Urologists' Estimation of Online Support Group Utilization Behavior of Their Patients With Newly Diagnosed Nonmetastatic Prostate Cancer in Germany: Predefined Secondary Analysis of a Randomized Controlled Trial

Abstract

Background: Due to its high incidence, prostate cancer (PC) imposes a burden on Western societies. Individualized treatment decision for nonmetastatic PC (eg, surgery, radiation, focal therapy, active surveillance, watchful waiting) is challenging. The range of options might make affected persons seek peer-to-peer counseling. Besides traditional face-to-face support groups (F2FGs), online support groups (OSGs) became important, especially during COVID-19.

Objective: This study aims to investigate utilization behavior and physician advice concerning F2FGs and OSGs for patients with newly diagnosed PC. We hypothesized greater importance of OSGs to support treatment decisions. We assumed that this form of peer-to-peer support is underestimated by the treating physicians. We also considered the effects of the COVID-19 pandemic.

Methods: This was a secondary analysis of data from a randomized controlled trial comparing an online decision aid versus a printed brochure for patients with nonmetastatic PC. We investigated 687 patients from 116 urological practices throughout Germany before primary treatment. Of these, 308 were included before and 379 during the COVID-19 pandemic. At the 1-year follow-up visit, patients filled an online questionnaire about their use of traditional or online self-help, including consultation behaviors or attitudes concerning initial treatment decisions. We measured secondary outcomes with validated questionnaires such as Distress Thermometer and the Patient Health Questionnaire-4 items to assess distress, anxiety, and depression. Physicians were asked in a paper-based questionnaire whether patients had accessed peer-to-peer support. Group comparisons were made using chi-square or McNemar tests for nominal variables and 2-sided t tests for ordinally scaled data.

Results: Before COVID-19, 2.3% (7/308) of the patients attended an F2FG versus none thereafter. The frequency of OSG use did not change significantly: OSGs were used by 24.7% (76/308) and 23.5% (89/308) of the patients before and during COVID-19, respectively. OSG users had higher levels of anxiety and depression; 38% (46/121) reported OSG as helpful for decision-making. Although 4% (19/477) of OSG nonusers regretted treatment decisions, only 0.7% (1/153) of OSG users did (P=.03). More users than nonusers reported that OSGs were mentioned by physicians (P<.001). Patients and physicians agreed that F2FGs and OSGs were not mentioned in conversations or visited by patients. For 86% (6/7) of the patients, the physician was not aware of F2FG attendance. Physicians underestimated OSG usage by 2.6% (18/687) versus 24% (165/687) of actual use (P<.001).

Conclusions: Physicians are more aware of F2FGs than OSGs. Before COVID-19, F2FGs played a minor role. One out of 4 patients used OSGs. One-third considered them helpful for treatment decision-making. OSG use rarely affects the final treatment decision. Urologists significantly underestimate OSG use by their patients. Peer-to-peer support is more likely to be received by patients with anxiety and depression. Comparative interventional trials are needed to recommend peer-to-peer interventions for suitable patients.

Trial registration: German Clinical Trials Register DRKS-ID DRKS00014627; https://drks.de/search/en/trial/DRKS00014627.

Keywords: decision aid; health services research; online support; peer support; prostate cancer; randomized controlled trial.

Figure 1

CONSORT (Consolidated Standards of Reporting Trials) flow diagram of the underlying randomized controlled trial. EvEnt-PCA: Evaluation of a patient-oriented decision aid and the German health care situation in nonmetastatic prostate cancer.