Do adolescents and emerging adults receive the diabetes care they truly need? A nationwide study of the quality of diabetes health care during the transition from paediatric to adult care.

AIMS: The aim of this study was to assess the paediatric and adult diabetes care provided to adolescents and young adults with childhood-onset type 1 diabetes during the transition. METHODS: This nationwide population-based cohort study included 776 individuals with type 1 diabetes who were last registered in the Norwegian Childhood Diabetes Registry (NCDR) between 2009 and 2012 and had received adult health care for at least 2 years. The patients' experiences were reported in a validated questionnaire. Clinical data from the annual registrations in the NCDR were coupled with data from the medical records in adult diabetes care. The longitudinal measures of glycaemic control were analysed using a growth mixture model. RESULTS: A total of 321 young people answered the questionnaire and provided written informed consent for the collection of their data from their medical records. The mean age at transfer was 18.0 years (range = 15.0-23.5 years), and the mean age at participation was 22.7 years (range = 20.9-26.7 years). Significant differences (p < 0.001) in patient experiences were found between paediatric and adult diabetes care in several areas: contact with health-care personnel, continuity of care, interval between consultations and overall satisfaction. Registry and medical records data confirmed the patient-reported experiences. The longitudinal analyses identified two groups with distinctly different trajectories of glycaemic outcome over time. Patient-provider continuity and perceived preparedness for transfer were the most influential predictors. CONCLUSIONS: This study highlights several areas to be addressed for improving health care and the transition to adult diabetes care in adolescents and young adults with type 1 diabetes, including provider continuity, individualised care and involvement of multidisciplinary teams.

Feedback reports to the general practitioner (GP) on the patients' experiences: are GPs interested, and is this interest associated with GP factors and patient experience scores?

BACKGROUND: Patient experience feedback is key in patient centred health systems, but empirical evidence of general practitioner (GP) interest in it is sparse. We aimed to: (i) quantitatively estimate the level of GP interest for feedback reports on patient experience; (ii) explore determinants of such interest; and (iii) examine potential association between a priori interest and patient experience. METHODS: The patient experience survey included maximum 300 randomly selected patients for each of 50 randomly selected GPs (response rate 41.4%, n = 5,623). GPs were sent a postal letter offering feedback reports and were grouped according to their replies: (i) interested in the report; (ii) not interested. Associations between interest and GP variables were assessed with Chi-square tests and multivariate logistic regression, while associations between interest and scores for 5 patient experiences scales were assessed with multilevel regression models. RESULTS: About half (n = 21; 45.7%) of the GPs showed interest in the report by asking to receive the report. The only GP variable associated with a priori interest was being a specialist in general practice (58.6% vs. 23.5% for those without) (P = 0.021). Interest was significantly associated with the practice patient experience scale (4.1 higher score compared with those not interested, P = 0.048). Interest in the report had small and nonsignificant associations with the remaining patient experience scales. CONCLUSIONS: Almost half of the GPs, and almost 3 in 5 of specialists in general practice, were interested in receiving a GP-specific feedback report on patient experiences. Interest in the report was generally not related to patient experience scores.

Patient experiences with general practitioners: psychometric performance of the generic PEQ-GP instrument among patients with chronic conditions.

BACKGROUND: Most generic patient experience instruments have not been validated specifically for persons with chronic health problems, even though they are the dominant user of GPs/family physicians. OBJECTIVES: To assess the psychometric properties of the generic Patient Experiences with GP Questionnaire (PEQ-GP) instrument (five scales: assessment of GP, coordination, patient enablement, accessibility, and practice) in persons with chronic conditions, and to develop a short version to maximize response rates and minimize respondent fatigue in future applications. METHODS: Secondary analysis of data from a national survey of patient experiences with general practitioners in 2018-2019 (response rate: 42.6%). The psychometric properties of PEQ-GP were assessed with exploratory factor analysis and Cronbach's alpha, supplemented with confirmatory factor analysis (CFA) and item response theory (IRT). A short version was constructed and evaluated based on item performance. RESULTS: Nine hundred and seventy persons reported a chronic condition(s), the most frequent being "musculoskeletal, arthritis, other back and joints" (n = 473, 48.8%). Factor analysis identified three scales with adequate psychometric results: GP (15 items; Cronbach's alpha: 0.96), practice (3 items; Cronbach's alpha: 0.87), and accessibility (2 items; Cronbach's alpha: 0.77). Evaluation of item performance identified a 7-item short version, including a 5-item GP scale with scores with strong concordance with the 15-item scale (Intraclass Correlation Coefficient: 0.97, P < 0.001). CONCLUSIONS: The generic PEQ-GP exhibits adequate psychometric performance for persons with chronic conditions. Three empirically derived PEQ-GP scales cover evaluation of the GP, accessibility, and practice. The 7-item short form minimize respondent burden, but further validation work is warranted before large-scale use.

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

AIM: To describe the development and validation of a questionnaire in a national Norwegian population-based cohort study designed to assess the experiences of young people with type 1 diabetes who had made the transition from paediatric to adult diabetes care. METHODS: The questionnaire was developed by the authors based on literature searches, focus group interviews, discussions with experts and cognitive interviews. We included 776 individuals with type 1 diabetes who were last registered in the Norwegian Childhood Diabetes Registry between 2009 and 2012 and had been receiving adult health care for at least 2 years. The data quality was analysed, factor analysis was performed, and the internal reliability, test-retest reliability and construct validity were determined. RESULTS: The response rate was 321 patients (41.4%); 57.6% were female, and the average age at recruitment was 22.9 ± 1.2 years. Seven factors were identified. Satisfactory evidence was provided for the internal consistency, reliability and construct validity of the questionnaire. All scales met the criterion of Cronbach's alpha above 0.4. The test-retest correlations ranged from 0.64 to 0.92. CONCLUSION: The thorough validation of the questionnaire proved satisfactory and indicated that it may be of value for further studies measuring patients' experiences with diabetes care and transition.

Do experiences with pregnancy, birth and postnatal care in Norway vary by the women's geographic origin? a comparison of cross-sectional survey results.

BACKGROUND: A national survey was conducted to measure and benchmark women's experiences with pregnancy, birth and postnatal care in Norway. The purpose of this secondary analysis is to explore potential variation in these experiences with regard to the survey respondents' geographic origin. METHODS: Data were collected in a national observational cross-sectional study, by a self-administered questionnaire and from registries. The questionnaire collects patient reported experience measures (PREMS) of mainly nontechnical aspects of the health-care services. While taking the clustered characteristics of the respondents into consideration, we compared the mean scores on 16 indexes between women of four different geographic origins using linear regression models. RESULTS: The origin of the 4904 respondents were classified as Norway (n = 4028, 82%), Western Europe, North-America, Oceania (n = 233, 5%), Eastern Europe (n = 290, 6%), and Asia, Turkey, Africa, and South-America) (n = 353, 7%). The observed differences were moderate, and no consistency was present in the results in respect of direction or magnitude of the differences between the groups. CONCLUSIONS: With some important cautions, we conclude that this study did not detect systematic differences between groups of different geographic origin, in their experiences with pregnancy and maternity care in Norway.

A questionnaire to measure women's experiences with pregnancy, birth and postnatal care: instrument development and assessment following a national survey in Norway.

BACKGROUND: The Norwegian authorities monitor the quality of public health-care services, including from the patients' perspective. The aim of this paper is to describe the development and psychometric properties of a pregnancy- and maternity-care patients' experiences questionnaire (PreMaPEQ). METHODS: The PreMaPEQ and data collection procedures were developed based on a literature review, reference group activities, user interviews, cognitive interviews and a pilot test. The PreMaPEQ was then used in a national survey that included a retest distribution. The participants were identified from the hospital records where the birth took place. The invitation to take part was sent by mail and the questionnaire was distributed in electronic (i.e. via the Internet) and (subsequently) paper forms. The completed questionnaires were assessed using descriptive statistics, explorative factor analyses, psychometric measures and confirmatory factor analysis (CFA). RESULTS: The PreMaPEQ response rate for the national sample was 56.6% (N = 4904), and retest data were provided by 123 women. Statistics and theoretical considerations were used to construct 16 scales, covering the following 4 phases of the care: pregnancy control (4 scales), the delivery (3 scales), the postnatal hospital stay (5 scales) and the services in the public health clinic (4 scales). All scales had a Cronbach's α of >0.7, and all but three scales had an intraclass correlation coefficient for test-retest stability of >0.700. CFA revealed a satisfactory fit between the questionnaire data and the model, with a four-factor solution of the care experiences with pregnancy, birth and postnatal care. CFA provided support for the suggested structures, and demonstrated that the first-order factors are indicators of a second-order factor. CONCLUSION: The PreMaPEQ appears to be an acceptable, valid and reliable tool for collecting women's experiences of the whole course of maternity care in health systems that have features in common with the Norwegian health system.

International health policy survey in 11 countries: assessment of non-response bias in the Norwegian sample.

BACKGROUND: International health policy surveys are used to compare and evaluate health system performance, but little is known about the effects of non-response. The objective of this study was to assess the effects of non-response in the Norwegian part of the Commonwealth Fund international health policy survey in 2009. METHODS: As part of an international health policy survey in 2009 a cross-sectional survey was conducted in Norway among a representative sample of Norwegian general practitioners. 1,400 randomly selected GPs were sent a postal questionnaire including questions about the Norwegian health care system, the quality of the GPs' own practice and the cooperation with specialist health care. The survey included three postal reminders and a telephone follow-up of postal non-respondents. The main outcome measures were increase in response rate for each reminder, the effects of demographic and practice variables on response, the effects of non-response on survey estimates, and the cost-effectiveness of each reminder. RESULTS: After three postal reminders and one telephone follow-up, the response rate was 59.1%. Statistically significant differences between respondents and non-respondents were found for three variables; group vs. solo practice (p = 0.01), being a specialist or not (p < 0.001) and municipality centrality (least central vs. most central, p = 0.03). However, demographic and practice variables had little association with five outcome variables and the overall survey estimates changed little with additional reminders. In addition, the cost-effectiveness of the final reminders was poor. CONCLUSIONS: The response rate in the Norwegian survey was satisfactory, and the effect of non-response was small indicating adequate representativeness. The cost-effectiveness of the final reminders was poor. The Norwegian findings strengthen the international project, but restrictions in generalizability warrant further study in other countries.

Rasch analysis of the Psychiatric Out-Patient Experiences Questionnaire (POPEQ).

BACKGROUND: The Psychiatric Out-Patient Experiences Questionnaire (POPEQ) is an 11-item core measure of psychiatric out-patients experiences of the perceived outcome of the treatment, the quality of interaction with the clinician, and the quality of information provision. The POPEQ was found to have evidence for reliability and validity following the application of classical test theory but has not previously been assessed by Rasch analysis. METHODS: Two national postal surveys of psychiatric outpatients took place in Norway in 2004 and 2007. The performance of the POPEQ, including item functioning and differential item functioning, was assessed by Rasch analysis. Principal component analysis of item residuals was used to assess the presence of subdimensions. RESULTS: 6,677 (43.3%) and 11,085 (35.2%) psychiatric out patients responded to the questionnaire in 2004 and 2007, respectively. All items in the scale were retained after the Rasch analysis. The resulting scale had reasonably good fit to the Rasch model. The items performed the same for the two survey years and there was no differential item functioning relating to patient characteristics. Principal component analysis of the residuals confirmed that the measure to a high degree is unidimensional. However, the data also reflects three potential subscales, each relating to one of the three included aspects of health care. CONCLUSIONS: The POPEQ had excellent psychometric properties and Rasch analysis further supported the construct validity of the scale by also identifying the three subdimensions originally included as components in the instrument development. The 11-item instrument is recommended in future research on psychiatric out-patient experiences. Future development may lead to the construction of more precise measures of the three subdomains that the POPEQ is based on.

Determinants of parents' experiences with outpatient child and adolescent mental health services.

BACKGROUND: Few studies have investigated how demographic, clinical and organizational characteristics influence parents' experiences with child and adolescent mental health services (CAMHS). The objective of this study was to determine the effects of these characteristics on parents' experiences using data from a large national postal survey. METHOD: A questionnaire was mailed to 17,871 parents or other primary caregivers whose children were attending 1 of the 86 outpatient CAMHS in Norway in 2006. Multiple regression analysis was used to explore the associations between demographic, clinical and organizational characteristics, and three scales of parents' experiences. RESULTS: The questionnaire was completed by 7906 parents (46%). Organizational characteristics such as involvement of the parents in treatment and accessibility to the clinic explained most of the variation in all three scales of parents' experiences. Although the effects of demographic and clinical characteristics of the children in some instances were statistically significant, they only accounted for a small amount of the total explained variance. CONCLUSION: Accessibility to the clinic and involvement of the parents in treatment are much stronger predictors of parental experiences with outpatient CAMHS than are demographic and clinical variables. Accessibility and involvement are at least partly influenced by the clinics themselves, and hence parental satisfaction may be enhanced by making the clinics more accessible and by involving the parents/caregivers in the treatment.