Alain Leplège

From visual function deficiency to handicap: measuring visual handicap in Mali.

background/aims 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 stressed the need for measurement of subjective self-perceived health. The objectives of this study were twofold: a) To translate, adapt and integrate the cultural context found in Mali and validate two instruments for measuring, respectively, perceived vision and quality of life. b) To study the relationship between these variables and visual deficiencies by gender. methods The perceived vision and quality of life questionnaires were based on a translation of the Aravind questionnaire, adapted to Mali. The resulting perceived vision questionnaire comprises 13 questions, grouped according to five subscales (global vision, visual perception, sensory adaptation, visual field and depth perception). Furthermore, the 13 questions on quality of life were grouped into four subscales (personal care, mobility, social life and psychological). For both questionnaires, a global score could be computed. These two questionnaires were administered to a representative sample of 203 subjects with impaired vision, aged over 40, in a rural area in Mali. results The acceptability of the questionnaires was good (1% missing data). The convergent validity was adequate for all but one subscale (psychological). The discriminate validity is acceptable for three of the six subscales where measurement can be made (visual perception, personal care, mobility). The Cronbach alpha coefficients indicate good reliability for the global scores. conclusions Analysis of mean results confirms the validity of the International Classification of Disease (ICD) definition of blindness (seeing less than 0.05 results in a steep decrease in quality of life). Moreover, blindness affects the quality of life of women more severely than that of men; this may be related to the availability of social support.

Identifying type and determinants of missing items in quality of life questionnaires: Application to the SF-36 French version of the 2003 Decennial Health Survey

BackgroundMissing 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.MethodsWe used the 2003 French Decennial Health Survey of a representative sample of the general population -- including 22,620 adult subjects who completed the SF-36 questionnaire-- to test various socio-demographic, health status and QoL variables as potential predictors of missingness. We constructed logistic regression models for each SF-36 item to identify independent predictors and classify them according to Little and Rubin (missing completely at random, missing at random and missing not at random).ResultsThe type of missingness was missing at random for half of the items of the SF-36 and missing not at random for the others. None of the items were missing completely at random. Independent predictors of missingness were age, female sex, low scores on the SF-36 subscales and in some cases low educational level, occupation, nationality and poor health status.ConclusionThis study of the SF-36 shows that imputation of missing items is necessary and emphasizes several factors for missingness that should be considered in prevention strategies of missing data. Similar methodologies could be applied to item missingness in other QoL questionnaires.

Spatio-temporal Rasch analysis of quality of life outcomes in the French general population. Measurement invariance and group comparisons

BackgroundThis 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.MethodsData concerned 26388 individuals having responded to the SF36 questionnaire in 1995 or in 2003. General Health, Mental Health and Physical Functioning dimensions have been analyzed using a latent regression mixed Partial Credit Model. Differential Item Functioning (DIF) have been searched on each item between age categories, genders, regions of residency, and years of study. Mean and variance of the latent traits have been explained by the same variables, in order to quantify their impact.ResultsFew DIF have been detected between age categories or genders. The analysis shows already known evolutions for HRQoL data: the decrease with age and the differences between genders with worst values for women. We note differences between regions, with better mean value in Paris, in the West or in the South of France, and worst values in the North and in the East. Last, a decrease of the three studied dimensions is noted between 1995 and 2003.ConclusionsThis study using IRT model offers several advantages compared to a classical approach based on scores. First, DIF can be taken into account. More, handling of missing data is easy, because IRT models do not required imputation of missing data. Last, analysis using IRT model is more powerful than analysis based on scores, and allow highlighting a most important number of effects.

Disclosure of myelodysplastic syndrome diagnosis: improving patients' understanding and experience

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.

Les impacts du dispositif d’annonce du diagnostic de cancer sur l’organisation des services hospitaliers et le travail des soignants

Depuis un demi-siecle, l’information medicale 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 sante (1–4).

Mesure de la qualité de vie dans l'insuffisance rénale chronique terminale

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 generic dimensions and 11 specific dimensions. The questionnaire was translated several times independently, and then submitted to a committee of professionals. The study of the measurement properties was carried out near 68 dialysis patients. KDQoL is valid and reproducible, and has properties comparable to the original instrument: missing items proportion of 5.5%, limited floor and ceiling effects (except for 4 dimensions), Cronbach alpha coefficient varying from 0.64 to 0.92 (except for 2 dimensions), test–retest coefficient greater than 0.67 (except for 3 dimensions), and the items of KDQoL were better correlated with their dimension than with other dimensions (except for 2 dimensions). Correlations between the generic and the specific scores showed the absence of redundancies between specific and generic dimensions. Thus the French version has comparable properties to the original KDQoL. This questionnaire can be used to measure the quality of life of the dialysis patients. It constitutes a good tool in clinical research, allowing international comparisons.

A New Condition Specific Quality of Life Measure for the Blind and the Partially Sighted in Sub-Saharan Africa, the IOTAQOL : Methodological Aspects of the Development Procedure

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. Because of face validity concerns, it was not possible to merely translate an existing questionnaire. Thus we decided to develop a new questionnaire directly in one of the main languages of Mali: Bambara. This involved the setting of a study team composed of social and health science specialists, the majority of whom were native Bambara speakers.The overall project consisted in the iteration of three main steps (1) Conceptual clarification and operationalization of this concept. (2) Qualitative steps: qualitative interviews, focus groups and content analysis. (3) Quantitative steps: statistical analysis of an initial try-out survey (143 participants) and a validation survey (420 participants).This approach yields satisfying results. Indeed, the final version of the IOTAQOL has good psychometric properties. Thus, this interviewer administered instrument can be used to measure health-related quality-of-life in Mali and the methodology that we used could serve as a basis for similar projects.

L’annonce d’une hémopathie maligne, les « syndromes myélodysplasiques ». Du dispositif d’annonce au vécu des patients

Le dispositif d’annonce est une reponse institutionnelle face a des revendications de patients et de proches qui protestaient contre des annonces du diagnostic parfois menees sans menagement, vecues comme un « coup de bambou », faites a la sauvette parfois « dans l’escalier » et pouvant etre suivies d’un sentiment d’isolement. Les patients auraient « aime converser avec quelqu’un dans les jours qui suivent ». La prise en compte de ces revendications a conduit notamment a l’elaboration du dispositif d’annonce.

Le choix des mots au cours de l’entretien d’annonce en hématologie : cas clinique et revue de la littérature

Lors des premiers Etats Generaux des malades du cancer de 1998, la facon d’annoncer la maladie a ete remise en question par les patients et leurs proches. Parmi les points abordes, la question de ce que l’on peut et doit dire et ne pas dire lors de l’annonce a ete discutee, menant a la mise en place du dispositif d’annonce dans le cadre du premier Plan cancer. Pour les cancers solides, l’utilisation du mot « cancer » lors de l’annonce est habituelle. En effet, de nombreuses etudes realisees en cancerologie d’organes solides montrent l’interet d’une annonce claire, transparente, sans sous-entendus, n’abusant pas de termes compliques afin de faciliter la comprehension par les patients de leur maladie et de favoriser la relation medecin-malade, si importante pour les deux protagonistes. En revanche, l’emploi du mot « cancer » pour les hemopathies malignes est inconstant. Les terminologies des hemopathies n’evoquent pas clairement la malignite de leur maladie pour les patients. L’etude d’un cas clinique, observe lors d’une recherche sur la mise en place du dispositif d’annonce, et une revue de la litterature a ce sujet nous permettront de discuter de l’interet de l’annonce d’une hemopathie maligne utilisant, si necessaire, le terme « cancer » sans detours.