Descriptive analysis of sickle cell patients living in France: The PHEDRE cross-sectional study.
Adolescent
Adult
Aged
Analgesics
/ therapeutic use
Anemia, Sickle Cell
/ complications
Child
Child, Preschool
Cross-Sectional Studies
Drug Prescriptions
/ statistics & numerical data
Female
France
/ epidemiology
Humans
Male
Middle Aged
Pain
/ diagnosis
Pain Management
/ methods
Pain Measurement
Psychotropic Drugs
/ therapeutic use
Quality of Life
Severity of Illness Index
Treatment Outcome
Young Adult
Journal
PloS one
ISSN: 1932-6203
Titre abrégé: PLoS One
Pays: United States
ID NLM: 101285081
Informations de publication
Date de publication:
2021
2021
Historique:
received:
12
10
2020
accepted:
02
03
2021
entrez:
18
3
2021
pubmed:
19
3
2021
medline:
13
10
2021
Statut:
epublish
Résumé
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. 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. 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. 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. Clinical Trials, NCT02580565; https://clinicaltrials.gov/ Registered 16 October 2015.
Sections du résumé
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.
Identifiants
pubmed: 33735176
doi: 10.1371/journal.pone.0248649
pii: PONE-D-20-32036
pmc: PMC7971579
doi:
Substances chimiques
Analgesics
0
Psychotropic Drugs
0
Banques de données
ClinicalTrials.gov
['NCT02580565']
Types de publication
Journal Article
Observational Study
Research Support, Non-U.S. Gov't
Langues
eng
Sous-ensembles de citation
IM
Pagination
e0248649Déclaration de conflit d'intérêts
The authors have declared that no competing interests exist.
Références
Qual Life Res. 2001;10(4):347-57
pubmed: 11763247
Pediatr Blood Cancer. 2018 Jul;65(7):e27027
pubmed: 29512881
Br J Haematol. 2005 Oct;131(1):123-8
pubmed: 16173972
Br J Haematol. 2005 Jun;129(6):723-9
pubmed: 15952997
Rev Bras Enferm. 2018 Jan-Feb;71(1):195-205
pubmed: 29324963
Int J Environ Res Public Health. 2019 May 10;16(9):
pubmed: 31083436
Cold Spring Harb Perspect Med. 2013 Oct 01;3(10):a011783
pubmed: 23813607
Sao Paulo Med J. 2015 Sep-Oct;133(5):421-7
pubmed: 26648431
Paediatr Respir Rev. 2014 Mar;15(1):4-12
pubmed: 24361300
Health Qual Life Outcomes. 2007 Jan 03;5:2
pubmed: 17201923
BMC Psychiatry. 2014 Jul 21;14:207
pubmed: 25047658
Int J Mol Sci. 2018 Feb 28;19(3):
pubmed: 29495591
Health Qual Life Outcomes. 2010 Oct 26;8:121
pubmed: 20977722
Health Qual Life Outcomes. 2019 Apr 29;17(1):74
pubmed: 31036017
Orphanet J Rare Dis. 2019 May 30;14(1):120
pubmed: 31146777
Hematology. 2019 Dec;24(1):189-198
pubmed: 30479187
Dis Mon. 2018 Jun;64(6):283-289
pubmed: 29395106
J Pediatr Health Care. 2015 Sep-Oct;29(5):424-34
pubmed: 25771820
J Pediatr Hematol Oncol. 2018 Mar;40(2):116-121
pubmed: 29324574
Ir J Med Sci. 2019 Aug;188(3):921-923
pubmed: 30554310
Arch Dis Child. 2018 Dec;103(12):1104-1109
pubmed: 30077973
Health Qual Life Outcomes. 2018 Sep 10;16(1):176
pubmed: 30200992
Saudi Med J. 2019 Jan;40(1):59-65
pubmed: 30617382
J Health Care Poor Underserved. 2018;29(2):814-829
pubmed: 29805142
J Pain. 2017 May;18(5):490-498
pubmed: 28065813
Lancet. 2013 Jan 12;381(9861):142-51
pubmed: 23103089
Niger Med J. 2015 May-Jun;56(3):204-7
pubmed: 26229230
BMC Psychiatry. 2015 Nov 14;15:281
pubmed: 26573686
Life Sci. 2018 Oct 1;210:96-105
pubmed: 30171881
J Pain Symptom Manage. 2015 Mar;49(3):539-47
pubmed: 25057985
Clin J Pain. 2013 Jan;29(1):60-3
pubmed: 22751027
Rev Paul Pediatr. 2018 Oct-Dec;36(4):491-499
pubmed: 30540112
J Pediatr Oncol Nurs. 2015 Jan-Feb;32(1):5-20
pubmed: 25416521
Pediatr Nurs. 2016 May-Jun;42(3):113-9, 144
pubmed: 27468512
Rev Med Interne. 2015 May 11;36(5 Suppl 1):5S3-84
pubmed: 26007619
Lancet. 2010 Dec 11;376(9757):2018-31
pubmed: 21131035
N Engl J Med. 1995 May 18;332(20):1317-22
pubmed: 7715639
Blood. 2010 Jun 3;115(22):4331-6
pubmed: 20233970
Health Psychol. 2004 May;23(3):267-74
pubmed: 15099167
Int J Nurs Stud. 2018 Apr;80:20-28
pubmed: 29353708
Br J Health Psychol. 2002 Sep;7(Part 3):345-363
pubmed: 12614505
BMJ Open. 2017 Mar 29;7(3):e012665
pubmed: 28360235