Better Together: The Making and Maturation of the Palliative Care Research Cooperative Group.

Objective: To describe the growth and outcomes of the Palliative Care Research Cooperative Group (PCRC).

Background: Despite advances, significant gaps remain in the evidence base to inform care for people with serious illness. To generate this needed evidence and bolster research capacity, the Palliative Care Research Cooperative (PCRC) group was formed.

The Spectrum of Caregiving in Palliative Care for Serious, Advanced, Rare Diseases: Key Issues and Research Directions.

Rare diseases are often life-limiting conditions, the majority of which require constant caregiving needs. The realization of a spectrum of palliative care throughout the trajectory of rare diseases could ensure individualized and caregiver-focused approaches to the care of patients and families. In June 2015, the National Institute of Nursing Research (NINR), the lead institute at the National Institutes of Health for end-of-life research, in conjunction with the National Center for Advancing Translational Sciences, Office of Rare Diseases Research (ORDR) held an interdisciplinary workshop on the unique challenges of caregiving and palliative care in adult and pediatric rare diseases.

Palliative and end-of-life care research: embracing new opportunities.

The past two decades have witnessed dramatic advances in palliative and end-of-life care research with increased understanding of the burden of life-limiting diseases on patients, families, clinicians, and our healthcare system; and researchers have documented palliative care interventions that improve patient and family outcomes and reduce the costs of care (Detering, Hancock, Reade, & Silvester, 2010). These advances have led to a new era of palliative and end-of-life care research and practice with widespread recognition of its accomplishments and successes. Consequently, we now have an important opportunity to reassess our recent successes and challenges and to identify the goals and benchmarks that will ensure ongoing robust advances in this now-recognized and critical scientific area.

Gastrocnemius fascicle length changes with two-joint passive movements.

Predicting muscle fascicle length changes during passive movements may lead to a better understanding of muscle function. The purpose of this study was to experimentally compare fascicle length changes in the gastrocnemius during two-joint passive movements with a previously derived kinematic model based on anatomical measures from a cadaver. The ratio of passive ankle to knee motion was manipulated to generate medial gastrocnemius fascicle elongation and lateral gastrocnemius fascicle shortening.

Visual and proprioceptive feedback improves knee joint position sense.

Joint position sense (JPS), one method to assess proprioception, is the ability to replicate a target limb position. Feedback is commonly used to improve motor performance but it has not been demonstrated to improve JPS. The purpose of this study was to determine if feedback decreases error associated with knee JPS at three movement velocities.

Preliminary ultrasound observation of lingual movement patterns during nutritive versus non-nutritive sucking in a premature infant.

Term neonates must suck, swallow, and respire in a coordinated manner during successful oral feeding. When infants are born prematurely, these skills may not be fully mature. To stimulate sucking responses, premature infants are offered pacifiers under the premise that non-nutritive sucking experiences facilitate oral feeding readiness.

Muscle, adipose, and connective tissue variations in intrinsic musculature of the adult human tongue.

The purpose of this investigation was to identify the composition and organization of lingual tissues underlying the histostructural and biomechanical functions of the adult human tongue. The small-scale structures of three intrinsic muscle regions, their principal cells, structural complexities, and differences in underlying tissue composition were compared to other skeletal muscle systems and the results discussed in relation to lingual morphology. Analysis of pixel color distributions determined the percent area concentration of each stained tissue component.

Emergence of oropharyngeal, laryngeal and swallowing activity in the developing fetal upper aerodigestive tract: an ultrasound evaluation.

The developing fetal upper aerodigestive system provides the structural support for respiratory and ingestive functions necessary to sustain life at birth. This study investigated prenatal development of upper aerodigestive anatomy and the association of emerging functions as predictors of postnatal feeding skills. Biometric measures of oral, lingual, pharyngeal and laryngeal structures were obtained in fetuses 15-38 weeks gestational age using a four-plane sonographic technique.

Power Doppler imaging of the fetal upper aerodigestive tract using a 4-point standardized evaluation: preliminary report.

Objective: Our investigation of fetal swallowing has identified potential limitations in the use of color Doppler imaging for detection of amniotic fluid flow and discrimination of respiratory from ingestive activity. The objective of this study was to evaluate an alternative imaging modality, power Doppler sonography, as a technique to enhance detection of amniotic fluid flow in the upper aerodigestive tract.

Methods: We applied a standardized 4-axis sonographic examination of upper aerodigestive structures and used power Doppler imaging to document amniotic fluid flow.