Elicitation of Norwegian EQ-5D-5L values for hypothetical and experience-based health states based on the EuroQol Valuation Technology (EQ-VT) protocol.

INTRODUCTION: Norway is one of several European countries that lacks a national value set and scoring algorithm for the EuroQol five dimensions (EQ-5D). Recent studies have found differences between countries in terms of health values or preferences for health states described by instruments such as the EQ-5D. The project aims to model a national value set for the five level version of the EQ-5D based on values elicited from a representative sample of the Norwegian adult general population in terms of region, age, sex and level of education. Using a sampling strategy supporting the collection of values for both hypothetical and experienced health states, the study will have the additional aim of assessing the feasibility of collecting experience-based values in accordance with the latest EQ-5D valuation study protocol, and comparing values with those given for hypothetical health states. METHODS AND ANALYSIS: Multistage random sampling and quota-sampling will contribute to representativeness. To increase the number of valuations of experienced health states, those with less than perfect health will be oversampled, increasing the total number of interviews from 1000 to 1300-1500. The most recent EQ-5D valuation protocol will be followed which includes computer assisted face-to-face, one-to-one interviews and use of composite time trade-off and discrete choice experiments. ETHICS AND DISSEMINATION: The study has been reviewed and found to be outside of the scope of the ethics committee and thus not in need of ethical approval. The study findings will be disseminated through peer-reviewed publications, conference presentations and summaries for key stakeholders and partners in the field. The scoring algorithms will be available for widely used statistical software.

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.

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.

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

BACKGROUND: Patient 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. METHODS: The 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. RESULTS: A 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. CONCLUSION: The 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.

Patients' Perspectives on Information and Communication About Sexual and Relational Issues in Rheumatology Health Care.

INTRODUCTION: Men and women with rheumatic diseases report a significantly negative impact on multiple areas of life, including sexuality. Research indicates that patients want to discuss sexual issues with health professionals (HPs) in rheumatology care but these issues are rarely addressed in consultations. AIM: The objective of the present study was to explore patients' experiences of communication with HPs about disease-related sexual issues, their perceptions of the relevance of these issues in rheumatology care and their preferences for how these topics should be handled. METHODS: A qualitative design was used and 18 semi-structured interviews were performed, including eight women and ten men with inflammatory rheumatic joint diseases, aged 29-62 years. The interviews were recorded and transcribed verbatim. Data were analysed thematically. RESULTS: Four main themes were derived from the interviews: (i) relevance of sexual issues; (ii) vital conditions for communication; (iii) individual preferences in mode and timing of information and communication; and (iv) benefits of information and communication. The participants expressed that, although sexual issues are relevant, necessary conditions for good communication are largely lacking. HPs' knowledge, experience and personal skills, as well as having sufficient time were essential. HPs lack of initiating sexual topics contributed to uncertainty about whether their sexual challenges were disease related and whether it was a legitimate topic to discuss in rheumatology care. CONCLUSION: Patients wanted HPs to possess knowledge about possible disease-related challenges in sexual life and intimate relationships, and to facilitate communication about these aspects. There is a need to develop practice guidelines to enable HPs to integrate sexual issues as an aspect of healthcare delivery in a patient-friendly manner. Copyright © 2016 John Wiley & Sons, Ltd.

Rheumatic diseases and sexuality: Disease impact and self-management strategies.

OBJECTIVE: To explore how intimate relationships and sexuality are influenced by rheumatic diseases and to describe self-management strategies used to manage disease consequences. METHODS: To ensure that data were grounded in patients' language and experiences, individual and focus group interviews were conducted. Purposeful sampling was used to ensure variation in age, sex, disease duration, diagnosis, and marital status among the informants. Participants were men and women ages 18 years or older, were diagnosed with inflammatory rheumatic disease by a rheumatologist, and had a disease duration of ≥2 years. RESULTS: The mean age of the 23 participants was 44 years, the mean disease duration was 13.6 years, and the mean ± SD modified Health Assessment Questionnaire score was 1.58 ± 0.46. Four key themes summarized the main issues described by the informants: between disease and normality, relational aspects, disease-related sexual challenges, and self-management strategies. The results reveal that the disease constituted a disruption in life, requiring a new orientation of sexual identity and relationship. Participants' experiences of sexuality went beyond specific sexual activity, including aspects such as body image and relational issues, illustrating a multidimensional perception of sexuality. A large inter- and intrapersonal variety of impact and a wide range of management strategies were reported. CONCLUSION: This study shows that sexuality is a vital area of life for people living with arthritis. It is a source of physical pleasure and intimacy with their partner, but may cause anxiety and distress when affected by rheumatic disease. However, various self-management strategies are applied to enhance intimate relationships and sexual activity. Knowledge and openness concerning sexual issues need to be emphasized as part of the competence of health professionals and researchers.