Electronic support groups for breast carcinoma: a clinical trial of effectiveness.

Background: A recent Pew Charitable Trust study found that 52,000,000 individuals used the Internet to obtain health/medical information. Clinical trials of face-to-face breast carcinoma support groups show evidence of 1) improvement in quality of life, 2) reduction of psychologic symptoms, 3) improvement in coping responses, and 4) a reduction in pain. To the authors' knowledge, a few studies published to date have investigated Internet-delivered electronic support groups (ESGs) for cancer. The most sophisticated is the Comprehensive Health Enhancement Support System (CHESS) program, which provides integrated information, referral, and a newsgroup-based social support program. However, to the authors' knowledge, no studies published to date have examined the impact of a breast carcinoma ESG in a clinical trial.

Methods: Sixty-seven women completed the initial baseline questionnaires, 32 of whom accepted the authors' invitation and began the groups. With regard to geographic location, 49% lived in rural/small towns, 41% lived in medium-sized cities, and 10% lived in large cities. Diagnostic stages of disease were: Stage I, 22%; Stage II, 56%; Stage III, 12%; and other forms, 10%. There were 4 intervention groups, of which 8 participants led by trained Wellness Community (TWC) (a national agency) leaders met for 1.5 hours once a week for 16 weeks. Student t tests for paired outcome data were computed using baseline and postgroup scores.

Results: The results of the current study indicated that breast carcinoma patients significantly reduced depression (Center for Epidemiologic Studies-Depression [CES-D] scale) and Reactions to Pain. They also demonstrated a trend toward increases on The Posttraumatic Growth Inventory (PTGI) in two subscales: New Possibilities and Spirituality. Counterintuitively, breast carcinoma patients appeared to demonstrate an increase in emotional suppression. Postinterview results indicated that approximately 67% of patients found the group to be beneficial. Those who withdrew from the groups (20%) demonstrated low scores in their ability to contain anxiety and appeared to be more likely to suppress their thoughts and feelings regarding their illness.

Conclusions: The findings of the current study are encouraging, particularly because it was conducted through TWC, a national agency willing to make this type of intervention readily available at no cost. A limitation of the current study was the lack of randomization and a control group comparison. Although the authors were not able to demonstrate effectiveness without the addition of a control condition, the analysis of pregroup and postgroup outcomes suggests that a randomized trial is worthwhile. Women with a devastating disease will join and commit themselves to an online support group. In addition, because a large percentage of these women were from rural locations, this type of intervention may hold promise for those who have limited access to support groups.