Patient-Important Outcomes in the Long-Term Treatment of Bipolar Disorder: A Mixed-Methods Approach Investigating Relative Preferences and a Proposed Taxonomy

Eiring, Øystein; Nylenna, Magne; Nytrøen, Kari

doi:10.1007/s40271-015-0128-x

Cited by 22 publications

(20 citation statements)

References 33 publications

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“…We performed an analysis of personalization in current patient decision aids [35], reviewed existing solutions, performed focus group interviews eliciting users’ needs [36] and reviewed current MCDA-based decision dashboards [37–39]. …”

Section: Methodsmentioning

confidence: 99%

“…First, we used patient input to create descriptions of outcomes [36, 41]. Ratings for all treatment options were then calculated from estimates in a network meta-analysis and from surveys conducted by the research team among patients and clinical experts [42].…”

Section: Methodsmentioning

confidence: 99%

“…Descriptions of options included contraindications and were developed from summaries of product characteristics (SPCs) and the drug database MicroMedix. Descriptions of bipolar disorder, the decisions targeted in the system, and shared decision-making incorporated patients’ views from the focus groups, all processes described in detail elsewhere [36]. The texts were reviewed by patients and clinicians and refined in multiple iterations.…”

Section: Methodsmentioning

confidence: 99%

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The development and feasibility of a personal health-optimization system for people with bipolar disorder

Eiring

Nytrøen

Kienlin

et al. 2017

BMC Med Inform Decis Mak

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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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Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

Section: Methodsmentioning

confidence: 99%

See 1 more Smart Citation

The development and feasibility of a personal health-optimization system for people with bipolar disorder

Eiring

Nytrøen

Kienlin

et al. 2017

BMC Med Inform Decis Mak

Self Cite

View full text Add to dashboard Cite

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“…Despite recognition that patients and the public have a legitimate and requisite role in the design and conduct of health research, the extent to which this occurs is less clear 7 8. Two systematic reviews7 9 of outcome measures in clinical trials suggest that they are predominantly selected by clinicians and researchers.…”

Section: Introductionmentioning

confidence: 99%

Parents’ prioritised outcomes for trials investigating treatments for paediatric severe infection: a qualitative synthesis

et al. 2019

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ObjectiveTo identify parents’ prioritised outcomes by combining qualitative findings from two trial feasibility studies of interventions for paediatric suspected severe infection.DesignQualitative synthesis combining parent interview data from the Fluids in Shock (FiSh) and Fever feasibility studies. Parents had experience of their child being admitted to a UK emergency department or intensive care unit with a suspected infection.Participantsn=: 85 parents. FiSh study: n=41 parents, 37 mothers, 4 fathers, 7 were bereaved. Fever study: n=44 parents, 33 mothers, 11 fathers, 7 were bereaved.ResultsIn addition to survival, parents prioritised short-term outcomes including: organ and physiological functioning (eg, heart rate, breathing rate and temperature); their child looking and/or behaving more like their normal self; and length of time on treatments or mechanical support. Longer term prioritised outcomes included effects of illness on child health and development. We found that parents’ prioritisation of outcomes was influenced by their experience of their child’s illness, survival and the point at which they are asked about outcomes of importance in the course of their child’s illness.ConclusionsFindings provide insight into parent prioritised outcomes to inform the design of future trials investigating treatments for paediatric suspected or proven severe infection as well as core outcome set development work.

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“…Long-term pharmacological treatment is generally recommended [ 3 ]. More than 40 treatments and 141 treatment outcomes are potentially relevant [ 4 , 5 ].…”

Section: Introductionmentioning

confidence: 99%

Rapid methods including network meta-analysis to produce evidence in clinical decision support: a decision analysis

et al. 2018

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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.

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Patient-Important Outcomes in the Long-Term Treatment of Bipolar Disorder: A Mixed-Methods Approach Investigating Relative Preferences and a Proposed Taxonomy

Cited by 22 publications

References 33 publications

The development and feasibility of a personal health-optimization system for people with bipolar disorder

The development and feasibility of a personal health-optimization system for people with bipolar disorder

Parents’ prioritised outcomes for trials investigating treatments for paediatric severe infection: a qualitative synthesis

Rapid methods including network meta-analysis to produce evidence in clinical decision support: a decision analysis

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