The Use of Technology to Support Precision Health in Nursing Science.

PURPOSE: This article outlines how current nursing research can utilize technology to advance symptom and self-management science for precision health and provides a roadmap for the development and use of technologies designed for this purpose. APPROACH: At the 2018 annual conference of the National Institute of Nursing Research (NINR) Research Centers, nursing and interdisciplinary scientists discussed the use of technology to support precision health in nursing research projects and programs of study. Key themes derived from the presentations and discussion were summarized to create a proposed roadmap for advancement of technologies to support health and well-being. CONCLUSIONS: Technology to support precision health must be centered on the user and designed to be desirable, feasible, and viable. The proposed roadmap is composed of five iterative steps for the development, testing, and implementation of technology-based/enhanced self-management interventions. These steps are (a) contextual inquiry, focused on the relationships among humans, and the tools and equipment used in day-to-day life; (b) value specification, translating end-user values into end-user requirements; (c) design, verifying that the technology/device can be created and developing the prototype(s); (d) operationalization, testing the intervention in a real-world setting; and (e) summative evaluation, collecting and analyzing viability metrics, including process data, to evaluate whether the technology and the intervention have the desired effect. CLINICAL RELEVANCE: Interventions using technology are increasingly popular in precision health. Use of a standard multistep process for the development and testing of technology is essential.

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. METHODS: The PCRC supports investigators in the conduct of multisite clinical studies. After developing a governance structure and completing a proof of concept demonstration study, the PCRC expanded its infrastructure to include additional resource cores (Clinical Studies; Measurement; Data Informatics and Statistics; and Caregiver Studies). The PCRC also supports an Investigator Development Center as many palliative care investigators valued opportunities to advance their skills. Additional key aspects of PCRC resources include a Scientific Review Committee, a Publications Committee, and initiatives to purposefully engage investigators in a community of palliative care science. RESULTS: The PCRC has grown to over 300 members representing more than 130 distinct sites. To date, the PCRC has supported the submission of 51 research applications and has engaged in 27 studies. The PCRC supports investigator research development needs through webinars and clinical trials "intensives." To foster a sense of community, the PCRC has convened biannual meetings, developed special interest groups, and regularly communicates via a newsletter and its website. CONCLUSION: With a particular focus on facilitating conduct of rigorous multisite clinical studies, the PCRC fosters an engaged multidisciplinary research community, filling an important void in generating and disseminating evidence that informs the provision of high-quality care to people with serious illness.

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. The panel identified gaps in current knowledge, and afforded suggestions for research opportunities in palliative care science to improve the care of individuals with serious, advanced, rare diseases and their caregivers. This meeting provided an in-depth opportunity to incorporate new concepts into palliative and end-of-life care for individuals with a range of rare diseases and their caregivers. This report presents a summary of the workshop.

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. High-quality palliative and end-of-life care will be best informed by methodologically strong research efforts that generate a body of evidence with the capacity to support and direct care and effect changes in practice. It is in this context that the National Institute of Nursing Research conceptualized and led a Summit titled The Science of Compassion: Future Directions in End-of-Life and Palliative Care Research in August, 2011. In this summary article, we present brief overviews of the six articles chosen for this Special Issue of Nursing Outlook, examine their key conclusions, articulate gaps and needs, and discuss next steps in palliative and end-of-life care research through the lens of these six topics.

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. Healthy volunteers sat with their hip and knees flexed. The knee was passively extended at three velocities (0.5, 2, and 10 degrees/s). Subjects were instructed to stop knee motion, via a thumb switch, at a 20 degrees knee flexion target. Following movement, each subject received visual and proprioceptive feedback indicating final leg position relative to the target position. Movement velocities and times (4 s, 5 s, 6 s) were randomly presented so subjects could not predict the target position. Measures of JPS included constant error (CE), absolute error (AE), variable error (VE), and percent correct (%CORR). Significant decreases in CE, AE, and VE as well as an increase in %CORR were demonstrated. The majority of JPS improvement (85%) occurred by the tenth trial. Short-term improvements in JPS may be the result of temporary CNS adaptations via feedback that was provided to subjects. Long-term learning of JPS enhancement needs further investigation.

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. Ultrasound images from both heads of the gastrocnemius fascicles were acquired at 10 degrees knee flexion increments and compared with this kinematic model. Our results suggest that the two-joint kinematic model from which we originally based our knee and ankle movements did not adequately reflect fascicle length changes during any of the movement conditions in this study. From our data, we propose that for every degree of ankle motion the medial and lateral gastrocnemius changes 0.42 mm and 0.96 mm, respectively, whereas changes of 0.14 mm and 0.22 mm are observed for the medial and lateral gastrocnemius, respectively, during knee movements.

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. This case reported examined the lingual-hyoid mechanics of non-nutritive suck (NNS) patterns with a pacifier versus nutritive suck (NS) during a bottle feed in a premature infant using a noninvasive ultrasound imaging technique as a pilot to discern aspects of oral feeding candidacy. Lingual patterns during NS resulted in significantly greater displacements and excursions than NNS (p < 0.0001) in both anterior and posterior regions of the tongue (p < 0.0001). In addition, the angle of hyoid movement during NNS was significantly smaller (p < 0.05) than the angle recorded during NS tasks. Unlike an expected neonatal sucking pattern of horizontal anterior-posterior movements of the tongue body, vertical tongue body excursions occurred as described in the literature of representing a 6-9-month developmental skill level. Through the integration of semiautomatic computerized analyses of tongue surface configurations and hyoid activity, these data may enhance knowledge of oral swallowing function in developing preterm neonates.

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. Accompanying ingestive behaviors were tallied across development. The data from 62 healthy controls were compared to seven cases at risk for postnatal feeding and swallowing dysfunction (Type II Arnold Chiari Malformation, trisomy 18, polyhydramnios, intrauterine growth restriction, Brachmann-de Lange Syndrome). Significant (p<0.001) linear regressions occurred in pharyngeal and lingual growth across gestation while ingestive behavior such as suckling emerged in a sequence of basic to complex movement patterns. Jaw and lip movements progressed from simple mouth opening to repetitive open-close movements important for postnatal suckling. Lingual movements increased in complexity from simple forward thrusting and cupping to anterior-posterior motions necessary for successful suckling at term. Laryngeal movements varied from shallow flutter-like movements along the lumen to more complex and complete adduction-abduction patterns. Fetal swallowing primarily occurred in the presence of concomitant oral-facial stimulatory activity. Significant variations (p<0.01) in the form and function of the ingestive system occurred in comparisons of gestational age-matched controls to at-risk cases. We postulate that prenatal developmental indices of emerging aerodigestive skills may guide postnatal decisions for feeding readiness and, ultimately, advance the care of the premature, medically fragile neonate.

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. Normal aerodigestive activities from 62 healthy control subjects were compared with 4 abnormal cases. RESULTS: Our longitudinal experience with 66 subjects showed that a directed evaluation of the fetal upper aerodigestive tract with power Doppler imaging provided a systematic approach for studying the physiologic development of this region in both healthy and at-risk fetuses. CONCLUSIONS: A standardized 4-axis examination with power Doppler imaging is a useful adjunct in addressing ingestive and respiratory functions in the developing fetus.

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. Results indicated that muscle content increased from anterior to posterior (p <.0001). Greater adipose (p =.005) and connective tissue (p <.002) concentrations occurred in anterior regions. Dense collagen sheaths and elastic fibers found anteriorly occurred with less magnitude in medial and posterior sites. The unique elastin, collagen, and adipose connective tissue distributions found in intrinsic sampling sites are discussed in terms of understanding lingual biomechanics in both normal and pathologic states.