Libro blanco de las ACES Pediátricas 2024

Libro Blanco de las ACES Pediátricas 2024 574 ❚ European Curriculum Recommendations Syllabus items Knowledge Skills Attitudes and behaviour Level of competence Minimumclinical exposure Assessment tools* Sample clinical situation 1) Genetics, patho- physiology and epidemiology • Genotype identification and its relevance to the basic cellular abnormality and its relationship to structural and functional pathology • Role of alternative treatments • Risks of some alternative treatments • Illustrating a family tree • Family/ parent coun- selling with an empha- sis on explaining the basic abnormality to a family in a language they can understand 3 • Minimumof two newly diagnosed cases • Diagnosis and coun- selling of a family with a child with newly diagnosed CF 2) Screening and diagnosis • Principles of diagnostic ac- curacy (sensitivity, specificity etc.) • Interpretation of clinical test results including ambiguous results • Communication of positive screening test results •Willingness to give a family the diagnosis with a good balance between informative and empathic com- munication • Reflective commu- nication 3 • Observe and par- ticipate in the initial diagnosis and care of two newly diagnosed CF cases • Portfolio • DOPS • CbD 3) Prognosis • Natural history of CF and fac- tors affecting prognosis • Communication of prognosis and factors affecting it in a lan- guage the family can understand • Active listening to families’ questions and anxieties • Effective communi- cation in amultidisci- plinary team • Ability to judge how and when to adopt novel treatments into local practice 3 • Observe and par- ticipate in the care of 10 cases at different disease stages • Portfolio • DOPS • CbD 4) Diagnosis and management of CF lung disease • Principles of drug treatment and aerosol therapy • Principles of physiotherapy • Nutritional requirements • Pulmonary complications of CF lung disease including e.g. allergic bronchopulmonary aspergillosis (ABPA), pneumot- horax, pulmonary haemorrhage • Psychosocial and develop- mental issues related to CF • Interpretation of clinical features and clinical test results • Practical skills in indwelling i.v. access and linemanagement procedures • Understanding the burden of disease and treatment on child and family •Willingness to work and lead in amultidis- ciplinary team •Willingness to obtain informed consent for relevant procedures 3 • Supervision of inpa- tient and outpatient management for at least 1 year in a CF centre • Participation in >10 MDT discussions • Portfolio • Feedback on letters • Inpatient manage- ment of an exacerba- tion • Outpatient manage- ment incuding annual review • Management of adolescent patients/ transitional care I) CYSTIC FIBROSIS (CF) Mandatory Train in a centre with at least 50 patients for aminimumof 1 yr