Predictors of health-related quality of life in a large cohort of adult patients living with sickle cell disease in France: the DREPAtient study.


Journal

Frontiers in public health
ISSN: 2296-2565
Titre abrégé: Front Public Health
Pays: Switzerland
ID NLM: 101616579

Informations de publication

Date de publication:
2024
Historique:
received: 22 01 2024
accepted: 22 04 2024
medline: 4 6 2024
pubmed: 4 6 2024
entrez: 4 6 2024
Statut: epublish

Résumé

Sickle cell disease (SCD) is an inherited autosomal recessive disorder exhibiting a range of symptoms and acute and/or chronic complications that affect the quality of life. This study aimed to assess health-related quality of life (HRQoL) and to identify the associated factors in adult patients with SCD in France. DREPAtient is a cross-sectional, multicenter study conducted from June 2020 to April 2021 in France and in certain French overseas territories where SCD is highly prevalent. Sociodemographic and clinical data were collected online. HRQoL was assessed by the French version of the 36-Item Short Form Survey (SF-36) questionnaire. HRQoL determinants were identified using multivariable linear regression analysis. In total, 570 participants were included, mostly women (68.9%), with a mean age of 33.3 (±10.7) years. The highest mean score HRQoL was found in the Physical functioning domain (67.5 ± 21.8) and the lowest mean score in the General Health perception domain (37.7 ± 20.3). The mean score of the physical composite (PCS) and mental composite (MCS) of SF-36 summary scores was 40.6 ± 8.9 and 45.3 ± 9.8, respectively. Participants receiving oxygen therapy ( Adults with major SCD reported poor physical and mental HRQoL scores. Hospitalization for VOC/ACS, chronic complications, use of painkillers, perceived financial situation, and support from relatives are important predictors of HRQoL in SCD patients. Interventions to improve HRQoL outcomes SCD should be considered.

Sections du résumé

Background UNASSIGNED
Sickle cell disease (SCD) is an inherited autosomal recessive disorder exhibiting a range of symptoms and acute and/or chronic complications that affect the quality of life. This study aimed to assess health-related quality of life (HRQoL) and to identify the associated factors in adult patients with SCD in France.
Methods UNASSIGNED
DREPAtient is a cross-sectional, multicenter study conducted from June 2020 to April 2021 in France and in certain French overseas territories where SCD is highly prevalent. Sociodemographic and clinical data were collected online. HRQoL was assessed by the French version of the 36-Item Short Form Survey (SF-36) questionnaire. HRQoL determinants were identified using multivariable linear regression analysis.
Results UNASSIGNED
In total, 570 participants were included, mostly women (68.9%), with a mean age of 33.3 (±10.7) years. The highest mean score HRQoL was found in the Physical functioning domain (67.5 ± 21.8) and the lowest mean score in the General Health perception domain (37.7 ± 20.3). The mean score of the physical composite (PCS) and mental composite (MCS) of SF-36 summary scores was 40.6 ± 8.9 and 45.3 ± 9.8, respectively. Participants receiving oxygen therapy (
Conclusion UNASSIGNED
Adults with major SCD reported poor physical and mental HRQoL scores. Hospitalization for VOC/ACS, chronic complications, use of painkillers, perceived financial situation, and support from relatives are important predictors of HRQoL in SCD patients. Interventions to improve HRQoL outcomes SCD should be considered.

Identifiants

pubmed: 38832226
doi: 10.3389/fpubh.2024.1374805
pmc: PMC11144927
doi:

Types de publication

Journal Article Multicenter Study

Langues

eng

Sous-ensembles de citation

IM

Pagination

1374805

Investigateurs

Marieke Podevin (M)
Gaëlle Thomas (G)
Olivier Chassany (O)
Issifou Yaya (I)
Lisa Yombo-Kokule (L)
Frédéric Galactéros (F)
Damien Oudin Doglioni (DO)
Odièvre-Montanié Marie-Hélène (OM)
Benjamin Derbez (B)
Christian Godart (C)
Maryannick Lepetit (M)
Tania Cassubie-Mercier (T)
Tania Cassubie-Mercier (T)
Sonia Pavan (S)
Patricia Aguilar-Martinez (P)
Jean-Benoït Arlet (JB)
Giovanna Cannas (G)
Abdourahim Chamouine (A)
Maryse Etienne-Julan (M)
Corinne Guitton (C)
Sylvain Le Jeune (S)
Gylna Loko (G)
Corinne Pondarre (C)

Informations de copyright

Copyright © 2024 Yaya, Pourageaud, Derbez, Odièvre, Oudin Doglioni, Podevin, Thomas, Yombo-Kokule, Godart, Lepetit, Cassubie-Mercier, Galacteros, Chassany and DREPAtient study group.

Déclaration de conflit d'intérêts

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Auteurs

Issifou Yaya (I)

Patient-Reported Outcomes Research (PROQOL), Unité de Recherche Clinique en Economie de la Santé (URC-ECO), Hôpital Hôtel-Dieu, AP-HP, Paris, France.
ECEVE, UMR-S 1123, Université Paris Cité, Inserm, Paris, France.

Adrien Pourageaud (A)

Patient-Reported Outcomes Research (PROQOL), Unité de Recherche Clinique en Economie de la Santé (URC-ECO), Hôpital Hôtel-Dieu, AP-HP, Paris, France.
ECEVE, UMR-S 1123, Université Paris Cité, Inserm, Paris, France.

Benjamin Derbez (B)

CRESPPA-CSU, UMR 7217, Université Paris 8, Paris, France.

Marie-Hélène Odièvre (MH)

Department of General Pediatrics, Sickle Cell Referal Center, Trousseau Hospital, AP-HP, Sorbonne Université, Paris, France.
INSERM U1134, Integrated Red Globule Biology, Paris, France.

Damien Oudin Doglioni (D)

Laboratoire Interuniversitaire de Psychologie/Personnalité, Cognition, Changement Social (LIP/PC2S), Université Grenoble Alpes, Grenoble, France.

Marieke Podevin (M)

ARGO Santé, Orléans, France.

Gaëlle Thomas (G)

ARGO Santé, Orléans, France.

Lisa Yombo-Kokule (L)

Patient-Reported Outcomes Research (PROQOL), Unité de Recherche Clinique en Economie de la Santé (URC-ECO), Hôpital Hôtel-Dieu, AP-HP, Paris, France.
ECEVE, UMR-S 1123, Université Paris Cité, Inserm, Paris, France.

Christian Godart (C)

Fédération nationale des associations de Malades Drépanocytaires et Thalassémiques SOS GLOBI (FMDT SOS GLOBI), Paris, France.

Maryannick Lepetit (M)

Fédération nationale des associations de Malades Drépanocytaires et Thalassémiques SOS GLOBI (FMDT SOS GLOBI), Paris, France.

Tania Cassubie-Mercier (T)

Fédération nationale des associations de Malades Drépanocytaires et Thalassémiques SOS GLOBI (FMDT SOS GLOBI), Paris, France.

Frederic Galacteros (F)

Sickle Cell Referral Center, Internal Medicine Unit, Henri Mondor Hospital, AP-HP, U-PEC; INSERM-U955, Institut Mondor, Université Paris-Est Créteil, Team 2 Transfusion et Maladies du Globule Rouge, Créteil, France.

Olivier Chassany (O)

Patient-Reported Outcomes Research (PROQOL), Unité de Recherche Clinique en Economie de la Santé (URC-ECO), Hôpital Hôtel-Dieu, AP-HP, Paris, France.
ECEVE, UMR-S 1123, Université Paris Cité, Inserm, Paris, France.

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