Evaluating cancer patient-reported experience measures against health literacy best practices.

Purpose: Positive patient experiences can lead to better adherence to cancer treatment and greater patient health outcomes. The primary aim of this descriptive study was to determine whether commonly used cancer PREMs have been developed according to health literacy best practices. The secondary and third aims were to examine the development of PREMs and to assess their comprehensiveness against principles of patient-centered care.

Exploring how the design and provision of digital self-management technology can improve the uptake by older adults with chronic kidney disease, diabetes and dementia: A modified e-Delphi study.

As development and introduction of digital self-management technologies continues to increase, the gap between those who can benefit, and those who cannot correspondingly widens. This research aimed to explore the use of digital self-management technology by older adults with three highly-prevalent long-term conditions (chronic kidney disease, diabetes and dementia), and build expert consensus across the conditions on changes needed to improve effective usage. This qualitative research involved a modified e-Delphi Study.

An ALS-associated mutation dysregulates microglia-derived extracellular microRNAs in a sex-specific manner.

Evidence suggests the presence of microglial activation and microRNA (miRNA) dysregulation in amyotrophic lateral sclerosis (ALS), the most common form of adult motor neuron disease. However, few studies have investigated whether the miRNA dysregulation originates from microglia. Furthermore, TDP-43 (encoded by TARDBP), involved in miRNA biogenesis, aggregates in tissues of ∼98% of ALS cases.

International Perspectives of Extended Genetic Sequencing When Used as Part of Newborn Screening to Identify Cystic Fibrosis.

There is increasing interest in using extended genetic sequencing (EGS) in newborn screening (NBS) for cystic fibrosis (CF). How this is implemented will change the number of children being given an uncertain outcome of CRMS/CFSPID (cystic fibrosis transmembrane conductance regulator (CFTR)-related metabolic syndrome/CF Screen Positive Inconclusive Diagnosis), probable carrier results, and the number of missed CF diagnoses. An international survey of CF health professionals was used to gather views on two approaches to EGS-specific (may reduce detection of CRMS/CFSID but miss some CF cases) versus sensitive (may increase detection of CRMS/CFSPID but avoid missing more CF cases).