Persistent postsurgical pain is a prevalent but underacknowledged condition. The aim of this study was to assess the prevalence, sensory qualities, and postoperative determinants of persistent pain at 3 to 4years after total knee replacement (TKR) and total hip replacement (THR). Patients completed a questionnaire with included the Western Ontario and McMaster Universities Index of Osteoarthritis (WOMAC) Pain Scale, PainDetect Questionnaire, Short-Form McGill Pain Questionnaire, and questions about general health and socioeconomic status. A total of 632 TKR patients and 662 THR patients completed a questionnaire (response rate of 73%); 44% of TKR patients and 27% of THR patients reported experiencing persistent postsurgical pain of any severity, with 15% of TKR patients and 6% of THR patients reporting severe-extreme persistent pain. The persistent pain was most commonly described as aching, tender, and tiring, and only 6% of TKR patients and 1% of THR patients reported pain that was neuropathic in nature. Major depression and the number of pain problems elsewhere were found to be significant and independent postoperative determinants of persistent postsurgical pain. In conclusion, this study found that persistent postsurgical pain is common after joint replacement, although much of the pain is mild, infrequent, or an improvement on preoperative pain. The association between the number of pain problems elsewhere and the severity of persistent postsurgical pain suggests that patients with persistent postsurgical pain may have an underlying vulnerability to pain. A small percentage of patients have severe persistent pain after joint replacement, and this is associated with depression and the number of pain problems elsewhere.
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 (>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.
Objective To develop recommendations to enable successful inclusion of the patient perspective in European League Against Rheumatism (EULAR)-funded scientifi c research projects. Methods The EULAR standardised operational procedures for guideline development were followed. A systematic literature review was presented during a fi rst task force meeting, including 3 rheumatologists, 1 rheumatologist/epidemiologist, 2 allied health professionals, 2 representatives of arthritis research organisations and 7 patient representatives, resulting in 38 statements. A Delphi method was carried out to reduce and refi ne the statements and agree on a set of eight. Next, a survey among a wider group of experts, professionals and patient representatives (n=42), was completed. Feedback from this wider group was discussed at the second meeting and integrated in the fi nal wording of the recommendations. Subsequently, the level of agreement of the group of experts (n=81) was re-evaluated. Results The project resulted in a defi nition of patient research partner and agreement on a set of eight recommendations for their involvement in research projects. These recommendations provide practical guidance for organising patient participation, capturing (1) the role of patient research partners, (2) phase of involvement, (3) the recommended number, (4) recruitment, (5) selection, (6) support, (7) training and (8) acknowledgement. Conclusion Collaboration between patients and professionals in research is relatively new. Trials or effectiveness studies are not yet available. Nevertheless, it is possible to defi ne recommendations for the inclusion of patients in research following a solid expert opinion based consensus process.
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