Abstract
PURPOSE: 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. The aim of this study was to determine the psychometric properties of the Adolescent Patient Experiences of Diabetes Care Questionnaire, a new instrument developed to measure adolescent experiences of paediatric diabetes care at hospital outpatient departments in Norway. PATIENTS AND METHODS: The questionnaire was developed based on a literature review, qualitative interviews with adolescents, expert-group consultations, pretesting of the questionnaire and a pilot study. The pilot study involved adolescents aged 12-17 years with type 1 diabetes, sampled from the four largest paediatric outpatient departments in Norway. We assessed the levels of missing data, ceiling effects, factor structure, internal consistency, item discriminant validity and construct validity. RESULTS: The pilot study included responses from 335 (54%) patients. Low proportions of missing or "not applicable" responses were found for 17 of the 19 items, and 14 of these 19 items were below the ceiling-effect criterion. Five indicators were identified: consultation, information on food and physical activity/exercise, nurse contact, doctor contact and outcome. All except one indicator met the criterion of 0.7 for Cronbach's alpha. Each of the single items had a stronger correlation with its hypothesized indicator than with any of the other indicators. The construct validity of the instrument was supported by 38 out of 45 significant associations. CONCLUSION: The content validity of the instrument was secured by a rigorous development process. Psychometric testing produced good evidence for data quality, internal consistency and construct validity. Further research is needed to assess the usefulness of the Adolescent Patient Experiences of Diabetes Care Questionnaire as a basis for quality indicators.