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

Authors :
Huber J
Ihrig A
Peters T
Huber CG
Kessler A
Hadaschik B
Pahernik S
Hohenfellner M
Source :
BJU international [BJU Int] 2011 May; Vol. 107 (10), pp. 1570-5. Date of Electronic Publication: 2010 Nov 24.
Publication Year :
2011

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.<br />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.<br />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.<br />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.<br /> (© 2010 THE AUTHORS. BJU INTERNATIONAL © 2010 BJU INTERNATIONAL.)

Details

Language :
English
ISSN :
1464-410X
Volume :
107
Issue :
10
Database :
MEDLINE
Journal :
BJU international
Publication Type :
Academic Journal
Accession number :
21105988
Full Text :
https://doi.org/10.1111/j.1464-410X.2010.09859.x