<p>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</p>

Abstract

PurposePatient-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 MethodsThe 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.ResultsThe 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.ConclusionThe 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.

Patient-reported experiences with general practitioners: a randomised study of mail and web-based approaches following a national survey

“…The results are consistent with a number of previous studies reporting that mail surveys achieve higher response rates than electronic and web-based approaches. [2][3][4][5][6][7][8][9][10][11] A recent Consumer Assessment of Healthcare Providers and Systems survey produced similar results when comparing protocols based on web responses via an email invitation and mail. 7 The mail protocol yielded more than twice the response rate of the web approach.…”

“…Open access indicate that web mode surveys have lower response rates than other modes. [2][3][4][5][6][7][8][9][10][11] In the national patient experience survey among patients visiting GPs in 2014 in Norway, only 18% of respondents answered electronically. 4 However, the potential advantages of lower costs and shorter data-collection periods are important arguments for performing further research into web-based surveys.…”

Young people’s advisory groups in health research: scoping review and mapping of practices

“…The corresponding authors of all 27 studies were contacted; 21 authors replied. From these, 15 of the 21 studies confirmed they included a YPAG [13][14][15][16][17][18][19][20][21][22][23][24][25][26][27] ; the remaining 6 either did not use a YPAG (n=3) [28][29][30] or had YPAG members who were all aged over 18 years (n=3). 31,32,33 For the six studies where authors did not respond, we assumed a YPAG was used based on information provided in the paper.…”

“…The identified studies that used a YPAG covered a range of topics such as cyberbullying, 14 supporting young people in their decision to join a clinical trial, 24 sexual health, 18,22,25 exploring novel mental health treatment options, 13,20 healthy eating interventions, 26 and treatment for conditions such as arthritis 15 and diabetes. 27 All but two of the studies were conducted in high income countries. 25,38 In terms of level and type of involvement, YPAG contribution was identified across all different phases of the research process, but most commonly in the research design phase (Figure 2).…”

Reliability And Validity of The Psychiatric Inpatient Patient Experience Questionnaire – Continuous Electronic Measurement (PIPEQ-CEM)

“…Most of the items on experience were scored on a 5-point response scale ranging from 1 ("not at all") to 5 ("to a very large extent"). The 5-point response scale was chosen by the NIPH to be consistently applied in the surveys, making it possible to compare over time, and to some extent between different healthcare user groups [7,9,[12][13][14]. Most questionnaires addressing patient experiences have used items with scales where each point has a descriptor [15].…”