RESUMO
The inclusion of health-related quality of life (HRQoL) as an outcome measure in cystic fibrosis (CF) clinical trials can supply important patient-reported information not captured by other endpoints. Both an appropriate HRQoL measure and sound methodology are required in order to draw valid inferences about treatments and HRQoL. This paper provides the current consensus of the HRQoL Outcomes Group. Particular consideration has been given to the appropriateness of measurement scales, the rationale for including specific domains as endpoints, the importance of considering baseline ceiling effects and the difficulties of data interpretation. Guidance is provided on HRQoL measurement in National and European CF clinical trials.
Assuntos
Ensaios Clínicos como Assunto/normas , Fibrose Cística/terapia , Avaliação de Resultados em Cuidados de Saúde/normas , Guias de Prática Clínica como Assunto , Qualidade de Vida , Fibrose Cística/psicologia , Europa (Continente) , HumanosRESUMO
In a longitudinal study, age at menarche for Swedish girls was recorded by school nurses. Some four years after the event the girls were asked to recall the date. The correlation between actual and recalled age at menarche for 339 girls was r = 0-81 +/- 0-05. 63 per cent of the girls recalled the date within +/- 3 months. It is concluded that recalled age is too inaccurate for most purposes.
