Publications by authors named "Rachel Louise Knowles"
Background: Understanding children's views about living with congenital heart defects (CHDs) is fundamental to supporting their successful participation in daily life, school and peer relationships. As an adjunct to a health and quality of life outcomes questionnaire, we asked school-age children who survived infant heart procedures to describe their experiences of living with CHDs.
Methods: In a UK-wide cohort study, children aged 10 to 14 years with CHDs self-completed postal questionnaires that included an open question about having a 'heart problem'.
Aim: To identify patient-reported outcome measures (PROMs) specifically developed and used to assess the impact of ophthalmic disorders in children and to systematically assess their quality as a basis for recommendations about their use in clinical and research settings.
Methods: A systematic review of the literature was performed in MEDLINE, EMBASE, PsychINFO, CINAHL and AMED, supplemented by a grey literature search. Papers reporting development and validation of questionnaire instruments for assessing patient-reported outcomes of an ophthalmic disorder in patients aged 2-18 years were included.