Implementing a patient-led service for chronic conditions.

Many chronic conditions with fluctuating levels of disease activity are traditionally managed by lifelong regular medical reviews. However, this means appointments do not always coincide with patient need, while the volume of reviews makes it difficult to respond quickly to requests for help. Research in rheumatoid arthritis suggests that hospital-initiated reviews can be replaced by patient-initiated reviews, supported by nurse-led initiatives.

Patients' perceptions of fatigue in rheumatoid arthritis: overwhelming, uncontrollable, ignored.

OBJECTIVE: Fatigue is commonly reported by patients with rheumatoid arthritis (RA) but is rarely a treatment target. The aim of this study was to explore the concept of fatigue as experienced by patients with RA. METHODS: Fifteen patients with RA and fatigue (> or =7 on a 10-cm visual analog scale) were individually interviewed and asked about the description, cause, consequence, and management of fatigue. Transcripts were systematically analyzed by 2 researchers independently, relevant phrases were coded, and earlier transcripts were checked for the emerging codes. A random sample of analyses were independently reviewed. A total of 191 codes arising from the data were grouped into 46 categories and overarching themes. RESULTS: Vivid descriptions reflect 2 types of fatigue: severe weariness and dramatic overwhelming fatigue. RA fatigue is different from normal tiredness because it is extreme, often not earned, and unresolving. Participants described physical, cognitive, and emotional components and attributed fatigue to inflammation, working the joints harder, and unrefreshing sleep. Participants described far-reaching effects on physical activities, emotions, relationships, and social and family roles. Participants used self-management strategies but with limited success. Most did not discuss fatigue with clinicians but when they did, they felt it was dismissed. Participants held negative views on the management of fatigue. CONCLUSION: The data show that RA fatigue is important, intrusive, and overwhelming, and patients struggle to manage it alone. These data on the complexity of fatigue experiences will help clinicians design measures, interventions, and self-managment guidance.