Electronic support groups for breast carcinoma
Authors: Lieberman Morton A. , Golant Mitch , Giese‐Davis Janine , Winzlenberg Andy , Benjamin Harold , Humphreys Keith , Kronenwetter Carol , Russo Stefani , Spiegel David 
Published: February 2003

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. Cancer 2003;97:920–5. © 2003 American Cancer Society.

DOI 10.1002/cncr.11145