Understanding how e-health interventions meet psychosocial needs of breast cancer patients: The pathways of influence on quality of life and cancer concerns.

OBJECTIVE: This investigation explores how using different e-health interventions facilitates positive psychosocial changes and how these changes reduce cancer concerns and improve quality of life in breast cancer patients over time. METHODS: A total of 326 breast cancer patients were randomly assigned to one of three e-health interventions: (a) Internet only, (b) the Comprehensive Health Enhancement Support System information and support services (CHESS-IS), or (c) CHESS with mentor. Proximal health outcomes such as information overload, emotional functioning, and social support were measured alongside distal outcomes like cancer concerns and quality of life. Participants completed surveys at four time points: pretest as a baseline, 6 weeks, 3 months, and 6 months. RESULTS: Both interventions were effective in improving patient health beyond Internet only but they differed in type of change mechanism and clinical benefit. The CHESS-IS enhanced proximal outcomes at 3 months through improved information competence. The CHESS with mentor intervention reduced breast cancer concerns at 6 months, mediated mainly by emotional-social competence and emotional functioning. CONCLUSIONS: Using e-health interventions like CHESS can help patients improve cancer information management skills and emotional functioning, contributing to better short-term health outcomes. Adding a human mentor can enhance the benefits of CHESS use, extending the experience among breast cancer patients. Theoretical, practical, and clinical implications of the study results are discussed.

Interactivity, Presence, and Targeted Patient Care: Mapping e-Health Intervention Effects Over Time for Cancer Patients with Depression.

This study examined the interplay of depression and different types of e-health interventions on breast cancer patients' perceived healthcare competence, emotional processing, and social well-being over time. The three e-health interventions--Internet Only as a control condition, CHESS (Comprehensive Health Enhancement Support System) Only, and CHESS with a Human Mentor, a cancer information specialist--provided varying degrees of interactivity and presence. A total of 328 women with breast cancer participated in one of the three interventions for a 6-month period. Women were further split into two groups based on reported levels of depression. For perceived healthcare competence and social well-being, results revealed significant interaction effects for intervention type by depression over time, such that breast cancer patients with higher levels of depression benefited most from the CHESS with Mentor intervention over the 6-month study period. For emotional processing, depressed cancer patients benefited more from the CHESS with Mentor than the other two interventions, regardless of time. These findings have (a) theoretical implications on how mental health factors can intersect with interactivity and presence to influence psychosocial outcomes, (b) conceptual implications for the role of human interaction within e-health systems, and (c) practical implications for the development of e-health interventions for cancer patients with depression.

Worry as an Uncertainty-Associated Emotion: Exploring the Role of Worry in Health Information Seeking.

This study was carried out to understand how and why worry motivates health-related information seeking, and whether worry decreases after obtaining health-related information. It was proposed that worry influences health-related information-seeking behavior indirectly through cancer patients' desire for obtaining additional information. It was further expected that perceived knowledge about cancer could be increased after 2 months of searching for health information over the Internet, which would subsequently affect levels of worry. Using panel data collected from 224 women diagnosed with breast cancer, worry was found to predict patients' health information seeking via the perceived need for additional information. The results further showed significant increases in patients' perceived knowledge about breast cancer and decreased levels of worry after the seeking of health information for 2 months. Theoretical and practical implications of the findings are discussed.

Implementing an evidence-based breast cancer support and communication tool to newly diagnosed patients as standard care in two institutions.

While many women turn to the Internet to obtain health information, it is unlikely that unstructured Internet use provides optimal benefit to women newly diagnosed with breast cancer, due to uneven quality, conflicting claims, redundancy, and search engine idiosyncrasies, which may make finding information and assessing its accuracy and applicability difficult. To answer the need for information and support, the Comprehensive Health Enhancement Support System (CHESS) was developed to provide access to integrated information for decision-making, behavior change, and emotional support, and has been validated in randomized trials. This observational study of real-world implementation focuses on the process of integrating CHESS into standard care in two Denver healthcare systems. Results from this study provide guidance for implementation of other web-based patient information and support programs in large healthcare organizations.

The role of the family environment and computer-mediated social support on breast cancer patients' coping strategies.

Despite the importance of family environment and computer-mediated social support (CMSS) for women with breast cancer, little is known about the interplay of these sources of care and assistance on patients' coping strategies. To understand this relation, the authors examined the effect of family environment as a predictor of the use of CMSS groups as well as a moderator of the relation between group participation and forms of coping. Data were collected from 111 patients in CMSS groups in the Comprehensive Health Enhancement Support System "Living with Breast Cancer" intervention. Results indicate that family environment plays a crucial role in (a) predicting breast cancer patient's participation in CMSS groups and (b) moderating the effects of use of CMSS groups on breast cancer patients' coping strategies such as problem-focused coping and emotion-focused coping.

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.

Clinical trials of health information technology interventions intended for patient use: unique issues and considerations.

BACKGROUND: Despite the proliferation of health information technology (IT) interventions, descriptions of the unique considerations for conducting randomized trials of health IT interventions intended for patient use are lacking. PURPOSE: Our purpose is to describe the protocol to evaluate Pocket PATH (Personal Assistant for Tracking Health), a novel health IT intervention, as an exemplar of how to address issues that may be unique to a randomized controlled trial (RCT) to evaluate health IT intended for patient use. METHODS: An overview of the study protocol is presented. Unique considerations for health IT intervention trials and strategies are described to maintain equipoise, to monitor data safety and intervention fidelity, and to keep pace with changing technology during such trials. LESSONS LEARNED: The sovereignty granted to technology, the rapid pace of changes in technology, ubiquitous use in health care, and obligation to maintain the safety of research participants challenge researchers to address these issues in ways that maintain the integrity of intervention trials designed to evaluate the impact of health IT interventions intended for patient use. CONCLUSIONS: Our experience evaluating the efficacy of Pocket PATH may provide practical guidance to investigators about how to comply with established procedures for conducting RCTs and include strategies to address the unique issues associated with the evaluation of health IT for patient use.

The effects of expression: how providing emotional support online improves cancer patients' coping strategies.

BACKGROUND: Emotional support has traditionally been conceived as something a breast cancer patient receives. However, this framework may obscure a more complex process, facilitated by the emerging social media environment, which includes the effects of composing and sending messages to others. Accordingly, this study explores the effects of expression and reception of emotional support messages in online groups and the importance of bonding as a mediator influencing the coping strategies of breast cancer patients. METHODS: Data were collected as part of two National Cancer Institute-funded randomized clinical trials. Eligible subjects were within 2 months of diagnosis of primary breast cancer or recurrence. Expression and reception of emotionally supportive messages were tracked and coded for 237 breast cancer patients. Analysis resulted from merging 1) computer-aided content analysis of discussion posts, 2) action log analysis of system use, and 3) longitudinal survey data. RESULTS: As expected, perceived bonding was positively related to all four coping strategies (active coping: ß = 0.251, P = .000; positive reframing: ß = 0.288, P = .000; planning: ß = 0.213, P = .006; humor: ß = 0.159, P = .009). More importantly, expression (γ = 0.138, P = .027), but not reception (γ = -0.018, P = .741), of emotional support increases perceived bonding, which in turn mediates the effects on patients' positive coping strategies. CONCLUSIONS: There is increasing importance for scholars to distinguish the effects of expression from reception to understand the processes involved in producing psychosocial benefits. This study shows that emotional support is more than something cancer patients receive; it is part of an active, complex process that can be facilitated by social media.

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.

Mediating processes of two communication interventions for breast cancer patients.

OBJECTIVE: Test whether three mediating processes of Self-Determination Theory are involved in intervention effects on quality of life for breast cancer patients. METHODS: A randomized clinical trial recruited newly diagnosed breast cancer patients for 6 months of (1) Internet training and access, (2) access to an integrated eHealth system for breast cancer (CHESS), (3) a series of phone conversations with a Human Cancer Information Mentor, or (4) both (2) and (3). RESULTS: This paper reports results after the initial 6 weeks of intervention, at which point patients in the combined condition had higher quality of life scores than those in the other three conditions. All three Self-Determination Theory constructs (autonomy, competence, and relatedness) mediated that effect as hypothesized. In addition, the single-intervention groups were superior to the Internet-only group on relatedness, though perhaps this was too soon for that to carry through to quality of life as well. CONCLUSIONS: The SDT constructs do mediate these interventions' effects. PRACTICE IMPLICATIONS: Intervention design can profitably focus on enhancing autonomy, competence and relatedness.

Developing and validating a model to predict the success of an IHCS implementation: the Readiness for Implementation Model.

OBJECTIVE: To develop and validate the Readiness for Implementation Model (RIM). This model predicts a healthcare organization's potential for success in implementing an interactive health communication system (IHCS). The model consists of seven weighted factors, with each factor containing five to seven elements. DESIGN: Two decision-analytic approaches, self-explicated and conjoint analysis, were used to measure the weights of the RIM with a sample of 410 experts. The RIM model with weights was then validated in a prospective study of 25 IHCS implementation cases. MEASUREMENTS: Orthogonal main effects design was used to develop 700 conjoint-analysis profiles, which varied on seven factors. Each of the 410 experts rated the importance and desirability of the factors and their levels, as well as a set of 10 different profiles. For the prospective 25-case validation, three time-repeated measures of the RIM scores were collected for comparison with the implementation outcomes. RESULTS: Two of the seven factors, 'organizational motivation' and 'meeting user needs,' were found to be most important in predicting implementation readiness. No statistically significant difference was found in the predictive validity of the two approaches (self-explicated and conjoint analysis). The RIM was a better predictor for the 1-year implementation outcome than the half-year outcome. LIMITATIONS: The expert sample, the order of the survey tasks, the additive model, and basing the RIM cut-off score on experience are possible limitations of the study. CONCLUSION: The RIM needs to be empirically evaluated in institutions adopting IHCS and sustaining the system in the long term.

Interactivity and Presence of Three eHealth Interventions.

A number of researchers have identified interactivity and presence as potentially important attributes of e-Health applications, because they are believed to influence users to interact with systems in ways that increase commitment, learning, and other desirable responses. This paper reports on the development of brief scales to assess the two concepts, and on use of them with participants in six conditions of a large-scale trial of interventions for breast cancer patients. Overall, the Internet scored very low on both measures. Versions of an integrated system of services (CHESS) scored higher, particularly as conditions added features to different versions of the system. Interventions involving a human Cancer Information Mentor scored highest, though even the Mentor was perceived as more interactive and having more presence when combined with the integrated eHealth system.

Factors Associated with Use of Interactive Cancer Communication System: An Application of the Comprehensive Model of Information Seeking.

In order to provide insights about cancer patients' online information seeking behaviors, the present study analyzes individuals' transaction log data and reports on how demographics, disease-related factors, and psychosocial needs predict patterns of service use within a particular Interactive Cancer Communication System (ICCS). Study sample included 294 recently diagnosed breast cancer patients. Data included pretest survey scores of demographic, disease-related, and psychosocial factors and automatically collected ICCS use data over the 4-month intervention. Statistical analyses correlated pre-test survey scores with subsequent, specific types of ICCS service usage. Patterns of online cancer information seeking differed according to the patients' characteristics, suggesting that lower income, less educated women and those lacking in information-seeking competence use the computer and online services to the same or a greater degree if those services are made available to them. Results of this study can inform more effective resource development for future eHealth applications.

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.

User-centered design and interactive health technologies for patients.

Despite recommendations that patients be involved in the design and testing of health technologies, few reports describe how to involve patients in systematic and meaningful ways to ensure that applications are customized to meet their needs. User-centered design is an approach that involves end users throughout the development process so that technologies support tasks, are easy to operate, and are of value to users. In this article, we provide an overview of user-centered design and use the development of Pocket Personal Assistant for Tracking Health (Pocket PATH) to illustrate how these principles and techniques were applied to involve patients in the development of this interactive health technology. Involving patient-users in the design and testing ensured functionality and usability, therefore increasing the likelihood of promoting the intended health outcomes.

Unraveling Uses and Effects of an Interactive Health Communication System.

By developing a number of measures distinguishing amount, type of content, and when and how that content is used, the current study revealed effective patterns of use that are associated with quality of life benefits during an eHealth intervention. Results generally suggest that the benefits depend on how a patient uses the system, far more than on sheer amount of exposure or even what type of content is chosen. The next generation of eHealth system should focus on providing new and varying content over time, but even more on encouraging intensity of use and long-term commitment to the system.

Expressing positive emotions within online support groups by women with breast cancer.

Based upon Fredrickson's Broaden-and-Build Theory of Positive Emotions, this study examined the role of expressing positive emotions in online support groups for women with breast cancer. Underserved women with breast cancer in rural Wisconsin and Detroit, Michigan were recruited from 2001 to 2003, and they were given access to online support groups. Both pretest and four-month posttest surveys were conducted with a sample of 231 women. Messages from 96 active participants were analyzed using a computerized text analysis program. Psychological benefits that occurred following the expression of positive emotions were greater among those who expressed more negative emotions.

Communicating about self and others within an online support group for women with breast cancer and subsequent outcomes.

Research suggests communicating too much about one's self within an online support group may amplify breast cancer patients' focus on their own problems and exacerbate negative emotions while focusing on others may have the opposite effects. This study explored how pronoun usage within an online support group was associated with subsequent mental health outcomes. There were 286 patients recruited into the study who filled out the pre-test and 231 completed post-tests four months later with survey measures including breast cancer-related concerns and negative emotions. Messages were analyzed using a program counting first person and relational pronouns. A positive relationship was found between use of first person pronouns and negative emotions.