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Objectives: The objectives of this study were to describe the impact of systemic sclerosis associated interstitial lung disease, on quality of life, to estimate the correlation between quality of life and severity of lung disease and to assess the impact of interstitial lung disease on caregivers. Methods: Seven investigators included systemic sclerosis associated interstitial lung disease patients from December 2019 to April 2020. Sociodemographics and clinical data were collected. Patients reported outcomes and questionnaires were used with 1 generic patients reported outcome (EQ-5D-5L), 1 specific PRO (Brief Interstitial Lung Disease) and 2 self-reported questionnaires on impact of SSc complications and impact on caregivers. The correlation between forced vital capacity and EQ-5D-5L score was estimated with a multivariate linear regression model adjusted on several covariates. Results: In all, 89 patients were included. 26.4% were males, mean age was 58.2 ± 14.5 years. Mean EQ-5D-5L score = 0.79 ± 0.22 (median = 0.85). Mean EQ-5D-5L visual analog scale score = 60.8 ± 20.4 (median = 61.5). Mean King’s Brief Interstitial Lung Disease score = 58.4 ± 12.7 (median = 58.0). After adjustment on covariates, a significant correlation between forced vital capacity 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 = 0.0096). No significant correlation between forced vital capacity and the EQ-VAS and King’s Brief Interstitial Lung Disease score were found. 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 = 0.0003), heart system (p = 0.0182), Raynaud’s syndrome (p = 0.0015), digestive system (p = 0.0032), joints/muscles (p = 0.0003), skin (p < 0.0001), kidney (p = 0.0052) and gastro-oesophageal reflux (p = 0.0063). Significant correlations between King’s Brief Interstitial Lung Disease score and lung system (p < 0.0001), heart system (p < 0.0001), digital ulcers (p = 0.058), digestive system (p < 0.0001), kidney (p = 0.0004), skin (p = 0.0499) and gastro-oesophageal reflux (p = 0.0033) scores were found 68.5% of patients reported their need for a caregiver to help them in their daily life activities. Conclusion: Our study highlighted the strong burden of systemic sclerosis associated interstitial lung disease` for patients, especially with an impact on quality of life, on other organs manifestations and need for caregivers in their daily life.

Objectif : Decrire les pratiques d’auto-surveillance glycemique (ASG) chez les patients diabetiques de type 1 (DT1) ou 2 (DT2) et estimer la proportion de patients realisant une ASG selon la frequence recommandee, la proportion de patients respectant les recommandations de qualite de la mesure. Materiels et methodes : Etude nationale, transversale, conduite aupres de 238 pharmacies. Un questionnaire etait complete avec les patients sur les items suivants : diabetiques adultes, achetant pour eux-memes du materiel d’ASG, utilisant un lecteur depuis au moins six mois, sous insuline ou sulfamide/glinide ± autres antidiabetiques (AD). Resultats : 449 patients ont ete inclus : 85 DT1 et 121 DT2 traites par multi-injections de type basale-bolus ± AD (Groupe A et Groupe B), 123 DT2 par insuline basale ± AD (Groupe C), 102 patients sous un autre schema insulinique ± AD (Groupe D) et 120 DT2 par sulfamides/glinides sans insuline ± autres AD (Groupe E). La frequence recommandee etait suivie respectivement par 29,8 %, 36,4 %, 61,8 % et 69,2 % des patients Groupe A, Groupe B, Groupe C, Groupe E. La qualite de l’auto-mesure restait insuffisante qu’il s’agisse du nettoyage de l’appareil, des conditions de conservation/peremption des bandelettes ou de l’utilisation des solutions de controle. La capacite des patients a prendre une decision face a leur ASG restait faible (Groupe A : 56,5 %, Groupe B : 70,2 %, Groupe C : 49,2 %, Groupe E : 36,0 %) comme leur connaissance de leurs objectifs glycemiques (Groupe A : 81 %, Groupe B : 80,5 %, Groupe C : 68,6 %, Groupe E : 73,7 %). Conclusion : Si des progres restent a faire sur la frequence et la qualite des mesures, professionnels et patients doivent surtout porter leurs efforts sur l’education a l’interpretation des resultats de l’ASG.

Background Clostridium difficile infection (CDI) is associated with a substantial Quality of life impact on patients that has not been so far measured with a generic validated instrument. Methods A prospective study was performed in 7 French acute-care settings in patients presenting with a bacteriologically-confirmed CDI. The EQ-5D-3 L was filled in by patients at 7 ± 2 days after CDI diagnosis to describe their state of health at that date as well as their state of health immediately before the CDI episode (baseline). Individual utility decrement was obtained by subtracting the corresponding utilities. The Quality Adjusted Life Year (QALY) loss was calculated by multiplying the days spent from baseline to the date of the interview, by the decrement of utility. A multivariate analysis of variance of the utility decrement according to CDI and patients characteristics was performed. Results Eighty patients were enrolled (mean age: 69.4 years, 55% females). The utility scores dropped from a mean 0.542 (SD: 0.391) at baseline to 0.050 (SD: 0.404) during the CDI episode with a mean adjusted utility decrement of 0.492 (SD: 0.398) point. This decrement increased significantly with CDI severity (Zar score ≥ 3) (p = 0.001), in patients with a positive baseline utility (p = 0.032), in women as compared to men (p = 0.041) and in patients aged more than 65 years (p = 0.041). No association with the Charlson index was found. The associated QALY loss not integrating the excess mortality was 0.028 (SD: 0.053). Conclusions The impact on quality of life of CDI episodes is major and translates in a substantial QALY loss despite their short duration. Electronic supplementary material The online version of this article (10.1186/s12955-019-1081-5) contains supplementary material, which is available to authorized users.

International audience; AbstractBackgroundFibrodysplasia ossificans progressiva (FOP) is a rare, severely disabling, and life-shortening genetic disorder that causes the formation of heterotopic bone within soft connective tissue. Previous studies found that the FOP prevalence was about one in every two million lives. The aim of this study is to estimate the FOP prevalence in France by probabilistic record-linkage of 2 national databases: 1) the PMSI (Programme de médicalisation des systèmes d’information), an administrative database that records all hospitalization activities in France and 2) CEMARA, a registry database developed by the French Centres of Reference for Rare Diseases.ResultsUsing a capture-recapture methodology to adjust the crude number of patients identified in both data sources, 89 FOP patients were identified, which results in a prevalence of 1.36 per million inhabitants (CI95% = [1.10; 1.68]). FOP patients’ mean age was 25 years, only 14.9% were above 40 years, and 53% of them were males. The first symptoms – beside toe malformations- occurred after birth for 97.3% of them. Mean age at identified symptoms was 7 years and above 18 years for only 6.9% of patients. Mean age at diagnosis was 10 years, and above 18 years for 14.9% of the patients. FOP patients were distributed across France.ConclusionsDespite the challenge of ascertaining patients with rare diseases, we report a much higher prevalence of FOP in France than in previous studies elsewhere. We suggest that efforts to identify patients and confirm the diagnosis of FOP should be reinforced and extended at both national and European level.

Objectif Evaluer les consequences sur la qualite de vie d’un episode d’infection a Clostridium difficile (ICD) chez des patients hospitalises en court sejour. Materiel et methodes Une etude observationnelle prospective a ete conduite en 2016 dans sept centres hospitaliers francais chez des patients presentant une ICD confirmee microbiologiquement. L’auto-questionnaire EQ-5D-3L a ete complete par les patients pour decrire leur etat de sante percu, a deux reprises : a 7 (± 2) jours apres le diagnostic d’ICD ainsi que de facon retrospective pour decrire leur etat avant l’episode infectieux. Les decrements d’utilite correspondants (avant et pendant l’episode) ont ete calcules en appliquant les valeurs de reference francaises [1] . Le score obtenu variait entre −1 et 1, 1 etant la meilleure qualite de vie possible. Le calcul des QALYs a ete effectue a partir de l’EQ-5D et des durees moyennes observees des episodes dans les etudes publiees. La perte de QALY a ete estimee en multipliant la perte incrementale d’utilite par la duree moyenne d’un episode. Une analyse de la variance des decrements d’utilite en fonction de la severite de l’ICD et des caracteristiques des patients a ete realisee. Resultats Au total, 80 patients ont ete inclus et disposaient de donnees exploitables ; 45 % des patients inclus etaient des hommes et l’âge median a l’inclusion etait de 71 ans (min/max : 30/98). La duree d’hospitalisation moyenne etait de 30 jours (± 29). Le score moyen de Charlson etait de 5,1 (± 2,8). Les scores d’utilite etaient negatifs chez 14 patients (18 %) avant l’episode d’ICD et chez 43 patients (54,4 %) pendant l’episode. Le score moyen EQ-5D est passe de 0,542 (± 0,391) avant l’episode infectieux a 0,050 (±0,404) pendant l’episode, avec une perte d’utilite moyenne ajustee de 0,482 points (±0,4). Le decrement d’utilite etait significativement plus important en fonction de la severite de l’ICD (score Zar ≥ 3) (p = 0,001), pour les patients avec un score d’utilite positif avant l’episode (p = 0,032), pour les femmes (p = 0,041) et pour les patients âges de 65 ans ou plus (p = 0,041). Aucune association avec le score de Charlson n’a ete mise en evidence. La perte de QALY associee en l’absence de deces etait de 10,22 QALD (« Quality-Adjusted Life Days ») (± 19,44) soit 0,028 QALY (± 0,052). Conclusion Les consequences sur la qualite de vie des episodes d’ICD, en dehors des consequences en termes de mortalite plus elevee, sont importantes et se traduisent en une perte significative de QALY malgre leur courte duree.

Purpose. To determine the prevalence of ocular surface diseases and identify risk factors in a population of patients receiving antiglaucomatous eyedrops over the long term. Methods. An observational cross-sectional study was designed to investigate ocular surface signs and symptoms using simple clinical tools. An ocular surface disease intensity score was calculated based on 10 questions regarding ocular surface symptoms and signs with a 4-grade scale. Patients were classified into 3 groups (A, B, and C) according to this total score. A multinomial logistic regression was performed in order to identify risk factors for surface disease. Results. In an overall population of 516 patients, 49% belonged to group A, 30% to group B, and 21% to group C. The multivariate analysis showed that the following factors were correlated with the severity of ocular surface disease: patient age, number of daily eyedrops, past topical treatment changes for ocular intolerance (found in the history of 40% of the patients), intraocular pressure (found to be significantly higher in patients with more severe ocular surface disease), and glaucoma severity. Conclusions. Patients treated for primary open-angle glaucoma or ocular hypertension often have ocular surface diseases, more often and more severely in older patients receiving more drugs and presenting with more severe glaucoma. These high prevalence values might therefore have consequences on the burden of the disease in terms of adherence to treatment and quality of life.