Development of the PRECIOUS Short-Form (PRECIOUS-SF) quality of care measure for children with serious illnesses.

Background: Rising number of children with complex medical conditions necessitate regular healthcare quality evaluation to achieve optimal outcomes. To address the need for a periodic and quick assessment of quality of care in serious childhood illnesses, we developed a short version of previously validated 45-item PaRental Experience with care for Children with serIOUS illnesses (PRECIOUS) measure.

Methodology: PRECIOUS was administered by parents of children living with serious illnesses at two time-points (baseline and two weeks) in an online survey.

Reverse Time-to-Death as Time-Scale in Time-to-Event Analysis for Studies of Advanced Illness and Palliative Care.

Incidence of adverse outcome events rises as patients with advanced illness approach end-of-life. Exposures that tend to occur near end-of-life, for example, use of wheelchair, oxygen therapy and palliative care, may therefore be found associated with the incidence of the adverse outcomes. We propose a concept of reverse time-to-death (rTTD) and its use for the time-scale in time-to-event analysis based on partial likelihood to mitigate the time-varying confounding.

Impact of disease cyclicity on quality-of-life impairment-A mixed method explanatory study.

Background: Disease cyclicity, a composite measure of unpredictable and daily fluctuations of symptoms, strongly predicts quality-of-life (QoL) impairment.

Objective: To explore the mechanisms by which cyclicity impacts QoL.

Methods: 1:1 semi-structured interviews were conducted and qualitatively analyzed using grounded theory.

Investigating male factors and their relationships with reproductive health outcomes: a case-control study protocol for Towards Optimal Fertility, Fathering, and Fatherhood studY (TOFFFY) in Singapore.

Introduction: Despite the global prevalence of low fertility rates, male contributions to fertility and reproductive health outcomes have been understudied. This study aims to investigate the male contribution to fertility and explore the underlying biological mechanisms. Specifically, we aim to (1) identify male factors associated with successful pregnancy, (2) develop a fertility index incorporating modifiable factors for both males and females to predict pregnancy rate and (3) explore the relationship of male modifiable factors with semen parameters and molecular characteristics.

Structure of the human autophagy factor EPG5 and the molecular basis of its conserved mode of interaction with Atg8-family proteins.

The multi-step macroautophagy/autophagy process ends with the cargo-laden autophagosome fusing with the lysosome to deliver the materials to be degraded. The metazoan-specific autophagy factor EPG5 plays a crucial role in this step by enforcing fusion specificity and preventing mistargeting. How EPG5 exerts its critical function and how its deficiency leads to diverse phenotypes of the rare multi-system disorder Vici syndrome are not fully understood.