Using proxy reports as indicators of the experiences of young patients can be problematic due to the possibility of discrepancies between assessments of health-care services by children and their parents or caregivers.
A recent study found that patient care experiences are associated with adherence to recommended prevention and treatment processes clinical outcomes, patient safety culture within hospitals and health care utilization. Patient-centred health-care services obviously involve the perspective of children and adolescents, and so quality measurements should aim to identify which aspects are important from their perspective and try to measure their experiences. Patient experiences have become an important measure for health-care quality, but most questionnaire surveys only include the experiences or evaluations of adults. 4 Hormonal changes in adolescence can lead to insulin resistance, and there are also several other factors underlying poor glycemic control in this development stage. 3 Adolescence is a period when diabetes may become a daily struggle against undesirable blood glucose values and risk complications, due to this age group experiencing many challenges to adherence that are intrinsic to their developmental stage and demands for peer normalcy. 1, 2 Around 28,000 people (0.6% of the population) have type 1 diabetes according to calculations based on the Norwegian Prescription Database. Type 1 diabetes is one of the most prevalent chronic illnesses diagnosed in childhood, and Norway has one of the highest incidences of childhood-onset type 1 diabetes in the world. Keywords: surveys and questionnaires, diabetes mellitus, adolescent, patient satisfaction, psychometrics Further research is needed to assess the usefulness of the Adolescent Patient Experiences of Diabetes Care Questionnaire as a basis for quality indicators. Psychometric testing produced good evidence for data quality, internal consistency and construct validity. The construct validity of the instrument was supported by 38 out of 45 significant associations.Ĭonclusion: The content validity of the instrument was secured by a rigorous development process. Each of the single items had a stronger correlation with its hypothesized indicator than with any of the other indicators. All except one indicator met the criterion of 0.7 for Cronbach’s alpha. Five indicators were identified: consultation, information on food and physical activity/exercise, nurse contact, doctor contact and outcome. 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. Results: The pilot study included responses from 335 (54%) patients. We assessed the levels of missing data, ceiling effects, factor structure, internal consistency, item discriminant validity and construct validity. The pilot study involved adolescents aged 12–17 years with type 1 diabetes, sampled from the four largest paediatric 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 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. Most patient experience surveys only include adults’ assessments including parent or proxy surveys in child health care settings.
Purpose: Patient-reported experiences are a key source of information on quality in health care. Hilde Hestad Iversen, 1 Oyvind Bjertnaes, 1 Ylva Helland, 1 Torild Skrivarhaug 2, 3ġDivision of Health Services, Norwegian Institute of Public Health, Oslo N-0403, Norway 2Division of Paediatric and Adolescent Medicine, The Norwegian Childhood Diabetes Registry, Oslo University Hospital, Oslo N-0424, Norway 3Faculty of Medicine, Institute of Clinical Medicine, University of Oslo, Oslo N-0318, Norwayĭivision of Health Services, Norwegian Institute of Public Health, PO Box 222 Skoyen, Oslo 0213, Norway