Localized Prostate Cancer Patients’ Information in Urology Outpatient Practice—Results of a Nationwide Prospective Study in Germany

Abstract

Purpose: Many studies demonstrate the importance of an empathic communication with prostate cancer patients and show various information needs. Most of the studies are cross sectional. The present analysis aims to 1) provide detailed prospective data on the actual quality of patient information provided by urologists in private practice in Germany; and 2) explore sociodemographic, communicative, and health-and treatment related determinants of the quality of provider-patient-communication. Methods: HAROW is a prospective, observational study designed to collect clinical data and patient reported outcomes of different treatment options (hormonal therapy, active surveillance, radiation, operation, watchful waiting) for newly diagnosed patients with localized prostate cancer under real conditions. At 6-month intervals, general clinical data, patient reported outcomes and patients' assessment of patient-physician-communication are documented. A total of 1893 questionnaires at t 0 (initial diagnosis) and t 1 (six months after diagnosis) were analyzed. A linear regression model was estimated. Results: The mean age of the men was 68.38 years, and most lived with their spouse or partner (94.1%). Most patients were informed about treatment options (t 0 96%, t 1 93.2%), but much fewer received information about self-help groups (t 0 36.4%, t 1 45.8%), rehabilitation (t 0 59.9%, t 1 68%), and second medical opinion (t 0 57.2%, t 1 59.3%). Older men (p = 0.02) and men living alone (p = 0.048) received less information than others. Physician empathy (p = 0.000) and prostatectomy treatment (p = 0.020) were positively associated with receiving more information. Conclusion: There is room for improvement in terms of informing prostate cancer patients about rehabilitation, second medical opinion and self-help groups. Urologists being empathetic share more information with their patients. Some patients receive less information than others, especially older patients living alone.

Slik blir pasienter med prostatakreft mer tilfreds med informasjonen

“…Siden informasjonsbehovet er så individuelt, er det en utfordring å gi den enkelte tilfredsstillende informasjon. Jaeger og medarbeidere konkluderer med at pasienter bør få en basisinformasjon for den aktuelle behandling, og at tilleggsinformasjon bør gis til dem som har behov for det (26). Ifølge Bjertnes og medarbeidere er oppfylte forventninger en signi kant faktor for tilfredshet (27).…”

“…Pasienten må også få realistisk informasjon om risikoen for ereksjonssvikt, og at ereksjonsevnen ikke blir som før. Hvis vi ordlegger oss slik at han får en oppfatning av at alt vil rette seg til slik det var før operasjonen, kan resultatet bli en utilfreds pasient fordi forventninger ikke blir oppfylt (26).…”

An evaluation of support of patients with prostate cancer during and beyond radiotherapy treatment. A local perspective on future provision

“…Jaeger et al 19 report that Oncologists deliver treatment information but are less likely to talk about self-help groups or recovery after treatment. Donohue 18 recommends active promotion of support groups since men often need encouragement to seek information at the end of treatment.…”