Detection of health deterioration in a COVID-19 patient at home: the potential of ambient sensor systems

The COVID-19 pandemic created increased interest in monitoring patients at home to allow timely recognition of health deteriorations. Hospital care is particularly demanding in these patients because of the necessity for isolation to avoid further spread of the disease. Therefore, home care is a preferred treatment setting for these patients. This is, to our knowledge, the first report indicating the potential of an affordable, contactless, and unobtrusive ambient sensor system for the detection of signs of health deterioration in a patient with COVID-19 by a caregiver from a distance. Prospective data acquisition and correlation of the data with clinical events were obtained from an 81-year-old senior with COVID-19 before and, in particular, over a period of 10 days prior to hospitalization. Clinical signs included weakness, increased respiration rate, sleep disturbances, and confusion. The visualization of a combination of this information on a dedicated dashboard allowed the caregiver to recognize a serious health deterioration that required a lifesaving hospitalization. The potential of such ambient sensor systems to detect signs of serious health deterioration in patients with COVID-19 opens new opportunities for use in asymptomatic or oligosymptomatic patients who live alone and are sent back to their homes for isolation in quarantine after diagnosis

Study protocol: young carers and young adult carers in Switzerland

Background: In Switzerland, the issue of young carers and young adult carers - young people under the age of 18 and 24 respectively, who take on significant or substantial caring tasks and levels of responsibility that would usually be associated with an adult - has not been researched before. The number of these younger carers is unknown, as is the extent and kind of their caring activities and the outcomes for their health, well-being, psycho-social development, education, transitions to adulthood, future employability and economic participation. Methods: The project is comprised of three stages: 1. A national Swiss-wide online survey to examine awareness of the issue of younger carers amongst professional populations in the education, health and social services sectors; 2. An online survey of 4800 Swiss pupils in schools using standardised instruments to identify the proportion and characteristics of pupils who are carers; and 3. Semi-structured interviews with 20 families comprising family members with care needs and younger carers, to consolidate and validate the other stages of the study; and to hear directly from care-dependent family members and younger carers about their experiences of the issues identified in the surveys and in previous published research. Discussion: The needs of younger carers and their ill and disabled family members in Switzerland have not been systematically investigated. This will be the first study in the country to investigate these issues and to develop evidence-based recommendations for policy and practice, drawing also on international research. The present study therefore fills an important national and international research gap. It will collect important data on the awareness, extent, kind and impact of caring amongst children and young people in Switzerland, and cross-link these findings with robust evidence from other countries. The study will reveal (a) the extent of awareness of the issue of young carers amongst medical, social, health, educational, and other groups in Switzerland; (b) the proportion and number of young carers amongst a normative child population, and what these young carers ‘do’ in terms of their caring roles; and (c) direct accounts by families of their care-giving and receiving experiences

Caring in mind? Professionals’ awareness of young carers and young adult carers in Switzerland

Findings from international research emphasis the need of these young people to be identified and recognised. Therefore, a nationwide quantitative study of professionals' awareness was conducted in the Swiss context. Data were collected from professionals working in education, healthcare and social services. The study examined professionals’ familiarity with the terms used to describe young people with caring responsibilities; their ability to identify the population in their professional context; their perception of the relevance of the issue; their ability to support them; and their own training needs. Potential study participants were contacted via email. Data were collected using an online survey, which was open for 14 weeks during the period of September to December 2016. Survey data from 2,311 professionals, who reported being regularly in contact with young people with caring responsibilities in their occupational context, were included for analysis. Of all terms presented in the survey, young carer (YC) was the term most familiar to all professionals. Among healthcare and education sector, the percentage of professionals familiar with this term was higher than that among professionals from social services. Professionals from social services were the most likely to consider the issue relevant to their work, those from education were the least likely. Professionals who were familiar with the terms describing YC were more likely to consider the issue relevant to their work. Study results showed that more than half of the respondents had not identified young people with caring responsibilities, and that the ability of participants to identify YC was related to their occupational sector. The perceived ability to support YC was related to their reported ability to recognise them. In order to enable professionals to support YC, raising awareness, providing training for professionals and a national network of existing organisations should be well considered

Identification of genetic variants associated with Huntington's disease progression: a genome-wide association study

Background Huntington's disease is caused by a CAG repeat expansion in the huntingtin gene, HTT. Age at onset has been used as a quantitative phenotype in genetic analysis looking for Huntington's disease modifiers, but is hard to define and not always available. Therefore, we aimed to generate a novel measure of disease progression and to identify genetic markers associated with this progression measure. Methods We generated a progression score on the basis of principal component analysis of prospectively acquired longitudinal changes in motor, cognitive, and imaging measures in the 218 indivduals in the TRACK-HD cohort of Huntington's disease gene mutation carriers (data collected 2008–11). We generated a parallel progression score using data from 1773 previously genotyped participants from the European Huntington's Disease Network REGISTRY study of Huntington's disease mutation carriers (data collected 2003–13). We did a genome-wide association analyses in terms of progression for 216 TRACK-HD participants and 1773 REGISTRY participants, then a meta-analysis of these results was undertaken. Findings Longitudinal motor, cognitive, and imaging scores were correlated with each other in TRACK-HD participants, justifying use of a single, cross-domain measure of disease progression in both studies. The TRACK-HD and REGISTRY progression measures were correlated with each other (r=0·674), and with age at onset (TRACK-HD, r=0·315; REGISTRY, r=0·234). The meta-analysis of progression in TRACK-HD and REGISTRY gave a genome-wide significant signal (p=1·12 × 10−10) on chromosome 5 spanning three genes: MSH3, DHFR, and MTRNR2L2. The genes in this locus were associated with progression in TRACK-HD (MSH3 p=2·94 × 10−8 DHFR p=8·37 × 10−7 MTRNR2L2 p=2·15 × 10−9) and to a lesser extent in REGISTRY (MSH3 p=9·36 × 10−4 DHFR p=8·45 × 10−4 MTRNR2L2 p=1·20 × 10−3). The lead single nucleotide polymorphism (SNP) in TRACK-HD (rs557874766) was genome-wide significant in the meta-analysis (p=1·58 × 10−8), and encodes an aminoacid change (Pro67Ala) in MSH3. In TRACK-HD, each copy of the minor allele at this SNP was associated with a 0·4 units per year (95% CI 0·16–0·66) reduction in the rate of change of the Unified Huntington's Disease Rating Scale (UHDRS) Total Motor Score, and a reduction of 0·12 units per year (95% CI 0·06–0·18) in the rate of change of UHDRS Total Functional Capacity score. These associations remained significant after adjusting for age of onset. Interpretation The multidomain progression measure in TRACK-HD was associated with a functional variant that was genome-wide significant in our meta-analysis. The association in only 216 participants implies that the progression measure is a sensitive reflection of disease burden, that the effect size at this locus is large, or both. Knockout of Msh3 reduces somatic expansion in Huntington's disease mouse models, suggesting this mechanism as an area for future therapeutic investigation

Young carers and young adult carers in Switzerland: Caring roles, ways into care and the meaning of communication

Although there is already general recognition of the fact that many relatives provide unpaid care for family members, there is still little awareness that children, adolescents and young adults under 25 also provide such care. Until recently, the situation of young carers and young adult carers, as those young persons are referred to in international research, has not been in the focus of professionals, research and the public in Switzerland. Between September 2015 and October 2016, 30 interviews in seven cantons were conducted with 16 young carers aged 10-17 and 14 young adult carers aged 18-25. The interviews were recorded, transcribed and analysed following a grounded theory approach. This paper now presents the first qualitative data on Swiss young carers and young adult carers. It explores their sociodemographic backgrounds, the nature and intensity of caring tasks they carry out, their pathways into caring as well as the role of communication with family members, extended family, professionals and peers. Our findings provide a first insight in the lives of young carers and young adult carers in Switzerland and illustrate, as well, the challenges they face

«You don't look for it» - A study of Swiss professionals' awareness of young carers and their sup-port needs

While political and public interest in providing support for family carers is growing, so called young carers and young adult carers-young persons under the ages of 18 and 25 respectively-mostly remain unrecognised. Yet, this vulnerable group is in need of special attention and support from professionals in order to get along with the situation of an ill family member and the caring duties they perform. This paper presents the results from a focus group study on the level of awareness among professionals from healthcare, education and social services concerning the topic of caring children, adolescents and young adults; and on the practice tools they consider necessary and helpful in order to support young carers and young adult carers. Twenty‐seven professionals from the German‐ and French‐speaking parts of Switzerland participated in five focus groups. The focus groups were recorded and transcribed verbatim, and the transcripts were analysed using qualitative content analysis. Our findings show that the professionals have a low level of awareness of the issue of young carers and young adult carers and also highlight the professionals' willingness to engage with the subject. The results also show that professionals consider that practice tools (such as standardised questionnaires and check lists) could be important devices in providing support for young carers and young adult carers. These tools could be helpful in identifying this group, enabling them to identify themselves as such, and would ensure that they received appropriate support

Ready and able? Professional awareness and responses to young carers in Switzerland

Background: The situation of children, adolescents, young adults with caring responsibilities and their families has only recently been addressed in the Swiss context. Initial findings show a low level of awareness among professionals towards young people with caring responsibilities, and also a lack of specific support services nationally for young carers. This might suggest that the support needs of young carers and young adult carers are not currently being recognised or met in Switzerland. Aim: The purpose of this analysis was to explore to what degree young carers' needs for support are currently met by professionals. We evaluated how professionals in Switzerland currently support young carers in their occupational context; what kind of organisations they refer young carers to; and if the current support approaches meet international recommendations (drawn from research and policy in other countries). Methods: Data from a cross-sectional online survey completed by 2142 professionals from education, healthcare and social services in Switzerland were analysed. The data included respondents' demographics, professional background, awareness of young carers' situations and circumstances, ability to support young carers, referrals to other organisations, as well as approaches to support young carers. We conducted text analysis of the open-ended answers according to Kuckartz (2014) as well as descriptive statistical analysis and Chi-Square independence tests. Results: Just over half (55.8%) of the professionals in our study reported being able to support young carers. Five different categories of support interventions were identified: counselling ; connecting with others ; emotional support ; including the family/network; and providing practical skills & illness-related knowledge . Professionals who reported that they themselves had a caring role when they were young were more likely to be able to support young carers ( p < .001 ). Professionals familiar with the term 'young carers' more often mentioned systemic support approaches (such as family-centred procedures and coordination/interdisciplinary cooperation) than those who were not familiar with the term. Conclusion: Study results show that many professionals in Switzerland address relevant realms and specific challenges for young people with caring responsibilities without being familiar with the experiences or needs of young carers. How they support young carers and young adult carers, perhaps surprisingly given their lack of awareness and specific knowledge, correspond with the main approaches currently found in the international literature recommendations for professionals working with young carers. The fact that systemic approaches of support were less often described, especially by professionals unfamiliar with the term 'young carer', raises the question whether appropriate sustainable and long-term support can be provided without having a clear understanding of the concept, experiences and specific needs of young carers. The study results provide a national starting point to develop support provisions and interventions for young carers. The results also offer relevant data for policy recommendations

Who are „Young Carers”? Analysis of the Use of the Term in German Speaking Countries and Development of a Definition / Wer sind Young Carers? Analyse der Begriffsverwendung im deutschsprachigen Raum und Entwicklung einer Definition

Children and adolescents with caring responsibility who are looking after a family member or a person close are often hiding from the view of the public. They are not well recognised from professionals from health care, education and social services. Several research as well as support programmes have been initiated within the last years. It became obvious that the term ‘young carers’ was translated in various ways into German and connected with different attributes. An integral understanding is yet of high relevance for the international dialogue as well as for the transfer from theory to practice