A Patient-Centric Tool to Facilitate Goal Attainment Scaling in Neurogenic Bladder and Bowel Dysfunction: Path to Individualization.

OBJECTIVES: People with neurogenic bladder and/or bowel dysfunction experience diverse challenges that can be difficult to evaluate with standardized outcome measures. Goal attainment scaling (GAS) is an individualized, patient-centric outcome measure that enables patients/caregivers to identify and track their own treatment goals. Because creating goals de novo can be cumbersome, we aimed to develop a neurogenic bladder/bowel dysfunction goal menu to facilitate goal attainment scaling uptake and use. METHODS: We conducted a workshop with 6 expert clinicians to develop an initial menu. Individual interviews with 12 people living with neurogenic bladder and/or bowel dysfunction and 2 clinician panels with 5 additional experts aided us in refining the menu. A thematic framework analysis identified emergent themes for analysis and reporting. RESULTS: Interview participants were adults (median = 36 years, range 25-58), most with spinal cord injury (75%; 9/12). Of 24 goals identified initially, 2 (8%) were not endorsed and were removed, and 3 goals were added. Most participants listed "Impact on Life" goals (eg, Exercise, Emotional Well-Being) among their 5 most important goals (58%; 35/60). Three main themes emerged: challenges posed by incontinence, limitations on everyday life, and need for personalized care. CONCLUSIONS: We developed a clinical outcome assessment tool following a multistep process of representative stakeholder engagement. This patient-centric tool consists of 25 goals specific to people living with neurogenic bladder and/or bowel dysfunction. Asking people what matters most to them can identify important constructs that clinicians might have overlooked.

Optimizing operational efficiencies in early phase trials: The Pediatric Trials Network experience.

Performing drug trials in pediatrics is challenging. In support of the Best Pharmaceuticals for Children Act, the Eunice Kennedy Shriver National Institute of Child Health and Human Development funded the formation of the Pediatric Trials Network (PTN) in 2010. Since its inception, the PTN has developed strategies to increase both efficiency and safety of pediatric drug trials. Through use of innovative techniques such as sparse and scavenged blood sampling as well as opportunistic study design, participation in trials has grown. The PTN has also strived to improve consistency of adverse event reporting in neonatal drug trials through the development of a standardized adverse event table. We review how the PTN is optimizing operational efficiencies in pediatric drug trials to increase the safety of drugs in children.

Pentalogy of Cantrell: Case Report With Review of the Literature.

BACKGROUND: Pentalogy of Cantrell is a rare, congenital disorder characterized by lower sternal defects, diaphragmatic defect, pericardial defect, supraumbilical abdominal wall abnormalities, and/or intracardiac defects. The collective defects result from failure of either differentiation or migration of mesenchymal or mesodermal structures during the embryonic phase of development. Mortality of the disease complex is high, and treatment, when appropriate, revolves around surgical correction of the associated defects. PURPOSE: This article presents a case of pentalogy of Cantrell and examines the literature to report the most current evidence relative to the embryology and pathophysiology. In addition, the methods of pre- and postnatal diagnosis, management, and prognostic indicators are examined. METHODS/SEARCH STRATEGY: Case report was gathered from the medical records and is provided as it occurred. The literature was searched for evidence of best management strategies as well as care implications for families. FINDINGS/RESULTS: A female newborn was delivered at (Equation is included in full-text article.)weeks' gestation secondary to premature onset of labor. Prenatal ultrasonography identified an abdominal wall defect, diaphragmatic hernia, sternal defect, ventricular septal defect, and open neural tube defect. Examination immediately after delivery confirmed prenatal findings and a diagnosis of pentalogy of Cantrell was assigned. IMPLICATIONS FOR PRACTICE: Patients with the diagnosis of pentalogy of Cantrell should receive antenatal counseling relative to mortality and morbidity risks. An interprofessional approach in the immediate timeframe after delivery facilitates timely diagnostics and offers families prompt confirmation of antenatal findings. IMPLICATIONS FOR RESEARCH: Future research can focus on further elucidating genetic etiologies of pentalogy of Cantrell.

Clinical case of the month. A 63-year-old woman with lumbago. Eikenella corrodens.

We present a case of facet joint infection (pyogenic facetitis) due to Eikenella corrodens, diagnosed by physical examination, radiography, positive blood cultures, and response to antibiotic therapy. E. corrodens is a very rare cause of spine infection. There are fewer than 20 such cases reported in the literature, only one of which was diagnosed by non-invasive means, and none of which were isolated to the facet joint. We briefly review the microbiology of E. corrodens in addition to the diagnosis and management of spine infection.

Multimodality: a basis for augmentative and alternative communication--psycholinguistic, cognitive, and clinical/educational aspects.

PURPOSE: Message generating is a complex process involving a number of processes, including the selection of modes to use. When expressing a message, human communicators typically use a combination of modes. This phenomenon is often termed multimodality. This article explores the use of models that explain multimodality as an explanatory framework for augmentative and alternative communication (AAC). METHOD: Multimodality is analysed from a communication, psycholinguistic, and cognitive perspective. RESULTS: Theoretical and applied topics within AAC can be explained or described within the multimodality framework considering iconicity, simultaneous communication, lexical organization, and compatibility of communication modes. CONCLUSION: Consideration of multimodality is critical to understanding underlying processes in individuals who use AAC and individuals who interact with them.