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Factors That Patients Consider in Their Choice of Non-Surgical Management for Hip and Knee Osteoarthritis: Formative Qualitative Research for a Discrete Choice Experiment
ConclusionKey factors were identified that patients considered when making decisions about non-surgical management for their osteoarthritis that will be used to inform a discrete choice experiment (DCE) that aims to measure preferences for these factors. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - March 16, 2022 Category: International Medicine & Public Health Source Type: research

A Comparison of Caregiver and Patient Preferences for Treating Duchenne Muscular Dystrophy
ConclusionsCaregivers and patients had concordant preferences for treating Duchenne. Providers and regulators can trust both caregiver and patient report of preferences to inform medical decision making. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - March 4, 2022 Category: International Medicine & Public Health Source Type: research

Family Experiences with Care for Children with Inherited Metabolic Diseases in Canada: A Cross-Sectional Survey
ConclusionsWhile caregivers ’ satisfaction with care for children with inherited metabolic diseases was high, we identified gaps in family-centered care and factors contributing to negative experiences that are important to consider in the future development of strategies to improve pediatric care for inherited metabolic dis eases. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - February 27, 2022 Category: International Medicine & Public Health Source Type: research

Exploring Symptom Fluctuations and Triggers in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Using Novel Patient-Centred N-of-1 Observational Designs: A  Protocol for a Feasibility and Acceptability Study
This study aims to explore the feasibility and acceptability of using novel patient-centred N-of-1 observational designs to explore symptom fluctuations and triggers in ME/CFS at the individual level.Methods and AnalysisIndividuals with a medical diagnosis of ME/CFS will be recruited through ME/CFS patient organisations to participate in a series of patient-centred N-of-1 observational studies. Using a wrist-worn electronic diary, participants will complete ecological momentary assessments of fatigue, stress, mood, and cognitive demand, three times per day for a period of 6 –12 weeks. Personally relevant symptoms and tri...
Source: The Patient - Patient-Centered Outcomes Research - February 27, 2022 Category: International Medicine & Public Health Source Type: research

Understanding Attributes that Influence Physician and Caregiver Decisions About Neurotechnology for Pediatric Drug-Resistant Epilepsy: A Formative Qualitative Study to Support the Development of a Discrete Choice Experiment
This study reports formative qualitative research used to analyze decision making regarding neurotechnological interventions for pediatric drug-resistant epilepsy from the perspective of physicians and caregivers and the derivation of attributes for a discrete choice experiment.MethodsPurposive and convenience sampling was used to recruit physicians and caregivers. Physician focus group sessions were held at key national conferences in the USA and Canada. Caregivers were approached through clinics with established epilepsy surgery programs in the USA and Canada. Thematic analysis was used to identify critical features of d...
Source: The Patient - Patient-Centered Outcomes Research - February 27, 2022 Category: International Medicine & Public Health Source Type: research

Preference Paths and Their Kaizen Tasks for Small Samples
ConclusionThis paper demonstrates the feasibility of a stated-preference study that estimates 20 main effects using path evidence from 20 respondents (16 kaizen tasks, 15-min interviews). This approach shows promise for future application in stated-preference research, particularly in small samples. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - February 27, 2022 Category: International Medicine & Public Health Source Type: research

Identifying Unmet Care Needs and Important Treatment Attributes in the Management of Hidradenitis Suppurativa: A Qualitative Interview Study
ConclusionsCurrent HS treatments and care processes leave patients and HCPs with a high level of unmet need. It is critical to consider patients ’ and HCPs’ perspectives when designing appropriate HS care as perceived unmet needs differ. Further quantitative preference elicitation studies are needed to assess the trade-offs between important care needs and treatment attributes. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - February 27, 2022 Category: International Medicine & Public Health Source Type: research

Unexpected Outcomes of Measuring Decision Regret: Using a Breast Cancer Decision-Making Case Example
AbstractShared decision making can help patients feel supported and empowered when deciding between healthcare options. Decision regret can be a meaningful measure of the quality of that encounter. However, in a patient-engaged research study examining shared decision making for breast cancer surgery, decision regret was a difficult construct to assess, and asking questions about decision regret caused the patient to experience that emotion upon reflection. In this article, we consider the complexity of decision regret, and discuss the difficulty of measuring that emotion through existing instruments. We call for clarity i...
Source: The Patient - Patient-Centered Outcomes Research - February 27, 2022 Category: International Medicine & Public Health Source Type: research

Understanding Attributes that Influence Physician and Caregiver Decisions About Neurotechnology for Pediatric Drug-Resistant Epilepsy: A Formative Qualitative Study to Support the Development of a Discrete Choice Experiment
This study reports formative qualitative research used to analyze decision making regarding neurotechnological interventions for pediatric drug-resistant epilepsy from the perspective of physicians and caregivers and the derivation of attributes for a discrete choice experiment.MethodsPurposive and convenience sampling was used to recruit physicians and caregivers. Physician focus group sessions were held at key national conferences in the USA and Canada. Caregivers were approached through clinics with established epilepsy surgery programs in the USA and Canada. Thematic analysis was used to identify critical features of d...
Source: The Patient - Patient-Centered Outcomes Research - February 24, 2022 Category: International Medicine & Public Health Source Type: research

Exploring the Comparability of Face-to-Face Versus Video Conference-Based Composite Time Trade-Off Interviews: Insights from EQ-5D-Y-3L Valuation Studies in Belgium and Spain
ConclusionsNo evidence suggested that the quality of cTTO data is reduced when using videoconferencing compared with face-to-face interviews. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - February 16, 2022 Category: International Medicine & Public Health Source Type: research

Determinants of Health Preferences Using Data from the Egyptian EQ-5D-5L Valuation Study
ConclusionAge, sex and marital status are the main determinants of health state valuation in the Egyptian population, a finding consistent with those from other countries. Knowing these factors will help tailor health services provided and improve patient-centered care. (Source: The Patient - Patient-Centered Outcomes Research)
Source: The Patient - Patient-Centered Outcomes Research - February 14, 2022 Category: International Medicine & Public Health Source Type: research