Fiona McTavish

Effect of Computer Support on Younger Women with Breast Cancer

AbstractOBJECTIVE: Assess impact of a computer-based patient support system on quality of life in younger women with breast cancer, with particular emphasis on assisting the underserved. DESIGN: Randomized controlled trial conducted between 1995 and 1998. SETTING: Five sites: two teaching hospitals (Madison, Wis, and Chicago, Ill), two nonteaching hospitals (Chicago, Ill), and a cancer resource center (Indianapolis, Ind). The latter three sites treat many underserved patients. PARTICIPANTS: Newly diagnosed breast cancer patients (N=246) under age 60. INTERVENTIONS: Experimental group received Comprehensive Health Enhancement Support System (CHESS), a home-based computer system providing information, decision-making, and emotional support. MEASUREMENTS AND MAIN RESULTS: Pretest and two posttest surveys (at two- and five-month follow-up) measured aspects of participation in care, social/information support, and quality of life. At two-month follow-up, the CHESS group was significantly more competent at seeking information, more comfortable participating in care, and had greater confidence in doctor(s). At five-month follow-up, the CHESS group had significantly better social support and also greater information competence. In addition, experimental assignment interacted with several indicators of medical underservice (race, education, and lack of insurance), such that CHESS benefits were greater for the disadvantaged than the advantaged group. CONCLUSIONS: Computer-based patient support systems such as CHESS may benefit patients by providing information and social support, and increasing their participation in health care. These benefits may be largest for currently underserved populations.

A Smartphone Application to Support Recovery From Alcoholism A Randomized Clinical Trial

IMPORTANCE Patients leaving residential treatment for alcohol use disorders are not typically offered evidence-based continuing care, although research suggests that continuing care is associated with better outcomes. A smartphone-based application could provide effective continuing care. OBJECTIVE To determine whether patients leaving residential treatment for alcohol use disorders with a smartphone application to support recovery have fewer risky drinking days than control patients. DESIGN, SETTING, AND PARTICIPANTS An unmasked randomized clinical trial involving 3 residential programs operated by 1 nonprofit treatment organization in the Midwestern United States and 2 residential programs operated by 1 nonprofit organization in the Northeastern United States. In total, 349 patients who met the criteria for DSM-IV alcohol dependence when they entered residential treatment were randomized to treatment as usual (n = 179) or treatment as usual plus a smartphone (n = 170) with the Addiction-Comprehensive Health Enhancement Support System (A-CHESS), an application designed to improve continuing care for alcohol use disorders. INTERVENTIONS Treatment as usual varied across programs; none offered patients coordinated continuing care after discharge. A-CHESS provides monitoring, information, communication, and support services to patients, including ways for patients and counselors to stay in contact. The intervention and follow-up period lasted 8 and 4 months, respectively. MAIN OUTCOMES AND MEASURES Risky drinking days--the number of days during which a patients drinking in a 2-hour period exceeded 4 standard drinks for men and 3 standard drinks for women, with standard drink defined as one that contains roughly 14 g of pure alcohol (12 oz of regular beer, 5 oz of wine, or 1.5 oz of distilled spirits). Patients were asked to report their risky drinking days in the previous 30 days on surveys taken 4, 8, and 12 months after discharge from residential treatment. RESULTS For the 8 months of the intervention and 4 months of follow-up, patients in the A-CHESS group reported significantly fewer risky drinking days than did patients in the control group, with a mean of 1.39 vs 2.75 days (mean difference, 1.37; 95% CI, 0.46-2.27; P = .003). CONCLUSIONS AND RELEVANCE The findings suggest that a multifeatured smartphone application may have significant benefit to patients in continuing care for alcohol use disorders. TRIAL REGISTRATION clinicaltrials.gov Identifier: NCT01003119.

Experiences of women with breast cancer: exchanging social support over the CHESS computer network.

Using an existential¨phenomenological approach, this paper describes how women with breast cancer experience the giving and receiving of social support in a computer-mediated context. Women viewed their experiences with the computer mediated support group as an additional and unique source of support in facing their illness. Anonymity within the support group fostered equalized participation and allowed women to communicate in ways that would have been more difficult in a face-to-face context. The asynchronous communication was a frustration to some participants, but some indicated that the format allowed for more thoughtful inter action. Motivations for seeking social support appeared to be a dynamic process, with a consistent progression from a position of receiving support to that of giving support. The primary benefits women received from participation in the group were communicating with other people who shared similar problems and helping others, which allowed them to change their focus from a preoccupation with their own sickness to thinking of others. Consistent with past research is the finding that women in this study expressed that social support is a multidimensional phenomenon and that their computer-mediated support group provided abundant emotional support, encouragement, and informational support. Excerpts from the phenomenological interviews are used to review and highlight key theoretical concepts from the research literatures on computer-mediated communication, social support, and the psychosocial needs of women with breast cancer.Using an existential-phenomenological approach, this paper describes how women with breast cancer experience the giving and receiving of social support in a computer-mediated context. Women viewed their experiences with the computer-mediated support group as an additional and unique source of support in facing their illness. Anonymity within the support group fostered equalized participation and allowed women to communicate in ways that would have been more difficult in a face-to-face context. The asynchronous communication was a frustration to some participants, but some indicated that the format allowed for more thoughtful interaction. Motivations for seeking social support appeared to be a dynamic process, with a consistent progression from a position of receiving support to that of giving support. The primary benefits women received from participation in the group were communicating with other people who shared similar problems and helping others, which allowed them to change their focus from a preoccupation with their own sickness to thinking of others. Consistent with past research is the finding that women in this study expressed that social support is a multidimensional phenomenon and that their computer-mediated support group provided abundant emotional support, encouragement, and informational support. Excerpts from the phenomenological interviews are used to review and highlight key theoretical concepts from the research literatures on computer-mediated communication, social support, and the psychosocial needs of women with breast cancer.

CHESS: 10 years of research and development in consumer health informatics for broad populations, including the underserved

This paper reviews the research and development around a consumer health informatics system CHESS (The Comprehensive Health Enhancement Support System) developed and tested by the Center for Health Systems Research and Analysis at the University of Wisconsin. The review places particular emphasis on what has been found with regard to the acceptance and use of such systems by high risk and underserved groups.

Use and Impact of eHealth System by Low-income Women With Breast Cancer

ABSTRACT This article is the second of a two-part series reporting on a population-based study intended to use an eHealth system to examine the feasibility of reaching underserved women with breast cancer (Gustafson, McTavish et al., Reducing the digital divide for low-income women with breast cancer, 2004; Madison Center for Health Systems Research and Analysis, University of Wisconsin; Comprehensive Health Enhancement Support System [CHESS]) and determine how they use the system and what impact it had on them. Participants included women recently diagnosed with breast cancer whose income was at or below 250% of poverty level and were living in rural Wisconsin (n = 144; all Caucasian) or Detroit (n = 85; all African American). Because this was a population-based study all 229 participants received CHESS. A comparison group of patients (n = 51) with similar demographics was drawn from a separate recently completed randomized clinical trial. Use rates (e.g., frequency and length of use as well as type of use) as well as impact on several dimensions of quality of life and participation in health care are reported. Low-income subjects in this study logged on and spent more time on CHESS than more affluent women in a previous study. Urban African Americans used information and analysis services more and communication services less than rural Caucasians. When all low-income women from this study are combined and compared with a low-income control group from another study, the CHESS group was superior to that control group in 4 of 8 outcome variables at both statistically and practically significant levels (social support, negative emotions, participation in health care, and information competence). When African Americans and Caucasians are separated the control groups sample size becomes 30 and 21 thus reducing power. Statistical significance is retained, however, in all four outcomes for Caucasians and in two of four for African Americans. Practical significance is retained for all four outcomes. We conclude that an eHealth system like CHESS will be used extensively and have a positive impact on low-income women with breast cancer.

Development and Pilot Evaluation of a Computer-Based Support System for Women with Breast Cancer

A computer-based support system was developed to help women cope with the crisis of breast cancer. The system, called Comprehensive Health Enhancement Support System (CHESS)contains integrated information, referral, decision, and social support programs. It was developed with intensive input from potential users through needs-assessment surveys and field testing. This article reports on the results of two pilot studies involving 30 women with breast cancer. The preliminary versions of CHESS were used extensively by older and younger women and by college and high school graduates. Participants in the pilot studies suggested several content enhancements and user-friendly aids for the developing system. User surveys indicated that CHESS was easy to use and would be valuable to other women with breast cancer, their partners, and their adult children. The women reported that they experienced more positive emotions and fewer negative emotions as a result of using the system.

The Roles of Social Support and Coping Strategies in Predicting Breast Cancer Patients’ Emotional Well-being Testing Mediation and Moderation Models

The goal of the current study was to examine how social support and coping strategies are related in predicting emotional well-being of women with breast cancer. In achieving this goal, we examined two hypothesized models: (1) a moderation model where social support and coping strategies interact with each other in affecting psychological well-being; and (2) a mediation model where the level of social support influences choices of coping strategies between self-blame and positive reframing. In general, the data from the current study were more consistent with the mediation model than the moderation model.

Expressing Positive Emotions within Online Support Groups by Women with Breast Cancer

Based upon Fredricksons 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.

Empowering patients using computer based health support systems.

With the increased pressure to contain healthcare costs, it is critical to find more eVective ways of providing information, emotional support, decision making, and behaviour change assistance for patients. In the United States, a doctor spends approximately 18 minutes in face to face contact with the patient during each clinic appointment. 1 During morning hospital rounds, physicians spend on average just over four minutes in the patient’s room. 2 It has been proposed that ideal physician communication with patients with breast cancer should be tailored to patients’ needs or coping styles to reduce their distress. 3 However, in an environment of continued pressure to reduce healthcare costs, it is virtually impossible for doctors to give patients adequate information or even direct them to appropriate support resources. If costs are to be reduced while at the same time improving patient support we must find new ways to help patients to cope with their disease, make necessary decisions, and gain emotional support. Computer systems can help to fill this void. A key problem encountered by people facing a health crisis is that they are often given information when they are least able to take it in, such as at the time of diagnosis. SiminoV and others have concluded that nearly all studies point to serious gaps in patient recall and understanding of the information they are given. 34

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.