THE "NEW" PROSTATE CANCER INFOLINK

Since Prostate Cancer International runs an online support group (OSG) for patients, we were obviously very interested to see a newly published article by a German research group on the effects of OSGs on patients’ decision-making processes.

Huber et al. have reported data from an analysis and survey (carried out in July though October 2013) of men diagnosed with localized prostate cancer who participated on the largest German language, prostate cancer-specific OSG. Their primary objective was to be able to assess the effect of participation OSG on the patients’ final treatment decisions. However, their online survey tool asked a total of 127 questions addressing such factors as sociodemographic and disease-related information, decision-making habits, health-related quality of life, distress, depression, and anxiety.

The abstract of this paper by Huber et al. doesn’t tell us how many patients have participated in this particular OSG. (For The “New” Prostate Cancer InfoLink’s social network this is now > 6,000 individuals.) However, this is what we can learn from the abstract of this particular paper:

• 686 patients diagnosed with localized prostate cancers provided completed questionnaires.
• 200/686 patients (29.2 percent) indicated that they had revised their initial treatment decision after participating in the OSG.
• Compared to those who did not revise their decisions, the patients who did revise their treatment decisions were
  • More likely to have external beam radiation therapy as a first-line treatment (44.5 vs. 36.4 percent, P = 0.048)
  • More likely to elect active surveillance as a first-line management option (10.5 vs. 3.7 percent, P < 0.001)
  • Less like to have radical prostatectomy as a first-line treatment (52.5 vs. 74.9 percent, P < 0.001).
• Three specific factors were independently associated with revision of an initial treatment decision.
  • Engaging in the OSG for a longer time period
  • Demanding a more active role in the decision-making process
  • Participating in a conventional support group

The authors conclude that:

… this phenomenon may affect 17,000 patients with prostate cancer in the United States of America every year. This finding highlights the importance of OSGs for the health care system. The patient׳s desired degree of involvement in decision-making should be routinely clarified to adjust counseling accordingly.

While we have, as yet, made no attempt to assess the impact of The “New” Prostate Cancer InfoLink’s social network on patient decision-making, we have a feeling that we would see similar impact if such an analysis was carried out, although the impact on uptake of initial active surveillance might be a little higher since that has been a focus of Prostate Cancer International for a long period of time.

The question of whether physicians should or shouldn’t be encouraging patients to take advantage of such OSGs is, rather more obviously, a complex one. OSGs should never offer individual patients specific recommendations with respect to their diagnosis or treatment. However, recommendations that patients “look into” or “ask about” forms of treatment other than the ones they may have initially been told about by their physicians can easily be considered to have the power of “recommendations” about treatment. And specialist physicians will clearly not be happy when patients for whom they have recommended treatment X then go somewhere else to get treatment Y, and the initial physician disagrees deeply, on medical grounds, with such a change in the patient’s decision.

Filed under: Diagnosis, Living with Prostate Cancer, Management, Risk, Treatment | Tagged: decision-making, group, online, selection, support, Treatment |