Online decision aid for patients with prostate cancer evaluated by 11 290 patients and 91 urologists in Germany.

OBJECTIVE: To evaluate the nationwide online decision aid 'Entscheidungshilfe Prostatakrebs' (established in 2016, >11.000 users and 60 new users/week) for patients with non-metastatic prostate cancer (PCa), from the perspective of patients and urologists. PATIENTS AND METHODS: To provide personalised information, the tool collects most of the International Consortium for Health Outcomes Measurement standard set, personal preferences, psychological features, and a validated rating of the tool. To evaluate urologists' opinions, we developed a structured two-page questionnaire. All data were collected anonymously. RESULTS: From June 2016 to December 2020, 11 290 patients used the PCa decision aid. Their median (interquartile range [IQR]) age was 67 (61-72) years. The median (IQR) time from initial diagnosis to using the tool was 4 (3-7) weeks. In all, 87.7% of users reported high satisfaction. In a multivariable model, predictors for considering observation were higher knowledge, using the decision aid alone, lower oncological risk, normal erectile function, and respective personal preferences. Of 194 urologists, 91 (47%) had implemented the decision aid in their clinical practice. The urologists' mean (SD) satisfaction score (1 'very good'; 6 'unsatisfactory') with it was 1.45 (0.55), and 92% recommended it. Half of the urologists reported time savings. CONCLUSION: Patients and urologists report a very high level of acceptance and satisfaction with this online tool. It offers advantages in shared decision-making and time efficiency. The usage of the decision aid might improve the adoption of active surveillance and watchful waiting when indicated.

Enhancing Human Papillomavirus Vaccination Rates through Better Knowledge? Insights from a Survey among German Medical Students.

INTRODUCTION: Vaccination against human papillomavirus (HPV) significantly reduces the risk for malignant diseases like cervix, anal, or penile cancer. However, although vaccination rates are rising, they are still too low mirroring a lack of disease awareness in the community. This study aims to evaluate knowledge about HPV vaccination as well as the vaccination rate among German medical students. MATERIAL AND METHODS: Medical students were surveyed during a German medical students' sports event. The self-designed survey on HPV vaccination consisted of 24 items. The data collection was anonymous. RESULTS: Among 974 participating medical students 64.9% (632) were women, 335 (34.4%) were male and 7 (0.7%) were nonbinary. Mean age was 23.1 ± 2.7 (± standard deviation; range 18-35) years. Respondents had studied mean 6.6 ± 3.3 (1-16) semesters and 39.4% (383) had completed medical education in urology. 613 (64%) respondents reported that HPV had been discussed during their studies. 7.6% (74) had never heard of HPV. In a multivariate model female gender, the knowledge about HPV, and having worked on the topic were significantly associated with being HPV-vaccinated. Older students were vaccinated less likely. CONCLUSIONS: Better knowledge and having worked on the topic of HPV were associated with a higher vaccination rate. However, even in this highly selected group the knowledge about HPV vaccination was low. Consequently, more information and awareness campaigns on HPV vaccination are needed in Germany to increase vaccination rates.

Men's Access to Outpatient Psychosocial Cancer Counseling.

BACKGROUND: Men make use of outpatient cancer counseling less commonly than women, even when they stand to benefit from it. METHODS: In a cluster-randomized trial (registered under DRKS00032181), we studied whether measures on multiple levels (information for referring physicians, public information, structural changes, offerings specifically for male patients) over a period of 12 months would be able to increase the percentage of men among patients seeking outpatient cancer counseling (primary endpoint, initial contact; secondary endpoint, all contacts). The intervention effect was quantified by the fitting of generalized linear mixed models to obtain an odds ratio, which was adjusted for cluster structure and for the percentages of first contacts and of all contacts during the 12 months before the start of the intervention. RESULTS: In 12 regions of Germany (6 each in the intervention arm and the control arm), 11 986 people had first contacts with outpatient cancer counseling, 6004 of them during the intervention phase. The percentage accounted for by men was 30.7% in the intervention arm and 25.7% in the control arm, corresponding to a statistically insignificant model-based adjusted odds ratio (OR) of 1.2 (95% confidence interval [1.0; 1.4], p = 0.08) for the primary endpoint. There were a total of 51 842 counseling sessions (both initial contacts and subsequent contacts), 26 651 of them in the intervention phase. The percentage of these that was accounted for by men was 27.6% in the intervention arm and 22.2% in the control arm; the adjusted OR for this secondary endpoint was 1.3 [1.1; 1.6], p = 0.01). CONCLUSION: The targeted implementation of malespecific measures on multiple levels can increase, by a small amount, the percentage of men among persons seeking outpatient cancer counseling.

Neurocognitive effects of androgen deprivation therapy and new hormonal agents in a sample of patients with metastatic prostate cancer.

INTRODUCTION: Although the growing treatment landscape for metastatic prostate cancer (mPC) has revealed new opportunities, it has also provided challenges, such as undesirable side effects. The aim of the present study was to provide further data on domain-specific cognitive impairments in mPC patients with androgen deprivation therapy (ADT) and new hormonal agents. METHODS: Fifty-eight patients (71 ± 8 years) with mPC were investigated using a cross-sectional design. All patients had received some form of ADT (93% had received luteinizing hormone-releasing hormone (LHRH) analogs/antagonists), 66% had received chemotherapy, and 84% had received anti-resorptive therapy. We evaluated learning and memory, processing speed, and executive functions, as recommended by the International Cognition and Cancer Task Force, to determine neurocognitive deficits. RESULTS: Patients treated with ADT scored significantly lower on all neurocognitive tests and showed significantly more neurocognitive deficits (38-62%) than age-adjusted reference samples (16%, p < 0.05). Cognitive deficits were mild in most cases and predominantly affected visuomotor processing speed (48%). Moderate and severe deficits were found in 11% and 5% of patients, respectively, with word fluency as the predominant deficit (23%). No associations were found between the type or duration of treatment and the severity of cognitive deficits. CONCLUSIONS: Treatment of mPC with ADT is correlated with neurocognitive deficits in several cognitive domains. Language skills and processing speed were most frequently impaired. However, a consistent pattern of cognitive impairment was not identified. Neurocognitive deficits should be considered in phase III and IV trials. TRIAL REGISTRATION: The study was registered in the German Clinical Trials Registry (DRKS00017727).

Couples coping with advanced prostate cancer: an explorative study on decision-making preferences, self-efficacy and fear of progression.

PURPOSE: To date, there is a lack of understanding of the treatment/disease-related health behaviors of patients with advanced prostate cancer (PCa) and their spouses. The purpose of this study was to explore the characteristics of treatment decision-making (DM) preferences, general self-efficacy (SE) and fear of progression (FoP) among couples coping with advanced PCa. METHODS: In this explorative study, 96 patients with advanced PCa and their spouses answered the multiple choice version of the Control Preferences Scale (CPS, regarding DM), General Self-Efficacy Short Scale (ASKU, regarding SE), and short form of the Fear of Progression Questionnaire (FoP-Q-SF, regarding FoP). Corresponding questionnaires were employed for patients' spouses were evaluated, and correlations were subsequently drawn. RESULTS: More than half of the patients (61%) and spouses (62%) preferred active DM. Collaborative DM was preferred by 25% of patients and 32% of spouses, and 14% of patients and 5% of spouses preferred passive DM. FoP was significantly higher among spouses than among patients (p < 0.001). The difference in SE was not significant between patients and spouses (p = 0.064). FoP and SE negatively correlated among patients (r = - 0.42; p < 0.001) and among spouses (r = - 0.46; p < 0.001). DM preference did not correlate with SE and FoP. CONCLUSIONS: High FoP and low general SE are related among both patients with advanced PCa and their spouses. FoP seems to be higher among female spouses than among patients. Couples seem to be largely in agreement when it comes to playing an active role in treatment DM. TRIAL REGISTRATION: www.germanctr.de , number DRKS 00013045.

Between hope and reality: How oncology physicians and information providers of a cancer information service manage patients' expectations for and experiences with immunotherapies.

OBJECTIVES: Immune checkpoint inhibitors have established themselves as a further therapeutic pillar in the treatment of various types of cancer. This can create challenges and possible misunderstandings for patients. The aim of this study was to assess the experiences of physicians and information providers in their interactions with patients about immunotherapy. METHODS: The study design was exploratory with qualitative research methodology. We performed focus groups with 8 oncology physicians and 9 information providers of a cancer information service. RESULTS: In the coding process, five focal points could be identified: (1) image of immunotherapy, (2) presentation of immunotherapy in the media, (3) hope, (4) creation of an information base, and (5) lessons learned and future directions. Physicians and information providers report that immunotherapy has a very positive image among patients. This seems to be due to the presentation of immunotherapy in the media and the positive associations of people with terms such as the immune system and the body's own defense. CONCLUSIONS: In contrast to chemotherapy, patients are at risk of underestimating the early symptoms of serious side effects of immunotherapy. From the point of view of physicians, the exaggerated expectations of patients regarding the possibilities of immunotherapy are often not met. The challenge for practitioners is to consider patients' expectations to provide balanced information and recommendations. PRACTICAL IMPLICATIONS: Communication skills training and up-to-date information tools should improve physician-patient communication.

Better Knowledge about Testicular Cancer Might Improve the Rate of Testicular (Self-)Examination: A Survey among 1,025 Medical Students in Germany.

INTRODUCTION: Testicular cancer (TC) is the most common malignancy among young men. Public awareness of the disease and testicular (self-)examination (TSE) is low. This study aims to evaluate the awareness of German medical students on TC. METHODS: A 25-item questionnaire on TC was handed out during a medical student's football tournament in Germany. Data collection was anonymous. RESULTS: Questionnaires were answered by 573 (56%) female and 452 (44%) male medical students. Most students had gaps in their knowledge about TC: 483 (48%) students knew, the most common age at which TC occurs, and 413 (41%) knew its cure rate. Having dealt with TC during their studies was significantly associated with a better knowledge about TC (p = 0.001). These students also had a higher rate of TSE among male students (66% vs. 52%, p = 0.002). This also applies to examining the partner's testicles by female students (25% vs. 13%, p < 0.001). CONCLUSION: Even in a positively selected collective like medical students, the knowledge about TC is low. Better knowledge might improve the chance of detecting the disease early. Therefore, our joint project of urologists, patients, and supporters called Prevention and Advocacy of Testicular Education e.V. (PATE) works on rising public TC awareness in Germany.

Health-related quality of life of advanced prostate cancer patients and spouses: results from actor-partner interdependence models.

BACKGROUND: Patients with prostate cancer (PC) and their spouses are confronted with several treatment-related and psychosocial challenges that can reduce their health-related quality of life (HRQoL). Patients with advanced PC (aPC) and their spouses are at highest risk for psychological distress and show lower HRQoL compared with couples in other phases. The aim of this study was to investigate the psychological interdependencies between HRQoL and anxiety, fear of progression (FoP), and depression in patients with aPC and their spouses. METHODS: Ninety-six heterosexual couples with aPC participated in this cross-sectional study. Patients and spouses provided information about anxiety and depression (Patient Health Questionnaire-4), fear of progression (short form of the Fear of Progression Questionnaire), and HRQoL (EORTC QoL-C30, version 3). Psychological interdependencies were analyzed with various actor-partner interdependence models using structural equation modeling. RESULTS: Anxiety, FoP, and depression were significant predictors of HRQoL for patients with aPC and their spouses (actor effects). Spouses' anxiety and FoP were negatively associated with patients' HRQoL (partner effects), showing that patients' HRQoL is associated with their own and their spouses' anxiety and FoP. No partner effect was revealed between depression and HRQoL in the patients or spouses. CONCLUSIONS: The resulted partner effects between spouses and patients underline the importance of considering HRQoL in patients with aPC from a dyadic perspective. It is important that physicians explore patients' and spouses' needs and psychological burden to offer support and access to psycho-oncological services. Future studies are needed to investigate the effects of suitable interventions on spouses' anxiety and FoP.

The Treatment Decision-making Preferences of Patients with Prostate Cancer Should Be Recorded in Research and Clinical Routine: a Pooled Analysis of Four Survey Studies with 7169 Patients.

Different patients want to take different roles in the treatment decision-making process; these roles can be classified as passive, collaborative, and active. The aim of this study was to investigate the correlation between decision-making preferences among patients with prostate cancer and personal, disease-related, and structural factors. In four survey studies, we asked 7169 prostate cancer patients about their decision-making preferences using the Control Preferences Scale (CPS) and collected clinical, psychological, and quality-of-life measures. Most patients (62.2%) preferred collaborative decision-making, while 2322 (32.4%) preferred an active role, and only 391 (5.5%) preferred a passive role. Age (p < 0.001), data collection mode (p < 0.001), peer-to-peer support (p = 0.018), treatment status (p < 0.001), performed or planned radical prostatectomy (p < 0.001), metastatic disease (p = 0.001), and quality of life (p < 0.001) showed significant associations with patients' preferred decision-making roles. Oncologic risk group, anxiety, and depression were not significant in the model. In particular, younger prostate cancer patients with higher quality of life completing an online survey want to play a more active role in treatment decision-making. Before treatment has started, patients tend to prefer collaborative decision-making. Few prostate cancer patients in Germany prefer a passive role. These patients are mostly older patients, patients with a metastatic disease, and patients who have opted for prostatectomy. Whether this finding reflects a generational effect or a tendency by age group and disease phase should be investigated. Further research is also needed to describe the causalities of these relationships. The CPS offers valuable information for personal counselling and should be applied in clinical routine. In a large group of patients with prostate cancer, we found that there is a strong desire for joint decision-making with the physician before the actual treatment. Especially younger men, men with active online behaviour, and men with a high quality of life want to be actively involved in therapy decision-making processes.

Couples coping with advanced prostate cancer: An explorative study on treatment decision making, mental deterioration, partnership, and psychological burden.

OBJECTIVES: The aim of this study was to evaluate the role of spouses and the relevance of quality of life (QoL) and life expectancy (LE) in the treatment decision-making process of patients with advanced prostate cancer (CaP). We also addressed the role of possible mental deterioration, partnership quality, QoL, distress, anxiety, and depression in patients and their spouses. METHODS AND MATERIAL: This was a cross-sectional non-interventional explorative study. We administered questionnaires to 96 patients with advanced CaPand their spouses. Both patients and their spouses were asked about the influence of the spouses on treatment decision making, if they prefer quality of life or life expectancy as main goal of treatment and the perceived deterioration of the patients' mental abilities. Additional questionnaires were used to assess medical history, partnership, global quality of life, distress, depression, and anxiety. We performed statistical tests to compare patients with spouses and correlations to detect associations between variables. RESULTS: The spouses (65 ± 9 years) were significantly younger than the patients (69 ± 9 years). Ninety-five percent of the patients and 91% of the spouses reported that the spouses were involved in making treatment decisions. There was a high similarity within couples with regard to their preference for QoL or LE during treatment. Between couples, this preference differed markedly. Emotional control and motivation were the areas most commonly reported to have deteriorated among patients' mental abilities. The quality of the partnership was rated as being higher than average by both partners. Among the spouses, the quality of partnership correlated significantly with the preference for LE with regard to treatment decision making. Patients and spouses reported high psychological burdens in all areas, with higher levels of distress and anxiety in spouses (P< 0.01). Reduced quality of life and greater distress, depression, and anxiety were significantly correlated with the amount of deterioration of the patients' mental abilities. CONCLUSIONS: Spouses of patients with advanced CaP seem to respond to different aspects of the disease by adjusting both their involvement in treatment decision making and their preferred goal of treatment. Due to mental deterioration in the patients and pronounced anxiety in their spouses, we suggest that it is important for the attending physician to provide detailed information and support to both partners. Overall, the high-stress situation seems to affect both partners to similar degrees.

[Specific Contribution of Psychosocial Cancer Counselling Centers - Perspectives of the Person Seeking Advice and the Referring Professional]. / Zum spezifischen Versorgungsbeitrag psychosozialer Krebsberatungsstellen ­ Sichtweisen der Ratsuchenden und Zuweisenden.

AIM: The aim of the study is to look at the specific contribution of outpatient cancer counselling centers (OCCC) from the perspective of both the person seeking advice and the referring health care professionals. METHODS: Qualitative design by means of guideline-based face-to-face interviews with cancer patients/relatives and individual telephone interviews with referring health care professionals. RESULTS: A total of 43 persons seeking advice and 30 referring health care professionals were interviewed. With regard to the contents of counselling, psycho-oncological support and help for self-help in combination with social-legal information about additional support services are perceived as central features. In the group of referring physicians, however, there seems to be some uncertainty about what OCCCs (can) provide. CONCLUSION: On the one hand, the results point to a specific core of the services offered by OCCCs, and on the other hand to ambiguous perceptions on the part of the respondents. They may contribute to further sharpening the profile of OCCC and to clarifying their place in the health care system.

Patient expectations are better for immunotherapy than traditional chemotherapy for cancer.

PURPOSE: The main aim of the study was to explore the expectations and knowledge of advanced-stage cancer patients about immunotherapy. METHODS: This mixed methods study included 53 cancer patients on immune checkpoint inhibitors (ICIs), 55 cancer patients undergoing chemotherapy (CT), and 53 non-cancer patients. Participants' expectations about ICIs and CT were compared. Additional qualitative data were derived from semi-structured interviews. RESULTS: Among patients who did not receive ICIs, 63 (58%) had never heard of ICIs and 94 (87%) had large gaps in their knowledge of ICIs. Among ICI patients, 33 (62%) simply described ICIs without errors. ICI perception was positive, regardless of whether respondents received or had heard of ICIs, which became particularly evident when compared to CT. ICIs were rated as more promising, and all adverse effects were expected to be significantly lower than those of CT. Knowledge about ICIs was also limited in the interviewed ICI patients. Some patients reported adverse effects of ICIs that were mostly mild and well-tolerated or easily treated. CONCLUSIONS: The lack of understanding of ICIs should be improved by activities to increase the knowledge of ICI patients and the general population. In contrast to CT, ICIs invoked fewer negative associations with efficacy and toxicity. Therefore, attention should be paid to risk awareness when educating patients. (Clinical trial registration number: DRKS00011868) Trial Registration: German clinical trials register, www.germanctr.de , number DRKS00011868.

Online peer-to-peer support for persons affected by prostate cancer: A systematic review.

OBJECTIVE: Little is known about online peer-to-peer support for persons affected by prostate cancer (PC) and its potential effects. METHODS: Our systematic review of the literature followed the PRISMA statement and revealed a total of 2372 records. Finally, 24 studies about online peer-to-peer support for persons affected by PC were selected for qualitative synthesis. Due to a lack of suitable quantitative results, the intended meta-analysis was not possible. RESULTS: Available studies were almost exclusively descriptive. Only one randomized controlled trial (RCT) included 40 PC survivors. In this study, quality of life improved in online support group (OSG) users and decreased in the control group. However, it returned to baseline in both groups after eight weeks. As a summary across all studies, OSGs play a significant role in patients' treatment decision-making and for the social environment of PC patients. Information exchange in OSGs was predominant, but emotional and supportive content also had an important function. CONCLUSION: Due to the inconsistent methodology and the lack of reporting standards, a synthesis from the available studies is very limited. PRACTICE IMPLICATIONS: Population-based studies should focus on the actual use of OSGs. The effectiveness of OSGs needs to be investigated in RCTs.

[Surveys as Quality Management Measures in Psychosocial Cancer Counselling Centers]. / Nutzerbefragung als Qualitätssicherungsmaßnahme in psychosozialen Krebsberatungsstellen.

AIM: The aim of the present survey was to describe and evaluate experiences of German psychosocial cancer counselling centers with user surveys as a quality management measure. METHODS: Representatives of various psychosocial cancer counselling centers were asked to prepare an experience report on user surveys. Nine field reports were presented and discussed in summary by the working group "Cancer Counselling Centers" of the Working Group Psychooncology of the German Cancer Society (PSO). Special attention was paid to the short questionnaire KBS-N (Cancer Counselling Centre Questionnaire) recommended by the working group. RESULTS: All psychosocial cancer counselling centers reported positive experiences with user surveys, which, however, represent an effort in terms of personnel and logistics. In addition to the KBS-N, more detailed questionnaires were also used. The surveys were conducted either continuously or on a random basis over a limited period of time. Those seeking advice were usually asked at a defined time directly after the initial interviews or after the end of the counselling sequence. The response rate was higher (85-95%) when the questionnaire was handed out personally after the initial consultation than for postal delivery and return (47-89%). All counselling centers reported positive feedback on the counselling services provided. Isolated points of criticism were related in particular to organizational framework conditions. CONCLUSION: After weighing up the costs and benefits, an active follow-up survey of those seeking advice using the short questionnaire KBS-N appears to be a practicable quality assurance measure, at least over a limited period of time. More detailed user surveys require more effort and are therefore more suitable for use in research that go beyond quality assurance.

Decision Regret after Radical Prostatectomy does Not Depend on Surgical Approach: 6-Year Followup of a Large German Cohort Undergoing Routine Care.

PURPOSE: Numerous studies have compared the outcomes of open and robot-assisted radical prostatectomy but to our knowledge only 1 study has focused on patient satisfaction and regret. We evaluated intermediate term decision regret after open and robot-assisted radical prostatectomy. MATERIALS AND METHODS: The HAROW (Hormonal Therapy, Active Surveillance, Radiation, Operation, Watchful Waiting) study analyzed localized prostate cancer treatments (T2c N0 M0 or less) in Germany from 2008 to 2013. We collected intermediate term followup data on 1,260 patients after retropubic open or robot-assisted radical prostatectomy. RESULTS: The response rate was 76.8% (936 of 1,218 cases). A total of 404 patients underwent robot-assisted radical prostatectomy and 532 underwent open radical prostatectomy. Patients treated with the robot-assisted procedure showed more self-determined behavior. They reported an active role in surgical decision making and the surgical approach (robot-assisted radical vs open prostatectomy 39% vs 24% and 52% vs 18%, respectively, each p <0.001). Patients treated with the robot-assisted procedure more often participated actively in selecting the treating hospital (25% vs 11%), used the Internet often (87% vs 72%) and traveled an increased distance (63 vs 42 km, all p <0.001). Overall decision regret was low with a mean ± SD score of 14 ± 19 on a scale of 0-no regret to 100-high regret. Multivariate analysis showed that erectile function (OR 3.2), urinary continence (OR 1.8), freedom from recurrence (OR 1.6), an active decision making role (OR 2.2) and shorter followup (OR 0.9 per year) predicted low decision regret (score less than 15). CONCLUSIONS: Intermediate term functional and oncologic outcomes as well as autonomous decision making and followup time influenced decision regret after radical prostatectomy. The surgical approach was not associated with intermediate term decision regret.

[Online support groups for patients with prostate cancer]. / Internetforen für Patienten mit Prostatakrebs.

BACKGROUND: Online support groups are discussion boards on the internet in which users exchange experience, advice and information. The Bundesverband Prostatakrebs Selbsthilfe e. V. (BPS) operates the largest German-language internet forum for prostate cancer patients. MATERIALS AND METHODS: Several aspects of the BPS Forum were examined: content analysis, language use and interaction, influence on treatment decisions, comparison with conventional face-to-face support groups, and use by relatives and friends. RESULTS: The online support group is dominated by a tentative style of communication with reserved language features. In addition to the exchange of information, emotional support seems to be very welcome to many users and represents an essential part of the exchange. The use of the internet forum leads to a change in the initial treatment decision in 29 % of patients. In comparison with the general population, rates of patients with anxiety and depression were two to three times as high among the users. Compared with the patients themselves, family members in particular had higher values for anxiety and depression and described a higher rate of metastatic diseases in the patients known to them. Users of the online support group were younger, had a higher educational level and a higher income than participants in conventional face-to-face support groups. CONCLUSIONS: Online support groups are rated positively by their users and contribute to the acquisition of information and emotional support. They probably have a significant influence on the primary treatment decision and thus actively shape the reality of care for prostate cancer patients.

Online support groups offer low-threshold backing for family and friends of patients with prostate cancer.

A prostate cancer diagnosis affects not only the patients but also their family and friends. We performed a secondary analysis of a survey of users of the largest German online support group (OSG) for prostate cancer. We collected socio-demographic, psychological and disease-related data over a three-month period in 2013. Among 769 participants with a complete questionnaire, 686 were patients, and 83 were family members and friends of other patients. The family and friends group comprised 33% spouses, 31% children and 36% people with other relationships to the patient ("others"). Compared to the patient group, the family and friends group showed higher scores for anxiety and depression and described a higher rate of metastatic disease in the patients with whom they had a relationship. The children of patients showed the highest psychological burden based on their scores for anxiety and depression. Only 7% of spouses and none of the children attended face-to-face support groups, compared to 70% of people in the "others" group. OSGs offer low-threshold support for family members and friends; specifically, they meet the needs of spouses and children who do not attend face-to-face support groups. To improve counselling efforts, physicians should be aware of this online resource.

Face-to-face vs. online peer support groups for prostate cancer: A cross-sectional comparison study.

BACKGROUND: As social media are evolving rapidly online support groups (OSG) are becoming increasingly important for patients. Therefore, the aim of our study was to compare the users of traditional face-to-face support groups and OSG. PATIENTS AND METHODS: We performed a cross-sectional comparison study of all regional face-to-face support groups and the largest OSG in Germany. By applying validated instruments, the survey covered sociodemographic and disease-related information, decision-making habits, psychological aspects, and quality of life. RESULTS: We analyzed the complete data of 955 patients visiting face-to-face support groups and 686 patients using OSG. Patients using OSG were 6 years younger (65.3 vs. 71.5 years; p < 0.001), had higher education levels (47 vs. 21%; p < 0.001), and had higher income. Patients using OSG reported a higher share of metastatic disease (17 vs. 12%; p < 0.001). Patients using OSG reported greater distress. There were no significant differences in anxiety, depression, and global quality of life. In the face-to-face support groups, patient ratings were better for exchanging information, gaining recognition, and caring for others. Patients using OSG demanded a more active role in the treatment decision-making process (58 vs. 33%; p < 0.001) and changed their initial treatment decision more frequently (29 vs. 25%; p < 0.001). CONCLUSIONS: Both modalities of peer support received very positive ratings by their users and have significant impact on treatment decision-making. IMPLICATIONS FOR CANCER SURVIVORS: Older patients might benefit more from the continuous social support in face-to-face support groups. OSG offer low-threshold advice for acute problems to younger and better educated patients with high distress. TRIAL REGISTRATION: www.germanctr.de , number DRKS00005086.