title: Patient-reported outcomes in congenital cardiac disease: are they as good as you think they are?
abstract: Patient-reported outcomes are "any outcome based on data provided by patients or patient proxy as opposed to data provided from other sources". Examples of patient-reported outcomes are quality of life, well-being, functional status, symptoms, adherence to treatment, satisfaction with treatment, and utility or preference-based measures. The main question of this manuscript is whether patient-reported outcomes in patients with congenital cardiac disease are as good as we think they are. In general, we could say yes, because numerous studies show that patients with congenital cardiac disease have an excellent quality of life. By contrast, we could say no, because patients generally overestimate their functioning, and up to two out of three patients are not compliant with the prescribed therapy or recommendations for follow-up. However, most importantly, we have to say that we do not know whether the patient-reported outcomes are good, because research with patient-reported outcomes in congenital cardiac disease is limited. Hence, patient-reported outcomes should be a priority on the agenda for research in the domain of congenital cardiac disease.
authors.affiliation: Center for Health Services and Nursing Research, Katholieke Universiteit Leuven, Belgium. Philip.Moons@med.kuleuven.be
authors.forename: Philip
authors.initials: P
authors.lastname: Moons
mesh_terms: D006330:Heart Defects, Congenital / Q000175:diagnosis; D006801:Humans; D011788:Quality of Life; D057566:Self Report