BackgroundThe Short Form 36-Item Survey is one of the most commonly used instruments for assessing health-related quality of life. Two identical versions of the original instrument are currently available: the public domain, license free RAND-36 and the commercial SF-36.RAND-36 is not available in Swedish. The purpose of this study was threefold: to translate and culturally adapt the RAND-36 into Swedish; to evaluate its reliability and responsiveness using Svensson’s method for paired ordered categorical data; and to assess the usability of an electronic version of the questionnaire.The translation process included forward and backward translations and reconciliation. Test-retest reliability was examined during a period of two-weeks in 84 patients undergoing dialysis for chronic kidney disease. Responsiveness was examined in 97 patients before and 2 months after a cardiac rehabilitation program. Usability tests and cognitive debriefing of the electronic questionnaire were carried out with 18 patients.ResultsThe Swedish translation of the RAND-36 was conceptually equivalent to the English version. Test-retest reliability was supported by non-significant relative position (RP) values among dialysis patients for all RAND-36 subscales (range − 0.02 to 0.10; all confidence intervals (CI) included zero). Responsiveness was demonstrated by significant improvements in RP values among cardiac rehabilitation patients for all subscales (range 0.22–0.36; lower limits of all CI > 0.1) except two subscales (General health, RP -0.02; CI -0.13 to 0.10; and Role functioning/emotional, RP 0.03; CI -0.09 to 0.16). In cardiac rehabilitation patients, sizable individual variation (RV > 0.2) was also shown for the Pain, Energy/fatigue and Social functioning subscales.The electronic version of RAND-36 was found easy and intuitive to use.ConclusionsOur results provide evidence supporting the reliability and responsiveness of the newly translated Swedish RAND-36 and the user-friendliness of the electronic version. Svensson’s method for paired ordinal data was able to characterize not only the direction and size of differences among the patients’ responses at different time points but also variations in response patterns within groups. The method is therefore, besides being suitable for ordinal data, also an important and novel tool for gaining insights into patients’ response patterns to treatment or interventions, thus informing individualized care.

Background: Although patient participation is strongly associated with high quality of healthcare, valid means to measure and report a comprehensive notion of patient participation are scarce. The Patient Preferences for Patient Participation (4Ps) is a new healthcare practice and research tool, comprising patients' preferences as well as experiences. The 4Ps employs 12 items for the patient to conceptualise patient participation. The aim of this paper is to describe how the two perspectives of patient participation, namely preferences and experiences, can be combined to visualise and report preference-based patient participation. Methods: With four response alternatives in each section, the 4Ps offers sixteen possible combinations of degree of match per item. Theoretical and clinical principles fostered a tentative order of six ranks and three levels of preference-based patient participation. To test the standard, statistical analyses for ordinal data were performed, using data from a randomised controlled trial evaluating an intervention aiming to improve patient participation. Further, structures for visualising the preference-based patient participation of individuals and groups were suggested. Results: Data from the 4Ps demonstrated the individuals' preference-based patient participation, indicating either a match or a mismatch for each item. Mismatches represented either the experience of participation surpassing the patient's preferences, or the patient's preferences for patient participation not being established. At group level, the suggested approach for visualising and reporting the 4Ps demonstrated that the intervention group had a significantly higher proportion of sufficient preference-based patient participation for certain items than the control group. These results had not been identified earlier, when using the preferences and experiences of patient participation as separate measures.

BackgroundPaediatric cancer care poses ethically difficult situations that can lead to value conflicts about what is best for the child, possibly resulting in moral distress. Research on moral distress is lacking in paediatric cancer care in Sweden and most questionnaires are developed in English. The Moral Distress Scale-Revised (MDS-R) is a questionnaire that measures moral distress in specific situations; respondents are asked to indicate both the frequency and the level of disturbance when the situation arises. The aims of this study were to translate and culturally adapt the questionnaire to the context of Swedish paediatric cancer care. In doing so we endeavoured to keep the content in the Swedish version as equivalent to the original as possible but to introduce modifications that improve the functional level and increase respondent satisfaction.MethodsThe procedure included linguistic translation and cultural adaptation of MDS-R’s paediatric versions for Physicians, Nurses and Other Healthcare Providers to the context of Swedish paediatric cancer care. The process of adjustment included: preparation, translation procedure and respondent validation. The latter included focus group and cognitive interviews with healthcare professionals in paediatric cancer care.ResultsTo achieve a Swedish version with a good functional level and high trustworthiness, some adjustments were made concerning design, language, cultural matters and content. Cognitive interviews revealed problems with stating the level of disturbance hypothetically and items with negations caused even more problems, after having stated that the situation never happens.ConclusionsTranslation and cultural adaptation require the involvement of various types of specialist. It is difficult to combine the intention to keep the content as equivalent to the original as possible with the need for modifications that improve the functional level and increase respondent satisfaction. The translated and culturally adapted Swedish MDS-R seems to have equivalent content as well as improved functional level and respondent satisfaction. The adjustments were made to fit paediatric cancer care but it could be argued that the changes are relevant for most areas of paediatric care of seriously ill patients.

Response rates in surveys have declined in many countries over the last decade.Reasons for refusal by non-respondents have been discussed in many studies but less attention has been paid to motivation among respondents who do take part.One theoretical framework for studying motivation is self-determination theory, which distinguishes between extrinsic and intrinsic motivation. This article describes respondents' experiences of participating in a self-administered healthrelated survey. Experiences of respondent satisfaction and respondent burden were related to extrinsic or intrinsic motivation for participation in surveys. Qualitative content analysis was used to analyse data from semi-structured telephone

Background Due to extended indications and resynchronization therapy, many