Team Science Principles Enhance Cancer Care Delivery Quality Improvement: Interdisciplinary Implementation of Breast Cancer Screening Shared Decision Making.

PURPOSE: Implementing shared decision making (SDM), recommended in screening mammography by national guidelines for women age 40-49 years, faces challenges that innovations in quality improvement and team science (TS) are poised to address. We aimed to improve the effectiveness, patient-centeredness, and efficiency of SDM in primary care for breast cancer screening. METHODS: Our interdisciplinary team included primary and specialty care, psychology, epidemiology, communication science, engineering, and stakeholders (patients and clinicians). Over a 6-year period, we executed two iterative cycles of plan-do-study-act (PDSA) to develop, revise, and implement a SDM tool using TS principles. Patient and physician surveys and retrospective analysis of tool performance informed our first PDSA cycle. Patient and physician surveys, toolkit use, and clinical outcomes in the second PDSA cycle supported SDM implementation. We gathered team member assessments on the importance of individual TS activities. RESULTS: Our first PDSA cycle successfully generated a SDM tool called Breast Cancer Risk Estimator, deemed valuable by 87% of patients surveyed. Our second PDSA cycle increased Breast Cancer Risk Estimator utilization, from 2,000 sessions in 2017 to 4,097 sessions in 2019 while maintaining early-stage breast cancer diagnoses. Although TS activities such as culture, trust, and communication needed to be sustained throughout the project, shared goals, research/data infrastructure support, and leadership were more important earlier in the project and persisted in the later stages of the project. CONCLUSION: Combining rigorous quality improvement and TS principles can support the complex, interdependent, and interdisciplinary activities necessary to improve cancer care delivery exemplified by our implementation of a breast cancer screening SDM tool.

Patient and Clinician Characteristics That Predict Breast Cancer Screening Behavior in 40-49-Year-Old Women.

Guidelines recommend that clinicians practice shared decision-making (SDM) with women in their 40s to discuss breast cancer screening. Traditionally, SDM includes discussion of values and preferences to help determine a decision that is congruent with what the patient desires. We analyzed 54 women's breast cancer screening decisions after a SDM conversation with their clinician. We looked at both patient and clinician characteristics that predicted whether or not a woman would get a screening mammogram. Women with a family history of breast cancer or who had a previous abnormal mammogram had higher rates of screening. Screening rates also varied widely between clinicians, raising the question of whether clinician attitudes impacted the SDM conversation.

Preliminary Evaluation of a Breast Cancer Screening Shared Decision-Making Aid Utilized Within the Primary Care Clinical Encounter.

INTRODUCTION: The US Preventative Services Task Force recommends shared decision-making (SDM) between women aged 40 and 49 years and their physician regarding timing of mammography screening. This preliminary study evaluates women's and physician's satisfaction using Breast Cancer Risk Estimator & Decision Aid (BCARE-DA), a shared decision aid utilized during the clinical encounter, and examines SDM quality for these encounters. METHODS: Fifty-three women and their physician utilized BCARE-DA and completed surveys measuring satisfaction with Likert-type and open-ended items and women completed the Decision Conflict Scale. Clinic visit transcripts were evaluated for SDM quality using Observer OPTION-5 and Breast Cancer Screening Decision Core Components Checklist. RESULTS: Women and physicians positively evaluated BCARE-DA. Women had low decision conflict. Physicians demonstrated moderate effort toward SDM, greatest in offering options, and lowest for team talk. Physicians demonstrated 2/3 of core SDM elements in 80% to 100% of encounters. CONCLUSION: Preliminary findings suggest specific promise for such Decision Aids to facilitate SDM through understanding of personal risks for breast cancer formulated within each screening option, while some SDM elements likely require additional facilitating.

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. The aim of this study is to affirm core elements of SDM in the context of clinical interactions, through a Delphi consensus process. METHODS: A Delphi was conducted with 30 participants (10 women aged 40-49, 10 PCPs, and 10 healthcare decision scientists), to codify core elements of breast cancer screening SDM. The criterion for establishing consensus was a threshold of 80% agreement. The Delphi concluded with an 83% response rate. RESULTS: Of 48 items fielded, 44 met the threshold on the high-importance end of the response scale and were accepted as core elements. Core elements across three thematic categories-information delivery and patient education, interpersonal clinician-patient communication, and framework of the decision-received panelists' support in nearly equal measure. Panelists unanimously agreed that SDM should include provision of clearly understandable information, including that of personal breast cancer risk factors, and benefits and harms of mammography screening, and that PCPs should convey they are listening, knowledgeable, and demonstrate cultural sensitivity. DISCUSSION: This research codifies the core elements of SDM for mammography in women 40-49, augmenting the evidence to inform discussions between patients and physicians. These core elements of SDM have the potential to operationalize SDM for breast cancer screening in an effort to improve public health outcomes.

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. Caregivers self-reported their sociodemographic and caregiving characteristics and social resource use over 6 months. Generalized additive models were used to assess social resource use over time, and generalized estimating equation logistic regression models were used to assess the correlates of social resource use. RESULTS: Nearly two-thirds of caregivers reported any social resource use. The most prevalent social resources were faith-based groups (38%) and social clubs (30%). Only 1 in 4 caregivers participated in a formal resource such as counseling (11%) or a cancer support group (6%). Social resource use was lowest immediately after the diagnosis and increased over time. Formal resource use exhibited a nonlinear association with time such that formal resource use peaked approximately 9 to 10 months after the cancer diagnosis. Caregivers were more likely to report social resource use if the patient also reported social engagement. CONCLUSIONS: This study has found that many cancer caregivers do not use social resources, although social resource use increases over time after the cancer diagnosis. Because of the association between social engagement and well-being, this information may inform future research and interventions to improve outcomes for cancer caregivers and their families.

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. METHODS: The Cochrane Database of Systematic Reviews; Cumulative Index to Nursing and Allied Health Literature (CINAHL Plus); PsycInfo, PubMed (MEDLINE), Scopus, and SocIndex databases were searched. Inclusion criteria were original studies from peer-reviewed publications (from 2009 or later) reporting breast cancer screening (mammography), medical decision-making, and patient-centered care. Study populations needed to include female patients 18+ years of age facing a real-life breast cancer screening decision. Article findings were specific to shared decision-making and/or use of a decision aid. Data extracted includes study design, population, setting, intervention, and critical findings related to breast cancer screening SDM elements. Scoping analysis includes descriptive analysis of study features and content analysis to identify the SDM key elements. RESULTS: Twenty-four articles were retained. Three thematic categories of key elements emerged from the extracted elements: information delivery/patient education (specific content and delivery modes), interpersonal clinician-patient communication (aspects of interpersonal relationship impacting SDM), and framework of the decision (sociocultural factors beyond direct SDM deliberation). A number of specific breast cancer screening SDM elements relevant to primary care clinical practice are delineated. DISCUSSION: The findings underscore the importance of the relationship between the patient and clinician and the necessity of spelling out each step in the SDM process. The clinician needs to be explicit in telling a woman that she has a choice about whether to get a mammogram and the benefits and harms of screening mammography. Finally, clinicians need to be aware of sociocultural factors that can influence their relationships and their patients' decision-making processes and attempt to identify and address these factors.

Adequacy of Depression Treatment in Spouses of Cancer Survivors: Findings From a Nationally Representative US Survey.

BACKGROUND: Recent research suggests that mental health problems in spouses of cancer survivors are associated with worse mental health in the survivors themselves. Adequately treating spousal mental health problems therefore represents an opportunity to improve outcomes for both cancer survivors and their co-surviving family members. OBJECTIVE: Using nationally representative data, this study sought to determine how depression treatment differs between spouses of cancer survivors with depression compared to the general married population and assess rural/urban disparities in treatment. DESIGN: The design of the study is cross sectional. PARTICIPANTS: Data are from the Medical Expenditures Panel Survey, a household-based survey of US adults; we concatenated data from 2004 to 2013. We identified spouses of cancer survivors (n = 225) and a comparison group of married adults (n = 3678). MAIN MEASURES: Key measures included depression, guideline concordance of depression treatment (at least four prescriptions related to depression treatment, or at least eight psychotherapy or counseling visits), and sociodemographic characteristics. Logistic regressions evaluated the association between whether their spouse had cancer and receipt of guideline-concordant treatment, controlling for sociodemographic characteristics; secondary analyses included rurality as a moderator. Analyses were weighted to account for the complex sampling design. KEY RESULTS: Spouses of cancer survivors were 33% less likely to receive guideline-concordant depression treatment than comparison spouses (odds ratio (OR) 0.67, 95% confidence interval (CI) 0.45-0.99), controlling for covariates. Rural-urban disparities were observed: rural spouses of cancer survivors were 72% less likely to receive guideline-concordant treatment (OR 0.28, 95% CI 0.11-0.68) than rural comparison spouses. Spouses of cancer survivors and comparison spouses were no different in their receipt of any treatment versus no treatment. CONCLUSIONS: Spouses of cancer survivors with depression may be at increased risk of non-guideline-concordant depression treatment, particularly in rural areas. The findings have implications for identifying and educating individuals with depression in primary care and other clinical areas.

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. Very sick patients may not be able to use such systems themselves to report their symptoms but family caregivers could. OBJECTIVE: The aim of this paper was to assess the effects on cancer patient symptom distress of an eHealth system that alerts clinicians to significant changes in the patient's symptoms, as reported by a family caregiver. METHODS: A pooled analysis from two randomized clinical trials (NCT00214162 and NCT00365963) compared outcomes at 12 months for two unblinded groups: a control group (Comprehensive Health Enhancement Support System [CHESS]-Only) that gave caregivers access to CHESS, an online support system, and an experimental group (CHESS+CR [Clinician Report]), which also had CHESS but with a CR that automatically alerted clinicians if symptoms exceeded a predetermined threshold of severity. Participants were dyads (n=235) of patients with advanced lung, breast, or prostate cancer and their respective family caregivers from 5 oncology clinics in the United States of America. The proportion of improved patient threshold symptoms was compared between groups using area-under-the-curve analysis and binomial proportion tests. The proportion of threshold symptoms out of all reported symptoms was also examined. RESULTS: When severe caregiver-reported symptoms were shared with clinicians, the symptoms were more likely to be subsequently reported as improved than when the symptoms were not shared with clinicians (P<.001). Fewer symptom reports were completed in the group of caregivers whose reports went to clinicians than in the CHESS-Only group (P<.001), perhaps because caregivers, knowing their reports might be sent to a doctor, feared they might be bothering the clinician. CONCLUSIONS: This study suggests that an eHealth system designed for caregivers that alerts clinicians to worrisome changes in patient health status may lead to reduced patient distress. TRIAL REGISTRATION: Clinicaltrials.gov NCT00214162; https://clinicaltrials.gov/ct2/show/NCT00214162 (Archived by WebCite at http://www.webcitation.org/6nmgdGfuD) and Clinicaltrials.gov NCT00365963; https://clinicaltrials.gov/ct2/show/NCT00365963 (Archived by WebCite at http://www.webcitation.org/6nmh0U8VP).

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. At discharge, parents were surveyed about medication awareness and hand hygiene behaviors. Logistic regression was used to examine how parents' need to watch over care predicted each behavior, adjusting for demographics and hospitalization factors. RESULTS: Thirty-eight percent of parents reported needing to watch over care. Most parents (77%) reported frequently or very frequently asking providers for drug names or doses. Fewer parents asked to check drug or infusion accuracy (29%) or to show or read aloud medication labels (21%). Few parents reminded providers to clean hands (4%), but most stated they would be comfortable asking (82%) and likely to speak up if a provider did not (78%). After adjustment, parents needing to watch over care were significantly more likely to ask providers to check drug or infusion accuracy (adjusted odds ratio = 4.59, 95% confidence interval 2.14-9.94) and for drug name or dose (adjusted odds ratio = 3.04, 95% confidence interval 1.25-7.39). CONCLUSIONS: Parents who report the need to watch over care are more likely to perform behaviors specific to safe medication use (but not hand hygiene) compared with those not reporting this need. Opportunities exist to engage parents as safety partners by leveraging their need to watch over care toward system-level safety initiatives.

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.

Characterizing the Nature of Scan Results Discussions: Insights Into Why Patients Misunderstand Their Prognosis.

INTRODUCTION: Patients with incurable cancer have poor prognostic awareness. We present a detailed analysis of the dialogue between oncologists and patients in conversations with prognostic implications. METHODS: A total of 128 audio-recorded encounters from a large multisite trial were obtained, and 64 involved scan results. We used conversation analysis, a qualitative method for studying human interaction, to analyze typical patterns and conversational devices. RESULTS: Four components consistently occurred in sequential order: symptom-talk, scan-talk, treatment-talk, and logistic-talk. Six of the encounters (19%) were identified as good news, 15 (45%) as stable news, and 12 (36%) as bad news. The visit duration varied by the type of news: good, 15 minutes (07:00-29:00); stable, 17 minutes (07:00-41:00); and bad, 20 minutes (07:00-28:00). Conversational devices were common, appearing in half of recordings. Treatment-talk occupied 50% of bad-news encounters, 31% of good-news encounters, and 19% of stable-news encounters. Scan-talk occupied less than 10% of all conversations. There were only four instances of frank prognosis discussion. CONCLUSION: Oncologists and patients are complicit in constructing the typical encounter. Oncologists spend little time discussing scan results and the prognostic implications in favor of treatment-related talk. Conversational devices routinely help transition from scan-talk to detailed discussions about treatment options. We observed an opportunity to create prognosis-talk after scan-talk with a new conversational device, the question "Would you like to talk about what this means?" as the oncologist seeks permission to disclose prognostic information while ceding control to the patient.

Online support: Impact on anxiety in women who experience an abnormal screening mammogram.

OBJECTIVES: To determine whether an online support tool can impact anxiety in women experiencing an abnormal mammogram. MATERIALS AND METHODS: We developed an online support system using the Comprehensive Health Enhancement Support System (CHESS) designed for women experiencing an abnormal mammogram as a model. Our trial randomized 130 of these women to online support (the intervention group) or to a list of five commonly used Internet sites (the comparison group). Surveys assessed anxiety and breast cancer worry, and patient satisfaction at three important clinical time points: when women were notified of their abnormal mammogram, at the time of diagnostic imaging, and at the time of biopsy (if biopsy was recommended). RESULTS: Study participants in the intervention group showed a significant decrease in anxiety at the time of biopsy compared to the comparison group (p = 0.017). However, there was no significant difference in anxiety between the intervention group and the comparison group at the time of diagnostic work-up. We discontinued assessment of patient satisfaction after finding that many women had substantial difficulty answering the questions that referenced their physician, because they did not understand who their physician was for this process of care. CONCLUSION: The combination of the inability to identify the physician providing care during the mammography work-up and anxiety effects seen only after an interaction with the breast imaging team may indicate that online support only decreases the anxiety of women in concert with direct interpersonal support from the healthcare team.

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.

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. METHODS: A total of 285 informal caregivers of patients with advanced nonsmall cell lung cancer were randomly assigned to a comparison group that received Internet or a treatment group that received Internet and CHESS. Caregivers were provided a computer and Internet service if needed. Written surveys were completed at pretest and during the intervention period bimonthly for up to 24 months. Analyses of covariance (ANCOVAs) compared the intervention's effect on caregivers' disruptiveness and burden (CQOLI-C), and negative mood (combined Anxiety, Depression, and Anger scales of the POMS) at 6 months, controlling for blocking variables (site, caregiver's race, and relationship to patient) and the given outcome at pretest. RESULTS: Caregivers randomized to CHESS reported lower burden, t(84) = 2.36, p = .021, d = .39, and negative mood, t(86) = 2.82, p = .006, d = .44, than those in the Internet group. The effect on disruptiveness was not significant. CONCLUSIONS: Although caring for someone with a terminal illness will always exact a toll on caregivers, eHealth interventions like CHESS may improve caregivers' understanding and coping skills and, as a result, ease their burden and mood.

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. 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 climate's impact on parent burden to watch over their child's care, such as targeting overall perceptions of safety as well as handoffs and transitions.

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. 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.

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. The primary endpoint-patient symptom distress-was measured by caregiver reports using a modified Edmonton Symptom Assessment Scale. RESULTS: Caregivers in the CHESS arm consistently reported lower patient physical symptom distress than caregivers in the Internet arm. Significant differences were observed at 4 months (P = .031; Cohen d = .42) and at 6 months (P = .004; d = .61). Similar but marginally significant effects were observed at 2 months (P = .051; d = .39) and at 8 months (P = .061; d = .43). Exploratory analyses indicated that survival curves did not differ significantly between the arms (log-rank P = .172), although a survival difference in an exploratory subgroup analysis suggested an avenue for further study. CONCLUSIONS: The current results indicated that an online support system may reduce patient symptom distress. The effect on survival bears further investigation.

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.

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. To test the hypotheses, a secondary analysis of data was conducted on 246 caregivers of lung cancer patients. These caregivers were randomly assigned to (a) the Internet, with links to high-quality lung cancer websites, or (b) access to CHESS, which integrated information, communication, and interactive coaching tools. Findings suggest that perceived bonding has positive effects on caregivers' appraisal and problem-focused coping strategies, and it mediates the effect of ICCS on the coping strategies 6 months after the intervention has begun.

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.