Adaptation française du Patient Generated Index: qualités métrologiques et limites pratiques

The aims of this research are to (1) present the French version of the Patient Generated Index (PGI, [17]), (2) test its psychometric characteristics and (3) examine the tool’s practical limitations. To achieve those goals, we conducted two studies. The first was a qualitative study of 18 participants who indicated their difficulties and expressed other comments concerning the completion of an initial back translation of the PGI. The second study tested the psychometric qualities of the adapted and revised back translation of the PGI with 97 cancer patients. To assess criterion validity, they also completed the Quality of Life Questionnaire C30 (QLQ-C30), Profile of Mood States (POMS) and Satisfaction With Life Scale (SWLS). The results indicate that PGI has good sensitivity, validity and test-retest stability. Test-retest reliability, nevertheless, must be improved.     

Clinical and molecular findings in IPEX syndrome.

IPEX (immunodysregulation, polyendocrinopathy, enteropathy, X linked syndrome) is a rare disorder which usually results in death in early infancy or childhood. Clinical awareness remains the cornerstone of diagnosis, and provided that the diagnosis is entertained, mutation analysis for FOXP3 gene mutations can be confirmatory. Two new patients in whom IPEX was diagnosed retrospectively are reported.