Lori L. DuBenske

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. This is a report of the authors’ experience (with a discussion of relevant literature) in developing and testing a Web-based IHCS—the Comprehensive Health Enhancement Support System (CHESS)—for patients with advanced lung cancer and their family caregivers. CHESS provides information, communication, and coaching resources as well as a symptom tracking system that reports health status to the clinical team. Development of an IHCS includes a needs assessment of the target audience and applied theory informed by continued stakeholder involvement in early testing. Critical issues of IHCS implementation include 1) need for interventions that accommodate a variety of format preferences and technology comfort ranges; 2) IHCS user training, 3) clinician investment in IHCS promotion, and 4) IHCS integration with existing medical systems. In creating such comprehensive systems, development strategies need to be grounded in population needs with appropriate use of technology that serves the target users, including the patient/family, clinical team, and health care organization. Implementation strategies should address timing, personnel, and environmental factors to facilitate continued use and benefit from IHCS.

The value of theory for enhancing and understanding e-health interventions.

,5,6 But a key question remains:What are the causal psychological and social processes and intermediate outcomes that leadto their demonstrated successes? That is a call for theory to help researchers develop, implementand evaluate those interventions.7 Theory provides a framework guiding the selection ofintervention components from a huge array of what might work, it guides the choice of studydesign and samples, and it helps select appropriate outcomes for measuring the effects of theintervention. In fact, as Kurt Lewin famously noted a half-century ago, “nothing is quite sopractical as a good theory.

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

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).

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. Caregivers in one group (Comprehensive Health Enhancement Support System-Only) were given access to an interactive cancer communication system, the Comprehensive Health Enhancement Support System. Those in the other group (Comprehensive Health Enhancement Support System + Clinician Report) received access to Comprehensive Health Enhancement Support System plus an online symptom reporting system called the Clinician Report. Clinicians of patients in the Comprehensive Health Enhancement Support System + Clinician Report group received e-mail alerts notifying them when a symptom distress was reported over a predetermined threshold. Setting/participants: Dyads (n = 235) of advanced-stage lung, breast, and prostate cancer patients and their adult caregivers were recruited at five outpatient oncology clinics in the United States. Results: Caregivers in the Comprehensive Health Enhancement Support System + Clinician Report group reported less negative mood than those in the Comprehensive Health Enhancement Support System-Only group at both 6 months (p = 0.009) and 12 months (p = 0.004). Groups were not significantly different on caregiver preparedness or physical burden at either time point. Conclusions: This study provides new evidence that by using an online symptom reporting system, caregivers may experience less emotional distress due to the Clinician Report’s timely communication of caregiving needs in symptom management to clinicians.

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 childrens hospital in Wisconsin. On video review, participants were asked to provide strategies that would increase family engagement on FCR. Qualitative content analysis of interview transcripts was performed in an iterative process. RESULTS We identified 21 categories of strategies corresponding to 2 themes related to the structure and process of FCR. Strategies related to the structure of FCR were associated with all five recognized work system elements: people (HCT composition), tasks (HCT roles), organization (scheduling of rounds and HCT training), environment (location of rounds and HCT positioning), and tools and technologies (computer use). Strategies related to the FCR process were associated with three rounding phases: before (HCT and family preparation), during (eg, introductions, presentation content, communication style), and after (follow-up) FCR. CONCLUSIONS We identified a range of strategies to enhance family engagement during FCR. These strategies both confirm prior work on the importance of the content and style of communication on rounds and highlight other factors within the hospital work system, like scheduling and computer use, which may affect family engagement in care.

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. Each factor demonstrated adequate reliability and construct validity, providing promising findings regarding Information Engagement and Information Apprehension, specific to a health context.

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 childs 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 childs care. Confirmatory factor analysis (CFA) was used to validate safety climate domain measures. Logistic regression was used to relate need to watch over care to safety climate domains. Results CFA indices suggested good model fit for safety climate domains. Thirty-nine per cent of parents agreed or strongly agreed they needed to watch over care. In adjusted models, need to watch over care was significantly related to overall perceptions of safety (OR 0.20, 95% CI 0.11 to 0.37) and to handoffs and transitions (0.25, 0.14 to 0.46), but not to openness of staff (0.67, 0.40 to 1.12) or parent (0.83, 0.48 to 1.45) communication. Conclusions Findings suggest parents can provide valuable data on specific safety climate domains. Opportunities exist to improve our safety climates impact on parent burden to watch over their childs care, such as targeting overall perceptions of safety as well as handoffs and transitions.

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. The evaluation of the methodology was based on a survey of the participants, and a qualitative analysis of interview data in light of the work system model of Smith and Carayon (1989, 2001). Positive survey feedback from the participants was received. The stimulated recall methodology identified barriers and facilitators in all work system elements. Participatory ergonomics methods such as the stimulated recall methodology allow a range of participants, including parents and children, to participate in healthcare process improvement.

Managing Different Perspectives in the Redesign of Family-Centered Rounds in a Pediatric Hospital

Managing conflicts between different perspectives is critical to healthcare system redesign. This study compares the perspectives of different stakeholders involved in family-centered rounds (FCR) in a pediatric hospital. A survey was distributed to 134 participants involved in FCR. The objective of the survey was to evaluate stakeholder perceptions of the impact of system redesign strategies on family engagement in FCR. Results showed parents, nurses, physicians and medical students have different opinions about how to enhance family engagement in FCR. Recommendations for managing different perspectives in healthcare system redesign are discussed.

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 womens and physicians’ experiences of mammography shared decision‐making. Results reflect the critical gaps which exist between womens expectations and physicians’ confidence in shared decision‐making regarding screening mammography.