Alain Leplège

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 (Adult Growth Hormone Deficiency Assessment) a standardized health-related quality of life measure for use with GH-deficient adults, initially developed in the United Kingdom, and to collect data which could be used to assess the main psychometric characteristics of its French version the ISPA-HC (Indicateur de Santé Perceptuelle Adulte-Hormone de Croissance). The main properties analyzed are: 1/ The scale's acceptability, as determined by means of face-to-face interviews with a small number of subjects, then by an ad hoc questionnaire administered during a test-retest study; 2/ The scale's reliability, as determined by a test-retest study (with a 15-days interval between tests); 3/ The scale's concurrent validity, as expressed by comparison with scores obtained by means of a generic quality of life scale, the ISPN (the French version of the Nottingham Health Profile). The results of this first trial with the ISPA-HC are conforming to what one can expect from a good instrument. The ISPA-HC has been shown to have very good levels of reliability and internal consistency. Its scores show a close correlation with those of the ISPN (the French version of the Nottingham Health Profile). This instrument can be used to measure variations in the perceived health of subjects with growth hormone deficiency. Its responsiveness to change is to be examined in subsequent studies.

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. A preliminary version was obtained and confronted with 5 persons with low level of education and 6 patients with neurofibromatosis 1, before assessment in 24 neurofibromatosis 1 patients. The final version was named Skindex-France. Validation study: a test-retest study (1 month interval) was performed on 129 subjects with neurofibromatosis 1 to assess reliability and validity. Acceptability was good with a low rate of missing data (less than 5 p. 100). Ceiling and floor effects were less than 20 p. 100. The scores are sufficiently reliable (Cronbach alpha coefficient: emotions: 0.95, symptoms: 0.86, functioning: 0.94, and test-retest Spearman r: emotions: 0.92, symptoms: 0.84, functioning: 0.90). Skindex-France can be used to measure with precision the impact of skin diseases.

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 with psychiatric patients is discussed. Collection of data was performed during a national inquiry on persons with neuromuscular disorders. The population included 2,102 subjects (mean age 42.9 +/- 15 years). Ten different clinical entities were represented, which differed in the type of lesion of the motor unit, the permanence and localization of the loss of muscle strength, the progression of the respiratory deficit, the moment of its occurrence and seriousness of prognosis. This questionnaire was well-adapted to the study population (weak effect of extremes) and was well-accepted (only 5% non-responses). Compared with the long version, homogeneity is less pronounced, but remains acceptable (the item-scale correlation is superior to 0.40 for 66.7% of some items), which is the same as the reliability (Cronbach's alpha coefficient always over 0.65). The sensitivity in relation to the diagnosis is verified for all four dimensions (p = 0.05). The concurrent validity, studied using general QOL evaluation scores, satisfaction with health, and the importance of repercussions of incapacities on daily life was also globally demonstrated (p < 0.0001).

The use of the term "quality of life" to encompass the values and perceptions of patients has created doubt, confusion, and misunderstanding among practitioners, researchers, policymakers, and patients. The principal reason for this state of affairs is that a clear conceptual basis for quality-of-life measures is lacking. In this article, the current rationale for quality-of-life measurement in the health field is examined, and the drawbacks of the various models being used are outlined. Our suggestion is that quality of life as an outcome could be explored more clearly (ie, defined) if quality of life were replaced with a more easily handled notion such as that of "subjective health status." However, the idea that the patient's perspective is as valid as that of the clinician when it comes to evaluating outcomes has a great deal of legitimacy and should certainly not be abandoned.