Digital health for emotional and self-management support of caregivers of children receiving growth hormone treatment: a feasibility study protocol.

BACKGROUND: Caregivers of children undergoing growth hormone treatment often face stress and stigma. In this regard, family-centered approaches are increasingly considered, wherein caregivers' mental wellbeing is taken into account to optimize children's health-related outcomes and behaviors (e.g., treatment adherence). Here, mindfulness and parenting-based programs have been developed to support the mental wellbeing of caregivers and, in turn, promote richer interactions with the children. Nevertheless, this type of program can face drawbacks, such as the scheduling and availability of family members. Recent digital health (DH) solutions (e.g., mobile apps) are showing promising advantages as self-management support tools for improving wellbeing and behaviors related to the treatments. Although, further evidence is necessary in the field of Growth Hormone Treatment (GHt). Accordingly, this study aims to examine the usability of a mobile DH solution and the feasibility of a DH intervention designed to promote emotional and mental wellbeing of caregivers of children undergoing GHt. METHODS: This is a prospective mixed-methods (qualitative-quantitative) exploratory study composed of two sub-studies, including caregivers of children undergoing GHt. Sub-study one (SS1; n = 10) focuses on the usability of the DH solution (detecting potential barriers and facilitators) and an ad hoc semi-structured interview will be administered to the caregivers after using the DH solution for one month. Sub-study two (SS2; n = 55) aims to evaluate the feasibility of the DH intervention on caregivers' perceived distress, positive affectivity, mental wellbeing, self-efficacy, together with the children's quality of life and treatment adherence. All these parameters will be assessed via quantitative methods before and after 3-months of the DH intervention. Usability and engagement will also be assessed during and at the end of the study. RESULTS: It is expected that significant amounts of data will be captured with regards of the feasibility of the DH solution. DISCUSSION: The manuscript provides a complete protocol for a study that will include qualitative and quantitative information about, on one hand, the user-friendliness of the DH solution, and on the other, the effects on caregivers' emotional, as well as, behavioral parameters in terms of the usability and engagement to the DH solution. The findings will contribute to the evidence planning process for the future adoption of digital health solutions for caregiver support and better health-related outcomes. Trial registration ClinicalTrials.gov, ID: NCT04812665.

An eHealth Framework for Managing Pediatric Growth Disorders and Growth Hormone Therapy.

BACKGROUND: The use of technology to support health and health care has grown rapidly in the last decade across all ages and medical specialties. Newly developed eHealth tools are being implemented in long-term management of growth failure in children, a low prevalence pediatric endocrine disorder. OBJECTIVE: Our objective was to create a framework that can guide future implementation and research on the use of eHealth tools to support patients with growth disorders who require growth hormone therapy. METHODS: A total of 12 pediatric endocrinologists with experience in eHealth, from a wide geographical distribution, participated in a series of online discussions. We summarized the discussions of 3 workshops, conducted during 2020, on the use of eHealth in the management of growth disorders, which were structured to provide insights on existing challenges, opportunities, and solutions for the implementation of eHealth tools across the patient journey, from referral to the end of pediatric therapy. RESULTS: A total of 815 responses were collected from 2 questionnaire-based activities covering referral and diagnosis of growth disorders, and subsequent growth hormone therapy stages of the patient pathway, relating to physicians, nurses, and patients, parents, or caregivers. We mapped the feedback from those discussions into a framework that we developed as a guide to integration of eHealth tools across the patient journey. Responses focused on improved clinical management, such as growth monitoring and automation of referral for early detection of growth disorders, which could trigger rapid evaluation and diagnosis. Patient support included the use of eHealth for enhanced patient and caregiver communication, better access to educational opportunities, and enhanced medical and psychological support during growth hormone therapy management. Given the potential availability of patient data from connected devices, artificial intelligence can be used to predict adherence and personalize patient support. Providing evidence to demonstrate the value and utility of eHealth tools will ensure that these tools are widely accepted, trusted, and used in clinical practice, but implementation issues (eg, adaptation to specific clinical settings) must be addressed. CONCLUSIONS: The use of eHealth in growth hormone therapy has major potential to improve the management of growth disorders along the patient journey. Combining objective clinical information and patient adherence data is vital in supporting decision-making and the development of new eHealth tools. Involvement of clinicians and patients in the process of integrating such technologies into clinical practice is essential for implementation and developing evidence that eHealth tools can provide value across the patient pathway.

Connected health for growth hormone treatment research and clinical practice: learnings from different sources of real-world evidence (RWE)-large electronically collected datasets, surveillance studies and individual patients' cases.

BACKGROUND: A range of factors can reduce the effectiveness of treatment prescribed for the long-term management of chronic health conditions, such as growth disorders. In particular, prescription medications may not achieve the positive outcomes expected because approximately half of patients adhere poorly to the prescribed treatment regimen. METHODS: Adherence to treatment has previously been assessed using relatively unreliable subjective methods, such as patient self-reporting during clinical follow-up, or counting prescriptions filled or vials returned by patients. Here, we report on a new approach, the use of electronically recorded objective evidence of date, time, and dose taken which was obtained through a comprehensive eHealth ecosystem, based around the easypod™ electromechanical auto-injection device and web-based connect software. The benefits of this eHealth approach are also illustrated here by two case studies, selected from the Finnish cohort of the easypod™ Connect Observational Study (ECOS), a 5-year, open-label, observational study that enrolled children from 24 countries who were being treated with growth hormone (GH) via the auto-injection device. RESULTS: Analyses of data from 9314 records from the easypod™ connect database showed that, at each time point studied, a significantly greater proportion of female patients had high adherence (≥ 85%) than male patients (2849/3867 [74%] vs 3879/5447 [71%]; P < 0.001). Furthermore, more of the younger patients (< 10 years for girls, < 12 years for boys) were in the high adherence range (P < 0.001). However, recursive partitioning of data from ECOS identified subgroups with lower adherence to GH treatment ‒ children who performed the majority of injections themselves at an early age (~ 8 years) and teenagers starting treatment aged ≥ 14 years. CONCLUSIONS: The data and case studies presented herein illustrate the importance of adherence to GH therapy and how good growth outcomes can be achieved by following treatment as described. They also show how the device, software, and database ecosystem can complement normal clinical follow-up by providing HCPs with reliable information about patient adherence between visits and also providing researchers with real-world evidence of adherence and growth outcomes across a large population of patients with growth disorders treated with GH via the easypod™ device.

Connected Mental Health: Systematic Mapping Study.

BACKGROUND: Although mental health issues constitute an increasing global burden affecting a large number of people, the mental health care industry is still facing several care delivery barriers such as stigma, education, and cost. Connected mental health (CMH), which refers to the use of information and communication technologies in mental health care, can assist in overcoming these barriers. OBJECTIVE: The aim of this systematic mapping study is to provide an overview and a structured understanding of CMH literature available in the Scopus database. METHODS: A total of 289 selected publications were analyzed based on 8 classification criteria: publication year, publication source, research type, contribution type, empirical type, mental health issues, targeted cohort groups, and countries where the empirically evaluated studies were conducted. RESULTS: The results showed that there was an increasing interest in CMH publications; journals were the main publication channels of the selected papers; exploratory research was the dominant research type; advantages and challenges of the use of technology for mental health care were the most investigated subjects; most of the selected studies had not been evaluated empirically; depression and anxiety were the most addressed mental disorders; young people were the most targeted cohort groups in the selected publications; and Australia, followed by the United States, was the country where most empirically evaluated studies were conducted. CONCLUSIONS: CMH is a promising research field to present novel approaches to assist in the management, treatment, and diagnosis of mental health issues that can help overcome existing mental health care delivery barriers. Future research should be shifted toward providing evidence-based studies to examine the effectiveness of CMH solutions and identify related issues.

Tailoring motivational health messages for smoking cessation using an mHealth recommender system integrated with an electronic health record: a study protocol.

BACKGROUND: Smoking is one of the most avoidable health risk factors, and yet the quitting success rates are low. The usage of tailored health messages to support quitting has been proved to increase quitting success rates. Technology can provide convenient means to deliver tailored health messages. Health recommender systems are information-filtering algorithms that can choose the most relevant health-related items-for instance, motivational messages aimed at smoking cessation-for each user based on his or her profile. The goals of this study are to analyze the perceived quality of an mHealth recommender system aimed at smoking cessation, and to assess the level of engagement with the messages delivered to users via this medium. METHODS: Patients participating in a smoking cessation program will be provided with a mobile app to receive tailored motivational health messages selected by a health recommender system, based on their profile retrieved from an electronic health record as the initial knowledge source. Patients' feedback on the messages and their interactions with the app will be analyzed and evaluated following an observational prospective methodology to a) assess the perceived quality of the mobile-based health recommender system and the messages, using the precision and time-to-read metrics and an 18-item questionnaire delivered to all patients who complete the program, and b) measure patient engagement with the mobile-based health recommender system using aggregated data analytic metrics like session frequency and, to determine the individual-level engagement, the rate of read messages for each user. This paper details the implementation and evaluation protocol that will be followed. DISCUSSION: This study will explore whether a health recommender system algorithm integrated with an electronic health record can predict which tailored motivational health messages patients would prefer and consider to be of a good quality, encouraging them to engage with the system. The outcomes of this study will help future researchers design better tailored motivational message-sending recommender systems for smoking cessation to increase patient engagement, reduce attrition, and, as a result, increase the rates of smoking cessation. TRIAL REGISTRATION: The trial was registered at clinicaltrials.org under the ClinicalTrials.gov identifier NCT03206619 on July 2nd 2017. Retrospectively registered.

Knowledge and perceptions about Zika virus in a Middle East country.

BACKGROUND: Zika virus, an emerging serious infectious disease, is a threat to persons living or travelling to regions where it is currently endemic, and also to contacts of infected individuals. The aim of this study was to assess knowledge about this new public health threat to persons residing in a Middle Eastern country. METHODS: We conducted a survey at several international universities in Qatar to assess knowledge and awareness about this disease. An adapted version of the survey was also conducted using online channels from Qatar. RESULTS: The median age of the 446 participants, was 25 years, 280 (63%) were females, and 32% were from Gulf Cooperation Council (GCC) or other Middle East countries. Based upon their knowledge about availability of a vaccine, role of mosquitoes and other modes of transmission, and disease complications, we classified respondent's knowledge as "poor" (66%), "basic" (27%) or "broad" (7%). Forty-five (16%) persons with poor knowledge considered themselves to be well-informed. CONCLUSIONS: This report from a sample of persons associated with Middle East educational complex, reveals inadequate knowledge about Zika virus, a serious emerging infectious disease. Although few cases have been reported from the region, future cases are possible, since this area is a transit hub connecting currently infected regions to North America, Europe and Asia. As a preventive measure, an educational program about Zika virus would be valuable, especially for individuals or family members travelling to afflicted regions.

Exergames versus self-regulated exercises with instruction leaflets to improve adherence during geriatric rehabilitation: a randomized controlled trial.

BACKGROUND: Improving mobility in elderly persons is a primary goal in geriatric rehabilitation. Self-regulated exercises with instruction leaflets are used to increase training volume but adherence is often low. Exergames may improve adherence. This study therefore compared exergames with self-regulated exercise using instruction leaflets. The primary outcome was adherence. Secondary outcomes were enjoyment, motivation and balance during walking. METHODS: Design: single center parallel group non-blinded randomized controlled trial with central stratified randomization. SETTING: center for geriatric inpatient rehabilitation. Included were patients over 65 with mobility restrictions who were able to perform self-regulated exercise. Patients were assigned to self-regulated exercise using a) exergames on Windows Kinect® (exergame group EG) or b) instruction leaflets (conventional group CG). During two 30 min sessions physical therapists instructed self-regulated exercise to be conducted twice daily during thirty minutes during ten working days. Patients reported adherence (primary outcome), enjoyment and motivation daily. Balance during walking was measured blind before and after the treatment phase with an accelerometer. Analysis was by intention to treat. Repeated measures mixed models and Cohen's d effect sizes (ES, moderate if >0.5, large if > 0.8) with 95% CIs were used to evaluate between-group effects over time. Alpha was set at 0.05. RESULTS: From June 2014 to December 2015 217 patients were evaluated and 54 included, 26 in the EG and 28 in the CG. Adverse effects were observed in two patients in the EG who stopped because of pain during exercising. Adherence was comparable at day one (38 min. in the EG and 42 min. in the CG) and significantly higher in the CG at day 10 (54 min. in the CG while decreasing to 28 min. in the EG, p = 0.007, ES 0.94, 0.39-0.151). Benefits favoring the CG were also observed for enjoyment (p = 0.001, ES 0.88, 0.32 - 1.44) and motivation (p = 0.046, ES 0.59, 0.05-1.14)). There was no between-group effect in balance during walking. CONCLUSIONS: Self-regulated exercise using instruction leaflets is superior to exergames regarding adherence, enjoyment and motivation in a geriatric inpatient rehabilitation setting. Effects were moderate to large. There was no between group difference in balance during walking. TRIAL REGISTRATION: ClinicalTrials.gov, NCT02077049 , 6 February 2014.

Controversial Ebola vaccine trials in Ghana: a thematic analysis of critiques and rebuttals in digital news.

BACKGROUND: Communication is of paramount importance in responding to health crises. We studied the media messages put forth by different stakeholders in two Ebola vaccine trials that became controversial in Ghana. These interactions between health authorities, political actors, and public citizens can offer key lessons for future research. Through an analysis of online media, we analyse stakeholder concerns and incentives, and the phases of the dispute, to understand how the dispute evolved to the point of the trials being suspended, and analyse what steps might have been taken to avert this outcome. METHODS: A web-based system was developed to download and analyse news reports relevant to Ebola vaccine trials. This included monitoring major online newspapers in each country with planned clinical trials, including Ghana. All news articles were downloaded, selecting out those containing variants of the words "Ebola," and "vaccine," which were analysed thematically by a team of three coders. Two types of themes were defined: critiques of the trials and rebuttals in favour of the trials. After reconciling differences between coders' results, the data were visualised and reviewed to describe and interpret the debate. RESULTS: A total of 27,460 articles, published between 1 May and 30 July 2015, were collected from nine different newspapers in Ghana, of which 139 articles contained the keywords and met the inclusion criteria. The final codebook included 27 themes, comprising 16 critiques and 11 rebuttals. After coding and reconciliation, the main critiques (and their associated rebuttals) were selected for in-depth analysis, including statements about the trials being secret (mentioned in 21% of articles), claims that the vaccine trials would cause an Ebola outbreak in Ghana (33%), and the alleged impropriety of the incentives offered to participants (35%). DISCUSSION: Perceptions that the trials were "secret" arose from a combination of premature news reporting and the fact that the trials were prohibited from conducting any publicity before being approved at the time that the story came out, which created an impression of secrecy. Fears about Ebola being spread in Ghana appeared in two forms, the first alleging that scientists would intentionally infect Ghanaians with Ebola in order to test the vaccine, and the second suggesting that the vaccine might give trial participants Ebola as a side-effect - over the course of the debate, the latter became the more prominent of the two variants. The incentives were sometimes criticised for being coercively large, but were much more often criticised for being too small, which may have been related to a misperception that the incentives were meant as compensation for the trials' risks, which were themselves exaggerated. CONCLUSION: The rumours captured through this research indicate the variety of strong emotions drawn out by the trials, highlighting the importance of understanding the emotional and social context of such research. The uncertainty, fear, and distrust associated with the trials draw from the contemporary context of the Ebola outbreak, as well as longstanding historical issues in Ghana. By analysing the debate from its inception, we can see how the controversy unfolded, and identify points of concern that can inform health communication, suggesting that this tool may be valuable in future epidemics and crises.

HealthRecSys: A semantic content-based recommender system to complement health videos.

BACKGROUND: The Internet, and its popularity, continues to grow at an unprecedented pace. Watching videos online is very popular; it is estimated that 500 h of video are uploaded onto YouTube, a video-sharing service, every minute and that, by 2019, video formats will comprise more than 80% of Internet traffic. Health-related videos are very popular on YouTube, but their quality is always a matter of concern. One approach to enhancing the quality of online videos is to provide additional educational health content, such as websites, to support health consumers. This study investigates the feasibility of building a content-based recommender system that links health consumers to reputable health educational websites from MedlinePlus for a given health video from YouTube. METHODS: The dataset for this study includes a collection of health-related videos and their available metadata. Semantic technologies (such as SNOMED-CT and Bio-ontology) were used to recommend health websites from MedlinePlus. A total of 26 healths professionals participated in evaluating 253 recommended links for a total of 53 videos about general health, hypertension, or diabetes. The relevance of the recommended health websites from MedlinePlus to the videos was measured using information retrieval metrics such as the normalized discounted cumulative gain and precision at K. RESULTS: The majority of websites recommended by our system for health videos were relevant, based on ratings by health professionals. The normalized discounted cumulative gain was between 46% and 90% for the different topics. CONCLUSIONS: Our study demonstrates the feasibility of using a semantic content-based recommender system to enrich YouTube health videos. Evaluation with end-users, in addition to healthcare professionals, will be required to identify the acceptance of these recommendations in a nonsimulated information-seeking context.

Implementing 360° Quantified Self for childhood obesity: feasibility study and experiences from a weight loss camp in Qatar.

BACKGROUND: The explosion of consumer electronics and social media are facilitating the rise of the Quantified Self (QS) movement where millions of users are tracking various aspects of their daily life using social media, mobile technology, and wearable devices. Data from mobile phones, wearables and social media can facilitate a better understanding of the health behaviors of individuals. At the same time, there is an unprecedented increase in childhood obesity rates worldwide. This is a cause for grave concern due to its potential long-term health consequences (e.g., diabetes or cardiovascular diseases). Childhood obesity is highly prevalent in Qatar and the Gulf Region. In this study we examine the feasibility of capturing quantified-self data from social media, wearables and mobiles within a weight lost camp for overweight children in Qatar. METHODS: Over 50 children (9-12 years old) and parents used a wide range of technologies, including wearable sensors (actigraphy), mobile and social media (WhatsApp and Instagram) to collect data related to physical activity and food, that was then integrated with physiological data to gain insights about their health habits. In this paper, we report about the acquired data and visualization techniques following the 360° Quantified Self (360QS) methodology (Haddadi et al., ICHI 587-92, 2015). RESULTS: 360QS allows for capturing insights on the behavioral patterns of children and serves as a mechanism to reinforce education of their mothers via social media. We also identified human factors, such as gender and cultural acceptability aspects that can affect the implementation of this technology beyond a feasibility study. Furthermore, technical challenges regarding the visualization and integration of heterogeneous and sparse data sets are described in the paper. CONCLUSIONS: We proved the feasibility of using 360QS in childhood obesity through this pilot study. However, in order to fully implement the 360QS technology careful planning and integration in the health professionals' workflow is needed. TRIAL REGISTRATION: The trial where this study took place is registered at ClinicalTrials.gov on 14 November 2016 ( NCT02972164 ).