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.

Detecting Recovery Problems Just in Time: Application of Automated Linguistic Analysis and Supervised Machine Learning to an Online Substance Abuse Forum.

BACKGROUND: Online discussion forums allow those in addiction recovery to seek help through text-based messages, including when facing triggers to drink or use drugs. Trained staff (or "moderators") may participate within these forums to offer guidance and support when participants are struggling but must expend considerable effort to continually review new content. Demands on moderators limit the scalability of evidence-based digital health interventions. OBJECTIVE: Automated identification of recovery problems could allow moderators to engage in more timely and efficient ways with participants who are struggling. This paper aimed to investigate whether computational linguistics and supervised machine learning can be applied to successfully flag, in real time, those discussion forum messages that moderators find most concerning. METHODS: Training data came from a trial of a mobile phone-based health intervention for individuals in recovery from alcohol use disorder, with human coders labeling discussion forum messages according to whether or not authors mentioned problems in their recovery process. Linguistic features of these messages were extracted via several computational techniques: (1) a Bag-of-Words approach, (2) the dictionary-based Linguistic Inquiry and Word Count program, and (3) a hybrid approach combining the most important features from both Bag-of-Words and Linguistic Inquiry and Word Count. These features were applied within binary classifiers leveraging several methods of supervised machine learning: support vector machines, decision trees, and boosted decision trees. Classifiers were evaluated in data from a later deployment of the recovery support intervention. RESULTS: To distinguish recovery problem disclosures, the Bag-of-Words approach relied on domain-specific language, including words explicitly linked to substance use and mental health ("drink," "relapse," "depression," and so on), whereas the Linguistic Inquiry and Word Count approach relied on language characteristics such as tone, affect, insight, and presence of quantifiers and time references, as well as pronouns. A boosted decision tree classifier, utilizing features from both Bag-of-Words and Linguistic Inquiry and Word Count performed best in identifying problems disclosed within the discussion forum, achieving 88% sensitivity and 82% specificity in a separate cohort of patients in recovery. CONCLUSIONS: Differences in language use can distinguish messages disclosing recovery problems from other message types. Incorporating machine learning models based on language use allows real-time flagging of concerning content such that trained staff may engage more efficiently and focus their attention on time-sensitive issues.

Implementing a Mobile Health System to Integrate the Treatment of Addiction Into Primary Care: A Hybrid Implementation-Effectiveness Study.

BACKGROUND: Despite the near ubiquity of mobile phones, little research has been conducted on the implementation of mobile health (mHealth) apps to treat patients in primary care. Although primary care clinicians routinely treat chronic conditions such as asthma and diabetes, they rarely treat addiction, a common chronic condition. Instead, addiction is most often treated in the US health care system, if it is treated at all, in a separate behavioral health system. mHealth could help integrate addiction treatment in primary care. OBJECTIVE: The objective of this paper was to report the effects of implementing an mHealth system for addiction in primary care on both patients and clinicians. METHODS: In this implementation research trial, an evidence-based mHealth system named Seva was introduced sequentially over 36 months to a maximum of 100 patients with substance use disorders (SUDs) in each of three federally qualified health centers (FQHCs; primary care clinics that serve patients regardless of their ability to pay). This paper reports on patient and clinician outcomes organized according to the Reach, Effectiveness, Adoption, Implementation, and Maintenance (RE-AIM) framework. RESULTS: The outcomes according to the RE-AIM framework are as follows: Reach-Seva reached 8.31% (268/3226) of appropriate patients. Reach was limited by our ability to pay for phones and data plans for a maximum of 100 patients per clinic. Effectiveness-Patients who were given Seva had significant improvements in their risky drinking days (44% reduction, (0.7-1.25)/1.25, P=.04), illicit drug-use days (34% reduction, (2.14-3.22)/3.22, P=.01), quality of life, human immunodeficiency virus screening rates, and number of hospitalizations. Through Seva, patients also provided peer support to one another in ways that are novel in primary care settings. Adoption-Patients sustained high levels of Seva use-between 53% and 60% of the patients at the 3 sites accessed Seva during the last week of the 12-month implementation period. Among clinicians, use of the technology was less robust than use by patients, with only a handful of clinicians using Seva in each clinic and behavioral health providers making most referrals to Seva in 2 of the 3 clinics. Implementation-At 2 sites, implementation plans were realized successfully; they were delayed in the third. Maintenance-Use of Seva dropped when grant funding stopped paying for the mobile phones and data plans. Two of the 3 clinics wanted to maintain the use of Seva, but they struggled to find funding to support this. CONCLUSIONS: Implementing an mHealth system can improve care among primary care patients with SUDs, and patients using the system can support one another in their recovery. Among clinicians, however, implementation requires figuring out how information from the mHealth system will be used and making mHealth data available in the electronic health (eHealth) record. In addition, paying for an mHealth system remains a challenge.

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).

Self-Determination Theory and Computer-Mediated Support: Modeling Effects on Breast Cancer Patient's Quality-of-Life.

A breast cancer diagnosis typically results in dramatic and negative effects on an individual's quality of life. Web-based interactive support systems such as the Comprehensive Health Enhancement Support System (CHESS) offer one avenue for mitigating these negative effects. While evidence supports the efficacy of such systems, evaluations typically fail to provide a true test of the theorized model of effects, treating self-determination theory's constructs of competence, relatedness, and autonomy as outcomes rather than mediators. Using path analysis, this study tests the nature of the proposed mediated relationship between system engagement and quality-of-life indicators utilizing data collected from women (N = 90) who participated in the treatment condition of a CHESS randomized controlled trial. Findings support a latent model, indicating that system effects are mediated through an intertwined measure of autonomy, competence, and relatedness.

Implementing an mHealth system for substance use disorders in primary care: a mixed methods study of clinicians' initial expectations and first year experiences.

BACKGROUND: Millions of Americans need but don't receive treatment for substance use, and evidence suggests that addiction-focused interventions on smart phones could support their recovery. There is little research on implementation of addiction-related interventions in primary care, particularly in Federally Qualified Health Centers (FQHCs) that provide primary care to underserved populations. We used mixed methods to examine three FQHCs' implementation of Seva, a smart-phone app that offers patients online support/discussion, health-tracking, and tools for coping with cravings, and offers clinicians information about patients' health tracking and relapses. We examined (a) clinicians' initial perspectives about implementing Seva, and (b) the first year of implementation at Site 1. METHODS: Prior to staggered implementation at three FQHCs (Midwest city in WI vs. rural town in MT vs. metropolitan NY), interviews, meetings, and focus groups were conducted with 53 clinicians to identify core themes of initial expectations about implementation. One year into implementation at Site 1, clinicians there were re-interviewed. Their reports were supplemented by quantitative data on clinician and patient use of Seva. RESULTS: Clinicians anticipated that Seva could help patients and make behavioral health appointments more efficient, but they were skeptical that physicians would engage with Seva (given high caseloads), and they were uncertain whether patients would use Seva. They were concerned about legal obligations for monitoring patients' interactions online, including possible "cries for help" or inappropriate interactions. One year later at Site 1, behavioral health care providers, rather than physicians, had incorporated Seva into patient care, primarily by discussing it during appointments. Given workflow/load concerns, only a few key clinicians monitored health tracking/relapses and prompted outreach when needed; two researchers monitored the discussion board and alerted the clinic as needed. Clinician turnover/leave complicated this approach. Contrary to clinicians' initial concerns, patients showed sustained, mutually supportive use of Seva, with few instances of misuse. CONCLUSIONS: Results suggest the value of (a) focusing implementation on behavioral health care providers rather than physicians, (b) assigning a few individuals (not necessarily clinicians) to monitor health tracking, relapses, and the discussion board, (c) anticipating turnover/leave and having designated replacements. Patients showed sustained, positive use of Seva. TRIAL REGISTRATION: ClinicalTrials.gov ( NCT01963234 ).

Predictors of Online Health Information Seeking Among Women with Breast Cancer: The Role of Social Support Perception and Emotional Well-Being.

This study attempts to examine the role of social support perception and emotional well-being on online information seeking among cancer patients within the context of CHESS, a well-established Interactive Cancer Communication System (ICCS). Factor and regression analyses conducted among 231 breast cancer patients revealed that social support perception and emotional well-being interacted with each other to influence online health information seeking. Patients with low social support perception and high emotional well-being were most likely to seek health information, whereas patients with high social support perception and high emotional well-being sought out the same information least. Practical implications of the study findings were further discussed.

The process and effect of supportive message expression and reception in online breast cancer support groups.

OBJECTIVE: To better understand the process and effect of social support exchanges within computer-mediated social support (CMSS) groups for breast cancer patients, this study examines (1) the dynamic interplay between emotional support giving and receiving and (2) the relative effects of emotional support giving and receiving on patients' psychosocial health outcomes. METHODS: Data was collected from 177 patients who participated in online cancer support groups within the Comprehensive Health Enhancement Support System (CHESS) during the 4-month intervention. Data included (1) pretest and/or post-test survey scores of demographic, disease-related, and psychosocial factors, (2) automatically collected CHESS usage data, and (3) computer-aided content analysis of social support messages posts. RESULTS: Hierarchical regression analyses revealed that those who receive higher levels of support from others have fewer breast cancer-related concerns (ß = - 0.15, p<0.05), while those who give higher levels of support to others reframe their own problems in a positive light and adopt more positive strategies for coping (ß = 0.16, p<0.05). In addition to these positive effects, partial correlation analysis indicated that these two supportive behaviors are reciprocal. CONCLUSIONS: We concluded that supportive exchanges of receiving and giving play positive, but different, roles in predicting psychosocial health outcomes. Moreover, emotional support giving and receiving tend to reinforce each other. Our findings help practitioners, health-care providers, and health system designers make sense of diverse social support processes among cancer patients participating within CMSS groups.

Social and psychological determinants of levels of engagement with an online breast cancer support group: posters, lurkers, and nonusers.

Despite the benefits and growing availability of online cancer support groups, many breast cancer patients still do not actively participate in them. To better understand cancer patients' online information- and support-seeking behaviors, this study explores how various social and psychological characteristics predict different levels of engagement with an online breast cancer support group: posters, lurkers, and nonusers. The study sample included 231 recently diagnosed breast cancer patients. Data included baseline survey scores of demographic, disease-related, and psychosocial factors and automatically collected discussion group use data over the 4-month intervention. Patterns of engagement with the cancer support group differed according to the patients' characteristics, suggesting that (a) cancer patients have very different orientations to and engagement with an online support group, and (b) deficits in social and psychological resources may not be barriers to participation in a cancer support group, but rather motivators to interact with other patients. The authors discuss the theoretical and practical implications of their findings.

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.

How Patients Recovering From Alcoholism Use a Smartphone Intervention.

OBJECTIVE: Mobile technology has the potential to radically improve addiction treatment and continuing care by offering emotional and instrumental support anywhere and just in time. This is particularly important in addiction because timing is critical to preventing relapse. Although most experts consider alcoholism to be a chronic disease, providers do not typically offer ongoing support for relapse prevention after patients complete treatment, even though a central characteristic of alcoholism and other addictive behaviors is their chronically relapsing nature. A-CHESS is a smartphone-based system for preventing relapse to heavy drinking among people leaving active alcohol dependence treatment. A-CHESS is designed to improve competence, social relatedness, and motivation, the three tenets of Self-Determination Theory. This paper reports on the relative impact and use of A-CHESS four months after patients entered the study and discusses implications of the results on treating addiction and chronic diseases generally. METHODS: A total of 349 individuals with alcohol dependence leaving residential treatment were randomly assigned to either receive A-CHESS+Treatment as Usual or Treatment as Usual (standard aftercare). Patients came from two treatment agencies, one in the Midwest and one in the Northeast. Patients assigned to A-CHESS received a smartphone for 8 months and were followed for 12. The authors analyzed use patterns during the first 4 months of use by those receiving A-CHESS. RESULTS: Participants used A-CHESS heavily and sustained their use over time. Ninety-four percent of A-CHESS participants used the application during the first week after residential treatment. At week 16, almost 80% continued to access A-CHESS. Participants with alcohol and drug-dependence showed higher levels of system use than those with alcohol dependence only. Participants with a mental health diagnosis had slightly lower levels of use at the end of the intervention period (week 16), although more than 70% still accessed the system. CONCLUSIONS: These findings illustrate that patients with alcohol dependence, alcohol and drug dependence, and mental health issues will use smartphone applications such as A-CHESS for ongoing support, resources and information, thus extending patient care if given the opportunity. Further analysis is needed to determine if sustained A-CHESS use improves outcomes.

Predictors of supportive message expression and reception in an interactive cancer communication system.

Social support in computer-mediated settings is an important variable in health communication research, yet little is known about the factors that influence the amount of social support one gives and receives in online support groups. To shed some light on this issue, the authors examined demographics, disease-related factors, psychosocial factors, and strategies for coping with breast cancer as potential determinants of which patients provide support to others and which ones consume it. Data collected from 177 participants in the Comprehensive Health Enhancement Support System "Living With Breast Cancer" program revealed that individuals who are younger, have higher levels of positive reframing, and lower levels of self-blame are more likely to provide emotional support in online settings. In contrast, individuals who are more educated, have less perceived availability of social support, and have lower levels of religious coping are more likely to receive emotional support from others. The authors discuss the theoretical and practical implications for providing effective psychosocial support for women with breast cancer.

Empathic exchanges in online cancer support groups: distinguishing message expression and reception effects.

Past studies on the efficacy of participation in online cancer support groups have primarily focused on the role of expression in the accrual of health benefits for participants. Unfortunately, few steps have been taken to determine whether this observed effect arises solely from the internal mental processes underlying the act of expressing or, perhaps, owes something to a nuanced, multidimensional understanding of expression that includes reception of responses to what is expressed. To test for the multilayered effect, we attend to one of the key concepts in the online support community scholarship: empathy. Our findings suggest that it is a combination of empathy expression and reception that is crucial to attaining optimal benefits for cancer patients. Further, our finding supports the buffering hypothesis that empathic expression provides a salutary effect for patients who experienced a higher degree of concern associated with their cancer diagnosis and follow-up treatments.

From Diagnosis to Death: A Case Study of Coping With Breast Cancer as Seen Through Online Discussion Group Messages.

To understand the underlying psychosocial reactions against the unfolding of medical events that announce the disease progression, the objective of this analysis was to identify the patterns of online discussion group message themes in relation to the medical timeline of one woman's breast cancer trajectory. 202 messages posted by Darlene (our studied case) were analyzed by 2 independent coders using a grounded theory approach. The findings suggest that the pattern of messages was clearly correlated with distress-inducing events. The most frequent interaction theme was about building friendship with peers through communication of encouragement, validation, appreciation, and life sharing. Narratives of medical progression were constantly updated to identify similarities with peers. Family issues were increasingly raised at the end of life.

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.

Giving and receiving social support in online substance use disorder forums: How self-efficacy moderates effects on relapse.

OBJECTIVE: Individuals in recovery for substance use disorders (SUDs) increasingly use online social support forums, necessitating research on how communicating through these forums can affect recovery. This study examines how giving and receiving support within an SUDs recovery forum predict substance use, and considers whether effects vary according to participants' self-efficacy. METHODS: We applied content analysis to 3440 messages that were posted by 231 participants in an online SUDs forum. Surveys assessed social support reception and substance use at three timepoints. We assessed relationships between giving and receiving support and substance use (risky drinking days, illicit drug use days), and the interactions between self-efficacy and social support in predicting substance use outcomes. RESULTS: Receiving more emotional support was associated with reduced illicit drug use at 6 and 12 months. For those with low self-efficacy, giving more emotional support predicted less risky drinking at month 12, whereas giving more informational support predicted more risky drinking at month 12. CONCLUSION: These results suggest conditional benefits of exchanging support in an online SUDs forum, depending upon type of support (informational versus emotional), the participants' role (giver or receiver), and their self-efficacy. PRACTICE IMPLICATIONS: We discuss implications for designing and using peer-to-peer support platforms.

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

Enrolling adequate numbers of subjects to research projects that focus on the supportive needs of patients and caregivers is difficult, and this difficulty significantly impedes investigation of this important research area. We report reasons that patients or their informal caregivers declined to participate in one of two randomized, longitudinal clinical trials testing the Comprehensive Health Enhancement Support System (CHESS), a Web-based information and support scheme for people with advanced cancer and their primary informal caregivers. Patients were asked why they declined participation in these trials; their responses then were recorded and coded into themes. The leading reasons included factors related to using a computer (eg, lack of familiarity with using this technology, access to other resources), being attended to by a caregiver (eg, poor caregiver health, caregiver burden, patient doing well and not needing a caregiver), taking part in a study (eg, survey burden, privacy concerns, wording of the consent form), dealing with personal issues (eg, time commitment, timing of study, feelings of being overwhelmed, and coping styles), and lack of interest. By using eligibility criteria that largely parallel those for studies of chemotherapeutic regimens, this research project highlighted reasons why subjects decline participation in clinical trials. This information was specific to supportive care trials; it may help researchers plan recruitment strategies and enrollment targets.

Effects of using online narrative and didactic information on healthcare participation for breast cancer patients.

OBJECTIVES: To determine the effects of online narrative and didactic information on breast cancer patients' healthcare participation and the interaction effects of race. SAMPLE: 353 breast cancer patients (111 African Americans) using an eHealth program with narratives (audiovisual and text) and didactic information (text only). MEASURES: healthcare participation scale (0, 4 months), online information use. ANALYSES: hierarchical regression. RESULTS: Narrative (beta=0.123, p<0.01) and didactic (beta=0.104, p<0.05) information use had independent and positive effects on healthcare participation. Effects of both were significantly greater for African Americans. CONCLUSIONS: Findings are consistent with and advance prior research on online learning processes and outcomes for breast cancer patients: (1) benefits accrue with using a variety of online learning tools; (2) African Americans use and benefit more from online narrative and didactic information than do Caucasians. PRACTICE IMPLICATIONS: eHealth programs should provide both didactic and narrative information-especially for African Americans and might consider making greater use of interactive and audiovisual formats. As patients increasingly use of the web for cancer information, clinicians should provide lists of web high quality resources that provide both narrative and didactic 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.