Effect of Patient Support Groups for Hypertension on Blood Pressure among Patients with and Without Multimorbidity: Findings from a Cohort Study of Patients on a Home-Based Self-Management Program in Kenya.

Introduction: Patient support group interventions have been widely used to manage chronic diseases in Kenya. However, the potential benefits of these groups on patient health outcomes, and how this is influenced by multimorbidity, have not been rigorously evaluated. Objective: We assessed the effect of a patient support group intervention on blood pressure (BP) management and the potential moderating effect of multimorbidity among low- and middle-income patients with hypertension in Kenya. Methods: We analysed data from a non-randomized, quasi-experimental study of 410 patients with hypertension on a home-based self-management program conducted from September 2019 to September 2020. The program included the formation and participation in patient support groups. Using a modified STEPS questionnaire, data were collected on BP, anthropometry and other measurements at enrolment and after 12 months of follow-up. Multimorbidity was defined as the simultaneous presence of hypertension and at least one or more related conditions with similar pathophysiology (concordant multimorbidity) or unrelated chronic conditions (discordant multimorbidity). Propensity score (PS) weighting was used to adjust for baseline differences among 243 patients who participated in the support groups and 167 who did not. We estimated the effects of patient support groups and moderating effects of multimorbidity on BP management using multivariable ordinary linear regression weighted by PS. Findings: Participation in support groups significantly reduced systolic BP by 5.4 mmHg compared to non-participation in the groups [ß = -5.4; 95% CI -1.9 to -8.8]. However, among participants in the support group intervention, the mean systolic BP at follow-up assessment for those with concordant multimorbidity was 8.8 mmHg higher than those with no multimorbidity [ß = 8.8; 95% CI 0.8 to 16.8]. Conclusion: Although patient support groups are potentially important adjuncts to home-based self-care, multimorbidity attenuates their effectiveness. There is a need to tailor patient support group interventions to match the needs of the people living with multimorbidity in low- and middle-income settings in Kenya.

Framework for Managing the COVID-19 Infodemic: Methods and Results of an Online, Crowdsourced WHO Technical Consultation.

BACKGROUND: An infodemic is an overabundance of information-some accurate and some not-that occurs during an epidemic. In a similar manner to an epidemic, it spreads between humans via digital and physical information systems. It makes it hard for people to find trustworthy sources and reliable guidance when they need it. OBJECTIVE: A World Health Organization (WHO) technical consultation on responding to the infodemic related to the coronavirus disease (COVID-19) pandemic was held, entirely online, to crowdsource suggested actions for a framework for infodemic management. METHODS: A group of policy makers, public health professionals, researchers, students, and other concerned stakeholders was joined by representatives of the media, social media platforms, various private sector organizations, and civil society to suggest and discuss actions for all parts of society, and multiple related professional and scientific disciplines, methods, and technologies. A total of 594 ideas for actions were crowdsourced online during the discussions and consolidated into suggestions for an infodemic management framework. RESULTS: The analysis team distilled the suggestions into a set of 50 proposed actions for a framework for managing infodemics in health emergencies. The consultation revealed six policy implications to consider. First, interventions and messages must be based on science and evidence, and must reach citizens and enable them to make informed decisions on how to protect themselves and their communities in a health emergency. Second, knowledge should be translated into actionable behavior-change messages, presented in ways that are understood by and accessible to all individuals in all parts of all societies. Third, governments should reach out to key communities to ensure their concerns and information needs are understood, tailoring advice and messages to address the audiences they represent. Fourth, to strengthen the analysis and amplification of information impact, strategic partnerships should be formed across all sectors, including but not limited to the social media and technology sectors, academia, and civil society. Fifth, health authorities should ensure that these actions are informed by reliable information that helps them understand the circulating narratives and changes in the flow of information, questions, and misinformation in communities. Sixth, following experiences to date in responding to the COVID-19 infodemic and the lessons from other disease outbreaks, infodemic management approaches should be further developed to support preparedness and response, and to inform risk mitigation, and be enhanced through data science and sociobehavioral and other research. CONCLUSIONS: The first version of this framework proposes five action areas in which WHO Member States and actors within society can apply, according to their mandate, an infodemic management approach adapted to national contexts and practices. Responses to the COVID-19 pandemic and the related infodemic require swift, regular, systematic, and coordinated action from multiple sectors of society and government. It remains crucial that we promote trusted information and fight misinformation, thereby helping save lives.

Multimodal nocturnal seizure detection in a residential care setting: A long-term prospective trial.

OBJECTIVE: To develop and prospectively evaluate a method of epileptic seizure detection combining heart rate and movement. METHODS: In this multicenter, in-home, prospective, video-controlled cohort study, nocturnal seizures were detected by heart rate (photoplethysmography) or movement (3-D accelerometry) in persons with epilepsy and intellectual disability. Participants with >1 monthly major seizure wore a bracelet (Nightwatch) on the upper arm at night for 2 to 3 months. Major seizures were tonic-clonic, generalized tonic >30 seconds, hyperkinetic, or others, including clusters (>30 minutes) of short myoclonic/tonic seizures. The video of all events (alarms, nurse diaries) and 10% completely screened nights were reviewed to classify major (needing an alarm), minor (needing no alarm), or no seizure. Reliability was tested by interobserver agreement. We determined device performance, compared it to a bed sensor (Emfit), and evaluated the caregivers' user experience. RESULTS: Twenty-eight of 34 admitted participants (1,826 nights, 809 major seizures) completed the study. Interobserver agreement (major/no major seizures) was 0.77 (95% confidence interval [CI] 0.65-0.89). Median sensitivity per participant amounted to 86% (95% CI 77%-93%); the false-negative alarm rate was 0.03 per night (95% CI 0.01-0.05); and the positive predictive value was 49% (95% CI 33%-64%). The multimodal sensor showed a better sensitivity than the bed sensor (n = 14, median difference 58%, 95% CI 39%-80%, p < 0.001). The caregivers' questionnaire (n = 33) indicated good sensor acceptance and usability according to 28 and 27 participants, respectively. CONCLUSION: Combining heart rate and movement resulted in reliable detection of a broad range of nocturnal seizures.

Multimodal, automated detection of nocturnal motor seizures at home: Is a reliable seizure detector feasible?

Objective: Automated seizure detection and alarming could improve quality of life and potentially prevent sudden, unexpected death in patients with severe epilepsy. As currently available systems focus on tonic-clonic seizures, we want to detect a broader range of seizure types, including tonic, hypermotor, and clusters of seizures. Methods: In this multicenter, prospective cohort study, the nonelectroencephalographic (non-EEG) signals heart rate and accelerometry were measured during the night in patients undergoing a diagnostic video-EEG examination. Based on clinical video-EEG data, seizures were classified and categorized as clinically urgent or not. Seizures included for analysis were tonic, tonic-clonic, hypermotor, and clusters of short myoclonic/tonic seizures. Features reflecting physiological changes in heart rate and movement were extracted. Detection algorithms were developed based on stepwise fulfillment of conditions during increases in either feature. A training set was used for development of algorithms, and an independent test set was used for assessing performance. Results: Ninety-five patients were included, but due to sensor failures, data from only 43 (of whom 23 patients had 86 seizures, representing 402 h of data) could be used for analysis. The algorithms yield acceptable sensitivities, especially for clinically urgent seizures (sensitivity = 71-87%), but produce high false alarm rates (2.3-5.7 per night, positive predictive value = 25-43%). There was a large variation in the number of false alarms per patient. Significance: It seems feasible to develop a detector with high sensitivity, but false alarm rates are too high for use in clinical practice. For further optimization, personalization of algorithms may be necessary.

Non-EEG based ambulatory seizure detection designed for home use: What is available and how will it influence epilepsy care?

OBJECTIVE: This study aimed to (1) evaluate available systems and algorithms for ambulatory automatic seizure detection and (2) discuss benefits and disadvantages of seizure detection in epilepsy care. METHODS: PubMed and EMBASE were searched up to November 2014, using variations and synonyms of search terms "seizure prediction" OR "seizure detection" OR "seizures" AND "alarm". RESULTS: Seventeen studies evaluated performance of devices and algorithms to detect seizures in a clinical setting. Algorithms detecting generalized tonic-clonic seizures (GTCSs) had varying sensitivities (11% to 100%) and false alarm rates (0.2-4/24 h). For other seizure types, detection rates were low, or devices produced many false alarms. Five studies externally validated the performance of four different devices for the detection of GTCSs. Two devices were promising in both children and adults: a mattress-based nocturnal seizure detector (sensitivity: 84.6% and 100%; false alarm rate: not reported) and a wrist-based detector (sensitivity: 89.7%; false alarm rate: 0.2/24 h). SIGNIFICANCE: Detection of seizure types other than GTCSs is currently unreliable. Two detection devices for GTCSs provided promising results when externally validated in a clinical setting. However, these devices need to be evaluated in the home setting in order to establish their true value. Automatic seizure detection may help prevent sudden unexpected death in epilepsy or status epilepticus, provided the alarm is followed by an effective intervention. Accurate seizure detection may improve the quality of life (QoL) of subjects and caregivers by decreasing burden of seizure monitoring and may facilitate diagnostic monitoring in the home setting. Possible risks are occurrence of alarm fatigue and invasion of privacy. Moreover, an unexpectedly high seizure frequency might be detected for which there are no treatment options. We propose that future studies monitor benefits and disadvantages of seizure detection systems with particular emphasis on QoL, comfort, and privacy of subjects and impact of false alarms.

What makes a good home-based nocturnal seizure detector? A value sensitive design.

A device for the in-home detection of nocturnal seizures is currently being developed in the Netherlands, to improve care for patients with severe epilepsy. It is recognized that the design of medical technology is not value neutral: perspectives of users and developers are influential in design, and design choices influence these perspectives. However, during development processes, these influences are generally ignored and value-related choices remain implicit and poorly argued for. In the development process of the seizure detector we aimed to take values of all stakeholders into consideration. Therefore, we performed a parallel ethics study, using "value sensitive design." Analysis of stakeholder communication (in meetings and e-mail messages) identified five important values, namely, health, trust, autonomy, accessibility, and reliability. Stakeholders were then asked to give feedback on the choice of these values and how they should be interpreted. In a next step, the values were related to design choices relevant for the device, and then the consequences (risks and benefits) of these choices were investigated. Currently the process of design and testing of the device is still ongoing. The device will be validated in a trial in which the identified consequences of design choices are measured as secondary endpoints. Value sensitive design methodology is feasible for the development of new medical technology and can help designers substantiate the choices in their design.

Using photoplethysmography in heart rate monitoring of patients with epilepsy.

Heart rate is a useful neurophysiological sign when monitoring seizures in patients with epilepsy. In an ambulatory setting, heart rate is measured with ECG involving electrodes on the skin. This method is uncomfortable which is burdensome for patients and is sensitive to motion artifacts, which decrease the usability of measurements. In this study, green light photoplethysmography, an optical technique arising from the fitness industry, was evaluated for usefulness in a medical setting. Simultaneous overnight measurements of HR with a commercially available optical heart rate (OHR) sensor and with ECG (HRECG) were performed in 7 patients with epilepsy. Overall, there was no significant difference between OHR and HRECG in random 10-minute periods during wakefulness (p=0.69) and sleep (p=1.00). The Bland-Altman analysis showed negligible mean differences. Limits of agreement were higher during wakefulness and during the occurrence of two seizures possibly because of less reliable HRECG measurements due to motion artifacts. Optical heart rate seems less sensitive to these motion artifacts, and measurements are more user-friendly. The optical heart rate sensor may fill the gap of systems for ambulatory heart rate monitoring and can be especially useful in the context of seizure detection in patients with epilepsy.

Divergent motor projections from the pedunculopontine nucleus are differentially regulated in Parkinsonism.

The pedunculopontine nucleus (PPN) is composed of neurons with different connectivity patterns that express different neurochemical markers, display distinct firing characteristics and are topographically organized in functional domains across its rostro-caudal axis. Previous reports have shown that the caudal region of the PPN is interconnected with motor regions of both the basal ganglia and brainstem/medulla. The co-distribution of ascending and descending motor outputs raises the question as to whether the PPN provides a coordinated or differential modulation of its targets in the basal ganglia and the medulla. To address this, we retrogradely labeled neurons in the two main PPN pathways involved in motor control and determined whether they project to one or both structures, their neurochemical phenotype, and their activity in normal and dopamine depleted rats, as indicated by Egr-1 expression. We show that ascending and descending motor pathways from the PPN arise largely from separate neurons that intermingle in the same region of the PPN, but have a distinct neurochemical composition and are differentially regulated in the Parkinsonian state. Thus, neurons projecting to the subthalamic nucleus consist of cholinergic, calbindin- and calretinin-expressing neurons, and Egr-1 is upregulated following a 6-hydroxydopamine lesion. In contrast, a larger proportion of neurons projecting to the gigantocellular nucleus are cholinergic, none express calbindin and the expression of Egr-1 is not changed by the dopamine lesion. Our results suggest that ascending and descending motor connections of the PPN are largely mediated by different sets of neurons and there are cell type-specific changes in Parkinsonian rats.

Coping style and health-related quality of life in caregivers of epilepsy patients.

Epilepsy has a significant impact on health-related quality of life (HRQOL) of patients and personal coping style is an important determinant. Less is known about home caregivers. This study investigates HRQOL and coping style of both patients and caregivers and their interaction. Epilepsy patients attending the outpatient clinic of the University Medical Centre in Utrecht and their caregivers were sent EQ5D and RAND-36 questionnaires. The Utrecht Coping List was used to chart personal coping styles. HRQOL scores of patients and caregivers were compared to the general Dutch population. The association between patient and caregiver HRQOL scores was calculated. A stepwise backward multivariate linear regression analysis was used to explain variances in caregiver HRQOL. Eighty-six couples (49%) returned all questionnaires. Caregiver HRQOL scores were comparable to the general Dutch population (EQ5D: 0.88-0.88; p = 0.90, RAND-36 MCS: -2 points; p = 0.16), while patients HRQOL scores were lower (EQ5D: 0.79; p < 0.01, RAND-36 MCS -10 points; p < 0.01). However, on several specific domains, associations between patient and caregiver HRQOL scores within couples were found. Passive coping style explained 50% of variation in HRQOL scores of caregivers. As a group, caregivers of epilepsy patients have normal HRQOL, but there are significant associations between patient and caregiver HRQOL scores. Improving caregiver HRQOL through interventions on coping style might benefit patients as well. Recognizing personal coping styles of both patient and caregiver should be part of a patient-oriented approach in treatment.

Coping style and quality of life in patients with epilepsy: a cross-sectional study.

Having epilepsy has a large impact on one's well-being, but often seizure frequency and severity do not explain self-reported quality of life. We hypothesized that one's personal coping style is more important. In this study, 105 patients attending the outpatient neurological clinic at the University Medical Centre in Utrecht, the Netherlands, with a diagnosis of partial epilepsy, aged 17-80 years, completed questionnaires. Demographic information, disease characteristics, health-related quality of life (HRQoL), and coping styles were obtained by postal-validated HRQoL questionnaires: the EQ5D and RAND-36 and the Utrecht Coping List. A passive coping style explained 45% of the variance in the mental component of HRQoL and was more important than 'objective' seizure-related measures. Confounders such as employment, gender, and side-effects of treatment explained another 6%. Passive coping style also influenced the physical component of the HRQoL, but here seizure-related factors predominated. Overall, epilepsy patients showed a more avoiding coping style, and female patients a less active coping style and more reassuring thoughts, compared to the Dutch population. The personal coping style of patients appears to be more important than seizure-related measures in predicting mental aspects of quality of life. Coping style characteristics rather than disease characteristics should guide clinical decision-making in patients with epilepsy. Further studies should investigate the effect on HRQoL of behavioral interventions to improve coping.