Erin O’Carroll Bantum

Supportive care needs in patients with lung cancer.

Introduction: The goal of this study was to characterize the prevalence and intensity of supportive care needs and interest in specific supportive care services among individuals with lung cancer.

Evaluating the Validity of Computerized Content Analysis Programs for Identification of Emotional Expression in Cancer Narratives.

Psychological interventions provide linguistic data that are particularly useful for testing mechanisms of action and improving intervention methodologies. For this study, emotional expression in an Internet-based intervention for women with breast cancer (n = 63) was analyzed via rater coding and 2 computerized coding methods (Linguistic Inquiry and Word Count [LIWC] and Psychiatric Content Analysis and Diagnosis [PCAD]). Although the computerized coding methods captured most of the emotion identified by raters (LIWC sensitivity = .88; PCAD sensitivity = .83), both over-identified emotional expression (LIWC positive predictive value = .31; PCAD positive predictive value = .19). Correlational analyses suggested better convergent and discriminant validity for LIWC. The results highlight previously unrecognized deficiencies in commonly used computerized content-analysis programs and suggest potential modifications to both programs that could improve overall accuracy of automated identification of emotional expression. Although the authors recognize these limitations, they conclude that LIWC is superior to PCAD for rapid identification of emotional expression in text. (PsycINFO Database Record (c) 2009 APA, all rights reserved).

Surviving and Thriving With Cancer Using a Web-Based Health Behavior Change Intervention: Randomized Controlled Trial

Background Given the substantial improvements in cancer screening and cancer treatment in the United States, millions of adult cancer survivors live for years following their initial cancer diagnosis and treatment. However, latent side effects can occur and some symptoms can be alleviated or managed effectively via changes in lifestyle behaviors. Objective The purpose of this study was to test the effectiveness of a six-week Web-based multiple health behavior change program for adult survivors. Methods Participants (n=352) were recruited from oncology clinics, a tumor registry, as well as through online mechanisms, such as Facebook and the Association of Cancer Online Resources (ACOR). Cancer survivors were eligible if they had completed their primary cancer treatment from 4 weeks to 5 years before enrollment. Participants were randomly assigned to the Web-based program or a delayed-treatment control condition. Results In total, 303 survivors completed the follow-up survey (six months after completion of the baseline survey) and participants in the Web-based intervention condition had significantly greater reductions in insomnia and greater increases in minutes per week of vigorous exercise and stretching compared to controls. There were no significant changes in fruit and vegetable consumption or other outcomes. Conclusions The Web-based intervention impacted insomnia and exercise; however, a majority of the sample met or exceeded national recommendations for health behaviors and were not suffering from depression or fatigue at baseline. Thus, the survivors were very healthy and well-adjusted upon entry and their ability to make substantial health behavior changes may have been limited. Future work is discussed, with emphasis placed on ways in which Web-based interventions can be more specifically analyzed for benefit, such as in regard to social networking. Trial Registration Clinicaltrials.gov NCT00962494; http://www.clinicaltrials.gov/ct2/show/NCT00962494 (Archived by WebCite at http://www.webcitation.org/6NIv8Dc6Q).

Benefits and challenges experienced by professional facilitators of online support groups for cancer survivors

Objectives: The primary aim of the study was to identify specific strengths and challenges of facilitating online cancer support groups relative to face‐to‐face groups through the use of deductive qualitative analysis. A secondary aim was to quantitatively validate the identified strengths and challenges.

Dissecting an Online Intervention for Cancer Survivors: Four Exploratory Analyses of Internet Engagement and Its Effects on Health Status and Health Behaviors

The Internet has been used extensively to offer health education content and also for social support. More recently, we have seen the advent of Internet-based health education interventions that combine content with structured social networking. In many ways this is the Internet equivalent to small group interventions. While we have some knowledge about the efficacy of these interventions, few studies have examined how participants engage with programs and how that might affect outcomes. This study seeks to explore (a) the content of posts and (b) the nature of participant engagement with an online, 6-week workshop for cancer survivors and how such engagement may affect health outcomes. Using methodologies related to computational linguistics (latent Dirichlet allocation) and more standard statistical approaches, we identified (a) discussion board themes; (b) the relationship between reading and posting messages and outcomes; (c) how making, completing, or not completing action plans is related to outcome; and (d) how self-tailoring relates to outcomes. When considering all posts, emotional support is a key theme. However, different sets of themes are expressed in the first workshop post where participants are asked to express their primary concern. Writing posts was related to improved outcomes, but reading posts was less important. Completing, but not merely making, action plans and self-tailoring are statistically associated with future positive health outcomes. The findings from these exploratory studies can be considered when shaping future electronically mediated social networking interventions. In addition, the methods used here can be used in analyzing other large electronically mediated social-networking interventions.

Online cancer communities as informatics intervention for social support: conceptualization, characterization, and impact

Objectives: The Internet and social media are revolutionizing how social support is exchanged and perceived, making online health communities (OHCs) one of the most exciting research areas in health informatics. This paper aims to provide a framework for organizing research of OHCs and help identify questions to explore for future informatics research. Based on the framework, we conceptualize OHCs from a social support standpoint and identify variables of interest in characterizing community members. For the sake of this tutorial, we focus our review on online cancer communities. Target audience: The primary target audience is informaticists interested in understanding ways to characterize OHCs, their members, and the impact of participation, and in creating tools to facilitate outcome research of OHCs. OHC designers and moderators are also among the target audience for this tutorial. Scope: The tutorial provides an informatics point of view of online cancer communities, with social support as their leading element. We conceptualize OHCs according to 3 major variables: type of support, source of support, and setting in which the support is exchanged. We summarize current research and synthesize the findings for 2 primary research questions on online cancer communities: (1) the impact of using online social support on an individuals health, and (2) the characteristics of the community, its members, and their interactions. We discuss ways in which future research in informatics in social support and OHCs can ultimately benefit patients.

Linguistically-tailored video feedback increases total and positive emotional expression in a structured writing task

A strength of computer-based interventions is the capacity to tailor to individual differences, but most studies have tailored to self-report, rather than linguistic, data. The purpose of the present study was to develop and evaluate the effects of linguistically-tailored feedback on an Internet-based expressive writing intervention. Two hundred eighty-one participants were asked to engage in 3days of expressive writing and were randomly assigned to one of 3 feedback conditions: control (no feedback), simple (feedback about levels of emotional expression), and directive (simple feedback+suggestions for emotional processing). A Perl-based implementation of Linguistic Inquiry and Word Count (LIWC) was developed in order to provide dynamic feedback to participants based on levels of emotional expression identified in their writing. This implementation provided near-perfect correlations with standard LIWC output, rs=.98-1.00. Positive and total, but not negative, emotional expression increased over time for those who received simple or directive feedback. These findings suggest that linguistically-tailored feedback has the potential to alter patterns of engagement in computer-based interventions. However, additional research is needed to identify the most effective types of feedback in order to enhance immediate effects on writing and longitudinal effects on relevant outcomes.

Characterizing Social Networks and Communication Channels in a Web-Based Peer Support Intervention

Web and mobile (mHealth) interventions have promise for improving health outcomes, but engagement and attrition may be reducing effect sizes. Because social networks can improve engagement, which is a key mechanism of action, understanding the structure and potential impact of social networks could be key to improving mHealth effects. This study (a) evaluates social network characteristics of four distinct communication channels (discussion board, chat, e-mail, and blog) in a large social networking intervention, (b) predicts membership in online communities, and (c) evaluates whether community membership impacts engagement. Participants were 299 cancer survivors with significant distress using the 12-week health-space.net intervention. Social networking attributes (e.g., density and clustering) were identified separately for each type of network communication (i.e., discussion board, blog, web mail, and chat). Each channel demonstrated high levels of clustering, and being a community member in one communication channel was associated with being in the same community in each of the other channels (φ = 0.56-0.89, ps < 0.05). Predictors of community membership differed across communication channels, suggesting that each channel reached distinct types of users. Finally, membership in a discussion board, chat, or blog community was strongly associated with time spent engaging with coping skills exercises (Ds = 1.08-1.84, ps < 0.001) and total time of intervention (Ds = 1.13-1.80, ps < 0.001). mHealth interventions that offer multiple channels for communication allow participants to expand the number of individuals with whom they are communicating, create opportunities for communicating with different individuals in distinct channels, and likely enhance overall engagement.

Modeling intention to participate in face-to-face and online lung cancer support groups

Lung cancer patients and survivors are significantly less likely to use support groups than those with other cancers. In this study, we evaluated the utility and specificity of the Behavioral Model for Vulnerable Populations for modeling intention to participate in face‐to‐face (F2F) and online lung cancer support groups.

Cancer Clinical Trials in Hawaiâi: Whoâs Being Represented

Background: Representation of diverse ethnic/racial groups is critically important in the development of cancer prevention and treatment strategies. However, representation of diverse ethnic/racial groups has yet to be fully realized, especially among historically disadvantaged minority groups. Ethnic minority groups account for about 75% of Hawai‘i’s population; approximately 55% of the state’s population self-identify as Asian (with the most predominant ethnic/racial groups being Japanese, Filipino, Chinese, and Korean) and approximately 24% as Native Hawaiian/Pacific Islander. Such diversity provided researchers a unique opportunity to characterize the demographic profile of cancer prevention and treatment trials conducted in Hawai ‘i. Methods: In the current study, the gender and ethnic/racial distribution of four national cancer prevention trials and 178 treatment trials conducted in Hawai‘i from 1992 to 2004 were characterized. Results: Native Hawaiian men were significantly less likely to participate in both cancer prevention and treatment trials than Native Hawaiian women. In addition, Native Hawaiian men and women had the lowest proportion of participation in cancer clinical trials in comparison to White and Asian American men and women. Conclusions: Our findings identify gender and ethnic/racial differences in the participation of cancer clinical trial participants in the state of Hawai‘i. This serves as an important indicator for the need of future research to specifically investigate the relationship of culture and other factors on participation. Such research may inform promotional strategies that increase trial participation, with the hopeful prospect of decreasing cancer incidence and increasing quality of life for those diagnosed with cancer.