Patients’ Perspectives on the Psychological Impact of Inflammatory Arthritis and Meeting the Associated Support Needs: Open-Ended Responses in a Multi-Centre Survey

Copyright © 2016 John Wiley & Sons, Ltd. Objectives: Psychological support for inflammatory arthritis is recommended in rheumatology treatment guidelines. Previous research found that high numbers of patients would access such support but that provision is often inconsistent and inadequate. The present study explored patients’ perspectives on the nature of the psychological impact of inflammatory arthritis and how to meet the associated support needs. Methods: A cross-sectional survey was conducted, using questionnaires which included three open-ended questions about helpful and unhelpful psychological support. The questionnaires were administered to 1,080 patients at six regional rheumatology units across England, and 1,200 members of a national patient charity. Results: A total of 1,210 (53%) patients completed the questionnaire, with 779 (64%) responding to the open-ended questions: 80% female; mean age 59 years (12.6); disease duration 10 years (40%). Data were analysed using a hybrid content analysis. Four categories emerged: challenges of an altered life course (negative emotions, isolation and loneliness, a dysfunctional body, loss, strained relationships, and fears for the future); poor communication (feeling unheard, clinicians’ reluctance to address psychological issues, a lack of help to manage pain and fatigue, and struggling to ask for help); understood by others (sharing with people who have arthritis, supportive family and friends, whole team support, and understanding from clinicians); and acquiring strategies (ways of coping). Conclusions: Psychological distress was commonplace, and often attributed to fatigue and pain. In addition to peers and family, patients looked to the rheumatology team for validation and support. Further research will address the skills training needs of rheumatology teams to meet patients’ psychological support requirements

Patient preferences for psychological support in inflammatory arthritis: A multicentre survey

Objectives. Inflammatory arthritis (IA) can lead to anxiety, depression, pain and fatigue. Psychological support can improve quality of life and selfmanagement; and European and American guidelines recommend support be offered. This study examined patient views on psychological support for their IA. Methods. A questionnaire designed by researchers, patient partners and clinicians was administered to 2280 patients with IA. Results. 1210 patients responded (53%): 74% women; mean age 59 years (SD 12.7); patient global 5 (2.3); disease duration 10 (39%). Only 23% reported routinely 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 reported they would use a self-management/coping clinic (63% pain management, 60% occupational therapy, 48% peer support groups, 46% patient education, 46% psychology/counselling). Patients want support with managing the impact of pain and fatigue (82%), managing emotions (57%), work and leisure (52%), relationships (37%) and depression (34%). Preferences are for support to be delivered by the rheumatology team (nurse 74%, doctor 55%) and general practitioners (GPs) (51%). Only 6% of patients stated that social and emotional issues were not relevant. Conclusions. Demand for psychological support is high; however, less than a quarter of patients reported being asked about social and emotional issues, suggesting a gap between needs and provision. The preference is for delivery from rheumatology clinicians and GPs, and research should establish whether they have the skills and resources to meet patients' needs