Descriptive analysis of sickle cell patients living in France
| Autor: | Gerardin, Marie, Rousselet, Morgane, Couec, Marie-Laure, Masseau, Agathe, Guerlais, Marylène, Authier, Nicolas, Deheul, Sylvie, Roussin, Anne, Micallef, Joelle, Djezzar, Samira, Feuillet, Fanny, Jolliet, Pascale, Victorri-Vigneau, Caroline |
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| Přispěvatelé: | MethodS in Patients-centered outcomes and HEalth ResEarch (SPHERE), Université de Tours (UT)-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Nantes - UFR des Sciences Pharmaceutiques et Biologiques, Université de Nantes (UN)-Université de Nantes (UN), Institut de Neurosciences des Systèmes (INS), Aix Marseille Université (AMU)-Institut National de la Santé et de la Recherche Médicale (INSERM), Université de Tours-Institut National de la Santé et de la Recherche Médicale (INSERM)-Université de Nantes - UFR des Sciences Pharmaceutiques et Biologiques |
| Jazyk: | angličtina |
| Rok vydání: | 2021 |
| Předmět: |
MESH: Adolescent
MESH: Aged MESH: Humans MESH: Middle Aged MESH: Analgesics MESH: Psychotropic Drugs [SDV]Life Sciences [q-bio] MESH: Child Preschool MESH: Quality of Life MESH: Adult MESH: Pain Measurement MESH: Male MESH: France MESH: Cross-Sectional Studies MESH: Drug Prescriptions MESH: Young Adult MESH: Severity of Illness Index MESH: Child MESH: Pain MESH: Anemia Sickle Cell MESH: Female MESH: Pain Management MESH: Treatment Outcome |
| Zdroj: | PLoS ONE PLoS ONE, Public Library of Science, 2021, 16 (3), pp.e0248649. ⟨10.1371/journal.pone.0248649⟩ PLoS ONE, 2021, 16 (3), pp.e0248649. ⟨10.1371/journal.pone.0248649⟩ |
| ISSN: | 1932-6203 |
| DOI: | 10.1371/journal.pone.0248649⟩ |
| Popis: | International audience; 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. |
| Databáze: | OpenAIRE |
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