Background: Qualitative studies are lacking in Psoriatic Arthritis (PsA), to increase the knowledge of the patient’s perspective in this disease. The PsA impact of disease (PsAID) project is a EULAR initiative to elaborate a composite index reflecting the impact of PsA based on the patients’ perception. The objective of this first step was to identify areas of health (domains) perceived most important for patients, that would be candidates for inclusion in such a composite index. Methods: Eleven patients (6 men, 5 women) from 11 European countries identified during a 2-hour focus group meeting, 16 domains or areas of health important for the patient. In a subsequent survey, 139 patients (10 per country) ranked by decreasing importance the 16 domains of health and gave a priority rating to those domains they found to be of priority. Results were analysed as mean rank and percentage patients giving a high rank (within the first half of ranks i.e. rank 8 or less) and giving priority, to each domain. Results: The 16 domains selected by patients as reflecting impact of RA are in the Table and comprise physical domains (N=4), psychological domains (N=7), social/societal domains (N=2) and mixed/other domains (N=3). In the ranking survey, physical domains ware rated as important; foremost was pain clearly as the first domain, and fatigue, rated as a priority by 43.4% of participants. Psychological aspects were also considered important; foremost were anxiety and coping. Among social aspects, work and leisure activities obtained high priority. Discrimination and sexual life were considered the least important domains in this study. Conclusion: This study gives insights into the patient’s perspective in PsA and brings to light the importance of fatigue, but also of several previously under-estimated psychological aspects in PsA. This will form the basis of the development of a composite patient-reported outcome measure to better assess the patient’s perspective in PsA.
Patient-Perceived Impact of Psoriatic Arthritis Is Due to Pain and Fatigue, but Also to Psychological Aspects - the Psa Impact of Disease Study / L., Gossec; M., De Wit; A., Balanescu; P. V., Balint; G., Bekes; J., Braun; J. D., Canete; L., Carton; A., Dinte; K. L., De Vlam; T., Heiberg; P., Helliwell; U., Kalyoncu; U., Kiltz; T., Luger; M., Maccarone; R. H., Mullan; D., O'Sullivan; K., Otsa; A., Parkinson; A. S., Lombarte; Scrivo, Rossana; J., Smolen; T. A., Stamm; T. K., Kvien. - In: ARTHRITIS AND RHEUMATISM. - ISSN 0004-3591. - STAMPA. - 63:S(2011), pp. S507-S508. (Intervento presentato al convegno 75th Annual Scientific Meeting of the American-College-of-Rheumatology/46th Annual Scientific Meeting of the Association-of-Rheumatology-Health-Professionals tenutosi a Chicago, IL nel NOV 04-09, 2011).
Patient-Perceived Impact of Psoriatic Arthritis Is Due to Pain and Fatigue, but Also to Psychological Aspects - the Psa Impact of Disease Study
SCRIVO, Rossana;
2011
Abstract
Background: Qualitative studies are lacking in Psoriatic Arthritis (PsA), to increase the knowledge of the patient’s perspective in this disease. The PsA impact of disease (PsAID) project is a EULAR initiative to elaborate a composite index reflecting the impact of PsA based on the patients’ perception. The objective of this first step was to identify areas of health (domains) perceived most important for patients, that would be candidates for inclusion in such a composite index. Methods: Eleven patients (6 men, 5 women) from 11 European countries identified during a 2-hour focus group meeting, 16 domains or areas of health important for the patient. In a subsequent survey, 139 patients (10 per country) ranked by decreasing importance the 16 domains of health and gave a priority rating to those domains they found to be of priority. Results were analysed as mean rank and percentage patients giving a high rank (within the first half of ranks i.e. rank 8 or less) and giving priority, to each domain. Results: The 16 domains selected by patients as reflecting impact of RA are in the Table and comprise physical domains (N=4), psychological domains (N=7), social/societal domains (N=2) and mixed/other domains (N=3). In the ranking survey, physical domains ware rated as important; foremost was pain clearly as the first domain, and fatigue, rated as a priority by 43.4% of participants. Psychological aspects were also considered important; foremost were anxiety and coping. Among social aspects, work and leisure activities obtained high priority. Discrimination and sexual life were considered the least important domains in this study. Conclusion: This study gives insights into the patient’s perspective in PsA and brings to light the importance of fatigue, but also of several previously under-estimated psychological aspects in PsA. This will form the basis of the development of a composite patient-reported outcome measure to better assess the patient’s perspective in PsA.I documenti in IRIS sono protetti da copyright e tutti i diritti sono riservati, salvo diversa indicazione.
