TRANSFoRm eHealth solution for quality of life monitoring.
Ontology highlight
ABSTRACT:
SUBMITTER: Saganowski S
PROVIDER: S-EPMC5001750 | biostudies-literature | 2016
REPOSITORIES: biostudies-literature
Publications
TRANSFoRm eHealth solution for quality of life monitoring.
Saganowski Stanisław S Misiaszek Andrzej A Bródka Piotr P Andreasson Anna A Curcin Vasa V Delaney Brendan B Frączkowski Kazimierz K
AMIA Joint Summits on Translational Science proceedings. AMIA Joint Summits on Translational Science 20160720
Patient Recorded Outcome Measures (PROMs) are an essential part of quality of life monitoring, clinical trials, improvement studies and other medical tasks. Recently, web and mobile technologies have been explored as means of improving the response rates and quality of data collected. Despite the potential benefit of this approach, there are currently no widely accepted standards for developing or implementing PROMs in CER (Comparative Effectiveness Research). Within the European Union project T ...[more]
Similar Datasets
Project description:The study aimed at prospectively evaluating the evolution of asthma control in Italy, to evaluate the reasons for lack of asthma control, perceived quality of life (QoL) and association with level of asthma control, the impact of pharmacological treatment, the number of exacerbations and the healthcare resource consumption.PRISMA (PRospectIve Study on asthMA control) was an observational study performed in asthmatic patients including a cross-sectional phase and a 12-month prospective phase. Asthma control was assessed with the Asthma Control Test™ (ACT) and QoL was evaluated with EuroQoL-5D questionnaire filled in and collected during 5 clinic visits together with all the other data.The prospective phase included 1017 patients with uncontrolled (55.7%) or partly controlled asthma (44.3%). Out of the 739 patients evaluable after 12 months, 22.2% achieved full asthma control (ACT score = 25) and 58.7% reached a good control (ACT score: 20-24). The improvement in asthma control was associated with improved QoL and reduced hospital visits. The main reasons for lack of asthma control were comorbidities, continued exposure to irritants/triggers and poor adherence to therapy. The frequency of exacerbations was lower in patients with controlled asthma.A fixed combination therapy with an inhaled corticosteroid and a long-acting ?2 agonist was reported by 77.0% of patients. A better asthma control and improved QoL were achieved with extrafine beclomethasone/formoterol compared to either budesonide/formoterol or fluticasone/salmeterol.An improvement in asthma control and QoL can be achieved during a 1-year monitoring in a real life setting. Extrafine beclomethasone/formoterol was associated with significant benefit in terms of asthma control and QoL compared to large-particles combinations.ClinicalTrials.gov number NCT01110460.
| S-EPMC3546892 | biostudies-literature
Project description:ObjectiveThere has been substantial growth in eHealth over the past decade, driven by expectations of improved healthcare system performance. Despite substantial eHealth investment, little is known about the monitoring and evaluation strategies for gauging progress in eHealth availability and use. This scoping review aims to map the existing literature and depict the predominant approaches and methodological recommendations to national and regional monitoring and evaluation of eHealth availability and use, to advance national strategies for monitoring and evaluating eHealth.MethodsPeer-reviewed and grey literature on monitoring and evaluation of eHealth availability and use published between January 1, 2009, and March 11, 2019, were eligible for inclusion. A total of 2354 publications were identified and 36 publications were included after full-text review. Data on publication type (eg, empirical research), country, level (national or regional), publication year, method (eg, survey), and domain (eg, provider-centric electronic record) were charted.ResultsThe majority of publications monitored availability alone or applied a combination of availability and use measures. Surveys were the most common data collection method (used in 86% of the publications). Organization for Economic Co-operation and Development (OECD), European Commission, Canada Health Infoway, and World Health Organization (WHO) have developed comprehensive eHealth monitoring and evaluation methodology recommendations.DiscussionEstablishing continuous national eHealth monitoring and evaluation, based on international approaches and recommendations, could improve the ability for cross-country benchmarking and learning. This scoping review provides an overview of the predominant approaches to and recommendations for national and regional monitoring and evaluation of eHealth. It thereby provides a starting point for developing national eHealth monitoring strategies.
| S-EPMC7309231 | biostudies-literature
Project description:BackgroundIntegrated disease management with self-management for Chronic Obstructive Pulmonary Disease (COPD) is effective to improve clinical outcomes. eHealth can improve patients' involvement to be able to accept and maintain a healthier lifestyle. Eventhough there is mixed evidence of the impact of eHealth on quality of life (QoL) in different settings.AimThe primary aim of the e-Vita-COPD-study was to investigate the effect of use of eHealth patient platforms on disease specific QoL of COPD patients.MethodsWe evaluated the impact of an eHealth platform on disease specific QoL measured with the clinical COPD questionnaire (CCQ), including subscales of symptoms, functional state and mental state. Interrupted time series (ITS) design was used to collect CCQ data at multiple time points. Multilevel linear regression modelling was used to compare trends in CCQ before and after the intervention.ResultsOf 742 invited COPD patients, 244 signed informed consent. For the analyses, we only included patients who actually used the eHealth platform (n = 123). The decrease of CCQ-symptoms was 0.20% before the intervention and 0.27% after the intervention; this difference in slopes was statistically significant (P = 0.027). The decrease of CCQ-mental was 0.97% before the intervention and after the intervention there was an increase of 0.017%; this difference was statistically significant (P = 0.01). No significant difference was found in the slopes of CCQ (P = 0.12) and CCQ-function (P = 0.11) before and after the intervention.ConclusionThe e-Vita eHealth platform had a potential beneficial impact on the CCQ-symptoms of COPD patients, but not on functional state. The CCQ-mental state remained stable after the intervention, but this was a deterioration compared to the improving situation before the start of the eHealth platform. Therefore, health care providers should be aware that, although symptoms improve, there might be a slight increase in anxiety and depression after introducing an eHealth intervention to support self-management.Trial registrationOur study is registered in the Dutch Trial Register (national registration of clinical trails, mandatory for publication) with number NTR4098 and can be found at http://www.trialregister.nl/trial/3936 . Date registered: 2013-07-31. First participant: 2014-01-01.
| S-EPMC6621945 | biostudies-literature
Project description:BackgroundBy 2030, the number of US adults age ≥65 will exceed 70 million. Their quality of life has been declared a national priority by the US government.ObjectiveAssess effects of an eHealth intervention for older adults on quality of life, independence, and related outcomes.DesignMulti-site, 2-arm (1:1), non-blinded randomized clinical trial. Recruitment November 2013 to May 2015; data collection through November 2016.SettingThree Wisconsin communities (urban, suburban, and rural).ParticipantsPurposive community-based sample, 390 adults age ≥65 with health challenges.Exclusionslong-term care, inability to get out of bed/chair unassisted.InterventionAccess (vs. no access) to interactive website (ElderTree) designed to improve quality of life, social connection, and independence.MeasuresPrimary outcome: quality of life (PROMIS Global Health). Secondary: independence (Instrumental Activities of Daily Living); social support (MOS Social Support); depression (Patient Health Questionnaire-8); falls prevention (Falls Behavioral Scale). Moderation: healthcare use (Medical Services Utilization). Both groups completed all measures at baseline, 6, and 12 months.ResultsThree hundred ten participants (79%) completed the 12-month survey. There were no main effects of ElderTree over time. Moderation analyses indicated that among participants with high primary care use, ElderTree (vs. control) led to better trajectories for mental quality of life (OR=0.32, 95% CI 0.10-0.54, P=0.005), social support received (OR=0.17, 95% CI 0.05-0.29, P=0.007), social support provided (OR=0.29, 95% CI 0.13-0.45, P<0.001), and depression (OR= -0.20, 95% CI -0.39 to -0.01, P=0.034). Supplemental analyses suggested ElderTree may be more effective among people with multiple (vs. 0 or 1) chronic conditions.LimitationsOnce randomized, participants were not blind to the condition; self-reports may be subject to memory bias.ConclusionInterventions like ET may help improve quality of life and socio-emotional outcomes among older adults with more illness burden. Our next study focuses on this population.Trial registrationClinicalTrials.gov ; registration ID number: NCT02128789.
| S-EPMC8183591 | biostudies-literature
Project description:BACKGROUND:The growing move towards personalised health and social care systems means that every effort needs to be made to generate patient-reported outcome data. However, the deteriorating nature of dementia can make it difficult for people with dementia to complete self-reported questionnaires and it is often necessary to rely on a family member (proxy) to report on their behalf. There is little evidence to guide how the difference between self- and proxy-reports of health reported quality of life (HRQL) in dementia can be interpreted. METHODS:We recruited people with dementia and their family carers from 78 memory Assessment Services in the UK. We used Rasch measurement methods to investigate whether a HRQL questionnaire known as DEMQOL (self-reported by the person with dementia) and DEMQOL-Proxy (proxy-reported by a family carer) can be placed on the same continuum and whether a revised scoring algorithm, based on this equated model, can be developed that takes account of the relationship between self- and proxy-reports. RESULTS:In a sample of 1434 patients and 1030 carers, our findings supported equating DEMQOL/DEMQOL-Proxy (overall fit to the model; no mis-fitting items) after addressing specific issues (eight disordered items requiring re-scoring, four pairs locally dependent items, and five items showing DIF). Cross walk tables have been produced. CONCLUSIONS:We have established for the first time that DEMQOL and DEMQOL-Proxy can be placed on the same continuum and that patients and carer proxies are reporting on the same construct when they complete these questionnaires. Where possible both DEMQOL and DEMQOL-Proxy should still be administered together, using the improved scoring algorithm reported here. Where only DEMQOL-Proxy is available, the cross walk tables provide an estimate of DEMQOL for a particular person from their DEMQOL-Proxy score.
| S-EPMC7245851 | biostudies-literature
Project description:Wearable cardiac sensors pave the way for advanced cardiac monitoring applications based on heart rate variability (HRV). In real-life settings, heart rate (HR) measurements are subject to motion artifacts that may lead to frequent data loss (missing samples in the HR signal), especially for commercial devices based on photoplethysmography (PPG). The current study had two main goals: (i) to provide a white-box quality index that estimates the amount of missing samples in any piece of HR signal; and (ii) to quantify the impact of data loss on feature extraction in a PPG-based HR signal. This was done by comparing real-life recordings from commercial sensors featuring both PPG (Empatica E4) and ECG (Zephyr BioHarness 3). After an outlier rejection process, our quality index was used to isolate portions of ECG-based HR signals that could be used as benchmark, to validate the output of Empatica E4 at the signal level and at the feature level. Our results showed high accuracy in estimating the mean HR (median error: 3.2%), poor accuracy for short-term HRV features (e.g., median error: 64% for high-frequency power), and mild accuracy for longer-term HRV features (e.g., median error: 25% for low-frequency power). These levels of errors could be reduced by using our quality index to identify time windows with few or no data loss (median errors: 0.0%, 27%, and 6.4% respectively, when no sample was missing). This quality index should be useful in future work to extract reliable cardiac features in real-life measurements, or to conduct a field validation study on wearable cardiac sensors.
| S-EPMC8400129 | biostudies-literature
Project description:Investigation of domestication footprints in three major Solanaceae species
| PRJEB26324 | ENA
Project description:BackgroundeHealth websites are increasingly being used by community members to obtain information about endometriosis. Additionally, clinicians can use these websites to enhance their understanding of the condition and refer patients to these websites. However, poor-quality information can adversely impact users. Therefore, a critical evaluation is needed to assess and recommend high-quality endometriosis websites.ObjectiveThis study aimed to evaluate the quality and provide recommendations for high-quality endometriosis eHealth websites for the community and clinicians.MethodsPRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) 2020 guidelines informed 2 Google searches of international and Australian eHealth websites. The first search string used the terms "endometriosis," "adenomyosis," or "pelvic pain," whereas "Australia" was added to the second search string. Only free eHealth websites in English were included. ENLIGHT, a validated tool, was used to assess the quality across 7 domains such as usability, visual design, user engagement, content, therapeutic persuasiveness, therapeutic alliance, and general subjective evaluation. Websites with a total score of 3.5 or more were classified as "good" according to the ENLIGHT scoring system and are recommended as high-quality eHealth websites for information on endometriosis.ResultsIn total, 117 eHealth websites were screened, and 80 were included in the quality assessment. Four high-quality eHealth websites (ie, those that scored 3.5 or more) were identified (Endometriosis Australia Facebook Page, Endometriosis UK, National Action Plan for Endometriosis on EndoActive, and Adenomyosis by the Medical Republic). These websites provided easily understood, engaging, and accurate information. Adenomyosis by the Medical Republic can be used as a resource in clinical practice. Most eHealth websites scored well, 3.5 or more in the domains of usability (n=76, 95%), visual design (n=64, 80%), and content (n=63, 79%). However, of the 63 websites, only 25 provided references and 26 provided authorship details. Few eHealth websites scored well on user engagement (n=18, 23%), therapeutic persuasiveness (n=2, 3%), and therapeutic alliance (n=22, 28%). In total, 30 (38%) eHealth websites scored well on general subjective evaluation.ConclusionsAlthough geographical location can influence the search results, we identified 4 high-quality endometriosis eHealth websites that can be recommended to the endometriosis community and clinicians. To improve quality, eHealth websites must provide evidence-based information with appropriate referencing and authorship. Factors that enhance usability, visual design, user engagement, therapeutic persuasiveness, and therapeutic alliance can lead to the successful and long-term uptake of eHealth websites. User engagement, therapeutic persuasiveness, and therapeutic alliance can be strengthened by sharing lived experiences and personal stories and by cocreating meaningful content for both the community and clinicians. Reach and discoverability can be improved by leveraging search engine optimization tools.Trial registrationPROSPERO CRD42020185475; https://www.crd.york.ac.uk/PROSPERO/display_record.php?RecordID=185475&VersionID=2124365.
| S-EPMC10809066 | biostudies-literature
Project description:BACKGROUND: Health Related Quality of Life (HRQOL) questionnaires are increasingly used in clinical practice. These Patient Reported Outcomes (PROs) are provided to the paediatrician to facilitate communication with patients during a consultation. The aim of the current article is to describe the development and introduction of a new web-based application for the use of PROs in daily paediatric clinical practice. METHODS: Currently, the use of PROs in daily clinical practice is very time consuming and often has logistical problems. The use of a web-based programme can overcome these problems and contributes to an improved use of PROs in clinical practice. We therefore developed an easily accessible website (KLIK) for outpatient treatment and a training programme for paediatricians to maximize the effectiveness and the practical use of PROs (KLIK PROfile). RESULTS: The KLIK study was launched in August 2008 to evaluate the use of the KLIK PROfile in daily clinical practice. The KLIK study evaluates whether feedback from HRQOL data could influence patient satisfaction with the consultation, the advice given, the type of referrals and topics discussed. In this multicentre study, a control group (without the use of the KLIK PROfile) is compared to an intervention group (with the use of the KLIK PROfile). A sequential cohort design is chosen to avoid contamination between the study groups. CONCLUSIONS: Based on the positive experiences with the use of the KLIK PROfile acquired during the study we conclude that the KLIK PROfile may contribute to systematically monitor and discuss HRQOL issues during consultations. The next steps will be a comprehensive evaluation of the KLIK study data and the implementation of the KLIK PROfile in daily clinical practice in different patient groups.
| S-EPMC3025868 | biostudies-other
Project description:Fresh fish are highly perishable food products and their short shelf-life limits their commercial exploitation, leads to waste and has a negative impact on aquaculture sustainability. New non-thermal food processing methods, such as High pressure (HP), are being investigated to prolong shelf-life while assuring high food quality. We applied several tools to evaluate the impacts of HP processing on European sea bass (Dicentrarchus labrax) fillets quality and shelf life. The data here presented includes visual and physical measurements of flesh quality and the microbiome and proteome profiles of control and HP-processed sea bass fillets (600MPa, 25ºC, 5min), after isothermal storage (2°C) for different periods ranging from 1 to 67 days. Color (L-, a- and b- values) change and texture (hardness, cohesiveness and adhesiveness) parameters were obtained by using appropriate colorimeter and texture analyser, respectively, during refrigerated storage. Bacterial diversity was analysed by Illumina high-throughput sequencing of the 16S rRNA gene in five pooled DNAs from control or HP-processed fillets after 1, 11 or 67 days and the raw reads were deposited in the NCBI-SRA database with accession number PRJNA517618. In addition, high-throughput sequencing of the internal transcribed spacer (ITS) region targeting yeast and moulds was run for control or HP-processed fillets at the end of storage (11 or 67 days, respectively), being deposited under SRA accession PRJNA517779. Quantitative label-free proteomics profiles were analysed by SWATH-MS (Sequential Windowed data independent Acquisition of the Total High-resolution-Mass Spectra) in myofibrillar or sarcoplasmic enriched protein extracts pooled for control or HP-processed filets after short (1d) or long-term (11-67 days) storage. These data support the findings reported in “High pressure processing of European sea bass (Dicentrarchus labrax) fillets and tools for flesh quality and shelf life monitoring” (Tsironi et al. 2019).
2019-11-06 | PXD012737 | Pride