Well‐being on supportive techniques in amyotrophic lateral sclerosis: from neurologists' perspective
Abstract Objective To investigate intercultural neurologists' perception of well‐being in patients with amyotrophic lateral sclerosis (ALS) using gastrostomy (PEG), non‐invasive, and/or invasive ventilation (NIV/IV) and to analyse the determinants and impact on the management of the above medical interventions (MIs).
Krzysztof Barć+7 more
wiley +1 more source
Phenotypic continuum of NFU1‐related disorders
Abstract Bi‐allelic variants in Iron–Sulfur Cluster Scaffold (NFU1) have previously been associated with multiple mitochondrial dysfunctions syndrome 1 (MMDS1) characterized by early‐onset rapidly fatal leukoencephalopathy. We report 19 affected individuals from 10 independent families with ultra‐rare bi‐allelic NFU1 missense variants associated with a
Rauan Kaiyrzhanov+45 more
wiley +1 more source
Clinical heterogeneity in a family with flail arm syndrome and review of hnRNPA1‐related spectrum
Abstract Objective Flail arm syndrome (FAS) is one of the atypical subtypes of amyotrophic lateral sclerosis (ALS). Mutations in hnRNPA1 encoding heterogeneous nuclear ribonucleoprotein (hnRNP) A1 are a rare genetic cause of ALS. Herein, marked clinical heterogeneity of FAS in a pedigree with a known hnRNPA1 variant was described to raise early ...
Xiaochen Han+5 more
wiley +1 more source
Penalized Estimation of Frailty-Based Illness-Death Models for Semi-Competing Risks [PDF]
Semi-competing risks refers to the survival analysis setting where the occurrence of a non-terminal event is subject to whether a terminal event has occurred, but not vice versa. Semi-competing risks arise in a broad range of clinical contexts, with a novel example being the pregnancy condition preeclampsia, which can only occur before the `terminal ...
arxiv +1 more source
Polypharmacy in the terminally ill [PDF]
To the Editor A significant number of patients who receive palliative care are over 65 years of age. In addition to their terminal illness, they often have other medical comorbidities. Long-term medical management of these conditions can evolve into a large regimen of medications.
Bruce Stafford+2 more
openaire +3 more sources
Psychiatric aspects of the end of life in oncologic patients
Introduction Patients with life-limiting oncologic conditions should be approached by multidisciplinary teams that contribute to improve their quality of life, including support from mental health dedicated professionals.
M. Trigo
doaj +1 more source
Solving Severely Ill-Posed Linear Systems with Time Discretization Based Iterative Regularization Methods [PDF]
Recently, inverse problems have attracted more and more attention in computational mathematics and become increasingly important in engineering applications. After the discretization, many of inverse problems are reduced to linear systems. Due to the typical ill-posedness of inverse problems, the reduced linear systems are often ill-posed, especially ...
arxiv +1 more source
An analysis of common ethical justifications for compassionate use programs for experimental drugs [PDF]
BACKGROUND: When a new intervention or drug is developed, this has to pass through various phases of clinical testing before it achieves market approval, which can take many years.
Raus, Kasper
core +1 more source
Assessment and coping strategies for stress and depression among the terminally ill patients: Focus on cancer [PDF]
The concept of psychological depressive symptoms affecting the terminally ill patient still stood as an unsolved mystery in many clinical practices.
Suantak Demkhosei Vaiphei
doaj +1 more source
The Landscape of Distress in the Terminally Ill [PDF]
Understanding the complexities of distress and knowing who is most vulnerable is foundational to the provision of quality, palliative end-of-life care. Although prior studies have examined the prevalence of symptom distress among patients nearing death, these studies have tended to largely focus on physical and, to a lesser extent, psychological ...
Mike Harlos+8 more
openaire +6 more sources