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

BackgroundDue 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 ma...

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Main Authors: Philipp Karschuck, Christer Groeben, Rainer Koch, Tanja Krones, Andreas Neisius, Sven von Ahn, Christian Peter Klopf, Steffen Weikert, Michael Siebels, Nicolas Haseke, Christian Weissflog, Martin Baunacke, Christian Thomas, Peter Liske, Georgi Tosev, Thomas Benusch, Martin Schostak, Joachim Stein, Philipp Spiegelhalder, Andreas Ihrig, Johannes Huber
Format: Article
Language:English
Published: JMIR Publications 2025-04-01
Series:Journal of Medical Internet Research
Online Access:https://www.jmir.org/2025/1/e56092
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author Philipp Karschuck
Christer Groeben
Rainer Koch
Tanja Krones
Andreas Neisius
Sven von Ahn
Christian Peter Klopf
Steffen Weikert
Michael Siebels
Nicolas Haseke
Christian Weissflog
Martin Baunacke
Christian Thomas
Peter Liske
Georgi Tosev
Thomas Benusch
Martin Schostak
Joachim Stein
Philipp Spiegelhalder
Andreas Ihrig
Johannes Huber
author_facet Philipp Karschuck
Christer Groeben
Rainer Koch
Tanja Krones
Andreas Neisius
Sven von Ahn
Christian Peter Klopf
Steffen Weikert
Michael Siebels
Nicolas Haseke
Christian Weissflog
Martin Baunacke
Christian Thomas
Peter Liske
Georgi Tosev
Thomas Benusch
Martin Schostak
Joachim Stein
Philipp Spiegelhalder
Andreas Ihrig
Johannes Huber
author_sort Philipp Karschuck
collection DOAJ
description BackgroundDue 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. ObjectiveThis 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. MethodsThis 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. ResultsBefore 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). ConclusionsPhysicians 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 RegistrationGerman Clinical Trials Register DRKS-ID DRKS00014627; https://drks.de/search/en/trial/DRKS00014627
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spelling doaj-art-a7a425374fd449b2afbb3f2344cd8fb92025-08-20T01:54:40ZengJMIR PublicationsJournal of Medical Internet Research1438-88712025-04-0127e5609210.2196/56092Urologists’ 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 TrialPhilipp Karschuckhttps://orcid.org/0000-0002-3487-4553Christer Groebenhttps://orcid.org/0000-0002-1769-0402Rainer Kochhttps://orcid.org/0000-0002-3024-9072Tanja Kroneshttps://orcid.org/0000-0001-9880-0564Andreas Neisiushttps://orcid.org/0000-0002-2697-6306Sven von Ahnhttps://orcid.org/0009-0001-7726-8561Christian Peter Klopfhttps://orcid.org/0009-0003-2567-7106Steffen Weikerthttps://orcid.org/0009-0001-5808-0766Michael Siebelshttps://orcid.org/0009-0005-3213-7989Nicolas Hasekehttps://orcid.org/0009-0001-7481-3042Christian Weissfloghttps://orcid.org/0009-0007-4921-0155Martin Baunackehttps://orcid.org/0000-0002-5601-7587Christian Thomashttps://orcid.org/0000-0001-6511-965XPeter Liskehttps://orcid.org/0009-0006-0788-9641Georgi Tosevhttps://orcid.org/0000-0001-7604-3742Thomas Benuschhttps://orcid.org/0009-0001-4268-8435Martin Schostakhttps://orcid.org/0000-0002-8717-2096Joachim Steinhttps://orcid.org/0009-0001-8597-1521Philipp Spiegelhalderhttps://orcid.org/0000-0001-5181-2832Andreas Ihrighttps://orcid.org/0000-0002-8497-9193Johannes Huberhttps://orcid.org/0000-0001-7243-8958 BackgroundDue 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. ObjectiveThis 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. MethodsThis 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. ResultsBefore 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). ConclusionsPhysicians 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 RegistrationGerman Clinical Trials Register DRKS-ID DRKS00014627; https://drks.de/search/en/trial/DRKS00014627https://www.jmir.org/2025/1/e56092
spellingShingle Philipp Karschuck
Christer Groeben
Rainer Koch
Tanja Krones
Andreas Neisius
Sven von Ahn
Christian Peter Klopf
Steffen Weikert
Michael Siebels
Nicolas Haseke
Christian Weissflog
Martin Baunacke
Christian Thomas
Peter Liske
Georgi Tosev
Thomas Benusch
Martin Schostak
Joachim Stein
Philipp Spiegelhalder
Andreas Ihrig
Johannes Huber
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
Journal of Medical Internet Research
title 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
title_full 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
title_fullStr 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
title_full_unstemmed 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
title_short 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
title_sort 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
url https://www.jmir.org/2025/1/e56092
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