Marie Gerardin1, Morgane Rousselet1,2,3, Marie-Laure Couec4, Agathe Masseau5, Marylène Guerlais1, Nicolas Authier6, Sylvie Deheul7, Anne Roussin8, Joelle Micallef9, Samira Djezzar10, Fanny Feuillet3,11, Pascale Jolliet1,3, Caroline Victorri-Vigneau1,3. 1. Service de Pharmacologie Clinique, Centre Hospitalier Universitaire de Nantes, Nantes, France. 2. Service d'Addictologie et de Psychiatrie, Centre Hospitalier Universitaire de Nantes, Nantes, France. 3. INSERM U1246 SPHERE "Methods in Patient-Centered Outcomes and Health Research", Universités de Nantes et Tours, Nantes, France. 4. Service de Pédiatrie et d'Oncologie Pédiatrique, Centre Hospitalier Universitaire de Nantes, Nantes, France. 5. Service de Médecine Interne, Centre Hospitalier Universitaire de Nantes, Nantes, France. 6. Service de Pharmacologie Médicale, Centre Hospitalier Universitaire de Clermont-Ferrand, Clermont-Ferrand, France. 7. Service de Pharmacologie, Centre Hospitalier Universitaire de Lille, Lille, France. 8. Service de Pharmacologie Médicale et Clinique, Centre Hospitalier Universitaire de Toulouse, Toulouse, France. 9. Service de Pharmacologie Clinique, Hôpital de la Timone, Assistance Publique-Hôpitaux de Marseille, Marseille, France. 10. Centre d'Evaluation et d'Information sur la Pharmacodependence-Addictovigilance de Paris, Hôpital Fernand Widal, APHP Paris, Paris, France. 11. Plateforme de Biométrie, Centre Hospitalier Universitaire de Nantes, Nantes, France.
Abstract
BACKGROUND: Sickle cell disease (SCD) induces chronic haemolytic anaemia and intermittent vaso-occlusion that results in tissue ischaemia causing acute, severe pain episodes that can lead to frequent hospitalizations. These consequences can have repercussions on family, social, school and/or professional life. Here, we present some of the results of the PHEDRE study (Pharmacodépendance Et DREpanocytose-drug dependence and sickle-cell disease), which is the largest study of patients with SCD in France. This paper intends to describe characteristics of the French SCD population. We also aimed to assess the impact of the disease on the lives of patients using objective and subjective variables. METHODS: The PHEDRE study was a national multicentric observational study. Adults, adolescents and children with a confirmed SCD diagnosis were included in the study by their referring doctor. Then, they were interviewed by phone about their socioeconomic status, about the impact of the disease on their lives and about their analgesic and psychoactive drug use. RESULTS: The study population consisted of 872 patients (28% were minors). Seventy-two percent of adults were active, and all minors were in school. Many patients presented criteria of severe SCD. Seventy-five percent were homozygous SS, 15% were double heterozygotes SC and 8% were heterozygotes Sβthal, 87% received specific treatment, 58% were hospitalized at least once for vaso-occlusive crisis in the past 12 months, and the number of analgesic drugs taken averaged 3.8. Seventy-five percent of patients reported academic or professional consequences related to their SCD, and 52% reported social consequences. CONCLUSIONS: The impact of SCD on patients' lives can be significant, nevertheless their social integration seems to be maintained. We highlighted respect of recommendations regarding analgesic treatments and only a few patients used tobacco, alcohol or cannabis. TRIAL REGISTRATION: Clinical Trials, NCT02580565; https://clinicaltrials.gov/ Registered 16 October 2015.
BACKGROUND:Sickle cell disease (SCD) induces chronic haemolytic anaemia and intermittent vaso-occlusion that results in tissue ischaemia causing acute, severe pain episodes that can lead to frequent hospitalizations. These consequences can have repercussions on family, social, school and/or professional life. Here, we present some of the results of the PHEDRE study (Pharmacodépendance Et DREpanocytose-drug dependence and sickle-cell disease), which is the largest study of patients with SCD in France. This paper intends to describe characteristics of the French SCD population. We also aimed to assess the impact of the disease on the lives of patients using objective and subjective variables. METHODS: The PHEDRE study was a national multicentric observational study. Adults, adolescents and children with a confirmed SCD diagnosis were included in the study by their referring doctor. Then, they were interviewed by phone about their socioeconomic status, about the impact of the disease on their lives and about their analgesic and psychoactive drug use. RESULTS: The study population consisted of 872 patients (28% were minors). Seventy-two percent of adults were active, and all minors were in school. Many patients presented criteria of severe SCD. Seventy-five percent were homozygous SS, 15% were double heterozygotes SC and 8% were heterozygotes Sβthal, 87% received specific treatment, 58% were hospitalized at least once for vaso-occlusive crisis in the past 12 months, and the number of analgesic drugs taken averaged 3.8. Seventy-five percent of patients reported academic or professional consequences related to their SCD, and 52% reported social consequences. CONCLUSIONS: The impact of SCD on patients' lives can be significant, nevertheless their social integration seems to be maintained. We highlighted respect of recommendations regarding analgesic treatments and only a few patients used tobacco, alcohol or cannabis. TRIAL REGISTRATION: Clinical Trials, NCT02580565; https://clinicaltrials.gov/ Registered 16 October 2015.
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