Health-Related Quality of Life in a Large Cohort of Adult Patients With Sickle Cell Disease in France (The DREPAtient Study)
Author(s)
Yaya I1, Pourageaud A2, Derbez B3, Odièvre MH4, Oudin Doglioni D5, Podevin M6, Thomas G7, Yombo-Kokule L2, Galacteros F8, Chassany O9
1Patient-Reported Outcomes Research (PROQOL), Unité de Recherche Clinique en Economie de la Santé (URC-ECO), Hôpital Hôtel-Dieu, AP-HP; ECEVE, UMR-S 1123, Université Paris Cité, Inserm,, Paris, France, 2Patient-Reported Outcomes Research (PROQOL), Unité de Recherche Clinique en Economie de la Santé (URC-ECO), Hôpital Hôtel-Dieu, AP-HP; ECEVE, UMR-S 1123, Université Paris Cité, Inserm,, Paris, IDF, France, 3Université Paris 8, Cresppa-CSU59, Paris, France, 4Department of General Pediatrics, Sickle Cell Center, Trousseau Hospital, Assistance Publique - Hôpitaux de Paris (AP-HP), Sorbonne Université; INSERM U1134, Integrated Red Globule Biology, Paris, France, 5Université Grenoble Alpes, Laboratoire Interuniversitaire de Psychologie / Personnalité, Cognition, Changement Social (LIP/PC2S), Grenoble, France, 6ARGO Santé, Olivet, France, 7ARGO Santé, Orléans, France, 8Sickle Cell Referral Center, Internal Medicine Unit, Henri Mondor Hospital, Assistance Publique-Hôpitaux de Paris, U-PEC; INSERM-U955, Institut Mondor, Université Paris-Est Créteil, Team 2 Transfusion et Maladies du Globule Rouge, Créteil, France, 9Patient-Centered Outcomes (PROQOL), University Paris Cité, Paris, 75, France
Presentation Documents
OBJECTIVES: Sickle cell disease (SCD) is an inherited autosomal recessive disorder, causing a range of symptoms and acute and/or chronic complications that impact the quality of life. This study aimed to assess health-related quality of life (HRQoL) and to identify associated factors in adult patients with SCD in France.
METHODS: DREPAtient is a cross-sectional, multi-centre 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 SF-36 French version. HRQoL determinants were identified using bivariate and multivariate linear regression analysis.
RESULTS: Five hundred and seventy participants were included, mostly female (68.9%), with a median age of 33 years. The mean highest score was found in the physical functioning dimension (66.8 ± 21.9), and the lowest score in the general health perception dimension 37.3 ± 20.2). The mean score of the physical composite (PCS) and mental composite (MCS) SF-36 summary scores were 53.3 ± 20.5 and 54.8 ± 21.1, respectively. Worse PCS and MCS scores were both reported for female participants, those with moderate or unstable financial situation perception, those who have been hospitalised for a vaso-occlusive crisis or acute chest syndrome in the last 12 months and those with chronic complications.
Participants who were receiving painkillers (β=-8.71, 95%CI:-11.95; -5.47), or oxygen therapy (β=-8.43, 95%CI:-12.75; -4.12) and those with a history of femoral osteonecrosis (β=-6.26, 95%CI:-9.73; -2.79) reported worse PCS score. Participants with psychological follow-up (β=-7.52, 95%CI:-11.08; -3.95) reported worse MCS score, while those who have a support from relatives reported better MCS score (β=12.72, 95%CI: 5.86; 19.58).CONCLUSIONS: SCD impact greatly on HRQoL. Perceived financial situation and support from relatives are important predictors of HRQoL in SCD patients. Interventions in order to improve HRQoL outcomes SCD should be considered.
Conference/Value in Health Info
Value in Health, Volume 26, Issue 11, S2 (December 2023)
Code
EPH274
Topic
Clinical Outcomes, Methodological & Statistical Research
Topic Subcategory
Clinician Reported Outcomes, PRO & Related Methods
Disease
Musculoskeletal Disorders (Arthritis, Bone Disorders, Osteoporosis, Other Musculoskeletal), No Additional Disease & Conditions/Specialized Treatment Areas, Rare & Orphan Diseases