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1.
JCO Clin Cancer Inform ; 7: e2300016, 2023 Sep.
Artigo em Inglês | MEDLINE | ID: mdl-37922433

RESUMO

PURPOSE: Performance status (PS) is a crucial assessment for research and clinical practice in lung cancer (LC), including its usage for the assessment of the suitability and toxicity of treatment or eligibility for clinical trials of patients with LC. These PS assessments are subjective and lead to substantial discrepancies between observers. To improve the objectivity of PS assessments, Electronic Activity Monitoring devices (EAMs) are increasingly used in oncology, but how these devices are used for PS assessments in LC is an issue that remains unclear. The goal of this study is to address the challenges and opportunities of the use of digital tools to support PS assessments in patients with LC. METHODS: The literature review followed PRISMA-ScR methodology. Searches were performed in the ScienceDirect, PsycInfo, ACM, IEEE Xplore, and PubMed databases. Furthermore, a panel discussion was performed to address the clinical use cases. RESULTS: Thirty-two publications were found. Most of the studies used wrist accelerometry-based wearables (59%) and monitored sleep activity (SA; 28%) or physical activity (PA; 72%). Critical findings include positive usefulness of the use of wearables to categorize moderate-to-vigorous/light PA, which was associated with better sleep and health. In addition, steps and time awake immobile were found to be associated with risk of hospitalization and survival. Use cases identified included the health assessment of patients and clinical research. CONCLUSION: There are positive experiences in the use of EAM to complement PS assessment in LC. However, there is a need for adapting thresholds to the particularities of patients with LC, for example, differentiating moderate-to-vigorous and light. Moreover, developing methodologies combining PS assessments and the use of EAM adapted to clinical and research practice is needed.


Assuntos
Neoplasias Pulmonares , Dispositivos Eletrônicos Vestíveis , Humanos , Neoplasias Pulmonares/diagnóstico , Neoplasias Pulmonares/terapia , Exercício Físico , Acelerometria , Sono
2.
Semin Oncol Nurs ; 39(3): 151437, 2023 06.
Artigo em Inglês | MEDLINE | ID: mdl-37149438

RESUMO

OBJECTIVES: LifeChamps is an EU Horizon 2020 project that aims to create a digital platform to enable monitoring of health-related quality of life and frailty in patients with cancer over the age of 65. Our primary objective is to assess feasibility, usability, acceptability, fidelity, adherence, and safety parameters when implementing LifeChamps in routine cancer care. Secondary objectives involve evaluating preliminary signals of efficacy and cost-effectiveness indicators. DATA SOURCES: This will be a mixed-methods exploratory project, involving four study sites in Greece, Spain, Sweden, and the United Kingdom. The quantitative component of LifeChamps (single-group, pre-post feasibility study) will integrate digital technologies, home-based motion sensors, self-administered questionnaires, and the electronic health record to (1) enable multimodal, real-world data collection, (2) provide patients with a coaching mobile app interface, and (3) equip healthcare professionals with an interactive, patient-monitoring dashboard. The qualitative component will determine end-user usability and acceptability via end-of-study surveys and interviews. CONCLUSION: The first patient was enrolled in the study in January 2023. Recruitment will be ongoing until the project finishes before the end of 2023. IMPLICATIONS FOR NURSING PRACTICE: LifeChamps provides a comprehensive digital health platform to enable continuous monitoring of frailty indicators and health-related quality of life determinants in geriatric cancer care. Real-world data collection will generate "big data" sets to enable development of predictive algorithms to enable patient risk classification, identification of patients in need for a comprehensive geriatric assessment, and subsequently personalized care.


Assuntos
Fragilidade , Neoplasias , Humanos , Idoso , Estudos de Viabilidade , Qualidade de Vida , Inquéritos e Questionários
3.
Front Public Health ; 11: 1043584, 2023.
Artigo em Inglês | MEDLINE | ID: mdl-37143968

RESUMO

Background: Growth hormone deficiency (GHD) is a rare disorder characterized by inadequate secretion of growth hormone (GH) from the anterior pituitary gland. One of the challenges in optimizing GH therapy is improving adherence. Using digital interventions may overcome barriers to optimum treatment delivery. Massive open online courses (MOOCs), first introduced in 2008, are courses made available over the internet without charge to a large number of people. Here, we describe a MOOC aiming to improve digital health literacy among healthcare professionals managing patients with GHD. Based on pre- and post-course assessments, we evaluate the improvement in participants' knowledge upon completion of the MOOC. Methods: The MOOC entitled 'Telemedicine: Tools to Support Growth Disorders in a Post-COVID Era' was launched in 2021. It was designed to cover 4 weeks of online learning with an expected commitment of 2 h per week, and with two courses running per year. Learners' knowledge was assessed using pre- and post-course surveys via the FutureLearn platform. Results: Out of 219 learners enrolled in the MOOC, 31 completed both the pre- and post-course assessments. Of the evaluated learners, 74% showed improved scores in the post-course assessment, resulting in a mean score increase of 21.3%. No learner achieved 100% in the pre-course assessment, compared with 12 learners (40%) who achieved 100% in the post-course assessment. The highest score increase comparing the pre- and the post-course assessments was 40%, observed in 16% of learners. There was a statistically significant improvement in post-course assessment scores from 58.1 ± 18.9% to 72.6 ± 22.4% reflecting an improvement of 14.5% (p < 0.0005) compared to the pre-course assessment. Conclusion: This "first-of-its-kind" MOOC can improve digital health literacy in the management of growth disorders. This is a crucial step toward improving the digital capability and confidence of healthcare providers and users, and to prepare them for the technological innovations in the field of growth disorders and growth hormone therapy, with the aim of improving patient care and experience. MOOCs provide an innovative, scalable and ubiquitous solution to train large numbers of healthcare professionals in limited resource settings.


Assuntos
COVID-19 , Educação a Distância , Letramento em Saúde , Humanos , Avaliação Educacional , Hormônio do Crescimento , Transtornos do Crescimento
4.
Cancers (Basel) ; 15(6)2023 Mar 15.
Artigo em Inglês | MEDLINE | ID: mdl-36980661

RESUMO

Mobile Health (mHealth) has a great potential to enhance the self-management of cancer patients and survivors. Our study aimed to perform a scoping review to evaluate the impact and trends of mobile application-based interventions on adherence and their effects on health outcomes among the cancer population. In addition, we aimed to develop a taxonomy of mobile-app-based interventions to assist app developers and healthcare researchers in creating future mHealth cancer care solutions. Relevant articles were screened from the online databases PubMed, EMBASE, and Scopus, spanning the time period from 1 January 2016 to 31 December 2022. Of the 4135 articles initially identified, 55 were finally selected for the review. In the selected studies, breast cancer was the focus of 20 studies (36%), while mixed cancers were the subject of 23 studies (42%). The studies revealed that the usage rate of mHealth was over 80% in 41 of the 55 studies, with factors such as guided supervision, personalized suggestions, theoretical intervention foundations, and wearable technology enhancing adherence and efficacy. However, cancer progression, technical challenges, and unfamiliarity with devices were common factors that led to dropouts. We also proposed a taxonomy based on diverse theoretical foundations of mHealth interventions, delivery methods, psycho-educational programs, and social platforms. We suggest that future research should investigate, improve, and verify this taxonomy classification to enhance the design and efficacy of mHealth interventions.

5.
JMIR Res Protoc ; 11(11): e38536, 2022 Nov 29.
Artigo em Inglês | MEDLINE | ID: mdl-36445734

RESUMO

BACKGROUND: Stress and anxiety are psychophysiological responses commonly experienced by patients during the perioperative process that can increase presurgical and postsurgical complications to a comprehensive and positive recovery. Preventing and intervening in stress and anxiety can help patients achieve positive health and well-being outcomes. Similarly, the provision of education about surgery can be a crucial component and is inversely correlated with preoperative anxiety levels. However, few patients receive stress and anxiety relief support before surgery, and resource constraints make face-to-face education sessions untenable. Digital health interventions can be helpful in empowering patients and enhancing a more positive experience. Digital health interventions have been shown to help patients feel informed about the possible benefits and risks of available treatment options. However, they currently focus only on providing informative content, neglecting the importance of personalization and patient empowerment. OBJECTIVE: This study aimed to explore the feasibility of a digital health intervention called the Adhera CARINAE Digital Health Program, designed to provide evidence-based, personalized stress- and anxiety-management methods enabled by a comprehensive digital ecosystem that incorporates wearable, mobile, and virtual reality technologies. The intervention program includes the use of advanced data-driven techniques for tailored patient education and lifestyle support. METHODS: The trial will include 5 hospitals across 3 European countries and will use a randomized controlled design including 30 intervention participants and 30 control group participants. The involved surgeries are cardiopulmonary and coronary artery bypass surgeries, cardiac valve replacement, prostate or bladder cancer surgeries, hip and knee replacement, maxillofacial surgery, or scoliosis. The control group will receive standard care, and the intervention group will additionally be exposed to the digital health intervention program. RESULTS: The recruitment process started in January 2022 and has been completed. The primary impact analysis is currently ongoing. The expected results will be published in early 2023. CONCLUSIONS: This manuscript details a comprehensive protocol for a study that will provide valuable information about the intervention program, such as the measurement of comparative intervention effects on stress; anxiety and pain management; and usability by patients, caregivers, and health care professionals. This will contribute to the evidence planning process for the future adoption of diverse digital health solutions in the field of surgery. TRIAL REGISTRATION: ClinicalTrials.gov NCT05184725; https://www.clinicaltrials.gov/ct2/show/NCT05184725. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/38536.

6.
PLoS One ; 17(11): e0273290, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-36346807

RESUMO

BACKGROUND: Patients with chronic disease represent an at-risk group in the face of the COVID-19 crisis as they need to regularly monitor their lifestyle and emotional management. Coping with the illness becomes a challenge due to supply problems and lack of access to health care facilities. It is expected these limitations, along with lockdown and social distancing measures, have affected the routine disease management of these patients, being more pronounced in low- and middle-income countries with a flawed health care system. OBJECTIVES: The purpose of this study is to describe a protocol for a randomized controlled trial to test the efficacy of the Adhera® MejoraCare Digital Program, an mHealth intervention aimed at improving the quality of life of patients with chronic diseases during the COVID-19 outbreak in Paraguay. METHOD: A two-arm randomized controlled trial will be carried out, with repeated measures (baseline, 1-month, 3-month, 6-month, and 12-month) under two conditions: Adhera® MejoraCare Digital Program or waiting list. The primary outcome is a change in the quality of life on the EuroQol 5-Dimensions 3-Levels Questionnaire (EQ-5D-3L). Other secondary outcomes, as the effect on anxiety and health empowerment, will be considered. All participants must be 18 years of age or older and meet the criteria for chronic disease. A total of 96 participants will be recruited (48 per arm). CONCLUSIONS: It is expected that the Adhera® MejoraCare Digital Program will show significant improvements in quality of life and emotional distress compared to the waiting list condition. Additionally, it is hypothesized that this intervention will be positively evaluated by the participants in terms of usability and satisfaction. The findings will provide new insights into the viability and efficacy of mHealth solutions for chronic disease management in developing countries and in times of pandemic. TRIAL REGISTRATION: ClinicalTrials.gov NCT04659746.


Assuntos
COVID-19 , Telemedicina , Humanos , Adolescente , Adulto , COVID-19/epidemiologia , Qualidade de Vida , SARS-CoV-2 , Paraguai/epidemiologia , Controle de Doenças Transmissíveis , Doença Crônica , Ensaios Clínicos Controlados Aleatórios como Assunto
7.
JMIR Res Protoc ; 11(10): e37704, 2022 Oct 14.
Artigo em Inglês | MEDLINE | ID: mdl-36166648

RESUMO

BACKGROUND: COVID-19 pandemic has revealed the weaknesses of most health systems around the world, collapsing them and depleting their available health care resources. Fortunately, the development and enforcement of specific public health policies, such as vaccination, mask wearing, and social distancing, among others, has reduced the prevalence and complications associated with COVID-19 in its acute phase. However, the aftermath of the global pandemic has called for an efficient approach to manage patients with long COVID-19. This is a great opportunity to leverage on innovative digital health solutions to provide exhausted health care systems with the most cost-effective and efficient tools available to support the clinical management of this population. In this context, the SENSING-AI project is focused on the research toward the implementation of an artificial intelligence-driven digital health solution that supports both the adaptive self-management of people living with long COVID-19 and the health care staff in charge of the management and follow-up of this population. OBJECTIVE: The objective of this protocol is the prospective collection of psychometric and biometric data from 10 patients for training algorithms and prediction models to complement the SENSING-AI cohort. METHODS: Publicly available health and lifestyle data registries will be consulted and complemented with a retrospective cohort of anonymized data collected from clinical information of patients diagnosed with long COVID-19. Furthermore, a prospective patient-generated data set will be captured using wearable devices and validated patient-reported outcomes questionnaires to complement the retrospective cohort. Finally, the 'Findability, Accessibility, Interoperability, and Reuse' guiding principles for scientific data management and stewardship will be applied to the resulting data set to encourage the continuous process of discovery, evaluation, and reuse of information for the research community at large. RESULTS: The SENSING-AI cohort is expected to be completed during 2022. It is expected that sufficient data will be obtained to generate artificial intelligence models based on behavior change and mental well-being techniques to improve patients' self-management, while providing useful and timely clinical decision support services to health care professionals based on risk stratification models and early detection of exacerbations. CONCLUSIONS: SENSING-AI focuses on obtaining high-quality data of patients with long COVID-19 during their daily life. Supporting these patients is of paramount importance in the current pandemic situation, including supporting their health care professionals in a cost-effective and efficient management of long COVID-19. TRIAL REGISTRATION: Clinicaltrials.gov NCT05204615; https://clinicaltrials.gov/ct2/show/NCT05204615. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/37704.

8.
BMC Med Inform Decis Mak ; 22(1): 215, 2022 08 13.
Artigo em Inglês | MEDLINE | ID: mdl-35964116

RESUMO

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.


Assuntos
Cuidadores , Autogestão , Cuidadores/psicologia , Criança , Estudos de Viabilidade , Hormônio do Crescimento , Humanos , Estudos Prospectivos , Qualidade de Vida/psicologia
9.
Patient Prefer Adherence ; 16: 1663-1671, 2022.
Artigo em Inglês | MEDLINE | ID: mdl-35846871

RESUMO

Pediatric growth hormone (GH) deficiency is a licensed indication for replacement therapy with recombinant human growth hormone (r-hGH). Treatment, consisting of daily subcutaneous injections, extends from the time of diagnosis until cessation of linear growth at completion of puberty. Suboptimal adherence to r-hGH therapy is common and has been well documented to substantially impair the growth response and achievement of the optimal goal which is attainment of adult height within the genetic target range. The causes of poor adherence are complex and include disease-, patient-, doctor-, and treatment-related factors. Interventions for suboptimal adherence are important for a long-term successful outcome and can include both face-to-face and digital strategies. Face-to-face interventions include behavioral change approaches such as motivational interviewing and non-judgmental assessment. Medical and nursing staff require training in these techniques. Digital solutions are rapidly advancing as evidenced by the electronic digital auto-injector device, easypod® (Merck Healthcare KGaA, Darmstadt, Germany), which uses the web-based easypod® connect platform allowing adherence data to be transmitted electronically to healthcare professionals (HCPs), who can then access GH treatment history, enhancing clinical decisions. Over the past 10 years, the multi-national Easypod® Connect Observational Study has reported high levels of adherence (>85%) from up to 40 countries. The easypod® connect system can be supported by a smartphone app, growlink™, which facilitates the interactions between the patients, their care team, and patient support services. HCPs are empowered by new digital techniques, however, the human-digital partnership remains essential for optimal growth management. The pediatric patient on r-hGH therapy will benefit from these innovations to enhance adherence and optimize long-term response.

10.
JMIR Form Res ; 6(6): e32354, 2022 Jun 22.
Artigo em Inglês | MEDLINE | ID: mdl-35731554

RESUMO

BACKGROUND: Physical activity (PA) is the most well-established lifestyle factor associated with breast cancer (BC) survival. Even women with advanced BC may benefit from moderate PA. However, most BC symptoms and treatment side effects are barriers to PA. Mobile health coaching systems can implement functionalities and features based on behavioral change theories to promote healthier behaviors. However, to increase its acceptability among women with BC, it is essential that these digital persuasive systems are designed considering their contextual characteristics, needs, and preferences. OBJECTIVE: This study aimed to examine the potential acceptability and feasibility of a mobile-based intervention to promote PA in patients with BC; assess usability and other aspects of the user experience; and identify key considerations and aspects for future improvements, which may help increase and sustain acceptability and engagement. METHODS: A mixed methods case series evaluation of usability and acceptability was conducted in this study. The study comprised 3 sessions: initial, home, and final sessions. Two standardized scales were used: the Satisfaction with Life Scale and the International Physical Activity Questionnaire-Short Form. Participants were asked to use the app at home for approximately 2 weeks. App use and PA data were collected from the app and stored on a secure server during this period. In the final session, the participants filled in 2 app evaluation scales and took part in a short individual interview. They also completed the System Usability Scale and the user version of the Mobile App Rating Scale. Participants were provided with a waist pocket, wired in-ear headphones, and a smartphone. They also received printed instructions. A content analysis of the qualitative data collected in the interviews was conducted iteratively, ensuring that no critical information was overlooked. RESULTS: The International Physical Activity Questionnaire-Short Form found that all participants (n=4) were moderately active; however, half of them did not reach the recommended levels in the guidelines. System Usability Scale scores were all >70 out of 100 (72.5, 77.5, 95, and 80), whereas the overall user version of the Mobile App Rating Scale scores were 4, 4.3, 4.4, and 3.6 out of 5. The app was perceived to be nice, user-friendly, straightforward, and easy to understand. Recognition of achievements, the possibility of checking activity history, and the rescheduling option were positively highlighted. Technical difficulties with system data collection, particularly with the miscount of steps, could make users feel frustrated. The participants suggested improvements and indicated that the app has the potential to work well for survivors of BC. CONCLUSIONS: Early results presented in this study point to the potential of this tool concept to provide a friendly and satisfying coaching experience to users, which may help improve PA adherence in survivors of BC.

11.
JMIR Mhealth Uhealth ; 10(1): e32626, 2022 01 20.
Artigo em Inglês | MEDLINE | ID: mdl-35049518

RESUMO

BACKGROUND: Recombinant human growth hormone (rhGH) therapy is an effective treatment for children with growth disorders. However, poor outcomes are often associated with suboptimal adherence to treatment. OBJECTIVE: The easypod connected injection device records and transmits injection settings and dose data from patients receiving rhGH. In this study, we evaluated adherence to rhGH treatment, and associated growth outcomes, in Latin American patients. METHODS: Adherence and growth data from patients aged 2-18 years from 12 Latin American countries were analyzed. Adherence data were available for 6207 patients with 2,449,879 injections, and growth data were available for 497 patients with 2232 measurements. Adherence was categorized, based on milligrams of rhGH injected versus milligrams of rhGH prescribed, as high (≥85%), intermediate (>56%-<85%), or low (≤56%). Transmission frequency was categorized as high (≥1 per 3 months) or low (<1 per 3 months). Chi-square tests were applied to study the effect of pubertal status at treatment start and sex on high adherence, and to test differences in frequency transmission between the three adherence levels. Multilevel linear regression techniques were applied to study the effect of adherence on observed change in height standard deviation score (∆HSDS). RESULTS: Overall, 68% (4213/6207), 25% (n=1574), and 7% (n=420) of patients had high, intermediate, and low adherence, respectively. Pubertal status at treatment start and sex did not have a significant effect on high adherence. Significant differences were found in the proportion of patients with high transmission frequency between high (2018/3404, 59%), intermediate (608/1331, 46%), and low (123/351, 35%) adherence groups (P<.001). Adherence level had a significant effect on ∆HSDS (P=.006). Mean catch-up growth between 0-24 months was +0.65 SD overall (+0.52 SD in patients with low/intermediate monthly adherence and +0.69 SD in patients with high monthly adherence). This difference translated into 1.1 cm greater catch-up growth with high adherence. CONCLUSIONS: The data extracted from the easypod Connect ecosystem showed high adherence to rhGH treatment in Latin American patients, with positive growth outcomes, indicating the importance of connected device solutions for rhGH treatment in patients with growth disorders.


Assuntos
Ecossistema , Hormônio do Crescimento Humano , Adolescente , Estatura , Criança , Pré-Escolar , Transtornos do Crescimento/tratamento farmacológico , Hormônio do Crescimento Humano/uso terapêutico , Humanos , América Latina/epidemiologia
12.
Stud Health Technol Inform ; 289: 290-292, 2022 Jan 14.
Artigo em Inglês | MEDLINE | ID: mdl-35062149

RESUMO

In this demo, we provide an overview of the digital platform ADHERA CARING which has been used for an intervention designed for emotional and self-management support of caregivers of children receiving growth hormone treatment (GHt). ADHERA CARING provides tailored emotional and self-management support to caregivers of children undergoing GHt to improve adherence to treatment through positive education, personalized motivational messages, and emotional support. This digital intervention has already been piloted in a clinical setting as part of an ongoing feasibility clinical study (NCT04812665).


Assuntos
Cuidadores , Autogestão , Criança , Emoções , Hormônio do Crescimento , Humanos , Motivação
13.
Stud Health Technol Inform ; 289: 371-375, 2022 Jan 14.
Artigo em Inglês | MEDLINE | ID: mdl-35062169

RESUMO

In recent years there has been growing research on the combination of evidence-based behavioral change techniques with mobile-based recommender systems. In this paper, we have focused on understanding the psychological burdens experienced by caregivers of children undergoing growth hormone treatment (GHt) and the perceived barriers to and drivers of the adoption of a digital health solution. This is a mixed-methods formative research study looking into technical acceptance aspects of using digital health for the emotional support of parents of children undergoing GHt. After one month using the ADHERA CARING platform (Adhera Health, Inc., Palo Alto, CA), individual semi-structured interviews were conducted. ADHERA CARING provides tailored emotional and self-management support to caregivers of children undergoing GHt to improve adherence to treatment through positive education, personalized motivational messages, and emotional support. A preliminary thematic analysis and categorization were carried out, based on the Behavioral Intervention Technology (BIT) model. The majority of participants were female. All caregivers positively valued having the tool, especially at the beginning of treatment. Information provided in the educational module was useful and improved self-efficacy. Motivational messages contributed to commitment and reinforced the educational content, thus promoting continuity of treatment and potentially improving treatment efficacy. Most participants (n=10, 80%) accessed all educational units and completed all the 27 quiz questions. Regarding the motivational messages, the overall average rating was 4.55 out of 5.00. ADHERA CARING has the potential to help caregivers to understand the treatment journey. Nevertheless, users have identified that some types of educational content are more valuable at specific stages of the treatment journey, which suggests that personalization of educational content is required to adapt to different stages of the patient journey.


Assuntos
Cuidadores , Autogestão , Feminino , Hormônio do Crescimento , Humanos , Masculino , Motivação , Pais
14.
PLOS Digit Health ; 1(12): e0000157, 2022 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-36812651

RESUMO

Mobile health technology holds great promise for the clinical management of patients with chronic disease. However, evidence on the implementation of projects involving digital health solutions in rheumatology is scarce. We aimed to study the feasibility of a hybrid (virtual and face-to-face) monitoring strategy for personalized care in rheumatoid arthritis (RA) and spondyloarthritis (SpA). This project included the development of a remote monitoring model and its assessment. After a focus group with patients and rheumatologists, relevant concerns regarding the management of RA and SpA were raised, leading to the development of the Mixed Attention Model (MAM), which combined hybrid (virtual and face-to-face) monitoring. Then, a prospective study using the mobile solution Adhera for Rheumatology was conducted. Over a 3-month follow-up period, patients were given the opportunity to complete disease-specific electronic patient reported outcomes (ePROs) for RA and SpA with a pre-established frequency, as well as flares and changes in medication at any time. Number of interactions and alerts were assessed. The usability of the mobile solution was measured by the Net-Promoter Score (NPS) and through a 5-star Likert scale. Following the MAM development, forty-six patients were recruited to utilize the mobile solution, of whom 22 had RA and 24 SpA. There were 4,019 total interactions in the RA group, and 3,160 in the SpA group. Fifteen patients generated a total of 26 alerts, of which 24 were flares and 2 were medication-related problems; most (69%) were managed remotely. Regarding patient satisfaction, 65% of the respondents were considered to have endorsed Adhera for Rheumatology, yielding a NPS of 57 and an overall rating was 4.3 out of 5 stars. We concluded that the use of the digital health solution is feasible in clinical practice to monitor ePROs for RA and SpA. Next steps involve the implementation of this telemonitoring method in a multicentric setting.

15.
JMIR Public Health Surveill ; 7(12): e31645, 2021 12 08.
Artigo em Inglês | MEDLINE | ID: mdl-34787574

RESUMO

The COVID-19 pandemic, caused by severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2), has caused widespread fear and stress. The pandemic has affected everyone, everywhere, and created systemic inequities, leaving no one behind. In India alone, more than 34,094,373 confirmed COVID-19 cases and 452,454 related deaths have been reported as of October 19, 2021. Around May 2021, the daily number of new COVID-19 cases crossed the 400,000 mark, seriously hampering the health care system. Despite the devastating situation, the public response was seen through their efforts to come forward with innovative ideas for potential ways to combat the pandemic, for instance, dealing with the shortage of oxygen cylinders and hospital bed availability. With increasing COVID-19 vaccination rates since September 2021, along with the diminishing number of daily new cases, the country is conducting preventive and preparatory measures for the third wave. In this article, we propose the pivotal role of public participation and digital solutions to re-establish our society and describe how Sustainable Development Goals (SDGs) can support eHealth initiatives and mitigate infodemics to tackle a postpandemic situation. This viewpoint reflects that the COVID-19 pandemic has featured a need to bring together research findings across disciplines, build greater coherence within the field, and be a driving force for multi-sectoral, cross-disciplinary collaboration. The article also highlights the various needs to develop digital solutions that can be applied to pandemic situations and be reprocessed to focus on other SDGs. Promoting the use of digital health care solutions to implement preventive measures can be enhanced by public empowerment and engagement. Wearable technologies can be efficiently used for remote monitoring or home-based care for patients with chronic conditions. Furthermore, the development and implementation of informational tools can aid the improvement of well-being and dissolve panic-ridden behaviors contributing toward infodemics. Thus, a call to action for an observatory of digital health initiatives on COVID-19 is required to share the main conclusions and lessons learned in terms of resilience, crisis mitigation, and preparedness.


Assuntos
COVID-19 , Pandemias , Vacinas contra COVID-19 , Humanos , Índia/epidemiologia , Infodemia , Pandemias/prevenção & controle , SARS-CoV-2
17.
Front Pediatr ; 9: 715705, 2021.
Artigo em Inglês | MEDLINE | ID: mdl-34395347

RESUMO

Digitalization of healthcare delivery is rapidly fostering development of precision medicine. Multiple digital technologies, known as telehealth or eHealth tools, are guiding individualized diagnosis and treatment for patients, and can contribute significantly to the objectives of precision medicine. From a basis of "one-size-fits-all" healthcare, precision medicine provides a paradigm shift to deliver a more nuanced and personalized approach. Genomic medicine utilizing new technologies can provide precision analysis of causative mutations, with personalized understanding of mechanisms and effective therapy. Education is fundamental to the telehealth process, with artificial intelligence (AI) enhancing learning for healthcare professionals and empowering patients to contribute to their care. The Gulf Cooperation Council (GCC) region is rapidly implementing telehealth strategies at all levels and a workshop was convened to discuss aspirations of precision medicine in the context of pediatric endocrinology, including diabetes and growth disorders, with this paper based on those discussions. GCC regional investment in AI, bioinformatics and genomic medicine, is rapidly providing healthcare benefits. However, embracing precision medicine is presenting some major new design, installation and skills challenges. Genomic medicine is enabling precision and personalization of diagnosis and therapy of endocrine conditions. Digital education and communication tools in the field of endocrinology include chatbots, interactive robots and augmented reality. Obesity and diabetes are a major challenge in the GCC region and eHealth tools are increasingly being used for management of care. With regard to growth failure, digital technologies for growth hormone (GH) administration are being shown to enhance adherence and response outcomes. While technical innovations become more affordable with increasing adoption, we should be aware of sustainability, design and implementation costs, training of HCPs and prediction of overall healthcare benefits, which are essential for precision medicine to develop and for its objectives to be achieved.

18.
Diagn Microbiol Infect Dis ; 101(2): 115070, 2021 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-34167045

RESUMO

The novel coronavirus disease 2019 (COVID-19) is a novel and exponentially growing disease, and consequently, the accelerated development of knowledge from good data is possible quickly and globally. In order to combat the global pandemic of COVID-19, all humans on earth need to make difficult strategic decisions on three very different scales, all fueled by Analytical and Artificial Intelligence-based predictive Models.


Assuntos
COVID-19/epidemiologia , Disseminação de Informação/métodos , Inteligência Artificial , Atenção à Saúde , Surtos de Doenças , Humanos , Modelos Teóricos
20.
Growth Horm IGF Res ; 59: 101408, 2021 08.
Artigo em Inglês | MEDLINE | ID: mdl-34102547

RESUMO

Paediatric disorders of impaired linear growth are challenging to manage, in part because of delays in the identification of pathological short stature and subsequent referral and diagnosis, the requirement for long-term therapy, and frequent poor adherence to treatment, notably with human growth hormone (hGH). Digital health technologies hold promise for improving outcomes in paediatric growth disorders by supporting personalisation of care, from diagnosis to treatment and follow up. The value of automated systems in monitoring linear growth in children has been demonstrated in Finland, with findings that such a system is more effective than a traditional manual system for early diagnosis of abnormal growth. Artificial intelligence has potential to resolve problems of variability that may occur during analysis of growth information, and augmented reality systems have been developed that aim to educate patients and caregivers about growth disorders and their treatment (such as injection techniques for hGH administration). Adherence to hGH treatment is often suboptimal, which negatively impacts the achievement of physical and psychological benefits of the treatment. Personalisation of adherence support necessitates capturing individual patient adherence data; the use of technology to assist with this is exemplified by the use of an electronic injection device, which shares real-time recordings of the timing, date and dose of hGH delivered to the patient with the clinician, via web-based software. The use of an electronic device is associated with high levels of adherence to hGH treatment and improved growth outcomes. It can be anticipated that future technological advances, coupled with continued 'human interventions' from healthcare providers, will further improve management of paediatric growth disorders.


Assuntos
Inteligência Artificial , Tecnologia Digital , Transtornos do Crescimento/diagnóstico , Transtornos do Crescimento/tratamento farmacológico , Hormônio do Crescimento Humano/administração & dosagem , Hormônio do Crescimento Humano/análise , Adesão à Medicação/estatística & dados numéricos , Humanos
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