Decision-making in localized prostate cancer: lessons learned from an online support group

Abstract

Objective: • To investigate patient-to-patient communication with regard to decision-making in localized prostate cancer; as most of it is done in private, online support groups are a unique means for this task.

Patients and methods: • Over a 32-month period, we screened 501 threads in the largest German online support group for prostate cancer. • Threads started by questioners newly diagnosed with localized prostate cancer and stating decision-making as the key topic were included; in all, 82 (16.4%) threads met these criteria. • Two independent investigators characterized every thread following a standardized protocol. • Fisher's exact test and Mann-Whitney U-test were applied for group analyses. A complementary qualitative linguistic approach was chosen.

Results: • Threads were most commonly started to ask for therapy recommendations (66%), information on the course of treatment (46%) and emotional support (46%). • Answers consisted of treatment recommendations (40%), emotional support (37%) and personal experiences (28%). • A second opinion on the biopsy cores (51%) and additional imaging (40%) were common suggestions. • The rate of advice for radical prostatectomy (RP) vs radiotherapy was 67 vs 82%. Thus, surgery was less recommended in our sample (P = 0.01); 75% of the men with an initial therapeutic preference were finally confirmed herein. • Linguistic analysis showed that posters frequently use a tentative language style and that common language is avoided.

Conclusions: • Patients readily receive information, advice and emotional support as part of an online support group. • The scientific evaluation of an online support group is a complementary way of getting to know our patients' needs and worries. • Patient-physician contact can benefit from this knowledge.