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.

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.

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.

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.

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.

Health information, credibility, homophily, and influence via the Internet: Web sites versus discussion groups.

Despite concerns about online health information and efforts to improve its credibility, how users evaluate and utilize such information presented in Web sites and online discussion groups may involve different evaluative mechanisms. This study examined credibility and homophily as two underlying mechanisms for social influence with regard to online health information. An original experiment detected that homophily grounded credibility perceptions and drove the persuasive process in both Web sites and online discussion groups. The more homophilous an online health information stimulus was perceived as being, the more likely people were to adopt the advice offered in that particular piece of information.

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.

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.

A tale of two studies: the importance of setting, subjects and context in two randomized, controlled trials of a web-based decision support for perimenopausal and postmenopausal health decisions.

OBJECTIVE: Knowledge relevant to women's peri- and postmenopausal health decisions has been evolving rapidly. Web-based decision supports can be rapidly updated and have the potential to improve the quality of patients' decisions. We developed and tested a web-based decision support for peri- and postmenopausal health decisionmaking. METHODS: We recruited 409 women aged 45-75 for one randomized, controlled trial and 54 women with an upcoming clinic appointment for a subsequent trial. Women were randomized to use the web-based decision support versus a printed brochure (first trial) and usual care (second trial). Outcomes were changes in decisional satisfaction, decisional conflict, and knowledge, both within each trial and compared across the trials. RESULTS: Intervention subjects had greater increases in decisional satisfaction in the second trial and knowledge in both trials. A high dropout rate among women randomized to the website in the first trial effectively negated benefits in that trial, but not in the second. CONCLUSIONS: The utility of this web-based decision support in two trials depended on a number of factors that appear related to the urgency of making a decision. PRACTICE IMPLICATIONS: Decision aids should be targeted to patients actively trying to make a decision.

Doctor-patient relationship as motivation and outcome: examining uses of an Interactive Cancer Communication System.

OBJECTIVE: To examine how the pre-existing doctor-patient relationship predicts conceptually distinct service use within an Interactive Cancer Communication System (ICCS) for underserved women with breast cancer and in turn how service utilization influences the doctor-patient relationship. METHODS: Study sample included 231 recently diagnosed, lower income breast cancer patients. Participants were provided a free computer, Internet access and training in how to use an ICCS called the Comprehensive Health Enhancement Support System (CHESS) "Living with Breast Cancer" program. Survey data was collected at pre-test and 4-months after using the system, and use data about how women used the system was also collected. RESULTS: The only statistically significant predictor of service use was that patients with a more negative appraisal about the doctor-patient relationship used the Ask an Expert service more frequently, and there were trends toward a more negative appraisal of the doctor-patient relationship being associated with higher use of Information and Interactive services. Conversely, there was a trend toward a more positive appraisal predicting higher use of the Discussion Group service. In terms of statistically significant effects, more frequent utilization of Information services was associated with a more positive appraisal of the doctor relationship. CONCLUSION: While a more negative perception of the doctor-patient relationships at pre-test was associated with higher use of most of the conceptually distinct services within this ICCS, use of the Information services was associated with having a more positive appraisal of the doctor-patient relationship at post-test suggesting that high-quality information on the Internet can serve to improve patients' satisfaction with their doctor.

Internet telehealth for pediatric asthma case management: integrating computerized and case manager features for tailoring a Web-based asthma education program.

This article reports on the development of a personalized, Web-based asthma-education program for parents whose 4- to 12-year-old children have moderate to severe asthma. Personalization includes computer-based tailored messages and a human coach to build asthma self-management skills. Computerized features include the Asthma Manager, My Calendar/Reminder, My Goals, and a tailored home page. These are integrated with monthly asthma-education phone calls from an asthma-nurse case manager. The authors discuss the development process and issues and describe the current randomized evaluation study to test whether the year-long integrated intervention can improve adherence to a daily asthma controller medication, asthma control, and parent quality of life to reduce asthma-related healthcare utilization. Implications for health education for chronic disease management are raised.

Attributes of interactive online health information systems.

The development of online communication systems related to prevention, decision making, and coping with cancer has outpaced theoretical attention to the attributes that appeal to system users and that create effective interactions. This essay reviews a number of sociotechnical attributes related to online discussion systems and tutorials, including interactivity, presence, homophily, social distance, anonymity/privacy, and interaction management. These attributes are derived from different theoretical perspectives which have led to clinical trials and other empirical studies demonstrating effectiveness or attraction to end users. The effects of a subset of these attributes are connected to learning, social influence, and coping, as illustrated in evaluations of an interactive smoking prevention site and a cancer advice/support discussion system.

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.

Barriers to information access, perceived health competence, and psychosocial health outcomes: test of a mediation model in a breast cancer sample.

This study examined the relationship between breast cancer patients' experience of barriers to accessing health information and their psychosocial health outcomes and explored the extent to which this relationship was mediated by patient perceptions of competence in dealing with health-related issues. Study sample consisted of 225 women surveyed within 6 months of diagnosis. Regression analyses suggested that patients who reported greater difficulty in accessing needed information experienced lower emotional (P=0.05), functional (P<0.05), and social/family (P<0.05) well-being as well as lower perceptions of health competence (P<0.001). Also, patient perceptions of health competence mediated the relationship between barriers to accessing information and patient outcomes (emotional well-being, P<0.05; functional well-being. P<0.01; social/family well-being, P=0.01). Breast cancer patients often report dissatisfaction with the extent to which their information needs are addressed by their health care providers. Our findings underscore the need for designing and implementing interventions that would aid providers in better meeting the information needs of their patients.

Assessing the unmet information, support and care delivery needs of men with prostate cancer.

This study identified the key Unmet Needs of men with localized prostate cancer. A series of Nominal Groups were used to identify needs, from which a 135-item survey was developed to assess both the Importance and Unmet Need of each item. An Importance-Weighted Unmet Need score was calculated for each item, incorporating both the Importance and the degree to which the need was unmet. Surveys (n=500) were distributed in four geographically distinct areas, with a response rate of 46%. Respondents were 90% Caucasian, 80% married, with a mean age of 66 years, and mean education of 14 years. Care delivery needs were most important and least unmet, while Support needs were least important and most unmet. However, when degree to which needs were unmet was weighted by Importance, information needs had the highest Importance-Weighted Unmet Need scores. The greatest Unmet Needs for information were in knowledge of recurrence issues and in side effects of the illness and its treatment.