A Smart Health Platform for Measuring Health and Well-Being Improvement in People With Dementia and Their Informal Caregivers: Usability Study.

BACKGROUND: Dementia is a neurodegenerative chronic condition characterized by a progressive decline in a person's memory, thinking, learning skills, and the ability to perform activities of daily living. Previous research has indicated that there are many types of technology interventions available in the literature that have shown promising results in improving disease progression, disease management, and the well-being of people with dementia (PwD) and their informal caregiver, thus facilitating dementia care and living. Technology-driven home care interventions, such as Connected Health (CH), could offer a convenient and low-cost alternative to traditional home care, providing an informal caregiver with the support they may need at home while caring for a PwD, improving their physical and mental well-being. OBJECTIVE: This study aimed (1) to create a multidimensional profile for evaluating the well-being progression of the PwD-informal caregiver dyad for a year during their use of a CH platform, designed for monitoring PwD and supporting their informal caregivers at home, and (2) to conduct a long-term follow-up using the proposed well-being profile at different time-interval evaluations. METHODS: The PwD-informal caregiver well-being profile was created based on the World Health Organization International Classification of Functioning considering the following outcomes: functional status, cognitive status, and quality of life for the PwD and mental well-being, sleeping quality, and burden for the informal caregiver. Over a year, comprehensive assessments of these outcomes were conducted every 3 months to evaluate the well-being of PwD-informal caregivers, using international and standardized validated questionnaires. Participants' demographic information was analyzed using descriptive statistics and presented as means and SDs. A nonparametric Friedman test was used to analyze the outcome changes and the progression in the PwD-caregiver dyads and to determine if those changes were statistically significant. RESULTS: There were no significant changes in the well-being of PwD or their caregivers over the year of follow-up, with the majority of the PwD-caregiver dyads remaining stable. The only instances in which significant changes were observed were the functional status in the PwD and sleep quality in their caregivers. In each of these measures, post hoc pairwise comparisons did not indicate that the changes observed were related to the deployment of the CH platform. CONCLUSIONS: The follow-up of this population of PwD and their informal caregivers has shown that disease progression and physical and mental well-being do not change significantly during the time, being a slow and gradual process. The well-being profile created to analyze the potential impact of the CH platform on the PwD-informal caregiver dyad well-being, once validated, could be used as a future tool to conduct the same analyses with other CH technologies for this population. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.2196/13280.

Factors Influencing the Adoption of Smart Health Technologies for People With Dementia and Their Informal Caregivers: Scoping Review and Design Framework.

BACKGROUND: Smart Health technologies (s-Health technologies) are being developed to support people with dementia (PwD) and their informal caregivers at home, to improve care and reduce the levels of burden and stress they experience. However, although s-Health technologies have the potential to facilitate this, the factors influencing a successful implementation in this population are still unknown. OBJECTIVE: The aim of this study was to review existing literature to explore the factors influencing PwD and their informal caregivers' adoption of s-Health technologies for home care. METHODS: Following the Arksey and O'Malley methodology, this study is a scoping review providing a narrative description of the scientific literature on factors influencing s-Health technology adoption for PwD and their informal caregivers. A search was conducted using PubMed, the Cochrane library, the IEEE library, and Scopus. Publications screening was conducted by 2 researchers based on inclusion criteria, and full-text analysis was then conducted by 1 researcher. The included articles were thematically analyzed by 2 researchers to gain an insight into factors influencing adoption that PwD and their informal caregivers have to encounter when using s-Health technologies. Relevant information was identified and coded. Codes were later discussed between the researchers for developing and modifying them and for achieving a consensus, and the researchers organized the codes into broader themes. RESULTS: Emerging themes were built in a way that said something specific and meaningful about the research question, creating a list of factors influencing the adoption of s-Health technologies for PwD and their informal caregivers, including attitudinal aspects, ethical issues, technology-related challenges, condition-related challenges, and identified gaps. A design framework was created as a guide for future research and innovation in the area of s-Health technologies for PwD and their informal caregivers: DemDesCon for s-Health Technologies. DemDesCon for s-Health Technologies addresses 4 domains to consider for the design and development of s-Health technologies for this population: cognitive decline domain, physical decline domain, social domain, and development domain. CONCLUSIONS: Although s-Health technologies have been used in health care scenarios, more work is needed for them to fully achieve their potential for use in dementia care. Researchers, businesses, and public governments need to collaborate to design and implement effective technology solutions for PwD and their informal caregivers, but the lack of clear design guidelines seems to be slowing the process. We believe that the DemDesCon framework will provide them with the guidance and assistance needed for creating meaningful devices for PwD home care and informal caregivers, filling a much-needed space in the present knowledge gap.

Development of a Caregivers' Support Platform (Connected Health Sustaining Home Stay in Dementia): Protocol for a Longitudinal Observational Mixed Methods Study.

BACKGROUND: Dementia disease is a chronic condition that leads a person with dementia (PwD) into a state of progressive deterioration and a greater dependence in performing their activities of daily living (ADL). It is believed nowadays that PwDs and their informal caregivers can have a better life when provided with the appropriate services and support. Connected Health (CH) is a new technology-enabled model of chronic care delivery where the stakeholders are connected through a health portal, ensuring continuity and efficient flow of information. CH has demonstrated promising results regarding supporting informal home care and Aging in Place, and it has been increasingly considered by researchers and health care providers as a method for dementia home care management. OBJECTIVE: This study aims to describe the development and implementation protocol of a CH platform system to support informal caregivers of PwDs at home. METHODS: This is a longitudinal observational mixed methods study where quantitative and qualitative data will be combined for determining the utility of the CH platform for dementia home care. Dyads, consisting of a PwD and their informal caregiver living in the community, will be divided into 2 groups: the intervention group, which will receive the CH technology package at home, and the usual care group, which will not have any CH technology at all. Dyads will be followed up for 12 months during which they will continue with their traditional care plan, but in addition, the intervention group will receive the CH package for their use at home during 6 months (months 3 to 9 of the yearly follow-up). Further comprehensive assessments related to the caregiver's and PwD's emotional and physical well-being will be performed at the initial assessment and at 3, 6, 9, and 12 months using international and standardized validated questionnaires and semistructured individual interviews. RESULTS: This 3-year funded study (2016-2019) is currently in its implementation phase and is expected to finish by December 2019. We believe that CH can potentially change the PwD current care model, facilitating a proactive and preventive model, utilizing self-management-based strategies, and enhancing caregivers' involvement in the management of health care at home for PwDs. CONCLUSIONS: We foresee that our CH platform will provide knowledge and promote autonomy for the caregivers, which may empower them into greater control of the care for PwDs, and with it, improve the quality of life and well-being for the person they are caring for and for themselves through a physical and cognitive decline predictive model. We also believe that facilitating information sharing between all the PwDs' care stakeholders may enable a stronger relationship between them, facilitate a more coordinated care plan, and increase the feelings of empowerment in the informal caregivers. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/13280.

The impact of health literacy on health outcomes in individuals with chronic pain: a cross-sectional study.

OBJECTIVE: To establish if health literacy (HL) is linked to poorer outcomes and behaviours in patients with chronic pain. DESIGN: A prospective cross-sectional observational study. SETTING: Multidisciplinary out-patient pain clinics in three university teaching hospitals. PATIENTS: New patients (n=131) referred to the pain clinic with a history of chronic pain (>12 weeks). METHODS: A questionnaire was distributed to chronic pain patients attending their first appointment. Those eligible for inclusion were newly referred patients who had pain lasting longer than three months. The questionnaire comprised the following sections: demographics, chronic pain status and disease-related knowledge, quality of life (SF-36), beliefs (Beliefs About Pain Control Questionnaire), and a validated HL tool (Newest Vital Sign). RESULTS: Of the 131 participants recruited, 54% had inadequate HL. The group was subsequently stratified according to HL level. In bivariate analysis, inadequate HL was associated with older age (p<0.001), being unemployed or retired (p=0.005), less education (p<0.001), lower income, increased comorbidities (p=0.038), being less likely to utilise allied health services (p=0.001), poorer disease-related knowledge (p=0.002), and poorer beliefs about pain (p<0.05). In multivariate analysis, disease-related knowledge (OR 2.5, 95%CI 1.0 to 6.3, p=0.05) and beliefs about pain (B=-2.3, S.E=0.9, p=0.01) remained independently associated with HL. CONCLUSION: Inadequate HL is prevalent in chronic pain patients, and may impact on the development of certain characteristics necessary for effective self-management.

An investigation of healthcare utilization and its association with levels of health literacy in individuals with chronic pain.

OBJECTIVE: Chronic pain patients are frequent and recurrent users of health services, which may have an impact on levels of health literacy (HL). Therefore, the aim of the present study was to investigate associations between healthcare utilization and varying levels of HL in individuals with and without chronic pain. METHODS: A cross-sectional questionnaire was distributed in three pain clinics in Dublin, Ireland, comprising a demographic section, a validated HL assessment tool (Newest Vital Sign) and self-reported healthcare utilization in the previous year (i.e., general practitioner [GP] visits, accident and emergency room attendance, hospital services and allied health services). Patients with chronic pain, and a control group (no pain) were recruited. RESULTS: Overall, 262 participants were recruited: those with chronic pain (n = 131) and controls (n = 131). Those in the chronic pain group were more likely to be female (p = 0.004), have less education (p = 0.01), be unable to work (p < 0.001), have a lower monthly income (p = 0.001), be more likely to have a medical card (i.e., free access to public health services) (p = 0.002) and have a greater number of comorbidities (p < 0.0001). Although bivariate analyses demonstrated increased healthcare utilization in chronic pain patients (i.e., GP visits, hospital services and allied therapies; p < 0.05), there was no difference in HL levels between groups in multivariate analysis (chronic pain: 54%, n = 71; control group 49%, n = 64; p = 0.39). Higher educational attainment, greater levels of income and being younger remained independently associated with higher levels of HL. CONCLUSIONS: Further research is needed to understand the nature of how HL is acquired, both from individual and organizational perspectives. Once this has been established, it may facilitate the development or advancement of current HL-sensitive management strategies.

Self-Management Skills in Chronic Disease Management: What Role Does Health Literacy Have?

BACKGROUND: Self-management-based interventions can lead to improved health outcomes in people with chronic diseases, and multiple patient characteristics are associated with the development of self-management behaviors. Low health literacy (HL) has been implicated in poorer self-management behaviors and increased costs to health services. However, the mechanisms behind this relationship remain unclear. Therefore, the aim of the current review is to assess the association between HL and patient characteristics related to self-management behaviors (i.e., disease-related knowledge, beliefs, and self-efficacy). METHODS: The review comprised 3 phases: 1) database searches, 2) eligibility screening, and 3) study quality assessment and strength of evidence. Inclusion criteria specified that a valid HL screening tool was used, that at least one self-management behavior was assessed, and that patients had a chronic condition. RESULTS: An initial search generated a total of 712 articles, of which 31 studies fulfilled the eligibility criteria. A consistent association was found between low HL and poorer disease-related knowledge in respiratory diseases, diabetes, and multiple disease categories. A significant association between low HL and poorer self-efficacy was reported in cardiovascular diseases, diabetes, human immunodeficiency virus, and multiple disease categories. HL was significantly associated with poorer beliefs in respiratory, musculoskeletal, and cardiovascular diseases. DISCUSSION: The findings from the current review suggest that low HL may affect behaviors necessary for the development of self-management skills. Given that self-management strategies are core components for effective treatment of a range of chronic diseases, low HL poses a considerable health concern. Further research is needed to understand the mediating influence of HL on disease-related knowledge, self-efficacy, and beliefs. From this, HL-sensitive, self-management interventions ought to be devised and implemented.

The negative side of retinoic acid receptors.

This is a review of research that supports a hypothesis regarding early restriction of gene expression in the vertebrate embryo. We hypothesize that vertebrate retinoic acid receptors (RARs for several vertebrates but rars for zebrafish) are part of an embryonic, epigenetic switch whose default position, at the time of fertilization is "OFF". This is due to the assemblage of a rar-corepressor-histone deacetylase complex on retinoic acid response elements (RAREs) in regulatory regions of a subset of genes. In addition, selective and precise allocation of retinoic acid during early development through the interaction of Phase I enzymes throws the switch "ON" in a predictable, developmental manner. We are proposing that this is a basic, early embryonic switch that can cause the initiation of cascades of gene expression that are responsible for at least some early, diversification of cell phenotypes. Dehydrogenases and a subset of cytochrome p450 genes (cyp26a1, cyp26b1, and cyp26c1) play the major role in providing the retinoic acid and limiting its access. We also suggest that this mechanism may be playing a significant role in the repression of genes in undifferentiated stem cells.