Parent experiences of diabetes care questionnaire (PEQ-DC): reliability and validity following a national survey in Norway

Abstract

BackgroundPatient experiences are acknowledged as an important aspect of health care quality but no validated instruments have been identified for the measurement of either parent or patient experiences with outpatient paediatric diabetes care. The aim of the current study was to assess the psychometric properties of a new instrument developed to measure parent experiences of paediatric diabetes care at hospital outpatient departments in Norway.MethodsThe development of the questionnaire was based on a literature review of existing questionnaires, qualitative interviews with both parents and children/adolescents, expert-group consultations, pretesting of the questionnaire and a pilot study. The national pilot study included parents of 2606 children/adolescents aged 0–17 years with Type 1 Diabetes registered in The Norwegian Childhood Diabetes Registry, a nationwide, population-based registry. Levels of missing data, ceiling effects, factor structure, internal consistency, item discriminant validity and construct validity were assessed.ResultsA total of 2606 patients were included in the survey, but 80 were excluded due to incorrect addresses. 1399 (55%) parents responded to the questionnaire. Low levels of missing or “not applicable” responses were found for 31 of the 35 items (< 10%), and 27 of 35 items were below the ceiling-effect criterion. Psychometric testing and theoretical considerations identified six scales: Consultation (six items), organisation (five items), equipment (three items), nurse contact (four items), doctor contact (four items) and outcome (five items). All six scales met the 0.7 criterion for Cronbach’s alpha (range: 0.71–0.90). As expected, each item had a higher correlation with its hypothesised scale than with any of the other five scales. The construct validity of the Parent Experiences of Diabetes Care Questionnaire (PEQ-DC) was supported by 17 out of 18 associations with variables expected to be related to parent experiences.ConclusionThe psychometric testing of the PEQ-DC showed good evidence for data quality, internal consistency and construct validity. The instrument includes important aspects of diabetes care at paediatric outpatient departments from the perspective of the parent. The content validity of the PEQ-DC was secured by a rigorous development process, and the instrument was tested following a national survey in Norway, securing generalisability across Norway.

Associations between adolescent experiences, parent experiences and HbA1c: results following two surveys based on the Norwegian Childhood Diabetes Registry (NCDR)

“…However, more research is needed to further explore the associations between parent experiences and the HbA1c level. Understanding the correspondence between the viewpoints of parents and adolescents is potentially useful for informing interventions aimed at improving the healthcare provided at paediatric outpatient departments 23…”

“…The purpose of the pilot study was to determine the data quality, validity and internal consistency reliability of the newly developed instrument. A report published in 2018 documents the development of the instrument and the data collection method 22. The sample was contacted by post in April 2017.…”

“…Non-responders were sent up to two postal reminders. The national parent experience survey has been described elsewhere23 24 and here we include 181 parents that were matched with the adolescent survey. Unique patient identification numbers were used to match parent responses with that of their children.…”

“…Two new measures were developed and tested in accordance with the standard methodology of the national user-experience survey programme in Norway23 24: the Parent Experiences of Diabetes Care Questionnaire (PEQ-DC) and the Adolescent Patient Experiences of Diabetes Care Questionnaire (APEQ-DC) 23. The questionnaires were designed to be applied in surveys of parents of children and adolescents with type 1 diabetes of all ages and of adolescents with type 1 diabetes aged 12–17 years visiting paediatric outpatient departments in Norway, and are included in online supplementary additional file 1 and online supplementary additional file 2.…”

Development and validation of a questionnaire to assess young patients' experiences with diabetes care and transition

“…When our study was initiated in 2013, we decided to develop an age‐ and condition‐specific questionnaire for the purpose of this study. The Norwegian Institute of Public Health runs a programme to systematically measure user experiences with health care . We have followed this standardised national procedure.…”