Patient vs. Community Engagement: Emerging Issues.

Background: The value proposition of including patients at each step of the research process is that patient perspectives and preferences can have a positive impact on both the science and the outcomes of comparative effectiveness research. How to accomplish engagement and the extent to which approaches to community engagement inform strategies for effective patient engagement need to be examined to address conducting and accelerating comparative effectiveness research.

Objectives: To examine how various perspectives and diverse training lead investigators and patients to conflicting positions on how best to advance patient engagement.

Gene Expression, and Fatigue in Puerto Rican Men during Radiotherapy for Prostate Cancer: an Exploratory Study.

Objective: To examine the trajectory of fatigue experienced by 26 Puerto Rican (PR) men over the course of External Beam Radiation Therapy (EBRT) and to assess gene expression changes from baseline to midpoint of EBRT using microarray technology. Design/Research Approach- Prospective exploratory and comparative design study. Setting- RT facility located in San Juan, PR.

A Bayesian comparative effectiveness trial in action: developing a platform for multisite study adaptive randomization.

Background: In the last few decades, the number of trials using Bayesian methods has grown rapidly. Publications prior to 1990 included only three clinical trials that used Bayesian methods, but that number quickly jumped to 19 in the 1990s and to 99 from 2000 to 2012. While this literature provides many examples of Bayesian Adaptive Designs (BAD), none of the papers that are available walks the reader through the detailed process of conducting a BAD.

The Greater Plains Collaborative: a PCORnet Clinical Research Data Network.

The Greater Plains Collaborative (GPC) is composed of 10 leading medical centers repurposing the research programs and informatics infrastructures developed through Clinical and Translational Science Award initiatives. Partners are the University of Kansas Medical Center, Children's Mercy Hospital, University of Iowa Healthcare, the University of Wisconsin-Madison, the Medical College of Wisconsin and Marshfield Clinic, the University of Minnesota Academic Health Center, the University of Nebraska Medical Center, the University of Texas Health Sciences Center at San Antonio, and the University of Texas Southwestern Medical Center. The GPC network brings together a diverse population of 10 million people across 1300 miles covering seven states with a combined area of 679 159 square miles.

Exercise for everyone: a randomized controlled trial of project workout on wheels in promoting exercise among wheelchair users.

Objective: To compare the effectiveness of 2 home-based behavioral interventions for wheelchair users to promote exercise adoption and maintenance over 12 months.

Design: Randomized controlled trial, with participants stratified into groups based on disability type (stable, episodic, progressive) and support partner availability.

Setting: Exercise occurred in participant-preferred locations (eg, home, recreation center), with physiological data collected at a university-based exercise laboratory.

Truth be told: evidence of wheelchair users' accuracy in reporting their height and weight.

Objectives: To examine whether wheelchair users' self-reports of height and weight differed significantly from direct measurements and whether weight category classifications differed substantially when based on self-reported or measured values.

Design: Single group, cross-sectional analysis. Analyses included paired t tests, chi-square test, analysis of variance, and Bland-Altman agreement analyses.

Preparedness of the CTSA's structural and scientific assets to support the mission of the National Center for Advancing Translational Sciences (NCATS).

The formation of the National Center for Advancing Translational Sciences (NCATS) brings new promise for moving basic science discoveries to clinical practice, ultimately improving the health of the nation. The Clinical and Translational Science Award (CTSA) sites, now housed with NCATS, are organized and prepared to support in this endeavor. The CTSAs provide a foundation for capitalizing on such promise through provision of a disease-agnostic infrastructure devoted to clinical and translational (C&T) science, maintenance of training programs designed for C&T investigators of the future, by incentivizing institutional reorganization and by cultivating institutional support.

An exercise trial for wheelchair users: project workout on wheels.

There is growing interest in promoting health for people with disabilities, yet evidence regarding community-based interventions is sparse. This paper describes the design details of a randomized controlled trial (RCT) that will test the effectiveness of a multi-component behaviorally based, intervention to promote exercise adoption (over 6 months) and maintenance (up to one year) among wheelchair users and includes descriptive data on participant characteristics at baseline. Participants were randomly assigned to either a staff-supported intervention group or a self-guided comparison group.

Recruitment issues in a randomized controlled exercise trial targeting wheelchair users.

This paper describes recruitment challenges and lessons learned in conducting a randomized controlled exercise trial in the absence of direct access to a clinical population. One-hundred thirty-five wheelchair users were enrolled in a home and community-based intervention to promote exercise adoption and maintenance. Over 44 months of recruitment, 355 individuals inquired about the study and 323 completed the screening process.

A randomized controlled trial of breastfeeding support and education for adolescent mothers.

Despite substantial evidence of maternal and infant benefits of breastfeeding, adolescent mothers initiate breastfeeding less often and maintain breastfeeding for shorter durations when compared to their adult counterparts. A randomized controlled trial drawing on the theory of planned behavior and developmental theory was conducted to determine if an education and counseling intervention provided by a lactation consultant-peer counselor team increased breastfeeding initiation and duration up to 6 months postpartum among adolescent mothers. Study participants ( N = 289) enrolled from multiple prenatal clinic and school settings, were 15 to 18 years old, and predominately African American, single, and primiparous.

Bayesian data analysis: estimating the efficacy of T'ai Chi as a case study.

Background: Bayesian inference provides a formal framework for updating knowledge by combining prior knowledge with current data. Over the past 10 years, the Bayesian paradigm has become a popular analytic tool in health research. Although the nursing literature contains examples of Bayes' theorem applications to clinical decision making, it lacks an adequate introduction to Bayesian data analysis.

Predictors of exercise and effects of exercise on symptoms, function, aerobic fitness, and disease outcomes of rheumatoid arthritis.

Objective: To determine the effects of participation in a low-impact aerobic exercise program on fatigue, pain, and depression; to examine whether intervention groups compared with a control group differed on functional (grip strength and walk time) and disease activity (total joint count, erythrocyte sedimentation rate, and C-reactive protein) measures and aerobic fitness at the end of the intervention; and to test which factors predicted exercise participation.

Methods: A convenience sample of 220 adults with rheumatoid arthritis (RA), ages 40-70, was randomized to 1 of 3 groups: class exercise, home exercise using a videotape, and control group. Measures were obtained at baseline (T1), after 6 weeks of exercise (T2), and after 12 weeks of exercise (T3).

Symptom perception and adherence to asthma controller medications.

Purpose: To explore asthma symptom perception and the relationship between asthma symptom perception and adherence to asthma treatment.

Design: Adult patients (N=120) of asthma/allergy specialty clinics, taking Advair as a controller medication, were enrolled in this cross-sectional descriptive study.

Methods: Ninety-seven participants completed 4 weeks of daily diaries to assess subjective symptom perception and measured peak expiratory flow rates (PEFR), both done twice daily.

Smoking cessation strategy use among pregnant ex-smokers.

There is strong evidence for the beneficial health effects associated with smoking cessation during pregnancy. Although many pregnant women spontaneously quit smoking during pregnancy, postpartum relapse is high. Evidence suggests that pregnant women do not use smoking cessation strategies as identified by the 40-item Processes of Change Scale as frequently as others who quit smoking.

Quality of life in hospice patients with terminal illness.

To better understand quality of life (QOL) and its important correlates among patients with terminal illness, a cross-sectional correlational design was used in a study based on Stewart, Teno, Patrick, and Lynn's conceptual model of factors affecting QOL of dying patients and their families. Sixty participants were recruited from two local hospice programs in the midwestern region of the United States. Data were collected at the participants' homes.

A qualitative investigation of fatigue among healthy working adults.

Despite considerable attention to fatigue in acute and chronic illnesses, little is known about fatigue in a healthy population. A detailed exploration of fatigue, therefore, was conducted to answer the broad question of what fatigue is to a basically healthy population and to lay the groundwork for establishing an empirically based definition of fatigue. Qualitative and quantitative methods were used.