Study protocol for an online lifestyle modification education course for people living with multiple sclerosis: the multiple sclerosis online course (MSOC).

BACKGROUND: People living with multiple sclerosis (plwMS) seek access to information on evidence-based lifestyle-related risk factors associated with multiple sclerosis (MS). As the internet has made delivery of lifestyle information increasingly accessible and cost-effective, we designed the Multiple Sclerosis Online Course (MSOC) to deliver a multimodal lifestyle modification program for plwMS. Two MS online courses were developed: the intervention course based on lifestyle recommendations of the Overcoming Multiple Sclerosis (OMS) program and the standard-care course representing standard lifestyle recommendations from other MS websites. We examined for feasibility in a pilot randomised controlled trial (RCT), where satisfactory completion and accessibility were achieved across both study arms. From this success, a protocol for a larger RCT was developed to examine the effectiveness of MSOC in improving health-related quality of life (HRQoL) and other health outcomes in plwMS. METHODS/DESIGN: This single-blinded RCT will recruit n = 1,054 plwMS. Participants in the intervention arm will receive access to a MSOC with seven modules providing evidence-based information on the OMS program. Participants in the control group will receive access to a MSOC of identical format, with seven modules providing general MS-related information and lifestyle recommendations sourced from popular MS websites, e.g. MS societies. Participants will complete questionnaires at baseline and at 6, 12, and 30 months after course completion. The primary endpoint is HRQoL, as measured by MSQOL-54 (both physical and mental health domains) at 12 months following course completion. Secondary outcomes are changes to depression, anxiety, fatigue, disability, and self-efficacy as measured by Hospital Anxiety and Depression Scale, Patient-Determined Disease Steps and University of Washington Self-Efficacy Scale, respectively, assessed at each timepoint. Further assessments will include quantitative post-course evaluation, adoption and maintenance of behaviour change from follow-up survey data, and qualitative analysis of participants' outcomes and reasons for course completion or non-completion. DISCUSSION: This RCT aims to determine whether an online intervention course delivering evidence-based lifestyle modification recommendations based on the Overcoming Multiple Sclerosis program to plwMS is more effective at improving HRQoL, and other health outcomes post-intervention, compared with an online standard-care course. TRIAL REGISTRATION: This trial was registered prospectively with the Australian New Zealand Clinical Trials Registry, www.anzctr.org.au , identifier ACTRN12621001605886. DATE OF REGISTRATION: 25 November 2021.

A Teenage Boy With a Radiation-Induced High-Grade Astrocytoma.

ABSTRACT: A 12-year-old boy developed acute headache and vomiting. MRI brain showed a partially cystic suprasellar mass. He underwent cyst fenestration, but the cyst regrew, so he underwent transcranial subtotal resection of the mass. The pathologic diagnosis was adamantinomatous craniopharyngioma. Residual tumor was treated with proton beam radiation therapy, and panhypopituitarism was treated with hormone replacement therapy, including growth hormone. Serial brain MRI scans over several years showed no evidence of tumor recurrence. But at four years after radiation, surveillance MRI showed a new focus of nonenhancing FLAIR hyperintensity in the left basal ganglia attributed to gliosis caused by radiotherapy. Seven months later, he developed progressive right hemiparesis, expressive aphasia, and blurred vision, prompting reevaluation. MRI brain showed new enhancing and T2/FLAIR hyperintense lesions in the midbrain, basal ganglia, thalamus, anterior temporal lobe, and optic tract. The abnormal regions showed low diffusivity and relatively high regional blood flow. Stereotactic biopsy disclosed a WHO Grade 4 astrocytoma, likely radiation-induced. A germline ataxia telangiectasia mutation was found in the tumor tissue. The risk of radiation-induced pediatric brain malignancies is low but may have been increased by the mutation.

Communicating Results of Drinking Water Tests From Private Wells: Designing Report-Back Materials to Facilitate Understanding.

This evaluation assessed the effectiveness of graphic-based (i.e., pictorial) report-back materials in communicating the presence of toxic metals in private well water and soil samples. It also explored associations between recommendations in the report-back materials and appropriate actions to protect health taken by a subset of participants in an environmental monitoring pilot study. Overall, 39 residents of Stokes County, North Carolina, participated in the Well Empowered pilot study, which included water and soil testing and analysis. All participants received materials explaining the extent to which toxic metals were present in their well water and soil. A subset of participants (n = 14) responded to a follow-up evaluation, which showed that many found at least one component of their test results "very easy to understand." The existence of a federal standard for comparison appeared to influence participant recall of results, which was more accurate for contaminants with a federal maximum contaminant level. Our evaluation results suggest that a simple pictorial format, in combination with more detailed supporting text, can be useful in highlighting results that require action.

Impact of Electronic Health Records on Information Practices in Mental Health Contexts: Scoping Review.

BACKGROUND: The adoption of electronic health records (EHRs) and electronic medical records (EMRs) has been slow in the mental health context, partly because of concerns regarding the collection of sensitive information, the standardization of mental health data, and the risk of negatively affecting therapeutic relationships. However, EHRs and EMRs are increasingly viewed as critical to improving information practices such as the documentation, use, and sharing of information and, more broadly, the quality of care provided. OBJECTIVE: This paper aims to undertake a scoping review to explore the impact of EHRs on information practices in mental health contexts and also explore how sensitive information, data standardization, and therapeutic relationships are managed when using EHRs in mental health contexts. METHODS: We considered a scoping review to be the most appropriate method for this review because of the relatively recent uptake of EHRs in mental health contexts. A comprehensive search of electronic databases was conducted with no date restrictions for articles that described the use of EHRs, EMRs, or associated systems in the mental health context. One of the authors reviewed all full texts, with 2 other authors each screening half of the full-text articles. The fourth author mediated the disagreements. Data regarding study characteristics were charted. A narrative and thematic synthesis approach was taken to analyze the included studies' results and address the research questions. RESULTS: The final review included 40 articles. The included studies were highly heterogeneous with a variety of study designs, objectives, and settings. Several themes and subthemes were identified that explored the impact of EHRs on information practices in the mental health context. EHRs improved the amount of information documented compared with paper. However, mental health-related information was regularly missing from EHRs, especially sensitive information. EHRs introduced more standardized and formalized documentation practices that raised issues because of the focus on narrative information in the mental health context. EHRs were found to disrupt information workflows in the mental health context, especially when they did not include appropriate templates or care plans. Usability issues also contributed to workflow concerns. Managing the documentation of sensitive information in EHRs was problematic; clinicians sometimes watered down sensitive information or chose to keep it in separate records. Concerningly, the included studies rarely involved service user perspectives. Furthermore, many studies provided limited information on the functionality or technical specifications of the EHR being used. CONCLUSIONS: We identified several areas in which work is needed to ensure that EHRs benefit clinicians and service users in the mental health context. As EHRs are increasingly considered critical for modern health systems, health care decision-makers should consider how EHRs can better reflect the complexity and sensitivity of information practices and workflows in the mental health context.

Attrition Within Digital Health Interventions for People With Multiple Sclerosis: Systematic Review and Meta-analysis.

BACKGROUND: Digital health interventions have revolutionized multiple sclerosis (MS) care by supporting people with MS to better self-manage their disease. It is now understood that the technological elements that comprise this category of digital health interventions can influence participant engagement in self-management programs, and people with MS can experience significant barriers, influenced by these elements, to remaining engaged during a period of learning. It is essential to explore the influence of technological elements in mitigating attrition. OBJECTIVE: This study aimed to examine the study design and technological elements of documented digital health interventions targeted at people with MS-digital health interventions that were intended to support a program of engagement over a defined period-and to explore how these correlated with attrition among participants of randomized controlled trials (RCTs). METHODS: We conducted a systematic review and meta-analysis of RCTs (n=32) describing digital health self-management interventions for people with MS. We analyzed attrition in included studies, using a random-effects model and meta-regression to measure the association between potential moderators. RESULTS: There were no measured differences in attrition between the intervention and control arms; however, some of the heterogeneity observed was explained by the composite technological element score. The pooled attrition rates for the intervention and control arms were 14.7% and 15.6%, respectively. CONCLUSIONS: This paper provides insight into the technological composition of digital health interventions designed for people with MS and describes the degree of attrition in both study arms. This paper will aid in the design of future studies in this area, particularly for digital health interventions of this type.

Identifying primary care datasets and perspectives on their secondary use: a survey of Australian data users and custodians.

BACKGROUND: Most people receive most of their health care in in Australia in primary care, yet researchers and policymakers have limited access to resulting clinical data. Widening access to primary care data and linking it with hospital or other data can contribute to research informing policy and provision of services and care; however, limitations of primary care data and barriers to access curtail its use. The Australian Health Research Alliance (AHRA) is seeking to build capacity in data-driven healthcare improvement; this study formed part of its workplan. METHODS: The study aimed to build capacity for data driven healthcare improvement through identifying primary care datasets in Australia available for secondary use and understand data quality frameworks being applied to them, and factors affecting national capacity for secondary use of primary care data from the perspectives of data custodians and users. Purposive and snowball sampling were used to disseminate a questionnaire and respondents were invited to contribute additional information via semi-structured interviews. RESULTS: Sixty-two respondents collectively named 106 datasets from eclectic sources, indicating a broad conceptualisation of what a primary care dataset available for secondary use is. The datasets were generated from multiple clinical software systems, using different data extraction tools, resulting in non-standardised data structures. Use of non-standard data quality frameworks were described by two-thirds of data custodians. Building trust between citizens, clinicians, third party data custodians and data end-users was considered by many to be a key enabler to improve primary care data quality and efficiencies related to secondary use. Trust building qualities included meaningful stakeholder engagement, transparency, strong leadership, shared vision, robust data security and data privacy protection. Resources to improve capacity for primary care data access and use were sought for data collection tool improvements, workforce upskilling and education, incentivising data collection and making data access more affordable. CONCLUSIONS: The large number of identified Australian primary care related datasets suggests duplication of labour related to data collection, preparation and utilisation. Benefits of secondary use of primary care data were many, and strong national leadership is required to reach consensus on how to address limitations and barriers, for example accreditation of EMR clinical software systems and the adoption of agreed data and quality standards at all stages of the clinical and research data-use lifecycle. The study informed the workplan of AHRA's Transformational Data Collaboration to improve partner engagement and use of clinical data for research.

TRPV1: A Common Denominator Mediating Antinociceptive and Antiemetic Effects of Cannabinoids.

The most common medicinal claims for cannabis are relief from chronic pain, stimulation of appetite, and as an antiemetic. However, the mechanisms by which cannabis reduces pain and prevents nausea and vomiting are not fully understood. Among more than 450 constituents in cannabis, the most abundant cannabinoids are Δ9-tetrahydrocannabinol (THC) and cannabidiol (CBD). Cannabinoids either directly or indirectly modulate ion channel function. Transient receptor potential vanilloid 1 (TRPV1) is an ion channel responsible for mediating several modalities of pain, and it is expressed in both the peripheral and the central pain pathways. Activation of TRPV1 in sensory neurons mediates nociception in the ascending pain pathway, while activation of TRPV1 in the central descending pain pathway, which involves the rostral ventral medulla (RVM) and the periaqueductal gray (PAG), mediates antinociception. TRPV1 channels are thought to be implicated in neuropathic/spontaneous pain perception in the setting of impaired descending antinociceptive control. Activation of TRPV1 also can cause the release of calcitonin gene-related peptide (CGRP) and other neuropeptides/neurotransmitters from the peripheral and central nerve terminals, including the vagal nerve terminal innervating the gut that forms central synapses at the nucleus tractus solitarius (NTS). One of the adverse effects of chronic cannabis use is the paradoxical cannabis-induced hyperemesis syndrome (HES), which is becoming more common, perhaps due to the wider availability of cannabis-containing products and the chronic use of products containing higher levels of cannabinoids. Although, the mechanism of HES is unknown, the effective treatment options include hot-water hydrotherapy and the topical application of capsaicin, both activate TRPV1 channels and may involve the vagal-NTS and area postrema (AP) nausea and vomiting pathway. In this review, we will delineate the activation of TRPV1 by cannabinoids and their role in the antinociceptive/nociceptive and antiemetic/emetic effects involving the peripheral, spinal, and supraspinal structures.

Treatment patterns and effectiveness of patients with multiple myeloma initiating Daratumumab across different lines of therapy: a real-world chart review study.

BACKGROUND: Daratumumab, a CD38 monoclonal antibody, has demonstrated efficacy as monotherapy and combination therapy across several indications, both among newly-diagnosed and refractory patients with multiple myeloma (MM). However, there is limited evidence on treatment patterns and effectiveness of daratumumab in the real-world setting, particularly in first line (1 L). This study aimed to describe real-world treatment patterns and clinical outcomes among patients initiating daratumumab across different lines of therapy. METHODS: A retrospective chart review of adult patients with MM initiating daratumumab between November 2015 and March 2021 was conducted at two clinical sites in the United States. De-identified patient-level data were abstracted in an electronic case report form. Patient characteristics and treatment patterns were described. Clinical outcomes including overall response rate (ORR), progression-free survival, and time to next line of therapy were reported using descriptive statistics and stratified by line of therapy (1 L, second line [2 L] or third line or later [3 L+]). A sub-group analysis evaluated treatment patterns and ORR among patients re-treated with daratumumab. RESULTS: A total of 299 patients were included in the study (mean age: 68 years; 55% male). Among them, 26 were 1 L patients, 66 were 2 L patients, and 207 were 3 L+ patients; 110 patients (36.8%) received a stem cell transplant prior to daratumumab initiation. The mean duration of follow-up was 10 months among 1 L patients and 19 months among 2 L and 3 L+ patients. Patients who initiated daratumumab in 1 L had a 100% ORR, while those initiating in 2 L and 3 L+ had an ORR of 78.8 and 65.2%, respectively. Among re-treated patients, ORR was 66.7% during the first treatment segment, and 52.9% during the second treatment segment. Kaplan-Meier rates of progression-free survival at 12 months were 89.9, 75.2, and 53.1% among patients who initiated daratumumab in 1 L, 2 L, and 3 L+, respectively. Kaplan-Meier rates of time to next line of therapy at 12 months were 94.1, 73.4, and 50.0% among patients who initiated daratumumab in 1 L, 2 L, and 3 L+, respectively. CONCLUSIONS: These findings suggest that daratumumab-based regimens are an effective treatment option across all lines of therapy, with highest response rate in 1 L.

Associations of person-related, environment-related and communication-related factors on medication errors in public and private hospitals: a retrospective clinical audit.

BACKGROUND: Efforts to ensure safe and optimal medication management are crucial in reducing the prevalence of medication errors. The aim of this study was to determine the associations of person-related, environment-related and communication-related factors on the severity of medication errors occurring in two health services. METHODS: A retrospective clinical audit of medication errors was undertaken over an 18-month period at two Australian health services comprising 16 hospitals. Descriptive statistical analysis, and univariate and multivariable regression analysis were undertaken. RESULTS: There were 11,540 medication errors reported to the online facility of both health services. Medication errors caused by doctors (Odds Ratio (OR) 0.690, 95% CI 0.618-0.771), or by pharmacists (OR 0.327, 95% CI 0.267-0.401), or by patients or families (OR 0.641, 95% CI 0.472-0.870) compared to those caused by nurses or midwives were significantly associated with reduced odds of possibly or probably harmful medication errors. The presence of double-checking of medication orders compared to single-checking (OR 0.905, 95% CI 0.826-0.991) was significantly associated with reduced odds of possibly or probably harmful medication errors. The presence of electronic systems for prescribing (OR 0.580, 95% CI 0.480-0.705) and dispensing (OR 0.350, 95% CI 0.199-0.618) were significantly associated with reduced odds of possibly or probably harmful medication errors compared to the absence of these systems. Conversely, insufficient counselling of patients (OR 3.511, 95% CI 2.512-4.908), movement across transitions of care (OR 1.461, 95% CI 1.190-1.793), presence of interruptions (OR 1.432, 95% CI 1.012-2.027), presence of covering personnel (OR 1.490, 95% 1.113-1.995), misread or unread orders (OR 2.411, 95% CI 2.162-2.690), informal bedside conversations (OR 1.221, 95% CI 1.085-1.373), and problems with clinical handovers (OR 1.559, 95% CI 1.136-2.139) were associated with increased odds of medication errors causing possible or probable harm. Patients or families were involved in the detection of 1100 (9.5%) medication errors. CONCLUSIONS: Patients and families need to be engaged in discussions about medications, and health professionals need to provide teachable opportunities during bedside conversations, admission and discharge consultations, and medication administration activities. Patient counselling needs to be more targeted in effort to reduce medication errors associated with possible or probable harm.

Nurses' pandemic lives: A mixed-methods study of experiences during COVID-19.

BACKGROUND: The US healthcare settings and staff have been stretched to capacity by the COVID-19 pandemic. While COVID-19 continues to threaten global healthcare delivery systems and populations, its impact on nursing has been profound. OBJECTIVES: This study aimed to document nurses' immediate reactions, major stressors, effective measures to reduce stress, coping strategies, and motivators as they provided care during COVID-19. DESIGN: Mixed-methods, cross sectional design. Participants responded to objective and open-ended questions on the COVID-19 Nurses' Survey. PARTICIPANTS: The survey, was sent to nurses employed in health care settings during the pandemic; 110 nurses participated. RESULTS: Immediate reactions of respondents were nervousness and call of duty; major stressors were uncertainty, inflicting the virus on family, lack of personal protective equipment (PPE), and protocol inconsistencies. Effective measures to reduce stress identified were financial incentives and mental health support. Most frequently used coping strategies were limiting televised news about the virus, talking with family and friends, and information, Motivators to participate in future care included having adequate PPE and sense of duty. Bivariate analysis of outcomes by age group, education, work setting, and marital status was performed. Nurse respondents with higher advanced degrees had significantly less fear than those with BSN-only degrees (p < .05).Of respondents who were married/living with a partner, 85.9% listing "uncertainty about when the pandemic will be under control" as a major stressor (p < .05), while 62.8% of those who were single/divorced/widowed (p = .015) did so. Further, 75% of respondents working in critical care listed "mental health services" as important (p = .054). Four major qualitative themes emerged: What is going on here?; How much worse can this get?; What do I do now?; What motivates me to do future work? CONCLUSION: The study found nurses were motivated by ethical duty to care for patients with COVID-19 despite risk to self and family, leaving nurses vulnerable to moral distress and burnout. This research articulates the need for psychological support, self- care initiatives, adequate protection, information, and process improvements in the healthcare systems to reduce the risk of moral distress, injury and burnout among nurses.

Anglers' Views on Using Signs to Communicate Fish Consumption Advisories.

The purpose of this case study was to examine signs as a means of communicating fish consumption advisory information to English- and Spanish-speaking anglers in North Carolina. This study involved a group of stakeholders, including representatives from local and state agencies, non-governmental organizations, and academia, as well as 38 anglers in focus group discussions to learn about their knowledge and beliefs in the context of fishing in polluted waterways, including what they knew about fish consumption advisories and their perceptions of prototype signs. Across groups, participants identified two confusing elements of signs: the allowable number of servings of fish under advisory and distinct consumption recommendations for different subgroups. They recommended streamlined messaging and the use of visuals, lay terms, and locally relevant languages as ways to improve prototype signs. Additionally, participants identified the state wildlife agency as a common source of information about fish safety, more so than signs. These results suggest opportunities for improved communication of advisories, especially to the most at-risk populations.

Enabling Better Use of Person-Generated Health Data in Stroke Rehabilitation Systems: Systematic Development of Design Heuristics.

BACKGROUND: An established and well-known method for usability assessment of various human-computer interaction technologies is called heuristic evaluation (HE). HE has been adopted for evaluations in a wide variety of specialized contexts and with objectives that go beyond usability. A set of heuristics to evaluate how health information technologies (HITs) incorporate features that enable effective patient use of person-generated health data (PGHD) is needed in an era where there is a growing demand and variety of PGHD-enabled technologies in health care and where a number of remote patient-monitoring technologies do not yet enable patient use of PGHD. Such a set of heuristics would improve the likelihood of positive effects from patients' use of PGHD and lower the risk of negative effects. OBJECTIVE: This study aims to describe the development of a set of heuristics for the design and evaluation of how well remote patient therapeutic technologies enable patients to use PGHD (PGHD enablement). We used the case of Kinect-based stroke rehabilitation systems (K-SRS) in this study. METHODS: The development of a set of heuristics to enable better use of PGHD was primarily guided by the R3C methodology. Closer inspection of the methodology reveals that neither its development nor its application to a case study were described in detail. Thus, where relevant, each step was grounded through best practice activities in the literature and by using Nielsen's heuristics as a basis for determining the new set of heuristics. As such, this study builds on the R3C methodology, and the implementation of a mixed process is intended to result in a robust and credible set of heuristics. RESULTS: A total of 8 new heuristics for PGHD enablement in K-SRS were created. A systematic and detailed process was applied in each step of heuristic development, which bridged the gaps described earlier. It is hoped that this would aid future developers of specialized heuristics, who could apply the detailed process of heuristic development for other domains of technology, and additionally for the case of PGHD enablement for other health conditions. The R3C methodology was also augmented through the use of qualitative studies with target users and domain experts, and it is intended to result in a robust and credible set of heuristics, before validation and refinement. CONCLUSIONS: This study is the first to develop a new set of specialized heuristics to evaluate how HITs incorporate features that enable effective patient use of PGHD, with K-SRS as a key case study. In addition, it is the first to describe how the identification of initial HIT features and concepts to enable PGHD could lead to the development of a specialized set of heuristics.

Assessment of inorganic contamination of private wells and demonstration of effective filter-based reduction: A pilot-study in Stokes County, North Carolina.

Well water is the primary drinking source for nearly a quarter of North Carolina residents. Many communities across the state have been concerned about their well water quality and inorganic contamination. The "Well Empowered" study worked alongside a community in Stokes County, North Carolina to measure toxic metals in their well water as well as provide and test ZeroWater® filter pitchers in homes with arsenic (As) or lead (Pb) contamination. Multiple water samples, including a First Draw sample from the kitchen tap and a sample taken directly from the well, were collected from 39 homes in Stokes County. The samples were analyzed for 17 different inorganic contaminants, including As, boron (B), Pb, and manganese (Mn), using inductively coupled plasma mass spectrometry (ICP-MS). High concentrations of Pb along with copper (Cu), cadmium (Cd), and zinc (Zn) were only found in the First Draw sample and therefore likely originate in the home plumbing system while As, iron (Fe), and Mn were consistent across all samples and therefore are present in the groundwater. The low concentrations of B (<100 parts per billion (ppb)) make it unlikely that the source of As and Mn contamination was coal ash-derived. Out of the 39 homes, four had As levels exceeding the federal standard of 10 ppb and an additional two exceeded the Pb standard of 15 ppb. These homes were provided with a ZeroWater® filter pitcher and a water sample was taken pre- and post-filtration. The ZeroWater® filter removed 99% of As and Pb from the water, dropping the levels well below the drinking water standard levels. These ZeroWater® filter pitchers, while not a permanent solution, are a low-cost option for homeowners experiencing As or Pb contamination.

Comment on 'Discovering hospital admission patterns using models learnt from electronic hospital records'. The importance of using the right codes.

CONTACT: guillermo.lopez@unimelb.edu.au.

eHealth for inflammatory bowel disease self-management - the patient perspective.

BACKGROUND: Electronic health (eHealth) solutions may help address the growing pressure on IBD outpatient services as they encompass a component of self-management. However, information regarding patients' attitudes towards the use of eHealth solutions in IBD is lacking. OBJECTIVE: The aim of this study was to evaluate eHealth technology use and explore the perspectives of IBD patients on what constitutes the ideal eHealth solution to facilitate self-management. METHODS: A mixed methods qualitative and quantitative analysis of the outcomes of a discussion forum and an online survey conducted at a tertiary hospital in Melbourne, Australia between November 2015 and January 2016 was undertaken. RESULTS: Eighteen IBD patients and parents participated in the discussion forum. IBD patients expressed interest in eHealth tools that are convenient and improve access to care, communication, disease monitoring and adherence. Eighty six patients with IBD responded to the online survey. A majority of patients owned a mobile phone (98.8%), had access to the internet (97.7%), and felt confident entering data onto a phone or computer (73.3%). Most patients (98.8%) were willing to use at least one form of information and communication technology to help manage their IBD. Smartphone apps and internet websites were the two most preferred technologies to facilitate IBD self-management. CONCLUSIONS: This study demonstrates the willifngness of patients to engage with eHealth as a potential solution to facilitate IBD self-management. Future development and testing of eHealth solutions should be informed by all major stakeholders including patients to maximise their uptake and efficacy to facilitate IBD self-management.

Development and Validation of a Taxonomy for Characterizing Measurements in Health Self-Quantification.

BACKGROUND: The use of wearable tools for health self-quantification (SQ) introduces new ways of thinking about one's body and about how to achieve desired health outcomes. Measurements from individuals, such as heart rate, respiratory volume, skin temperature, sleep, mood, blood pressure, food consumed, and quality of surrounding air can be acquired, quantified, and aggregated in a holistic way that has never been possible before. However, health SQ still lacks a formal common language or taxonomy for describing these kinds of measurements. Establishing such taxonomy is important because it would enable systematic investigations that are needed to advance in the use of wearable tools in health self-care. For a start, a taxonomy would help to improve the accuracy of database searching when doing systematic reviews and meta-analyses in this field. Overall, more systematic research would contribute to build evidence of sufficient quality to determine whether and how health SQ is a worthwhile health care paradigm. OBJECTIVE: The aim of this study was to investigate a sample of SQ tools and services to build and test a taxonomy of measurements in health SQ, titled: the classification of data and activity in self-quantification systems (CDA-SQS). METHODS: Eight health SQ tools and services were selected to be examined: Zeo Sleep Manager, Fitbit Ultra, Fitlinxx Actipressure, MoodPanda, iBGStar, Sensaris Senspod, 23andMe, and uBiome. An open coding analytical approach was used to find all the themes related to the research aim. RESULTS: This study distinguished three types of measurements in health SQ: body structures and functions, body actions and activities, and around the body. CONCLUSIONS: The CDA-SQS classification should be applicable to align health SQ measurement data from people with many different health objectives, health states, and health conditions. CDA-SQS is a critical contribution to a much more consistent way of studying health SQ.

Activity Theory as a Theoretical Framework for Health Self-Quantification: A Systematic Review of Empirical Studies.

BACKGROUND: Self-quantification (SQ) is a way of working in which, by using tracking tools, people aim to collect, manage, and reflect on personal health data to gain a better understanding of their own body, health behavior, and interaction with the world around them. However, health SQ lacks a formal framework for describing the self-quantifiers' activities and their contextual components or constructs to pursue these health related goals. Establishing such framework is important because it is the first step to operationalize health SQ fully. This may in turn help to achieve the aims of health professionals and researchers who seek to make or study changes in the self-quantifiers' health systematically. OBJECTIVE: The aim of this study was to review studies on health SQ in order to answer the following questions: What are the general features of the work and the particular activities that self-quantifiers perform to achieve their health objectives? What constructs of health SQ have been identified in the scientific literature? How have these studies described such constructs? How would it be possible to model these constructs theoretically to characterize the work of health SQ? METHODS: A systematic review of peer-reviewed literature was conducted. A total of 26 empirical studies were included. The content of these studies was thematically analyzed using Activity Theory as an organizing framework. RESULTS: The literature provided varying descriptions of health SQ as data-driven and objective-oriented work mediated by SQ tools. From the literature, we identified two types of SQ work: work on data (ie, data management activities) and work with data (ie, health management activities). Using Activity Theory, these activities could be characterized into 6 constructs: users, tracking tools, health objectives, division of work, community or group setting, and SQ plan and rules. We could not find a reference to any single study that accounted for all these activities and constructs of health SQ activity. CONCLUSIONS: A Health Self-Quantification Activity Framework is presented, which shows SQ tool use in context, in relation to the goals, plans, and competence of the user. This makes it easier to analyze issues affecting SQ activity, and thereby makes it more feasible to address them. This review makes two significant contributions to research in this field: it explores health SQ work and its constructs thoroughly and it adapts Activity Theory to describe health SQ activity systematically.

Identification of alternative transcripts encoding the essential murine gammaherpesvirus lytic transactivator RTA.

UNLABELLED: The essential immediate early transcriptional activator RTA, encoded by gene 50, is conserved among all characterized gammaherpesviruses. Analyses of a recombinant murine gammaherpesvirus 68 (MHV68) lacking both of the known gene 50 promoters (G50DblKo) revealed that this mutant retained the ability to replicate in the simian kidney epithelial cell line Vero but not in permissive murine fibroblasts following low-multiplicity infection. However, G50DblKo replication in permissive fibroblasts was partially rescued by high-multiplicity infection. In addition, replication of the G50DblKo virus was rescued by growth on mouse embryonic fibroblasts (MEFs) isolated from IFN-α/ßR-/- mice, while growth on Vero cells was suppressed by the addition of alpha interferon (IFN-α). 5' rapid amplification of cDNA ends (RACE) analyses of RNAs prepared from G50DblKo and wild-type MHV68-infected murine macrophages identified three novel gene 50 transcripts initiating from 2 transcription initiation sites located upstream of the currently defined proximal and distal gene 50 promoters. In transient promoter assays, neither of the newly identified gene 50 promoters exhibited sensitivity to IFN-α treatment. Furthermore, in a single-step growth analysis RTA levels were higher at early times postinfection with the G50DblKo mutant than with wild-type virus but ultimately fell below the levels of RTA expressed by wild-type virus at later times in infection. Infection of mice with the MHV68 G50DblKo virus demonstrated that this mutant virus was able to establish latency in the spleen and peritoneal exudate cells (PECs) of C57BL/6 mice with about 1/10 the efficiency of wild-type virus or marker rescue virus. However, despite the ability to establish latency, the G50DblKo virus mutant was severely impaired in its ability to reactivate from either latently infected splenocytes or PECs. Consistent with the ability to rescue replication of the G50DblKo mutant by growth on type I interferon receptor null MEFs, infection of IFN-α/ßR-/- mice with the G50DblKo mutant virus demonstrated partial rescue of (i) acute virus replication in the lungs, (ii) establishment of latency, and (iii) reactivation from latency. The identification of additional gene 50/RTA transcripts highlights the complex mechanisms involved in controlling expression of RTA, likely reflecting time-dependent and/or cell-specific roles of different gene 50 promoters in controlling virus replication. Furthermore, the newly identified gene 50 transcripts may also act as negative regulators that modulate RTA expression. IMPORTANCE: The viral transcription factor RTA, encoded by open reading frame 50 (Orf50), is well conserved among all known gammaherpesviruses and is essential for both virus replication and reactivation from latently infected cells. Previous studies have shown that regulation of gene 50 transcription is complex. The studies reported here describe the presence of additional alternatively initiated, spliced transcripts that encode RTA. Understanding how expression of this essential viral gene product is regulated may identify new strategies for interfering with infection in the setting of gammaherpesvirus-induced diseases.

Patient-reported outcomes and therapeutic affordances of social media: findings from a global online survey of people with chronic pain.

BACKGROUND: Patient-reported outcomes (PROs) from social media use in chronic disease management continue to emerge. While many published articles suggest the potential for social media is positive, there is a lack of robust examination into mediating mechanisms that might help explain social media's therapeutic value. This study presents findings from a global online survey of people with chronic pain (PWCP) to better understand how they use social media as part of self-management. OBJECTIVE: Our aim is to improve understanding of the various health outcomes reported by PWCP by paying close attention to therapeutic affordances of social media. We wish to examine if demographics of participants underpin health outcomes and whether the concept of therapeutic affordances explains links between social media use and PROs. The goal is for this to help tailor future recommendations for use of social media to meet individuals' health needs and improve clinical practice of social media use. METHODS: A total of 231 PWCP took part in a global online survey investigating PROs from social media use. Recruited through various chronic disease entities and social networks, participants provided information on demographics, health/pain status, social media use, therapeutic affordances, and PROs from use. Quantitative analysis was performed on the data using descriptive statistics, cross-tabulation, and cluster analysis. RESULTS: The total dataset represented 218 completed surveys. The majority of participants were university educated (67.0%, 146/218) and female (83.9%, 183/218). More than half (58.7%, 128/218) were married/partnered and not working for pay (75.9%, 88/116 of these due to ill health). Fibromyalgia (46.6%, 55/118) and arthritis (27.1%, 32/118) were the most commonly reported conditions causing pain. Participants showed a clear affinity for social network site use (90.0%, 189/210), followed by discussion forums and blogs. PROs were consistent, suggesting that social media positively impact psychological, social, and cognitive health. Analysis also highlighted two strong correlations linking platform used and health outcomes (particularly psychological, social, and cognitive) to (1) the narrative affordance of social media and (2) frequency of use of the platforms. CONCLUSIONS: Results did not uncover definitive demographics or characteristics of PWCP for which health outcomes are impacted. However, findings corroborate literature within this domain suggesting that there is a typical profile of people who use social media for health and that social media are more suited to particular health outcomes. Exploration of the relationship between social media's therapeutic affordances and health outcomes, in particular the narration affordance, warrants further attention by patients and clinicians.