Alain Leplège

Alain Leplège
Paris Diderot University | UP7 · Laboratoire de Sciences, Philosophie, Histoire (SPHERE) UMR 7219

MD, PhD

About

151
Publications
29,557
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15,701
Citations
Citations since 2017
18 Research Items
4386 Citations
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20172018201920202021202220230200400600
20172018201920202021202220230200400600

Publications

Publications (151)
Article
Full-text available
Background EQ-5D health state utilities (HSU) are commonly used in health economics to compute quality-adjusted life years (QALYs). The EQ-5D, which is country-specific, can be derived directly or by mapping from self-reported health-related quality of life (HRQoL) scales such as the PROMIS-29 profile. The PROMIS-29 from the Patient Reported Outcom...
Preprint
Full-text available
Background: EQ-5D health utility (HU) scores are commonly used in health economics to compute quality-adjusted life years (QALYs). EQ-5D scores, which are country-specific, can be derived directly or by mapping from self-reported health-related quality of life (HRQoL) scales such as the PROMIS-29 profile. The PROMIS-29 from the Patient Reported Out...
Preprint
Full-text available
Background: EQ-5D health state utilities (HSU) are commonly used in health economics to compute quality-adjusted life years (QALYs). The EQ-5D, which is country-specific, can be derived directly or by mapping from self-reported health-related quality of life (HRQoL) scales such as the PROMIS-29 profile. The PROMIS-29 from the Patient Reported Outco...
Preprint
Full-text available
Background: EQ-5D health state utilities (HSU) are commonly used in health economics to compute quality-adjusted life years (QALYs). The EQ-5D, which is country-specific, can be derived directly or by mapping from self-reported health-related quality of life (HRQoL) scales such as the PROMIS-29 profile. The PROMIS-29 from the Patient Reported Outco...
Article
Background Interest in monitoring health-related quality of life (HRQoL) in general populations has increased in the past 20 years, reinforced by population ageing and repeated economic crises. This study aims to identify temporal trends in HRQoL in France between 1995 and 2016 and to assess disparities according to demographic and socioeconomic ch...
Article
Background: PROMIS-29 is a new generic standardized questionnaire measuring self-reported health status. It was developed as part of the Patient Reported Outcome Measurement Information System (PROMIS) in the United States. The objective of this study was to carry out the psychometric validation of a French-language version of PROMIS-29 and to est...
Article
Full-text available
L’âge des mineurs qui réclament un traitement pour la dysphorie du genre (anciennement et encore couramment appelée « transgénérisme » ou « transsexualité ») ne cesse de reculer [1], mais un manque de consensus sur des traitements qui soient médicalement et éthiquement acceptables pour les individus prépubères, rend difficile leur prise en charge [...
Article
Full-text available
Purpose: Comparability of patient-reported outcome measures over different languages is essential to allow cross-national research. We investigate the comparability of the PROMIS Profile 29, a generic health-related quality of life measure, in general population samples in the UK, France, and Germany and present general population reference values...
Article
Résumé La loi de 2002 rénovant l’action sociale et médico-sociale oblige les acteurs du secteur médico-social à placer les parents au centre du projet éducatif et de toutes les décisions concernant l’enfant en situation de handicap. Cette recherche porte un nouvel éclairage sur les transformations des postures et des représentations des professionn...
Article
In order to rethink rehabilitation — it is vital that we think about current rehabilitation — what it looks like and why. The dominant models that have emerged to guide development and practice, the frameworks that underpin compensation policies, funding for services, and indeed research, all have historical and political roots. If we better unders...
Chapter
In order to rethink rehabilitation-it is vital that we think about current rehabilitationwhat it looks like and why. The dominant models that have emerged to guide development and practice, the frameworks that underpin compensation policies, funding for services, and indeed research, all have historical and political roots. If we better understand...
Article
(1) We had for aim to determine the rate of patients consulting for post-herpetic neuralgia (PHN) in centers specialized in the management of chronic pain, (2) to assess the burden of PHN, (3) to compare the impact of PHN between new (newly consulting for PHN) and known (already treated by pain specialists) patients. We conducted a prospective mult...
Article
Full-text available
Patient-reported outcomes (PROs) play an increasingly important role in clinical practice and research. Modern psychometric methods such as item response theory (IRT) enable the creation of item banks that support fixed-length forms as well as computerized adaptive testing (CAT), often resulting in improved measurement precision and responsiveness....
Article
Purpose: We present the validation data of the French version of a new quality of life questionnaire, specifically developed for use with older adults (>60 years old): the WHOQOL-OLD module. This questionnaire, which contains 24 items in six domains, is a complementary module of the WHOQOL-BREF quality of life questionnaire. It was internationally...
Article
Purpose: How a diagnosis of cancer is disclosed can affect psychological morbidity. Haematological malignancy specialised terminology may make the disclosure difficult. We analysed how disclosure of a diagnosis of myelodysplastic syndrome (MDS) is experienced by patients. Methods: Patients from the French MDS support group were questioned about...
Article
Full-text available
Background This study aims at analyzing Health related quality of life (HRQoL) data on the French general population between 1995 and 2003 using an Item Response Theory (IRT) model. Methods Data concerned 26388 individuals having responded to the SF36 questionnaire in 1995 or in 2003. General Health, Mental Health and Physical Functioning dimensio...
Article
Vertebral fractures cause pain and may hamper activities of daily life, mobility, social activities and mental function. These aspects of quality of life may be assessed with a generic or disease-specific quality of life questionnaire. The International Osteoporosis Foundation has developed a specific questionnaire for patients with vertebral fract...
Article
Full-text available
During the first French Convention of cancer patients, the way of disclosing the disease has been questioned by the patients and their close relations. The question of what we can and have to say or not say during diagnostic disclosure has been discussed. In solid cancers, studies have shown that a clear, transparent announcement, without insinuati...
Article
Developing and validating an instrument to measure quality of life is a complexundertaking. The main stages of such a process extend from the creation of a tool through conceptual, qualitative and quantitative phases to the main notions relating to its validation: reliability and validity of the measurement, sensitivity to changes.
Article
Full-text available
Dans le cadre d’une étude soutenue par l’Institut national du cancer (INCa), nous avons évalué le vécu du dispositif d’annonce chez 29 patients atteints de Cancer dans deux hôpitaux du Pôle Sud d’Île-de-France. Si la nécessité et l’utilité du dispositif d’annonce, renforçant l’implication des soignants dans l’annonce, sont évidentes, plusieurs amél...
Chapter
Depuis un demi-siècle, l’information médicale fournie aux patients a fait l’objet de nombreuses recherches dans le domaine des sciences humaines et sociales et, en particulier, celui de la psychologie clinique ou de la sociologie de la santé (1–4).
Chapter
Le dispositif d’annonce est une réponse institutionnelle face à des revendications de patients et de proches qui protestaient contre des annonces du diagnostic parfois menées sans ménagement, vécues comme un « coup de bambou », faites à la sauvette parfois « dans l’escalier » et pouvant être suivies d’un sentiment d’isolement. Les patients auraient...
Article
Herpes zoster pain and postherpetic neuralgia (PHN) particularly affect older persons. This literature review presents how quality of life is evaluated and the consequences of shingles and PHN on the quality of life of older persons. Although more than 150 articles have been published on herpes zoster and its consequences, specific studies focusing...
Article
737 Introduction Trends over the last 40 years have led to a more complete disclosure of cancer-related information to the patients. Previous studies in non-haematological cancers have shown that patients want to receive information about their health as clearly as possible, and this includes limiting the use of medical jargon. In contrast to othe...
Article
Missing items are common in quality of life (QoL) questionnaires and present a challenge for research in this field. It remains unclear which of the various methods proposed to deal with missing data performs best in this context. We compared personal mean score, full information maximum likelihood, multiple imputation, and hot deck techniques usin...
Article
Full-text available
The potentially serious nature of herpes zoster (HZ) and the long-term complication post-herpetic neuralgia (PHN) are often underestimated. One in four people will contract herpes zoster in their lifetime, with this risk rising markedly after the age of 50 years, and affecting one in two in elderly individuals. Pain is the predominant symptom in al...
Article
Just what defines a 'good' outcome in rehabilitation has been a much-debated issue. Indeed, this question remains a major focus in research, clinical practice and policy (with funding in many countries now being linked to outcomes achieved rather than outputs or services provided). Despite this rather constant attention, complexity, contention and...
Article
Full-text available
Missing items are common in quality of life (QoL) questionnaires and present a challenge for research in this field. The development of sound strategies of replacement and prevention requires accurate knowledge of their type and determinants. We used the 2003 French Decennial Health Survey of a representative sample of the general population--inclu...
Data
Univariate analysis for factors associated with the missingness for each item of the SF-36.
Data
Multivariate analysis for factors associated with the missingness for each item of the SF-36.
Data
Scales, items of the SF-36 questionnaire and their scores.
Article
Full-text available
Patients with atrial fibrillation (AF) consider the related symptoms disruptive to their quality of life (QoL). This study aimed to evaluate the impact of the control of symptomatic paroxysmal AF (PAF) on QoL. Patients with symptomatic PAF were treated for 48 weeks with open-label flecainide acetate controlled release (Flec CR). Quality of life was...
Article
Full-text available
Our objective was to describe self-sufficiency and quality of life one year after intensive care unit (ICU) discharge of patients aged 80 years or over. We performed a prospective observational study in a medical-surgical ICU in a tertiary non-university hospital. We included patients aged 80 or over at ICU admission in 2005 or 2006 and we recorded...
Chapter
Although blindness and low vision affects only indirectly the length of life it affects considerably the quality of life. Therefore the assessment of the burden of disease related to blindness and vision impairment need to take into account the impact of these diseases in terms of quality of life. With the exception of the Aravind Eye questionnaire...
Article
The assessment of outcomes of severe mental illnesses has become recently an important line of research in psychiatry, leading to distinguish different levels of outcomes and a diversity of underlying factors. The focus has shifted from a traditional medical notion of 'disease outcome' to a wider notion of 'functional outcome', and even to an inqui...
Article
The definition and aims of rehabilitation are both topics of frequent debate. Recently several authors have suggested defining rehabilitation and its goals in terms of 'person-centredness'. However such attempts to define rehabilitation in this way have not occurred without running into their own difficulties and criticisms. Consequently, one may q...
Article
Justice and Science in the Field of Handicap. Equal opportunities and equality before the law are central to the notion of handicap. Contemporary theories on justice and the debate around them shed light on this notion and influence the ways in which handicaps are conceptualised and operationalised. This article will show how the International Clas...
Article
Although evaluation and support practices in professional integration for people with a psychic handicap are, for the most part, ensured by clinicians, they need a theoretical framework that accepts the multidimensionality of factors that play a role in professional reintegration, and thus cannot be limited to a clinical and psychopathological fram...
Article
End-stage renal disease has an important impact on the patients' daily life, which can be measured by quality of life questionnaires. The objective of this work was to adapt the Kidney Disease Quality of Life questionnaire (KDQoL) into French and to determine its basic psychometric properties, i.e. validity and reliability. The KDQoL consisted of 8...
Article
End-stage renal disease has an important impact on the patients' daily life, which can be measured by quality of life questionnaires. The objective of this work was to adapt the Kidney Disease Quality of Life questionnaire (KDQoL) into French and to determine its basic psychometric properties, i.e. validity and reliability. The KDQoL consisted of 8...
Article
Aims: It is a generally shared opinion that rehabilitation is not (yet) 'fully person-centred' and that it should be more. For a certain number of authors, this deficit in person-centredness has originated from the important weight of a 'medical framework' within rehabilitation. In this paper, we will discuss this criticism and its corollary: the...
Article
In Mali, blind and partially sighted people represent 1.2% of the population. Good quality and low cost ophthalmologic care is available, but, unfortunately, is insufficiently taken advantage of. In order to contribute to the analysis of this situation a valid and reliable questionnaire was needed to take the patient’s perspective into account. Bec...
Article
Neurofibromatosis 1 (NF1), a genetic condition most commonly characterized by the presence of dermal neurofibromas and café au lait macules, has a significant impact on Quality of Life (QoL). There is a wide range of phenotypic variability, so that affected individuals may have either medically devastating or relatively mild manifestations that do...
Article
End-stage renal disease has an important impact on the patients' daily life, which can be measured by quality of life questionnaires. The objective of this work was to adapt the Kidney Disease Quality of Life questionnaire (KDQoL) into French and to determine its basic psychometric properties, i.e. validity and reliability. The KDQoL consisted of 8...
Article
Full-text available
Introduction: Vertebral deformities are a common consequence of osteoporosis and are known to decrease quality of life. The Qualeffo-41 is a quality-of-life questionnaire especially developed for measuring quality of life in patients with vertebral deformities. It consists of 41 questions arranged in five domains: pain, physical function, social f...
Article
Restoring a normal quality of life (QOL) should be the goal of treatments of gastro-esophageal reflux (GER) without severe esophagitis. In this analysis, carried out within the frame of a clinical study comparing a topical anti-inflammatory gel to a placebo, we assessed the relevance of the MOS SF-36 questionnaire in patients suffering from GER wit...
Article
Full-text available
During the early steps of the construction of composite health measures, principal component analysis (PCA) is commonly used to identify 'latent' factors that underlie observed variables and to determine the dimensionality of the instruments. The determination of the number of components to retain is critical to PCA: it markedly influences the fact...
Article
Few studies and no international comparisons have examined the impact of multiple chronic conditions on populations using a comprehensive health-related quality of life (HRQL) questionnaire. The impact of common chronic conditions on HRQL among the general populations of eight countries was assessed. Cross-sectional mail and interview surveys were...
Article
This technical note deals with a class of probabilistic measurement models identified by the Danish mathematician Georg Rasch (1901-80). Models of this class have been used to construct and test questionnaires in the various social sciences. This is a remarkable class of models because the defining conception of measurement is similar to that of th...
Article
This study forms part of a research project seeking to develop a standardized questionnaire by which clinicians can assess the impact of growth hormone (GH) deficiency and its treatment on the "perceived health" or health-related quality of life of adults. The specific aim of this study was to translate and adapt for French patients the AGHDA (Adul...
Article
The Skindex is an American tool designed to measure the impact of skin diseases on quality of life. The aim of our study was to adapt and validate this questionnaire in French in a population of patients with neurofibromatosis 1. Translation and cultural adaptation: Translations were performed independently by two bilingual persons, then discussed....
Article
Psychiatric comorbidities have been well documented in patients with neurofibromatosis 1 (NF1),¹- 3 and none of these psychological or psychiatric conditions are correlated with the severity of somatic symptoms.²,3 We recently published in the ARCHIVES that NF1 has a significant impact on quality of life through alteration of health and appearance....
Article
Blindness is a major public health problem in developing countries, even though most could be prevented by relatively simple hygienic and medical interventions. Relatively few patients use the quality health care services available, despite their low cost, due to problems of access or socio-cultural barriers. This health services research project s...
Article
Neurofibromatosis type 1 affects quality of life (QoL) through association with severe complications, impact on cosmetic features, and uncertainty of the effects of the disorder. To evaluate the impact of the severity and visibility of neurofibromatosis type 1 on QoL. Monocenter, cross-sectional study. One French academic dermatological and neurofi...
Article
There have been many epidemiological studies of chickenpox, but only a few of herpes zoster. We report data from an observational study, conducted in France during a 1-year period, of 9038 patients who presented with acute herpes zoster (n = 8103) or postherpetic neuralgia (PHN) at the office practices of 4635 general practitioners or dermatologist...
Article
Background Neurofibromatosis type 1 affects quality of life (QoL) through association with severe complications, impact on cosmetic features, and uncertainty of the effects of the disorder.Objective To evaluate the impact of the severity and visibility of neurofibromatosis type 1 on QoL.Design Monocenter, cross-sectional study.Setting One Frenc...
Article
Plasma levels of dehydroepiandrosterone sulphate (DHEA-S) decrease with the progression of HIV disease. Here, we report on the efficacy and safety of the oral administration of DHEA as replacement therapy, in patients with advanced HIV disease, in a trial that was primarily aimed at assessing quality of life. The trial was randomized and double-bli...
Article
Full-text available
We report the results of the cross-cultural adaptation and validation into the French language of two health status instruments. The Childhood Health Assessment Questionnaire (CHAQ) is a disease specific instrument that measures functional ability in daily living activities in children with juvenile idiopathic arthritis (JIA). The Child Health Ques...
Article
Full-text available
There have been many epidemiological studies of chickenpox but only a few of herpes zoster. We report data from an observational study, conducted in France during a 1-year period, of 9038 patients who presented with acute herpes zoster (n = 8103) or postherpetic neuralgia (PHN; n = 935) at the office practices of 4635 general practitioners or derma...
Article
This study describes the principal psychometric properties of the French version of the WHOQOL-26, a short version (26 questions) of the WHOQOL-100, which are World Health Organization instruments for evaluation of quality of life (QOL) which include four dimensions (physical, psychological, environmental, social relations). The use of this tool wi...