Objective 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. Methods Purposive 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 decisions about treatment outcomes, procedural trade-offs, values, and concerns surrounding conventional and novel pediatric drug-resistant epilepsy interventions among physicians and caregivers. ResultsThe results highlight the presence of central attributes that are considered by both groups in decision making, such as "chances of seizure freedom", "risk", "availability of evidence", and "cost to families", as well as attributes that reflect important differences between groups. Physicians were focused on the specifics of treatment options, while caregivers thought more holistically, considering the overall well-being of their children. Discussion The findings shaped the development of a discrete choice experiment to understand the likely uptake of different neurotechnologies. We identified differences in decision making and thus designed two discrete choice experiments to elicit preferences for pediatric drug-resistant epilepsy treatments, one aimed at clinicians and one at caregivers. The variation we observed highlights the value of seeking to understand the influences at the point of clinical decision making and incorporating this information into care.
Background: The use of face masks as a public health approach to limit the spread of coronavirus disease 2019 (COVID-19) has been the subject of debate. One major concern has been the spread of misinformation via social media channels about the implications of the use of face masks. We assessed the association between social media as the main COVID-19 information source and perceived effectiveness of face mask use. Methods: In this survey in six sub-Saharan African countries (Botswana, Kenya, Malawi, Nigeria, Zambia and Zimbabwe), respondents were asked how much they agreed that face masks are effective in limiting COVID-19. Responses were dichotomised as ‘agree’ and ‘does not agree’. Respondents also indicated their main information source including social media, television, newspapers, etc. We assessed perceived effectiveness of face masks, and used multivariable logistic models to estimate the association between social media use and perceived effectiveness of face mask use. Propensity score (PS) matched analysis was used to assess the robustness of the main study findings. Results Among 1988 respondents, 1169 (58.8%) used social media as their main source of information, while 1689 (85.0%) agreed that face masks were effective against COVID-19. In crude analysis, respondents who used social media were more likely to agree that face masks were effective compared with those who did not [odds ratio (OR) 1.29, 95% confidence interval (CI): 1.01–1.65]. This association remained significant when adjusted for age, sex, country, level of education, confidence in government response, attitude towards COVID-19 and alternative main sources of information on COVID-19 (OR 1.33, 95%CI: 1.01–1.77). Findings were also similar in the PS-matched analysis. Conclusion: Social media remains a viable risk communication channel during the COVID-19 pandemic in sub-Saharan Africa. Despite concerns about misinformation, social media may be associated with favourable perception of the effectiveness of face masks.
Background In 2011, the province of British Columbia (BC) moved to allow patients with complex rheumatic disease to be seen by nurses along with their rheumatologist by introducing a ‘Multidisciplinary Care Assessments’ (MCA) billing code (G31060). Objective To describe multidisciplinary care introduced as part of MCAs across BC and investigate the perceived impact of this intervention, the addition of nurses to the care team, on patient care from the perspective of patients, nurses, and rheumatologists. Methods We conducted semi-structured interviews, informed by a qualitative evaluation approach with patients, nurses, and rheumatologists from September 2019 – August 2020. Interviews investigated 1) the experiences of all stakeholders with adopting the multidisciplinary care billing code, 2) the perceived role of the nurse in the care team, and 3) the perceived impact of multidisciplinary care on patient experience and outcomes. We purposefully sampled practices for maximum variation of geographical location (rural vs. urban), size of practice (i.e., patient caseload), and number of nurses employed. Results We interviewed 21 patients, 13 nurses, and 12 rheumatologists from across BC. Our analysis identified variation in the way rheumatologists adopted multidisciplinary care across BC. Our analysis showed some heterogeneity in the way the MCA was delivered in rheumatology practices; however, patient education was identified as the core role of nurses across practices. We identified six core themes describing the impact of this model of care, all representing improvements in the way practices functioned, from improved efficiency to access, patient experience, time management, clinician experience, and patient health outcomes. Contextual factors that influenced the presence of these themes were related to the time the nurses spent with patients and the professional roles they performed. Conclusion Our results suggest nurse care can complement physician care by extending contact time for patients and promoting the efficient use of health care professionals’ skills, time, and resources. These data may encourage future uptake of the billing code to help ensure the policy delivers maximum benefits to patients given the wide range of perceived benefits described by clinicians and patients.
Objective Novel and minimally invasive neurotechnologies offer the potential to reduce the burden of epilepsy while avoiding the risks of conventional resective surgery. Few neurotechnologies have been tested in randomized controlled trials with pediatric populations, leaving clinicians to face decisions about whether to recommend these treatments with insufficient evidence about the relevant risks and benefits. This study specifically explores the preferences of clinicians for treating pediatric drug‐resistant epilepsy (DRE) with novel neurotechnologies. Methods A discrete‐choice experiment (DCE) was designed to elicit the preferences of clinicians with experience in treating children with DRE using novel neurotechnological interventions. The preferences for six key attributes used when making treatment decisions (chances of clinically significant improvement in seizures, major and minor risks from intervention, availability of evidence, financial burden for the family, and access to the intervention) were estimated using a conditional logit model. The estimates from this model were then used to predict the adoption of existing novel neurotechnological interventions. Results Sixty‐eight clinicians completed the survey: 33 neurosurgeons, 28 neurologists, and 7 other clinicians. Most clinicians were working in the United States (74%), and the remainder (26%) in Canada. All attributes, apart from the nearest location with access to the intervention, influenced preferences significantly. The chance of clinically significant improvement in seizures was the most positive influence on clinician preferences, but low‐quality evidence and a higher risk of major complications could offset these preferences. Of the existing neurotechnological interventions, vagus nerve stimulation was predicted to have the highest likelihood of adoption; deep brain stimulation had the lowest likelihood of adoption. Significance The preferences of clinicians are drive primarily by the likelihood of achieving seizure freedom for their patients, but preferences for an intervention are largely eradicated if only low quality of evidence supporting the intervention is available. Until better evidence supporting the use of potentially effective, novel neurotechnologies becomes available, clinicians are likely to prefer more established treatments.
Background Patients with heart failure (HF) can be affected by disabling symptoms and low quality of life. Furthermore, they may frequently need to visit the emergency department or be hospitalized due to their condition deteriorating. Home telemonitoring can play a role in tracking symptoms, reducing hospital visits, and improving quality of life. Objective Our objective was to conduct a feasibility study of a home health monitoring (HHM) solution for patients with HF in British Columbia, Canada, to prepare for conducting a randomized controlled trial. Methods Patients with HF were recruited from 3 urban hospitals and provided with HHM technology for 60 days of monitoring postdischarge. Participants were asked to monitor their weight, blood pressure, and heart rate and to answer symptomology questions via Bluetooth sensors and a tablet computer each day. A monitoring nurse received this data and monitored the patient’s condition. In our evaluation, the primary outcome was the combination of unscheduled emergency department revisits of discharged participants or death within 90 days. Secondary outcomes included 90-day hospital readmissions, patient quality of life (as measured by Veterans Rand 12-Item Health Survey and Kansas City Cardiomyopathy Scale), self-efficacy (as measured by European Heart Failure Self-Care Behaviour Scale 9), end-user experience, and health system cost-effectiveness including cost reduction and hospital bed capacity. In this feasibility study, we also tested the recruitment strategy, clinical protocols, evaluation framework, and data collection methods. Results Seventy participants were enrolled into this trial. Participant engagement to monitoring was measured at 94% (N=70; ie, data submitted 56/60 days on average). Our evaluation framework allowed us to collect sound data, which also showed encouraging trends: a 79% reduction of emergency department revisits post monitoring, an 87% reduction in hospital readmissions, and a 60% reduction in the median hospital length of stay (n=36). Cost of hospitalization for participants decreased by 71%, and emergency department visit costs decreased by 58% (n=30). Overall health system costs for our participants showed a 56% reduction post monitoring (n=30). HF-specific quality of life (Kansas City Cardiomyopathy Scale) scores showed a significant increase of 101% (n=35) post monitoring (P<.001). General quality of life (Veterans Rand 12-Item Health Survey) improved by 19% (n=35) on the mental component score (P<.001) and 19% (n=35) on the physical component score (P=.02). Self-efficacy improved by 6% (n=35). Interviews with participants revealed that they were satisfied overall with the monitoring program and its usability, and participants reported being more engaged, educated, and involved in their self-management. Conclusions Results from this small-sample feasibility study suggested that our HHM intervention can be beneficial in supporting patients post discharge. Additionally, key insights from the trial allowed us to refine our methods and procedures, such as shifting our recruitment methods to in-patient wards and increasing our scope of data collection. Although these findings are promising, a more rigorous trial design is required to test the true efficacy of the intervention. The results from this feasibility trial will inform our next step as we proceed with a randomized controlled trial across British Columbia. Trial Registration ClinicalTrials.gov NCT03439384; https://clinicaltrials.gov/ct2/show/NCT03439384
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