Quality of Life in Ssc-ILD Patients: Understanding the IMPACT of the ILD and the NEEDS of the Ssc-ILD Patients and Their Caregivers in France
Author(s)
Allanore Y1, Constans J2, Godard D3, de Pouvourville G4, Bouee S5, Jeanbat V6, Teissier C5, Le Lay K7, Chollet J7, Hachulla E8
1Cochin Hospital, Paris, France, 2CHU Bordeaux, Bordeaux, France, 3Association des Sclérodermiques de France, Baccon, France, 4ESSEC Business School, Cergy-Pontoise, France, 5CEMKA, BOURG LA REINE, France, 6CEMKA, Bourg-la-reine, France, 7Boehringer-Ingeleheim France, Paris, France, 8Hôpital Claude Huriez, Centre National de Référence des maladies auto-immunes systémiques, CHRU de Lille, Lille, France
OBJECTIVES The main objectives of this study were to describe the impact of Systemic Sclerosis associated Interstitial Lung Disease (SSc-ILD) on quality of life (QoL), to estimate the correlation between QoL and severity of lung disease and to assess the impact of ILD on caregivers. METHODS Seven investigators included SSc-ILD patients from December 2019 to April 2020. Sociodemographics and clinical data were collected. Patients reported outcomes (PROs) and questionnaires were used with 1 generic PRO (EQ-5D-5L), 1 specific PRO (K-BILD) and 2 self-reported questionnaires on impact of SSc complications and impact on caregivers. The correlation between forced vital capacity (FVC) and EQ-5D-5L score was estimated with a multivariate linear regression model adjusted on several covariates. RESULTS 89 patients were included. 26.4% were males, mean age was 58±14.5 years. Mean EQ-5D-5L score=0.79±0.22 (median=0.85). Mean EQ-5D-5L VAS score=60.8±20.4 (median=61.5). Mean K-BILD score=58.4±12.7 (median=58.0). After adjustment on covariates, a significant correlation between FVC and EQ-5D-5L score was found with an increase of 0.003 of the EQ-5D-5L score for a 1% increase of FVC (p=0.01). No significant correlation between FVC and the EQ-VAS and K-BILD score were found. After adjustment, the impact of SSc on other organs was significantly correlated with EQ-5D-5L score respectively for the impact scores on the lung system (p=0.0013), heart system (p=0.002), Raynaud’s syndrome (p=0.0087), digestive system (p=0.0003), joints/muscles (p<0.0001), skin (p<0.0001), kidney (p=0.0004) and gastro-oesophageal reflux (p=0.0013) . Significant correlations between K-BILD score and lung system (p<0.0001), heart system (p<0.0001), digestive system (p<0.0001), kidney (p=0.0002), skin (p=0.03) and gastro-oesophageal reflux (p=0.0003) scores were also found 68.5% of patients reported their need for a caregiver to help them in their daily life activities. CONCLUSIONS Our study highlighted the strong burden of SSc-ILD for patients, especially with an impact on QoL, on other organs manifestations and need for caregivers in their daily life.
Conference/Value in Health Info
2020-11, ISPOR Europe 2020, Milan, Italy
Value in Health, Volume 23, Issue S2 (December 2020)
Code
PMS52
Topic
Economic Evaluation, Patient-Centered Research
Topic Subcategory
Health State Utilities, Patient-reported Outcomes & Quality of Life Outcomes, Work & Home Productivity - Indirect Costs
Disease
Musculoskeletal Disorders, Rare and Orphan Diseases, Systemic Disorders/Conditions
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