RESUMO
BACKGROUND: Disproportionate short stature may impair the quality of life (QoL) of patients and their families. This study aimed to evaluate a self-help supported counseling concept to increase the QoL of the participants. METHODS: QoL data from 58 children/adolescents (8-17 years) with a diagnosis of achondroplasia was collected at 2 measurement points during one year using the the QoLISSY questionnaire (self-/parental report). Differences before and after participation vs. non-participation in the intervention were evaluated using a linear mixed model. RESULTS: The longitudinal results show a greater increase of QoL in the active intervention group compared to a passive control group (p=0,005). The increase in the self-reported QoL of affected patients was significantly higher than for the parent-report (p=0,048). CONCLUSIONS: The study shows that patients with achondroplasia benefit from a self-help supported counseling concept. However, this should be tested in a randomized trial.
