Pain rate and social circumstances rather than cumulative organ damage determine the quality of life in adults with sickle cell disease.
Résumé
Background: Due to the significant morbidity associated with sickle cell disease (SCD) sickle cell patients have a reduced quality of life (QoL). Even though pain is considered an important determinant of QoL in sickle cell patients, factors such as chronic organ damage and socioeconomic circumstances may also be important. Therefore we determined the contribution of chronic organ damage and sickle cell related complications to QoL and also analysed the effect of vaso-occlusive crises and socio-economic circumstances on QoL in our patients. Methods: Consecutive adult sickle cell patients were included. QoL was represented in a physical component scale (PCS) and a mental component scale (MCS) and was assessed with SF-36 forms. We studied these QoL scores in relation to SCD severity (organ damage and pain rate) and socioeconomic factors (patients occupation and educational level). Results: Higher pain rates were related to lower QoL scores. Pain rate was significantly associated with MCS but not with the PCS. Both occupation and the level of education were significantly related to PCS while no relation with MCS or pain rate was found. Thirty-five percent patients were unemployed as compared to 6% of the general population and 16% of immigrants without SCD. Neither genotype nor the presence of chronic organ damage were significantly related to QoL. Conclusion: Sickle cell patients in Amsterdam, the Netherlands, have a significantly reduced QoL mainly determined by pain rate, occupation and educational level. Chronic organ damage, although a major factor determining life expectancy in SCD, was not a determinant of QoL.
Origine : Fichiers produits par l'(les) auteur(s)
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