Participation in a patient support group increases prostate cancer patient knowledge

A newly published study from a group of German researchers examined the degree to which participation in patient support group activities increased prostate cancer patients’ health literacy and, specifically, their prostate cancer‐specific and non‐cancer‐specific knowledge about health care.

Unlike a lot of studies in this area, which often enroll only small numbers of patients, this study by Haack et al., at Hannover and Hamburg in Germany, enrolled nearly 600 participants in total, so the results should be pretty reliable.

Here are the basic data from the study:

  • There were 576 participants in total
    • 441 were prostate cancer support group members (Group A)
    • 135 were prostate cancer patients who had not participated in a support group (Group B)
  • Compared to the patients in Group B, the patients in Group A had:
    • Greater knowledge about prostate cancer in general (odds ratio [ OR] = 2.2)
    • Heard about specific guidelines related to prostate cancer (OR = 3.7)
    • Actually read one or more guidelines (OR = 5.1)
    • Greater competence regarding navigation of heath services (OR = 1.8)
  • Patients in Group A and Group B had similar levels of knowledge about non-cancer-related health care knowledge.

We should emphasize, of course, that one can become very knowledgeable about prostate cancer and how health care systems work without every actually participating in a patient support group of any type (prostate cancer-specific or otherwise). However, on the other hand, the authors conclude that participation in a prostate cancer-specific support group seems to

provide an important platform for information exchange in the field of [prostate cancer]. The potentially conflicting results on PC knowledge and the application‐skills may arise from the different forms of measurement — knowledge was tested, skills were self‐assessed.

What this study did not test, however, is whether the benefits of participation in “live” prostate cancer support groups that meet on a regular basis was any more beneficial than participation in the various (and evolving) forms of on-line and phone-based support groups, and the degree to which participation in support groups increased the probability that patients would choose forms of management (over time) most suited to their individual needs.

2 Responses

  1. Kristina thanks for the info and help.

    Bill Fogerty

  2. Precisely why I suggested in the AUA/ASTRO/SUO Localized Prostate Cancer guideline that recommending peer support was excellent practice (Statement 68). Having run an UsTOO chapter for almost 9 years now I have seen patients benefit highly by gaining knowledge and experience from others. Their decisions are better and they are more confident making them.

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