One-third of the RA patients reported that their health status considerably influenced their sexual activity. Higher levels of fatigue, mental distress, functional limitations, lower levels of self-efficacy, and male gender were independently associated with perceived problems with sexual activity.

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 interand 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.

Although HPs regarded sexuality as a relevant topic in rheumatic health care, they seldom raised the topic in consultations. Those with further education in sexuality addressed sexual issues more frequently and felt more comfortable. Correspondingly, the majority of respondents requested more education. Such training should be part of the basic HPs' education, as well as part of postgraduate courses.

IntroductionNorway 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 analysisMultistage 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 disseminationThe 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.

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.