Patient Reported Experience Measures (PREM) in children and adolescents with type 1 diabetes – the Norwegian Childhood Diabetes Registry (NCDR)
Patient-reported experiences are a key source of information on quality in health care. Most patient experience surveys only include adults` assessments including parent or proxy surveys in child health care settings. A review of the literature identified no available psychometrically sound instruments that addressed parent satisfaction nor the adolescent patient satisfaction with pediatric diabetes care at outpatient hospital departments. Consequently, we developed a new measure; Parent Experiences of Diabetes Care Questionnaire (PEQ-DC) and Adolescent Patient Experiences of Diabetes Care Questionnaire (APEQ-DC). The development of the of the questionnaires was based on a literature review of existing questionnaires, qualitative interviews with both parents and child/adolescents, expert-group consultations, pretesting of questionnaires and a pilot study. The further objectives of this study is to determine the psychometric properties of PEQ-DC and APEQ-DC. Results: Psychometric testing of both PEQ-DC and APEQ-DC showed good evidence for data quality, internal consistency and construct validity.