Patient-reported outcomes (PROs) are important in the healthcare system to gain understanding of patients' views on the effects of a treatment. There is an abundance of available patient-reported outcome measures (PROMs), both disease specific and generic. In the Swedish healthcare system, the national quality registers are obliged to incorporate PROs for certification at a high level. A review of the latest annual applications for funding (n = 108) shows that at present, 93 national quality registers include some form of PROM or patient-reported experience measure (PREM). Half of the registers include some type of generic measure, more than half include disease/symptom-specific measures, and around 40% include PREMs. Several different measures and combinations of measures are used, the most common of which are the EQ-5D, followed by the SF-36/RAND-36. About one-fifth of the registers report examples of how patient-reported data are used for local quality improvement. These examples include enhancing shared decision-making in clinical encounters (most common), as a basis for care plans, clinical decision aids and treatment guidelines, to improve the precision of indications for surgery (patient and healthcare professional assessments may differ), to monitor complications after the patient has left hospital and to improve patient information. In addition, funding applications reveal that most registers plan to extend their array of PROMs and PREMs in future, and to increase their use of patient-reported data as a basis for quality improvement.

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.

Lipofuscin accumulates in postmitotic cells. In human fibroblasts, accumulation of lipoftiscin as measured by cellular autofluorescence is exponential at first, but stops at a certain level. At the same time, cell death starts to decrease cell numbers significantly. Artificial lipofuscin-like material can be prepared by UV-crosslinking of mitochondria] preparations. This material is easily phagocytosed by human fibroblasts and results in an increased cellular lipofuscin accumulation. Such a forced lipofuscin accumulation is sufficient to block cellullar proliferation within a short time and to induce cell death as soon as the cellular lipofuscin autofluorescence reaches the same upper limit as that observed in senescent cells. It is concluded that accumulation of lipofuscin in postmitotic cells is not just an innocent consequence of ageing, but rather one amongst the important causes of senescence.

Background Despite a growing body of knowledge about eHealth innovations, there is still limited understanding of the implementation of such tools in everyday primary care. Objective The objective of our study was to describe health care staff’s experience with a digital communication system intended for patient-staff encounters via a digital route in primary care. Methods In this qualitative study we conducted 21 individual interviews with staff at 5 primary care centers in Sweden that had used a digital communication system for 6 months. The interviews were guided by narrative queries, transcribed verbatim, and subjected to content analysis. Results While the digital communication system was easy to grasp, it was nevertheless complex to use, affecting both staffing and routines for communicating with patients, and documenting contacts. Templates strengthened equivalent procedures for patients but dictated a certain level of health and digital literacy for accuracy. Although patients expected a chat to be synchronous, asynchronous communication was extended over time. The system for digital communication benefited assessments and enabled more efficient use of resources, such as staff. On the other hand, telephone contact was faster and better for certain purposes, especially when the patient’s voice itself provided data. However, many primary care patients, particularly younger ones, expected digital routes for contact. To match preferences for communicating to a place and time that suited patients was significant; staff were willing to accept some nuisance from a suboptimal service—at least for a while—if it procured patient satisfaction. A team effort, including engaged managers, scaffolded the implementation process, whereas being subjected to a trial without likely success erected barriers. Conclusions A digital communication system introduced in regular primary care involved complexity beyond merely learning how to manage the tool. Rather, it affected routines and required that both the team and the context were addressed. Further knowledge is needed about what factors facilitate implementation, and how. This study suggested including ethical perspectives on eHealth tools, providing an important but novel aspect of implementation.

BackgroundFood allergy is negatively associated with health-related quality of life (HRQL). Although differences exist between parents and children, less is known about age-specific differences amongst children. As such, we aimed to identify if age, as well as other factors, are associated with food allergy-specific HRQL in an objectively defined population of children.MethodsOverall, 63 children (boys: n = 36; 57.1%) with specialist-diagnosed food allergy to 1 + foods were included. Parents/guardians completed the Swedish version of a disease-specific questionnaire designed to assess overall- and domain-specific HRQL. Descriptive statistics and linear regression were used.ResultsThe most common food allergy was hen’s egg (n = 40/63; 63.5%). Most children had more than one food allergy (n = 48; 76.2%). Nearly all had experienced mild symptoms (e.g. skin; n = 56/63; 94.9%), and more than half had severe symptoms (e.g. respiratory; 39/63; 66.1%). Compared to young children (0–5 years), older children (6–12 years) had worse HRQL (e.g. overall HRQL: B = 0.60; 95% CI 0.05–1.16; p < 0.04.). Similarly, multiple food allergies, and severe symptoms were significantly associated with worse HRQL (all p < 0.05) even in models adjusted for concomitant allergic disease. No associations were found for gender or socioeconomic status.ConclusionOlder children and those with severe food allergy have worse HRQL.Electronic supplementary materialThe online version of this article (10.1186/s13601-019-0244-0) contains supplementary material, which is available to authorized users.