Smets, E.M.A.

patient carrier cancer children disease mutation information study mutation carriers surveillance cardiologist hypertrophic cardiomyopathy prognostic information fatigue group level prognosis result quality hcm mutation carriers questionnaire answer family score number scale depression preference heart testing factor anxiety prognostic table risk factors netherland distress risk stratification dna testing insurance hypertrophic cardiomyopathy health dutch problem death symptom amsterdam respondent center parent experience hcm patients guideline knowledge stratification population individual recurrence genetic perception difference syndrome hospital training determinant child impact lqts carrier children treatment status worry pc surveillance activity dutch cardiologists question consequence signi /year follow-up