ANXIETY, DEPRESSION AND QUALITY OF LIFE IN PARENTS OF CHILDREN AFFECTED BY RARE DISEASES

Introduction: Rare diseases are chronically debilitating, possibly impairing the quality of life both of the patient and of his parents. Aims: To examine the quality of life and the coping strategies of the parents of children affected with rare diseases comparing 30 mothers and 25 fathers of children affected by rare diseases with 30 mothers and 26 fathers of non-rare chronic diseases. Anxiety, depression, coping strategies, satisfaction about their life are assessed. Methods: All the subjects are interviewed and undergo an evaluation with the self-report tools Satisfaction With Life Scale, Profile of Mood States, COPE, Hamilton Rating Scale for Depression and Hamilton Rating Scale for Anxiety. The data are analyzed using the statistical package SPSS. Results: Our results show that subjects having children with rare diseases experience more anxiety, but not a more severe depression, worse psychological well-being and have more difficulties to face the daily living. Comparing the mothers and the fathers of children with rare diseases, the first group show higher scores in HRSA. Conclusions: So the feature of uncertainty of a rare disease in terms of aetiology, course and treatment can be associated with a more severe impact on the parents' psychological end emotional well-being.