ABSTRACT
A survey on the burden and quality of care and the parental and primary care physicians' views on management of eight chronic illnesses and disabilities was conducted from 1990 to 1993. Data were collected on 993 children and adolescents from family interviews and physicians' postal questionnaires. Approximately 70% of patients used two or more services for care management and 149 children were treated outside their region. Only 36% of the physicians were case managers and half of these agreed that better communication with other care providers could facilitate their role. A wide difference in parental satisfaction was found between medical and disabling conditions. Approximately 90% of the parents expressed satisfaction with care for children with coeliac disease (112/120), asthma (80/89) and diabetes (98/111), whereas approximately one-third of parents of children with cerebral palsy and Down's syndrome were dissatisfied (88/242 and 72/189, respectively). Primary care physicians expressed similar satisfaction with case management. Distance from hospital, the need for more information on disease management and financial aid were the sources of greatest dissatisfaction. Children with disabling diseases had more problems integrating at school than children with other chronic disorders. Closer interaction between health services, providers and families is necessary to manage the needs of disabled (Italian) children better.
