'It's especially good just to know that you're not the only one': a qualitative study exploring experiences with online peer support programmes for the Fragile X community.

Background: Accessing peer support can be difficult for people with, or carers of people with, inherited intellectual disabilities. One way to improve access is to provide services online, yet few studies have explored people's experiences with online peer support programmes. We aimed to explore experiences with such programmes for communities affected by fragile X-associated conditions.

Zephyr 375 urinary sphincter implant by unical perineal incision. Initial experience.

The treatment of male severe stress incontinence (MUI) after surgery is the implantation of an artificial urinary sphincter (AUS). Traditionally you need two incisions: perineal and inguinal. Our objetive is present a series of patients treated with the Zephyr 375 EUA implant through a single perineal incision.

Aligning outcomes: DLBCL prognosis at a 4th Level University Hospital in Bogotá is comparable to high-income nations, identification of additional prognostic markers for overall survival and relapse.

Introduction: Diffuse large B-cell lymphoma (DLBCL), a prevalent non-Hodgkin lymphoma subtype, displays diverse clinical outcomes with persistently high mortality and relapse rates, despite treatment advancements. Notably, the Hispanic demographic lacks consideration in existing prognostic indices for DLBCL.

Methods: A retrospective cohort study encompassing 112 DLBCL patients diagnosed between 2010 and 2020 was conducted at our institution.

Eosinophilic Solid and Cystic Renal Cell Carcinoma-A Systematic Review and Meta-Analysis.

Eosinophilic solid and cystic renal cell carcinoma (ESC-RCC) is a novel and uncommon type of renal cell carcinoma, which has been recently recognized and introduced as a distinct entity in the WHO 2022 kidney tumor classification. Previously known as "unclassified RCC", followed by "tuberous sclerosis complex (TSC)-associated RCC", ESC-RCC is now a distinct category of kidney tumor, with its own name, with specific clinical manifestations, and a unique morphological, immunohistochemical and molecular profile. Due to its recent introduction and the limited available data, the diagnosis of ESC-RCC is still a complex challenge, and it is probably frequently misdiagnosed.

Caregiver and family functioning after pediatric disorder of consciousness: telephone-based outcome assessment.

Objective: Examine initial feasibility/utility of a telephone-administered measure in describing impact of child health on caregiver/family functioning in patients with a history of a disorder of consciousness (DoC) due to severe-acquired brain injury (ABI).

Method: Caregivers of patients admitted at least 1 year prior for inpatient rehabilitation with DoC completed a battery of measures administered via telephone examining the impact of child health on caregiver/family functioning (Pediatric Quality of Life Family Impact Module; PedsQL-FIM) and child functioning.

Results: Forty-one caregivers of unique patients (age = 5-22 years;  = 14.

Adapting an Environmental Scan for 'Insights Reporting': Learnings from an Online Brain Cancer Peer Support Platform.

When developing a digital health solution, product owners, healthcare professionals, researchers, IT teams, and consumers require timely, accurate contextual information to inform solution development. Insights Reporting can rapidly draw together information from literature, end users and existing technology to inform the development process. This was the case when creating an online brain cancer peer support platform where solution development was conducted in parallel with contextual information synthesis.

A Novel Digital Educational Strategy Improves Treatment Adherence and Quality of Life in Patients with Multiple Myeloma.

Multiple myeloma, the second most common hematologic malignancy worldwide, is an aggressive disease with high morbidity and mortality rates. Although myeloma remains incurable, new treatments have improved patients' life expectancy and quality of life. However, as these therapies are administered for prolonged and often indefinite periods, their success depends on high treatment adherence and significant patient engagement.

Impact of V600E Mutation on Event-Free Survival in Patients with Papillary Thyroid Carcinoma: A Retrospective Study in a Romanian Population.

We aimed to evaluate the prognostic value of V600E mutation in a series of 127 papillary thyroid carcinoma (PTC) cases as a single factor, and in synergic interaction with other standard risk factors. V600E mutation was assessed by real-time PCR. Event-free survival (EFS) was calculated between the date of the first evaluation and the date of occurrence of an adverse event or the date of the last known status.

Citizen science approaches to crowdsourcing food environment data: A scoping review of the literature.

Globally, the adoption and implementation of policies to improve the healthiness of food environments and prevent population weight gain have been inadequate. This is partly because of the complexity associated with monitoring dynamic food environments. Crowdsourcing is a citizen science approach that can increase the extent and nature of food environment data collection by engaging citizens as sensors or volunteered computing experts.

Prognosis Communication in Pediatric Oncology: A Systematic Review.

Background: While communication plays an important role in medicine, it also often represents a challenge when the topic at hand is the prognosis of a high-risk condition. When it comes to pediatric oncology, the challenge becomes even greater for physicians who have to adapt their discourse to both the child and their family.

Methods: Following the PRISMA guidelines, an advanced search on PubMed, Scopus and the Cochrane Library was performed, from 1 January 2017 to 31 October 2022.

Lessons Learned from Natural Disasters around Digital Health Technologies and Delivering Quality Healthcare.

As climate change drives increased intensity, duration and severity of weather-related events that can lead to natural disasters and mass casualties, innovative approaches are needed to develop climate-resilient healthcare systems that can deliver safe, quality healthcare under non-optimal conditions, especially in remote or underserved areas. Digital health technologies are touted as a potential contributor to healthcare climate change adaptation and mitigation, through improved access to healthcare, reduced inefficiencies, reduced costs, and increased portability of patient information. Under normal operating conditions, these systems are employed to deliver personalised healthcare and better patient and consumer involvement in their health and well-being.

Recommendations for the Quality Management of Patient-Generated Health Data in Remote Patient Monitoring: Mixed Methods Study.

Background: Patient-generated health data (PGHD) collected from innovative wearables are enabling health care to shift to outside clinical settings through remote patient monitoring (RPM) initiatives. However, PGHD are collected continuously under the patient's responsibility in rapidly changing circumstances during the patient's daily life. This poses risks to the quality of PGHD and, in turn, reduces their trustworthiness and fitness for use in clinical practice.

Outcome Measurement in Children With a History of Disorders of Consciousness After Severe Brain Injury: Telephone Administration of the Vineland Adaptive Behavior Scales, Third Edition, and Glasgow Outcome Scale-Extended Pediatric Revision.

Objectives: Examine initial feasibility and utility of a battery of measures administered via telephone interview with a caregiver for describing long-term outcomes in individuals with a history of disorders of consciousness (DoC) after pediatric acquired brain injury (ABI).

Design: Cross-sectional.

Setting: Caregiver interview administered via telephone.

Differences in foliar phosphorus fractions, rather than in cell-specific phosphorus allocation, underlie contrasting photosynthetic phosphorus use efficiency among chickpea genotypes.

Although significant intraspecific variation in photosynthetic phosphorus (P) use efficiency (PPUE) has been shown in numerous species, we still know little about the biochemical basis for differences in PPUE among genotypes within a species. Here, we grew two high PPUE and two low PPUE chickpea (Cicer arietinum) genotypes with low P supply in a glasshouse to compare their photosynthesis-related traits, total foliar P concentration ([P]) and chemical P fractions (i.e.

Insights on Lipomatosis after Platinum-Based Chemotherapy Use in Pediatric Oncology: A Case Report.

Agents of platinum-based chemotherapy, such as cisplatin or carboplatin, are used in the treatment of a wide range of malignancies that affect children, such as brain tumors, osteosarcoma, neuroblastoma, hepatoblastoma, and germ cell tumors (GCTs). The Cyclophosphamide Equivalent Dose (CED) calculator for reproductive risk does not take platinum-based chemotherapy into account, despite the fact that it accounts for the majority of chemotherapy medications that are typically administered for pediatric GCTs. As a result, exposure to platinum-based drugs throughout infancy can have predictable long-term effects such as infertility, as well as other rare encounters such as lipoma formation and lipomatosis.

Advancing women's participation in climate action through digital health literacy: gaps and opportunities.

Exploring the contribution of health informatics is an emerging topic in relation to addressing climate change, but less examined is a body of literature reporting on the potential and effectiveness of women participating in climate action supported by digital health. This perspective explores how empowering women through digital health literacy (DHL) can support them to be active agents in addressing climate change risk and its impacts on health and well-being. We also consider the current definitional boundary of DHL, and how this may be shaped by other competencies (eg, environmental health literacy), to strengthen this critical agenda for developed nations and lower-resource settings.

Benefits of genetic and immunohistochemical markers in understanding abnormalities in aging retina.

The aim of the study was to better understand the interplay between genetic factors and the aging process in the human retina through mapping complement factor H (CFH) and related proteins. Two human eyes, from 92- and 64-year-old donors, were genotyped for the expression of CFH-related 1 (CFHR1) and CFH-related 3 (CFHR3) genes. Deoxyribonucleic acid (DNA) was extracted and analyzed for concentration and purity with a spectrophotometer, at 260 nm.

Diagnosis and Management of Febrile Neutropenia in Pediatric Oncology Patients-A Systematic Review.

Infectious diseases are associated with a high morbidity and mortality rate among pediatric cancer patients undergoing treatment or receiving a transplant. Neutropenia represents a potentially fatal complication of cancer treatment and is associated with a high risk of developing bacterial infections. Although febrile neutropenia (FN) can affect both adults and children, the latter has a higher chance of infections with an unknown origin.

Standardised data on initiatives-STARDIT: Beta version.

Background And Objective: There is currently no standardised way to share information across disciplines about initiatives, including fields such as health, environment, basic science, manufacturing, media and international development. All problems, including complex global problems such as air pollution and pandemics require reliable data sharing between disciplines in order to respond effectively. Current reporting methods also lack information about the ways in which different people and organisations are involved in initiatives, making it difficult to collate and appraise data about the most effective ways to involve different people.