The Adolescent Patient Experiences of Diabetes Care Questionnaire (APEQ-DC): Reliability and Validity in a Study Based on Data from the Norwegian Childhood Diabetes Registry

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.

Keywords:

• surveys and questionnaires
• diabetes mellitus
• adolescent
• patient satisfaction
• psychometrics

Acknowledgments

We thank Hilde Bjørndalen at the Department of Paediatric Medicine at Oslo University Hospital for organizing patients for the interviews, for participating in the expert group and for contributing to financing the project through “Lillian and Werner Næss legat”. We also thank Inger Opedal Paulsrud, Olaf Holmboe, Johanne Kjøllesdal and Nam Pham from the Knowledge Centre at the NIPH for their help in developing and conducting the survey, including performing administrative and technical tasks in data collection. We further thank Ann Kristin Drivvoll from the NCDR for extracting data from the registry. Finally, we sincerely thank the patients for participating in the survey.

Abbreviations

APEQ-DC, Adolescent Patient Experiences of Diabetes Care Questionnaire; PEQ-DC, Parent Experiences of Diabetes Care Questionnaire; NCDR, The Norwegian Childhood Diabetes Registry; NIPH, The Norwegian Institute of Public Health; EFA, Exploratory factor analysis.

Ethics Approval and Informed Consent

The study was approved by the Data Protection Authority at Oslo University Hospital. Registration in the NCDR is based on receiving written informed consent from the child (above 12 years of age) and/or the child’s parents. The consent form informs the patient and/or the parents that consent may result in requests to answer questionnaires on patient experiences. Returning the questionnaire constituted patient consent in the survey, which is the standard procedure in all national patient-experience surveys conducted by the NIPH. This study was outside the scope of formal ethical review in Norway.

Consent for Publication

Not applicable.

Data Sharing Statement

The datasets generated and/or analysed during the current study are not publicly available due to protection of personal data.

Author Contributions

All authors contributed to data analysis, drafting and revising the article, gave final approval of the version to be published, and agree to be accountable for all aspects of the work.

Disclosure

The authors report no conflicts of interest in this work.

Additional information

Funding

This study was supported by the Knowledge Centre at the Norwegian Institute of Public Health, the Norwegian Childhood Diabetes Registry and “Lillian and Werner Næss legat”. The Norwegian Childhood Diabetes Registry is funded by the South-Eastern Norway Regional Health Authority.