ObjectiveTo investigate patients’ preferences for outcomes associated with psychoactive medications.Setting/designSystematic review of stated preference studies. No settings restrictions were applied.Participants/eligibility criteriaWe included studies containing quantitative data regarding the relative value adults with mental disorders place on treatment outcomes. Studies with high risk of bias were excluded.Primary and secondary outcome measuresWe restricted the scope of our review to preferences for outcomes, including the consequences from, attributes of, and health states associated with particular medications or medication classes, and process outcomes.ResultsAfter reviewing 11 215 citations, 16 studies were included in the systematic review. These studies reported the stated preferences from patients with schizophrenia (n=9), depression (n=4), bipolar disorder (n=2) and attention deficit hyperactive disorder (n=1). The median sample size was 81. Side effects and symptom outcomes outnumbered functioning and process outcomes. Severe disease and hospitalisation were reported to be least desirable. Patients with schizophrenia tended to value disease states as higher and side effects as lower, compared to other stakeholder groups. In depression, the ability to cope with activities was found to be more important than a depressed mood, per se. Patient preferences could not consistently be predicted from demographic or disease variables. Only a limited number of potentially important outcomes had been investigated. Benefits to patients were not part of the purpose in 9 of the 16 studies, and in 10 studies patients were not involved when the outcomes to present were selected.ConclusionsInsufficient evidence exists on the relative value patients with mental disorders place on medication-associated outcomes. To increase patient-centredness in decisions involving psychoactive drugs, further research—with outcomes elicited from patients, and for a larger number of conditions—should be undertaken.Trial registration numberPROSPERO CRD42013005685.

BackgroundConducting systematic reviews is time-consuming but crucial to construct evidence-based patient decision aids, clinical practice guidelines and decision analyses. New methods might enable developers to produce a knowledge base more rapidly. However, trading off scientific rigour for speed when creating a knowledge base is controversial, and the consequences are insufficiently known. We developed and applied faster methods including systematic reviews and network meta-analyses, assessed their feasibility and compared them to a gold standard approach. We also assessed the feasibility of using decision analysis to perform this comparison.MethodsLong-term treatment in bipolar disorder was our testing field. We developed two new methods: an empirically based, rapid network meta-analysis (NMA) and an expert NMA, and conducted a patient survey. We applied these methods to collect effect estimates for evidence-based treatments on outcomes important to patients. The relative importance of outcomes was obtained from patients using a stated preference method. We used multi-criteria decision analysis to compare a gold standard NMA with the rapid NMA in terms of the ability of the gold standard NMA to change the ranking and expected values of treatments for individual patients.ResultsUsing rapid methods, it was feasible to identify evidence addressing outcomes important to patients. We found that replacing effect estimates from our rapid NMA with estimates from the gold standard NMA resulted in relatively small changes in the ranking and expected value of treatments. The rapid method sufficed to estimate the effects of nine out of ten options. To produce a ranking of treatments accurate for more than 95% of patients, it was necessary to supplement systematic with rapid methods and to use relative importance weights in the analysis. Integrating estimates of the outcome “treatment burden” had a larger impact on rankings than replacing rapid with gold standard methods. Using patients’ importance weights only modestly affected results.ConclusionsThe transfer of knowledge to practice could benefit from faster systematic reviewing methods. The results in this preliminary assessment suggest that an improved rapid NMA approach might replace gold standard NMAs. Decision analysis could be used to compare evidence summarisation methods.Electronic supplementary materialThe online version of this article (10.1186/s13643-018-0829-z) contains supplementary material, which is available to authorized users.

The WES-10 appears to measure four clinically meaningful subscales. It seems well suited for use in further research and for evaluation of clinical milieus.

Patients' preferences for outcomes in the long-term treatment of bipolar disorder vary considerably. To advance patient-centered healthcare, we propose that researchers, clinical guideline producers, and patient-clinician dyads integrate a taxonomy of patient-important outcomes, such as constructed in this study, when assessing treatment options.

Norway has traditionally high standards regarding civil rights particularly emphasizing equal access to societal resources including health care. This background and the health care system's centralized national organization make it perfectly suited for implementation of shared decision making (SDM). In recent years, great efforts have been made by policy- makers, regional health authorities and not least the patients to facilitate a process of change in health communication culture. SDM is currently even given highest priority in health care strategies on all system levels. SDM has been structurally implemented, e.g. by including corresponding guidance in the standard patient pathways. Moreover, SDM is established as an element of service on the national health portal hosting a constantly increasing number of decision aids. Essentially the Norwegian Knowledge Center for Health Services contributes by searching and providing information for use in decision aids. Implementation is now being rolled out unit by unit for a list of medical problems as a series production of SDM using decision aids and health professional training. Importantly, production of SDM begins and succeeds as a soundly structured communication with both clinical environments and patients. However, as communication training has not been implemented before now, there are no data demonstrating sufficient realization of SDM in current health care. Beyond making reasonable use of scientific achievements, the Norwegian movement's secret of success is the simultaneous commitment of all actors of the health system to a common idea.

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BackgroundPeople with bipolar disorder often experience ill health and have considerably reduced life expectancies. Suboptimal treatment is common and includes a lack of effective medicines, overtreatment, and non-adherence to medical interventions and lifestyle measures. E- and m-health applications support patients in optimizing their treatment but often exhibit conceptual and technical shortcomings. The objective of this work was to develop and test the usability of a system targeting suboptimal treatment and compare the service to other genres and strategies.MethodsBased on the frameworks of shared decision-making, multi-criteria decision analysis, and single-subject research design, we interviewed potential users, reviewed research and current approaches, and created a first version using a rapid prototyping framework. We then iteratively improved and expanded the service based on formative usability testing with patients, healthcare providers, and laypeople from Norway, the UK, and Ukraine. The evidence-based health-optimization system was developed using systematic methods. The System Usability Scale and a questionnaire were administered in formative and summative tests. A comparison of the system to current standards for clinical practice guidelines and patient decision aids was performed.ResultsSeventy-eight potential users identified 82 issues. Driven by user feedback, the limited first version was developed into a more comprehensive system. The current version encompasses 21 integrated core features, supporting 6 health-optimization strategies. One crucial feature enables patients and clinicians to explore the likely value of treatments based on mathematical integration of self-reported and research data and the patient’s preferences. The mean ± SD (median) system usability score of the patient-oriented subsystem was 71 ± 18 (73). The mean ± SD (median) system usability score in the summative usability testing was 78 ± 18 (75), well above the norm score of 68. Feedback from the questionnaire was generally positive. Eighteen out of 23 components in the system are not required in international standards for patient decision aids and clinical practice guidelines.ConclusionWe have developed the first evidence-based health-optimization system enabling patients, clinicians, and caregivers to collaborate in optimizing the patient’s health on a shared platform. User tests indicate that the feasibility of the system is acceptable.Electronic supplementary materialThe online version of this article (doi:10.1186/s12911-017-0481-x) contains supplementary material, which is available to authorized users.

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