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 [β = –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 [β = 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

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

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.peer-reviewe

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

Incidence and outcome of acquired demyelinating syndromes in Dutch children: update of a nationwide and prospective study

Introduction: Acquired demyelinating syndromes (ADS) are immune-mediated demyelinating disorders of the central nervous system in children. A nationwide, multicentre and prospective cohort study was initiated in the Netherlands in 2006, with a reported ADS incidence of 0.66/100,000 per year and MS incidence of 0.15/100,000 per year in the period between 2007 and 2010. In this study, we provide an update on the incidence and the long-term follow-up of ADS in the Netherlands. Methods: Children < 18 years with a first attack of demyelination were included consecutively from January 2006 to December 2016. Diagnoses were based on the International Paediatric MS study group consensus criteria. Outcome data were collected by neurological and neuropsychological assessments, and telephone call assessments. Results: Between 2011 and 2016, 55/165 of the ADS patients were diagnosed with MS (33%). This resulted in an increased ADS and MS incidence of 0.80/100,000 per year and 0.26/100,000 per year, respectively. Since 2006 a total of 243 ADS patients have been included. During follow-up (median 55 months, IQR 28–84), 137 patients were diagnosed with monophasic disease (56%), 89 with MS (37%) and 17 with multiphasic disease other than MS (7%). At least one form of residual deficit including cognitive impairment was observed in 69% of all ADS patients, even in monophasic ADS. An Expanded Disability Status Scale score of ≥ 5.5 was reached in 3/89 MS patients (3%). Conclusion: The reported incidence of ADS in Dutch children has increased since 2010. Residual deficits are common in this group, even in monophasic patients. Therefore, long-term follow-up in ADS patients is warranted

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

Tele-epilepsie

In het project Succesvol ondernemen met eHealth wordt gewerkt aan effectieve, hanteerbare en geaccepteerde benaderingen voor het realiseren van evidence voor vernieuwende eHealth oplossingen. Om een eHealth-innovatie ingebed te krijgen in de zorg moet, afhankelijk van de context en het type zorg, een innovatieroute worden gekozen. De partijen langs deze route (de stakeholders) hebben elk hun eigen belangen bij de innovatie. Ze zullen overtuigd moeten worden met argumenten (vaak onderbouwd met evidence) die aansluiten bij hun belangen. In een eerder rapport, Inventarisatie eHealth innovatieroutes en evidence, (SomeHealth deliverable D1) is dit in detail uiteengezet. In het voor u liggende rapport worden deze inzichten toegepast in een specifieke casus: het Tele-Epilepsie project van UMC Utrecht, Pontes Medical, SEIN en Kempenhaeghe. Meer informatie over de gevolgde aanpak en de reultaten vindt u in de management summary op pagina 5

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