Feasibility and Face Validity of Outcome Measures for Use in Future Studies of Polymyalgia Rheumatica: An OMERACT Study.

OBJECTIVE: To survey participants with polymyalgia rheumatica (PMR) to evaluate the face validity, acceptability, and domain match of proposed candidate outcome measures. METHODS: A structured, online, anonymous survey was disseminated by patient support groups through their networks and online forums. The candidate outcome measures comprised (1) visual analog scale (VAS) and numerical rating score (NRS) to assess pain; (2) VAS, NRS, and duration to assess stiffness; (3) the modified Health Assessment Questionnaire and Health Assessment Questionnaire Disability Index to assess physical function; and (4) C-reactive protein and erythrocyte sedimentation rate to assess inflammation. Free-text answers were analyzed using descriptive thematic analysis to determine respondents' views of the candidate instruments. RESULTS: Seventy-eight people with PMR from 6 countries (UK, France, USA, Canada, Australia, and New Zealand) participated in the survey. Most respondents agreed candidate instruments were acceptable or "good to go." Free-text analysis identified 5 themes that participants considered inadequately covered by the proposed instruments. These related to (1) the variability, context, and location of pain; (2) the variability of stiffness; (3) fatigue; (4) disability; and (5) the correlation of inflammatory marker levels and severity of symptoms, sometimes reflecting disease activity and other times not. CONCLUSION: Participants reported additional aspects of their experience that are not covered by the proposed instruments, particularly for the experience of stiffness and effect of fatigue. New patient-reported outcome measures are required to increase the relevance of results from clinical trials to patients with PMR.

"It's my own fault": Accounts and consequences of falling when living with rheumatoid arthritis.

INTRODUCTION: Rheumatoid arthritis (RA) leads to biomechanical joint changes, which increases the risk of falling. The consequence of falling may be physical injury. However, the psychological consequences, including the fear of falling, can be equally important. METHODS: Participants were recruited from a larger prospective study which explored the incidence of falls in people with RA. Purposive sampling considered age, sex, time since diagnosis and fall history. The recruitment site was a regional hospital. Data were collected from semi-structured qualitative interviews and, after each fall, brief telephone interviews. Thematic analysis methods were used to investigate the psychological and social impact of falling in people with RA. RESULTS: Twelve participants were interviewed (aged 64-85, mean 74 years; six had fallen between one and 23 times, and six had no reported falls in last 12 months). Data were supplemented with telephone notes from 287 post-fall telephone calls. Three themes were developed: (i) the falls imaginary illustrates that the fear of falling is not dependent on experience; (ii) agentic risk management reports on the ways people self-manage and display resilience when at risk of falling; (iii) the absence of the health professional explores the ways in which people reported being unsupported by healthcare services. CONCLUSION: Fear of falling when living with RA is tangible in those who have and have not fallen. This fear may limit opportunities for full participation in life. However, some people display personal resourcefulness, continuing to live purposeful lives. Understanding personal responses to falling will support the development of community interventions specific to this high-risk group.

Impact of caring for someone with a rare rheumatic condition, views from patients and informal carers-the need for cat-like vigilance.

OBJECTIVE: ANCA-associated vasculitis (AAV) is a rare multisystem disease. Modern therapeutic protocols have turned AAV from an acute, frequently fatal disease into a chronic disease requiring long-term immunosuppression. Patients must often manage substantial burdens related to chronic illness and treatment-related side effects, requiring help from informal carers. This study aimed to explore the experience of patients and of informal carers of patients with AAV about the impact of managing a rare rheumatic condition. METHODS: A qualitative approach using semi-structured interviews was used. Interviews were conducted with a purposeful sample of 18 pairs of patients with AAV and their informal carers. The interviews were used to explore the participants' experience and effects of caring. The interviews were recorded and transcribed as verbatim text and analysed using the framework technique. RESULTS: Eighteen patients (seven female; disease: 10 granulomatosis with polyangiitis; four microscopic polyangiitis; four eosinophilic granulomatosis with polyangiitis; age range 34-78 years; disease duration 1-20 years). Caregiver and patient perspectives were shared. The emerging themes were the physical and psychological impacts of the disease, the need for constant vigilance and fear of the future. CONCLUSION: Both patients and carers faced a range of challenges in managing a rare condition, including the seriousness of the illness, dealing with the emotional toll and knowing what to expect. This study offers insight into the experiences of patients and informal carers, and health-care professionals should address individuals' fears and expectations for recovery.

The prevalence of giant cell arteritis and polymyalgia rheumatica in a UK primary care population.

BACKGROUND: To update community-based prevalence values for Polymyalgia Rheumatic (PMR) and Giant Cell Arteritis (GCA) using case record review supplemented by population survey and subsequent clinical review. METHODS: Clinical data were obtained from case records of a large primary care practice in Norfolk, UK and reviewed for diagnoses of GCA and PMR. In addition postal survey was carried out to capture potentially undiagnosed cases within the practice population. Those screening positive for potential diagnoses of GCA and PMR were invited for clinical review. A cumulative prevalence estimate was subsequently calculated on those diagnosed within the GP practice and subsequently on those fulfilling the various published classification criteria sets. The date of the database lock and mail merge was March 2013. RESULTS: Through detailed systematic review of 5,159 GP case records, 21 patients had a recorded diagnosis of GCA and 117 had PMR.No new cases were identified among 2,227 completed questionnaires returned from the population survey of a sample of 4,728. The resulting cumulative prevalence estimate in those aged ≥ 55 years meeting the ACR classification criteria set for GCA was 0.25 % (95 % CI 0.11 to 0.39 %) and for five published criteria sets for PMR ranged from 0.91 to 1.53 % (95 % CI ranges 0.65 %, 1.87 %). The prevalence of both conditions was higher in women than in men and in older age groups. CONCLUSION: This study provides the first UK prevalence estimate of GCA and PMR in over 30 years and is the first to apply classification criteria sets.