 meaning units, 254 subconcepts and 87 concepts. The identified concepts were grouped into three dimensions: physical dimension, psychological & emotional challenges and social life & daily living. An inter-dependency of the three dimensions was identified. The concepts most commonly reported belonged to the physical dimension: pain, dryness and complaints related to these two symptoms. Patients frequently mentioned consequences of dryness including recurrent inflammation of eyes and ears, loss of sense of smell and taste, sleeping disturbances and the inability to eat and chew. In the dimension psychological & emotional challenges, the most frequently mentioned concepts were “being worried about the future”, “a long symptom to diagnosis lag” and “the feeling of being an encumbrance for their families”. Concepts like dependency on relatives in daily life, difficulties at work and financial burden were classified within the dimension of social life & daily living. Conclusions We found that three interrelated dimensions (physical dimension, psychological & emotional challenges and social life & daily living) best reflected patients9 experiences and feelings related to PSS. HRQL in PSS patients was influenced not only by dryness rather psychological and social burden clearly impacted the patients. Disclosure of Interest None declared

Quality of life (QoL) is significantly worse in people with systemic lupus erythematosus (SLE) than in general population due to the different characteristics of the complex disease. QoL can be seen as an indicator for the satisfaction of individuals with their functioning in daily life and represents the perception of a person9s well-being in physical, mental and social domains of life. OMERACT recommends assessing QoL for people with SLE, complementary to disease activity, adverse events and the damage to the organs. In outcome measurement, the use of both generic and disease-specific measures are recommended for persons with SLE. Patient reported outcome measures could be used for persons with rheumatic conditions to enable the inclusion of the patient perspective and to increase the efficacy and effectiveness of health care. However, it is unclear whether patient reported outcome measures on QoL cover the perspectives of people with SLE or not. A suitable approach for the exploration of the patient perspective is a triangulation of qualitative data sets. It can thereby be seen as a chance to increase the confidence of existing as wells as of new data material and could support the identification of “core” concepts which are meaningful to people with SLE. These “core” concepts could be used to explore whether disease-specific QoL-PROMs cover the patient perspective of the target group or not, using the International Classification of Functioning, Disease and Health (ICF) as a frame of reference. A high level of coverage could support health professionals in their choice of QoL-PROMs. Disclosure of Interest None declared DOI 10.1136/annrheumdis-2014-eular.6148