Patient-Reported Outcome Measure Development and Validation: A Primer for Clinicians.

A comprehensive definition of health includes the assessment of patient experiences of a disease and its treatment. These patient experiences are best captured by standardized patient-reported outcome (PRO) instruments. A PRO is reported directly by the patient (or caregiver) and provides the patient's perspective into how a disease and its treatment impact their lives.

Opportunities, barriers, and recommendations in down syndrome research.

Background: Recent advances in medical care have increased life expectancy and improved the quality of life for people with Down syndrome (DS). These advances are the result of both pre-clinical and clinical research but much about DS is still poorly understood. In 2020, the NIH announced their plan to update their DS research plan and requested input from the scientific and advocacy community.

Pregnancy latency after preterm premature rupture of membranes: oral versus intravenous antibiotics.

Background: Following the destruction of pharmaceutical production facilities in Puerto Rico by Hurricane Maria in September 2017, a shortage of small-volume bags of sterile intravenous fluid for infusion led to a decreased ability to administer intravenous azithromycin and ampicillin efficiently for use in the treatment of patients with preterm premature rupture of membranes.

Objective: This study aimed to assess pregnancy latency after preterm premature rupture of membranes following treatment with oral-only antibiotics compared with treatment with intravenous antibiotics followed by oral antibiotics.

Study Design: This is a retrospective historic control study comparing women with preterm premature rupture of membranes who were initiated on a 7-day oral-only regimen of azithromycin and amoxicillin (modified regimen) during a 12-month period beginning December 2017 (during which time there was a shortage of small-volume bags of intravenous fluid) to women with preterm premature rupture of membranes who were initiated on a 2-day regimen of intravenous ampicillin and azithromycin followed by 5 days of oral amoxicillin and azithromycin (standard regimen) from December 2016 to December 2018.

An outbreak of oriental theileriosis in dairy cattle imported to Vietnam from Australia.

This study reports an outbreak of oriental theileriosis in dairy cattle imported to Vietnam from Australia. Following clinical and pathological diagnoses, a total of 112 cattle blood samples were divided into three groups and tested using multiplexed tandem PCR. Group 1 were from aborted heifers in Vietnam; group 2 were from cattle before shipment from group 1 cattle and group 3 were from the same batch of cattle but transported to Taiwan.

Automated movement correction for dynamic PET/CT images: evaluation with phantom and patient data.

Head movement during a dynamic brain PET/CT imaging results in mismatch between CT and dynamic PET images. It can cause artifacts in CT-based attenuation corrected PET images, thus affecting both the qualitative and quantitative aspects of the dynamic PET images and the derived parametric images. In this study, we developed an automated retrospective image-based movement correction (MC) procedure.

Hb Manukau [β67(E11)Val → Gly; HBB: c.203T>G]: the role of genetic testing in the diagnosis of idiopathic hemolytic anemia.

The increasing availability of DNA sequencing of globin genes has improved our ability to detect conditions that were presumed to be extremely rare. These conditions may remain undiagnosed due to unfamiliarity with clinical presentation, relative unavailability of advanced diagnostic alternatives, or may defy detection by being electrophoretically silent or extreme instability rendering their presence to be below detection level. Genetic studies were pursued in a mother and daughter with severe hemolytic anemia as initial testing failed to be diagnostic.

Addressing dental fear in children with autism spectrum disorders: a randomized controlled pilot study using electronic screen media.

Background: Dental care is a significant unmet health care need for children with autism spectrum disorders (ASD). Many children with ASD do not receive dental care because of fear associated with dental procedures; oftentimes they require general anesthesia for regular dental procedures, placing them at risk of associated complications. Many children with ASD have a strong preference for visual stimuli, particularly electronic screen media.

Early performance in a humanistic medicine course as a predictor of dental students' later clinical performance.

The purpose of this study was to test the hypothesis that dental students' early ability to demonstrate a humanistic approach with patients is associated with later clinical performance. A first-year humanistic medicine course, Patient Doctor I (PDI), at Harvard School of Dental Medicine combines training in conducting the medical interview with human values, placing a high value on strengthening relationships with patients and emphasizing empowerment, respect, and strong communication skills. Retrospective data were collected in the following domains: PDI course evaluations, admissions information, National Board Dental Examination Parts I and II scores, and Promotions Committee and faculty evaluation scores for hand skills and humanistic and interactive patient-student skills.

A performance measurement plan for pediatric dentists: using accuracy of caries diagnosis from intraoral radiographs.

Purpose: The purpose of this study was to develop a metric for measuring (1) an individual pediatric dentist's performance against peer performance and (2) aggregate group performance, using accuracy of caries diagnosis.

Methods: A total of 3,985 tooth surfaces (from 174 patients) on intraoral bitewing radiographs were assessed by 9 precalibrated attending pediatric dentists at Children's Hospital Boston over a 3-year period. Each surface was reviewed by 3 pediatric dentists (the operating dentist and 2 peer reviewers) using a score card.

Cryoballoon ablation of pulmonary veins for paroxysmal atrial fibrillation: first results of the North American Arctic Front (STOP AF) pivotal trial.

Objectives: This study sought to assess the safety and effectiveness of a novel cryoballoon ablation technology designed to achieve single-delivery pulmonary vein (PV) isolation.

Background: Standard radiofrequency ablation is effective in eliminating atrial fibrillation (AF) but requires multiple lesion delivery at the risk of significant complications.

Methods: Patients with documented symptomatic paroxysmal AF and previously failed therapy with ≥ 1 membrane active antiarrhythmic drug underwent 2:1 randomization to either cryoballoon ablation (n = 163) or drug therapy (n = 82).

Assessing early performance in the patient-doctor relationship in dental education.

In addition to current admissions criteria, the assessment of qualities related to humanistic medicine may help predict clinical and academic performance in dental education. The objective of this feasibility study was to develop and assess the reliability of a coding scheme to quantify and rate qualitative formative narratives describing individual student performance in a medical interview course that utilizes principles of humanistic medicine. A mixed method, using focus groups and individual interviews, was used to develop a coding strategy.

Prevalence of 2009 pandemic influenza A (H1N1) virus antibodies, Tampa Bay Florida--November-December, 2009.

Background: In 2009, a novel influenza virus (2009 pandemic influenza A (H1N1) virus (pH1N1)) caused significant disease in the United States. Most states, including Florida, experienced a large fall wave of disease from September through November, after which disease activity decreased substantially. We determined the prevalence of antibodies due to the pH1N1 virus in Florida after influenza activity had peaked and estimated the proportion of the population infected with pH1N1 virus during the pandemic.

Positron emission tomography of brain β-amyloid and τ levels in adults with Down syndrome.

Objectives: To determine the neuropathological load in the living brain of nondemented adults with Down syndrome using positron emission tomography with 2-(1-{6-[(2-fluorine 18-labeled fluoroethyl)methylamino]-2-napthyl}ethylidene) malononitrile ([(18)F]FDDNP) and to assess the influence of age and cognitive and behavioral functioning. For reference, [(18)F]FDDNP binding values and patterns were compared with those from patients with Alzheimer disease and cognitively intact control participants.

Design: Cross-sectional clinical study.

Unmet dental needs and barriers to care for children with significant special health care needs.

Purpose: The purpose of this study was to conduct the first known large scale survey of parents of children with special health care needs (CSHCN) to determine their child's: oral health status; access to dental care; perceived barriers (environmental/system and nonenvironmental/family); and oral health quality of life, accounting for each child's medical diagnosis and severity of diagnosis.

Methods: A 72-item survey was sent to 3760 families of CSHCN throughout urban and rural Massachusetts.

Results: The study yielded 1,128 completed surveys.

Dental manifestations associated with Seckel syndrome type II: a case report.

Seckel syndrome is a rare form of primordial dwarfism that is characterized by short stature, skeletal defects, mental retardation, and characteristic facial features such as microcephaly, micrognathia, and a bird-head appearance. Dental findings include hypodontia, enamel hypoplasia, crowding, and Class II malocclusion. The purpose of this paper was to report the case of a female patient with Seckel syndrome type II and describe her orodental manifestations.

Results of the Prospective Minnesota Study of ECHO/TDI in Cardiac Resynchronization Therapy (PROMISE-CRT) study.

Background: Retrospective single-center studies have shown that measures of mechanical dyssynchrony before cardiac resynchronization therapy (CRT), or acute changes after CRT, predict response better than QRS duration. The Prospective Minnesota Study of Echocardiographic/TDI in Cardiac Resynchronization Therapy (PROMISE-CRT) study was a prospective multicenter study designed to determine whether acute (1 week) changes in mechanical dyssynchrony were associated with response to CRT.

Methods And Results: Nine Minnesota Heart Failure Consortium centers enrolled 71 patients with standard indications for CRT.

Bringing problem based learning to life using virtual reality.

Recent UK government policy advocates the need for a more flexible approach to nurse education and ;Fitness for Practice' stresses the importance of information technology and computer mediated learning facilities in the future of nursing education [Department of Health, Making a Difference, Strengthening the Nursing, Midwifery and Health Visiting Contribution to Health Care, Department of Health, 1999; The United Kingdom Central Council For Nursing, Fitness for Practice, The UKCC Commission for Nursing and Midwifery Education, 1999]. In response to this recommendation, a virtual reality package has been designed as a learning resource within adult pre-registration nursing education. This learning and teaching strategy is used in conjunction with problem based learning, enabling students to visualise individual/family life in a community setting.

Exploring the lecturer/practitioner role: individuals perceptions of the lived experience.

This study explored the individual experiences of lecturer practitioners during the development of their role while on secondment to a university. The method was an inductive approach influenced by phenomenology using a sample of six qualified nurses fro m a variety of clinical backgrounds in both the community or hospital settings. Data from the unstructured interviews was collected, recorded and analysed using Burnard's method of Thematic Content Analysis (Burnard 1991).

An experimental approach to detecting dementia in Down syndrome: a paradigm for Alzheimer's disease.

Measures developed from animal models of aging may detect dementia of the Alzheimer's type in a population at-risk for Alzheimer's disease (AD). Although, by middle age, individuals with Down syndrome (DS) show an extraordinarily high prevalence of AD-type pathology, their severe idiopathic cognitive deficits tend to confound the clinical diagnosis of AD. The current study was designed to improve detection of AD in DS by using measures of learning and memory derived from animal models of aging.

Impact of acute rotavirus gastroenteritis on pediatric outpatient practices in the United States.

Objectives: The objectives of this study were to determine the presenting symptoms, healthcare utilization, and lost time from work and day care associated with acute rotavirus gastroenteritis.

Methods: During the winter to spring seasons of 2002-2003 or 2003-2004, children <36 months of age presenting with acute gastroenteritis to urban and suburban pediatric outpatient practices affiliated with 5 academic centers across the United States were enrolled in similarly designed studies. The case definition required >or=3 watery or looser-than-normal stools and/or forceful vomiting within a 24-hour period beginning View Article and Find Full Text PDF

Renal and vestibular toxicity due to inhaled tobramycin in a lung transplant recipient.

Chronic rejection is the major hurdle to long-term survival after lung transplantation. Endobronchial infection with Pseudomonas aeruginosa is common in patients with chronic rejection and this may further contribute to deterioration of the allograft. Inhaled tobramycin is commonly used to treat P aeruginosa airways infection in patients with cystic fibrosis.

Randomized pilot study of a new atrial-based minimal ventricular pacing mode in dual-chamber implantable cardioverter-defibrillators.

Objective: We hypothesized that a new minimal ventricular pacing mode (MVP) that provides AAI/R pacing with ventricular monitoring and back-up DDD/R pacing as needed during AV block (AVB) would significantly reduce cumulative percent ventricular pacing compared to DDD/R.

Background: Conventional DDD/R mode often results in high cumulative percent ventricular pacing that may adversely affect ventricular function and increase risk of heart failure and atrial fibrillation.

Methods: MVP was made operational in 30 patients with DDD/R implantable cardioverter-defibrillators (ICDs) and no history of AVB.