Core Elements of Shared Decision-making for Women Considering Breast Cancer Screening: Results of a Modified Delphi Survey.

Background: The United States Preventive Services Task Force recommends individualized breast cancer screening for average-risk women before age 50, advised by risk assessment and shared decision-making (SDM). However, the foundational principles of this recommendation that would inform decision support tools for patients and primary care physicians at the point of care have not been codified. Determining the core elements of SDM for breast cancer screening as valued by patients and primary care providers (PCPs) is necessary for implementing effective SDM tools.

Trajectories of social resource use among informal lung cancer caregivers.

Background: Social support is a key component in maintaining cancer caregiver well-being, and many resources exist to facilitate caregivers' use of social support (eg, cancer support groups). This study sought to determine how informal cancer caregivers use social resources over the course of caregiving.

Methods: The data are from the Comprehensive Health Enhancement Support System study of informal caregivers (n = 202) of patients with recently diagnosed lung cancer.

Key Elements of Mammography Shared Decision-Making: a Scoping Review of the Literature.

Background: New guidelines recommend shared decision-making (SDM) for women and their clinician in consideration of breast cancer screening, particularly for women ages 35-50 where guidelines for routine mammography are controversial. A number of models offer general guidelines for SDM across clinical practice, yet they do not offer specific guidance about conducting SDM in mammography. We conducted a scoping review of the literature to identify the key elements of breast cancer screening SDM and synthesize these key elements for utilization by primary care clinicians.

Are Parents Who Feel the Need to Watch Over Their Children's Care Better Patient Safety Partners?

Objectives: Many parents report needing to watch over their child's hospital care to prevent mistakes. In this study, we assessed whether needing to watch over care predicts parent performance of recommended safety behaviors to reduce medication errors and health care-associated infections.

Methods: At admission, we surveyed 170 parents about their need to watch over care, demographics, and hospitalization factors.

Reducing Symptom Distress in Patients With Advanced Cancer Using an e-Alert System for Caregivers: Pooled Analysis of Two Randomized Clinical Trials.

Background: Symptom distress in patients toward the end of life can change rapidly. Family caregivers have the potential to help patients manage those symptoms, as well as their own stress, if they are equipped with the proper resources. Electronic health (eHealth) systems may be able to provide those resources.

Mammography Screening: Gaps in Patient's and Physician's Needs for Shared Decision-Making.

As shared decision-making increasingly influences screening mammography, understanding similarities and differences between patients and physician perspectives becomes crucially important. This study compares women's and physicians' experiences of mammography shared decision-making. Results reflect the critical gaps which exist between women's expectations and physicians' confidence in shared decision-making regarding screening mammography.

Stimulated recall methodology for assessing work system barriers and facilitators in family-centered rounds in a pediatric hospital.

Human factors and ergonomics methods are needed to redesign healthcare processes and support patient-centered care, in particular for vulnerable patients such as hospitalized children. We implemented and evaluated a stimulated recall methodology for collective confrontation in the context of family-centered rounds. Five parents and five healthcare team members reviewed video records of their bedside rounds, and were then interviewed using the stimulated recall methodology to identify work system barriers and facilitators in family-centered rounds.

CHESS improves cancer caregivers' burden and mood: results of an eHealth RCT.

Objective: Informal caregivers (family and friends) of people with cancer are often unprepared for their caregiving role, leading to increased burden or distress. Comprehensive Health Enhancement Support System (CHESS) is a Web-based lung cancer information, communication, and coaching system for caregivers. This randomized trial reports the impact on caregiver burden, disruptiveness, and mood of providing caregivers access to CHESS versus the Internet with a list of recommended lung cancer websites.

Parent perceptions of children's hospital safety climate.

Background: Because patients are at the frontline of care where safety climate is closely tied to safety events, understanding patient perceptions of safety climate is crucial. We sought to develop and evaluate a parent-reported version of the Agency for Healthcare Research and Quality Hospital Survey on Patient Safety Culture and to relate parent-reported responses to parental need to watch over their child's care to ensure mistakes are not made.

Methods: Parents (n=172) were surveyed about perceptions of hospital safety climate (14 items representing four domains-overall perceptions of safety, openness of staff and parent communication, and handoffs and transitions) and perceived need to watch over their child's care.

Strategies for improving family engagement during family-centered rounds.

Background: Family-centered rounds (FCR) are recommended as standard practice in the pediatric inpatient setting; however, limited data exist on best practices promoting family engagement during rounds.

Objective: To identify strategies to enhance family engagement during FCR using a recognized systems engineering approach.

Methods: In this qualitative study, stimulated recall interviews using video-recorded rounding sessions were conducted with participants representing the various stakeholders on rounds (15 parents/children and 22 healthcare team [HCT] members) from 4 inpatient services at a children's hospital in Wisconsin.

An eHealth system supporting palliative care for patients with non-small cell lung cancer: a randomized trial.

Background: In this study, the authors examined the effectiveness of an online support system (Comprehensive Health Enhancement Support System [CHESS]) versus the Internet in relieving physical symptom distress in patients with non-small cell lung cancer (NSCLC).

Methods: In total, 285 informal caregiver-patient dyads were assigned randomly to receive, for up to 25 months, standard care plus training on and access to either use of the Internet and a list of Internet sites about lung cancer (the Internet arm) or CHESS (the CHESS arm). Caregivers agreed to use CHESS or the Internet and to complete bimonthly surveys; for patients, these tasks were optional.

Communicating advanced cancer patients' symptoms via the Internet: a pooled analysis of two randomized trials examining caregiver preparedness, physical burden, and negative mood.

Background: Using available communication technologies, clinicians may offer timely support to family caregivers in managing symptoms in patients with advanced cancer at home.

Aim: To assess the effects of an online symptom reporting system on caregiver preparedness, physical burden, and negative mood.

Design: A pooled analysis of two randomized trials (NCT00214162 and NCT00365963) was conducted to compare caregiver outcomes at 6 and 12 months after intervention between two randomized, unblinded groups using General Linear Mixed Modeling.

Creating a bond between caregivers online: effect on caregivers' coping strategies.

Numerous studies have investigated the effect of Interactive Cancer Communication Systems (ICCSs) on system users' improvements in psychosocial status. Research in this area, however, has focused mostly on cancer patients, rather than on caregivers, and on the direct effects of ICCSs on improved outcomes, rather than on the psychological mechanisms of ICCS effects. To understand the underlying mechanisms, this study examines the mediating role of perceived caregiver bonding in the relation between one ICCS (the Comprehensive Health Enhancement Support System [CHESS]) use and caregivers' coping strategies.

Web-based cancer communication and decision making systems: connecting patients, caregivers, and clinicians for improved health outcomes.

Over the cancer disease trajectory, from diagnosis and treatment to remission or end of life, patients and their families face difficult decisions. The provision of information and support when most relevant can optimize cancer decision making and coping. An interactive health communication system (IHCS) offers the potential to bridge the communication gaps that occur among patients, family, and clinicians and to empower each to actively engage in cancer care and shared decision making.

Psychometric evaluation of the Health Information Orientation Scale: a brief measure for assessing health information engagement and apprehension.

The Health Information Orientation Scale (HIOS) was developed from a need to briefly assess information orientation in a health context and underlying reasons for information seeking or avoidance. Using data from a larger longitudinal study of informal cancer caregivers, this study examines psychometric properties of the HIOS, including confirmatory factor analysis (CFA), reliability and construct validity through associations with information competence, coping and distress. CFA supported two conceptually unique factors: Information Engagement and Information Apprehension.

Development and implementation of a clinician reporting system for advanced stage cancer: initial lessons learned.

Objective: Innovative approaches can strengthen patient-caregiver-clinician information exchange and more effectively address the physical and psychosocial challenges of advanced disease. This study reports initial findings from implementation of the Clinician Report (CR)-a patient and caregiver status report tool accessible by the oncology clinic team.

Design: The CR tracks and communicates essential information from cancer patients and caregivers to the oncology team.

Antecedent characteristics of online cancer information seeking among rural breast cancer patients: an application of the Cognitive-Social Health Information Processing (C-SHIP) model.

Little research has examined the antecedent characteristics of patients most likely to seek online cancer information. This study employs the Cognitive-Social Health Information Processing (C-SHIP) model as a framework to understand what psychosocial characteristics precede online cancer-related information seeking among rural breast cancer patients who often have fewer health care providers and limited local support services. Examining 144 patients who were provided free computer hardware, Internet access, and training for how to use an interactive cancer communication system, pretest survey scores indicating patients' psychosocial status were correlated with specific online cancer information seeking behaviors.

Patient/Caregiver influences for declining participation in supportive oncology trials.

Enrolling adequate numbers of subjects to research projects that focus on the supportive needs of patients and caregivers is difficult, and this difficulty significantly impedes investigation of this important research area. We report reasons that patients or their informal caregivers declined to participate in one of two randomized, longitudinal clinical trials testing the Comprehensive Health Enhancement Support System (CHESS), a Web-based information and support scheme for people with advanced cancer and their primary informal caregivers. Patients were asked why they declined participation in these trials; their responses then were recorded and coded into themes.