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Using a digital patient powered research network to identify outcomes of importance to patients with multiple myeloma.

BACKGROUND: Social media platforms give patients a voice by allowing them to discuss their health and connect with others. These unfiltered and genuine reports offer direct access to what matters most to patients. Exploring the patient-reported outcomes discussed in these platforms reveal clinical insights and behavioral patterns of the real-world patient journey. This research study reviewed health-related quality of life (HRQoL) concepts reported by patients with multiple myeloma (MM). METHODS: Data were obtained using the Belong.life patient-powered research network (PPRN) using social med

Assessing Efgartigimod (VYVGART™) Social Media Posts in Generalized Myasthenia Gravis to Understand Patient, Caregiver, and Health Care Professional Sentiments.

INTRODUCTION: Myasthenia gravis (MG) is a chronic autoimmune neuromuscular disorder characterized by fluctuating muscle weakness (ocular, bulbar, limb, and respiratory). Efgartigimod (VYVGART), a first-in-class neonatal Fc receptor antagonist, was approved for treatment of generalized MG (gMG). This study aimed to explore real-world sentiments, wherein in sentiments refer to real-world perceptions expressed by patients, caregivers, and healthcare professionals (HCPs) on VYVGART and VYVGART Hytrulo, through structured social media analysis. METHODS: This social media listening study was design

Communicating Health Literacy on Prescription Medications on Social Media: In-depth Interviews With "Patient Influencers".

BackgroundHistorically, pharmaceutical companies have struggled with trust and brand reputation among key stakeholders and have adopted innovative marketing strategies to reach patients directly and rebuild those relationships. Social media influencers are a popular strategy to influence younger demographics, including Generation Z and millennials. It is common for social media influencers to work in paid partnerships with brands; this is a multibillion-dollar industry. Long have patients been active in online health communities and social media platforms such as Twitter and Instagram, but in

Empowering Patients in Clinical Research: A Narrative Review.

This narrative review focuses on the evolving shift toward patient centricity in Indian clinical research, highlighting persistent gaps in structured patient engagement. The review synthesizes existing literature on patient-centered clinical research and contextualizes these principles through two India-based initiatives: Patient Advocates for Clinical Research (PACER) and Patient Recommendations for Ethical Decentralized and Inclusive Clinical Trials (PREDICT). A targeted literature search was conducted across Medline (via PubMed), Google Scholar, and the Cochrane Library to identify publishe

Adult cancer survivors' perceptions of immersive virtual reality exercise and its utility during chemotherapy infusion: a concurrent mixed method exploratory study.

PurposeVirtual reality (VR) exercise may help promote physical activity in cancer survivors. Understanding infusion-specific barriers and facilitators is essential for designing effective interventions that can be integrated into chemotherapy care. This study explored adult cancer survivors' perceptions and preferences regarding VR exercise during chemotherapy infusion.MethodsThis exploratory concurrent mixed-methods study included community-dwelling adults (≥ 18 years) who had completed primary cancer treatment involving chemotherapy. Participants trialled a commercially available immersive V

Leveraging patient experience data to guide medicines development, regulation, access decisions and clinical care in the EU.

Patient experience data (PED), provided by patients/their carers without interpretation by clinicians, directly capture what matters more to patients on their medical condition, treatment and impact of healthcare. PED can be collected through different methodologies and these need to be robust and validated for its intended use. Medicine regulators are increasingly encouraging stakeholders to generate, collect and submit PED to support both scientific advice in development programs and regulatory decisions on the approval and use of these medicines. This article reviews the existing definition

Strategies to improve recruitment to randomised trials.

BACKGROUND: Recruiting participants to randomised controlled trials (RCTs) is challenging. Identifying effective recruitment strategies would benefit health research: poor recruitment leads to underpowered trials, reducing the reliability of findings and increasing the risk of wasted resources, ethical concerns, and trial failure. Evidence to inform recruitment strategies is increasingly generated through Studies Within A Trial (SWATs), which are methodological studies embedded within host RCTs. This is an update of a review last published in 2018. OBJECTIVES: Primary: to quantify the effects

Digital therapeutics from bench to bedside.

As a new therapeutic technique based on digital technology, the commercialization and clinical application of digital therapeutics (DTx) are increasing, and the demand for expansion to new clinical fields is remarkably high. However, the use of DTx as a general medical component is still ambiguous, and this ambiguity may be owing to a lack of consensus on a definition, in addition to insufficiencies in research and development, clinical trials, standardization of regulatory frameworks, and technological maturity. In this study, we conduct an in-depth investigation and analysis of definitions,

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… However, from the examples of common digital media, we can infer that users’ influence on digital content varies according to external factors. … A study which analyzed the factors affecting digital media user acceptance indicated that a reader’s awareness, interest, and intention to use e-books are affected by the reader’s age, education level, and income 45 . …

Twitter Social Media is an Effective Tool for Breast Cancer Patient Education and Support: Patient-Reported Outcomes by Survey.

BackgroundDespite reported benefits, many women do not attend breast cancer support groups. Abundant online resources for support exist, but information regarding the effectiveness of participation is lacking. We report the results of a Twitter breast cancer support community participant survey.ObjectiveThe aim was to determine the effectiveness of social media as a tool for breast cancer patient education and decreasing anxiety.MethodsThe Breast Cancer Social Media Twitter support community (#BCSM) began in July 2011. Institutional review board approval with a waiver of informed consent was o

New Technologies and Digital Health Tools in Patients With Solid Tumors and Hematological Malignancies: Cross-Sectional Multicenter Survey Study.

BackgroundBarriers to eHealth use include lack of technological infrastructure, resistance to change, and inequities in access. However, patterns of access to and use of eHealth tools in people being treated for cancer have not been fully described in the literature.ObjectiveOur aim was to describe the patterns of access to and use of eHealth tools among outpatients receiving treatment for hematological malignancies and solid tumors.MethodsWe conducted a cross-sectional multicenter study using a survey offered to patients aged over 18 years receiving outpatient treatment for hematological mali

Телемедицина в искусстве для лечения нейроразвитых и неврологических расстройств: аналитическая оценка.

БАКГРУС: Искусственная терапия, охватывающая арттерапию, музыкальную терапию, драматическую терапию и танцевальную терапию с более широкой практикой экспрессивной терапии, продемонстрировала положительные результаты в лечении нейроразвитых и неврологических расстройств (ННД). Все более важное значение для улучшения доступа людей с нарушениями подвижности или людей, проживающих в отдаленных районах, к средствам телемедицины приобретает интеграция методов лечения искусств. Цель этого исследования состоит в том, чтобы составить карту существующей литературы, с тем чтобы дать углубленный обзор тел

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… For ADHD, individual sessions have integrated relaxation activities, digital media exploration, and emotional release through expressive arts, as evidenced by a case study ( Kim and Chung, 2024 ). … Interventions used in telehealth arts therapies for individuals with NNDs are diverse, including therapeutic singing and songwriting, music listening, improvisation, musical recall exercises, group singing, relaxation, digital media exploration, art creation, and virtual reality experiences. …

Development of Web-Based Education Modules to Improve Carer Engagement in Cancer Care: Design and User Experience Evaluation of the e-Triadic Oncology (eTRIO) Modules for Clinicians, Patients, and Carers.

BackgroundCarers often assume key roles in cancer care. However, many carers report feeling disempowered and ill-equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers.ObjectiveTo facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadi

Overview and characterization of penile cancer content across social media platforms.

BackgroundSocial media platforms (SMP) are an emerging resource that allows physicians, patients, and families to converse on cancer prevention, diagnosis, and treatment. We aimed to characterize penile cancer (PC) content shared on SMP.MethodsWe searched PC posts on Twitter, Facebook, and Instagram from July 1st, 2021, through June 30th, 2022. Two independent, blinded reviewers analyzed the hashtags: #PenileCancer, #PenileCancerAwareness, and #PenileNeoplasm. Descriptive statistics were used for posts characterization, Pearson´s correlation coefficient for associations, and Cohen's weighted k

Online education for rare genetic diseases: a systematic review.

IntroductionRare genetic diseases are, collectively, not in fact rare. However, educational opportunities focused on rare genetic disease can be limited. The Internet has increased the availability of education related to rare genetic disease and is accessible to a diverse range of people who seek out such information, including healthcare professionals, researchers, students, patients, and the public.PurposeTo assess the potential educational outreach of the Internet, this systematic literature review will appraise the landscape of what education for rare genetic disease is available online,

Usability testing of an electronic patient-reported outcome system linked to an electronic chemotherapy prescribing and patient management system for patients with cancer.

BackgroundPeople affected by cancer experience a wide range of symptoms which have a major impact on their functioning and health-related quality of life (HRQoL). One way to measure the impact of cancer symptoms is through the use of patient-reported outcomes.MethodsAn electronic patient-reported outcome (ePRO) application (ChemoPRO®) was designed to be used by cancer patients to report their symptoms and communicate with their clinical team. Usability testing sessions were conducted with people with lived experience of cancer to understand how real users interact with the ChemoPRO® system. On

Опыт, накопленный пациентами в ходе видеоконференций: качественный систематический обзор.

Консультация Video (VC) приобрела жизненно важное значение для улучшения доступа к медицинскому обслуживанию во время пандемии COVID-19 и остается таковой. Несмотря на доказательства эффективности, проблемы, включая технологическую грамотность и несоответствия в опыте, указывают на необходимость проведения более широких исследований, ориентированных на пациентов. Несмотря на то, что пациенты ценят удобство ВК, проблемы, возникающие во время сложных проблем и предпочтения пациентов в плане личного ухода, сохраняются. Обобщение качественных исследований дает представление о фрагментированном пон

Современные методы диагностики медицинских паразитов и артроподов

Обычные методы, такие, как микроскопия, используются для диагностики паразитических заболеваний и медицинских заболеваний, связанных с артроподами, на протяжении многих лет. Некоторые методы считаются золотыми. Однако их ограниченная чувствительность, специфичность и точность, а также потребность в дорогостоящих реагентах и высококвалифицированных технических специалистах являются критическими проблемами. В этой связи постоянно разрабатываются новые инструменты для уменьшения числа проблем. Недавно three Возникли самые современные методы: штрих-кодирование ДНК, геометрические морфометры и иску

Воздействие взаимосвязи между здоровьем и психическим благополучием и качеством жизни лиц с множественным склерозом и лиц, обеспечивающих уход за ними: систематический обзор.

ЦЕНТРАЛЬНАЯ ИНФОРМАЦИЯ: Связанные мероприятия в области охраны здоровья (ОЗ) могут повысить психологическое благосостояние и качество жизни лиц, обеспечивающих уход, и лиц с множественным склерозом (МС); однако это воздействие не было подвергнуто тщательной оценке. Цель этого систематического обзора заключается в обобщении литературы, в которой дается оценка воздействия технологии CH на психологическое благополучие и/или QOL людей с MS (PwMS) и/или лиц, обеспечивающих уход за ними. МЕТОДЫ: Протокол систематического обзора зарегистрирован в Международном перспективном регистре систематических о

Консолидация, систематическая оценка и сопоставление руководящих рекомендаций в отношении лечения хронической боли: Протокол для составления карты рекомендаций в отношении цифрового хронического заболевания.

ВВЕДЕНИЕ: Хроническая боль 1 В 5 :: взрослые и дети во всем мире; однако управление попрежнему носит весьма различный характер, и, как правило, обеспечивается низкий уровень медицинского обслуживания. Несогласованность рекомендаций, содержащихся в руководящих принципах клинической практики в отношении лечения хронической боли, способствует неоптимальному лечению пациентов. Мы будем разрабатывать и распространять живую цифровую карту рекомендаций в отношении хронической боли (e-Chronic Bain RecMap) для выявления заслуживающих доверия рекомендаций в three высокоприоритетные области1) опиоиды,2)

Insights from Social Media on the Patient Experience of Living With Rare Eosinophil-Driven Diseases.

Eosinophilic granulomatosis with polyangiitis (EGPA) and hypereosinophilic syndrome (HES) are driven by persistently high eosinophil numbers, causing damage to tissues and organs. As rare diseases, they are often underappreciated by healthcare professionals. Using a social listening analysis, we collected patient and caregiver comments relating to EGPA and HES made on online social platforms between 1 January 2019 and 31 May 2020, in English, French, and German. Results were classified into key areas of interest. In total, 746 comments with consent to publish were collected mentioning EGPA, an