Paradigmatic Approach to Support Personalized Counseling With Digital Health (iKNOW).

iKNOW is the first evidence-based digital tool to support personalized counseling for women in Germany with a hereditary cancer risk. The counseling tool is designed for carriers of pathogenic gBRCA (germline breast cancer gene) variants that increase the lifetime risk of breast and ovarian cancer. Carriers of pathogenic variants are confronted with complex, individualized risk information, and physicians must be able to convey this information in a comprehensible way to enable preference-sensitive health decisions. In this paper, we elaborate on the clinical, regulatory, and practical premises of personalized counseling in Germany. By operationalizing these premises, we formulate 5 design principles that, we suggest, are specific enough to develop a digital tool (eg, iKNOW), yet wide-ranging enough to inform the development of counseling tools for personalized medicine more generally: (1) digital counseling tools should implement the current standard of care (eg, based on guidelines); (2) digital counseling tools should help to both standardize and personalize the counseling process (eg, by enabling the preference-sensitive selection of counseling contents from a common information base); (3) digital counseling tools should make complex information easy to access both cognitively (eg, by using evidenced-based risk communication formats) and technically (eg, by means of responsive design for various devices); (4) digital counseling tools should respect the counselee's data privacy rights (eg, through strict pseudonymization and opt-in consent); and (5) digital counseling tools should be systematically and iteratively evaluated with the users in mind (eg, using formative prototype testing to ensure a user-centric design and a summative multicenter, randomized controlled trial). On the basis of these paradigmatic design principles, we hope that iKNOW can serve as a blueprint for the development of more digital innovations to support personalized counseling approaches in cancer medicine.

Illness representations, coping and anxiety among men with localized prostate cancer over an 18-months period: A parallel vs. level-contrast mediation approach.

OBJECTIVE: Men diagnosed with localized prostate cancer (lPCa) are confronted with the decision for a treatment strategy, potentially experiencing treatment side effects and psychological distress. The Common Sense Model proposes that coping with such challenges is related to illness representations: Beliefs regarding consequences, coherence, timeline, and controllability of the illness. We analyzed the interplay of illness representations, coping and anxiety over an 18-month period among men with lPCa undergoing different treatment options (Active Surveillance, curative treatment). METHODS: In this longitudinal study, 183 men (age M = 66.83) answered a questionnaire before starting treatment, and 6, 12, and 18 months later. We analyzed time trajectories with growth curve modeling and conducted mediation analyses to evaluate the influence of coping on the association of illness representations and anxiety. Using a novel methodological approach, we compared a classic parallel mediation model with a level-contrast approach for the correlated mediators problem- and emotion-focused coping. RESULTS: Independent of treatment (b = 1.31, p = 0.200) men reported an elevated level of anxiety after diagnosis which declined considerably within the following 6 months (b = -1.87, p = 0.009). The perceived seriousness of consequences was significantly associated with greater anxiety, at baseline (ß = 0.471) and over time (all ß ≥ 0.204). This association was mediated by coping: Using more emotion-than problem-focused coping was associated with higher anxiety. CONCLUSIONS: Receiving a lPCa diagnosis is associated with a phase of increased anxiety. In order to reduce anxiety, information provision should be accompanied by developing concrete action plans to enable problem-focused coping strategies.

Time pressure predicts decisional regret in men with localized prostate cancer: data from a longitudinal multicenter study.

PURPOSE: A substantial proportion of men with localized prostate cancer (lPCa) later regret their treatment decision. We aimed to identify factors contributing to decisional regret. METHODS: We conducted a longitudinal study, in which men with lPCa were surveyed at four measurement points: T0 (baseline) = prior to treatment; T1 = 6; T2 = 12; T3 = 18 months after baseline. χ2-tests and independent t-tests were used to compare men undergoing different treatments [Active Surveillance (AS) vs. local treatment]. Logistic regression models were fitted to investigate the associations between predictors (time pressure, information provided by the urologist, impairment of erectile functioning, satisfaction with sexual life) and the criterion decisional regret. RESULTS: At baseline, the sample included N = 176 men (AS: n = 100; local treatment: n = 76). At T2 and T3, men after local therapies reported higher regret than men under AS. Decisional regret at T3 was predicted by time pressure at baseline (OR 2.28; CI 1.04-4.99; p < 0.05), erectile dysfunction at T2 and T3 (OR 3.40; CI 1.56-7.42; p < 0.01), and satisfaction with sexual life at T1-T3 (OR 0.44; CI 0.20-0.96; p < 0.05). CONCLUSIONS: Time pressure, erectile dysfunction, and satisfaction with sexual life predict decisional regret in men with lPCa. Mitigating time pressure and realistic expectations concerning treatment side effects may help to prevent decisional regret in PCa survivors. TRIAL REGISTRATION NUMBER: DRKS00009510; date of registration: 2015/10/28.

[Facets of doctor-patient conversations in urological practice: recommendations for intervention from psycho-oncology]. / Facetten des Arzt-Patienten-Gesprächs in der Urologischen Praxis ­ Handlungsempfehlungen aus der Psychoonkologie.

Tumour diseases are accompanied by complex fears and psychological stress, with which the urologist is confronted. This article examines facets of doctor-patient interaction from a psycho-oncological perspective. These include risk perception, lay theories, lifestyle changes, sexuality and, most importantly, dealing with anxiety. Based on recent research results, suggestions are given for the communication with patients. However, the article also shows the limits of physician-patient conversations. Professional psychological patient support is required if the cancer causes a psychological crisis or if deeper problems are reactivated, or if some problems simply require more time and rest than is available in everyday practice. Therefore, this article provides an overview of further psycho-oncological interventions and support services for cancer patients.

The importance of sexuality, changes in erectile functioning and its association with self-esteem in men with localized prostate cancer: data from an observational study.

BACKGROUND: Treatment for localized prostate cancer (PCa) can cause long-term changes in erectile functioning. However, data on the importance of sexuality and possible consequences of altered erectile functioning on self-esteem in men with localized PCa are lacking. METHODS: Self-report questionnaires were completed by 292 men with PCa, initially managed with active surveillance (AS) or radical prostatectomy (RP). Independent t-tests were conducted to evaluate group differences. A sequential multiple regression model was fitted to analyze the associations between the importance of sexuality, changes in erectile functioning and impairment of self-esteem. Interaction effects were tested using simple slope analyses. RESULTS: Participants were 70 ± 7.2 years old and 66.5% rated sex as being "rather/very important". The two groups differed markedly in changes in erectile functioning, importance of sexuality and impairment of self-esteem (p < .001), with higher values in RP patients. Regression analysis showed that after adjustment for control variables and importance of sexuality, changes in erectile functioning were still associated with impairment of self-esteem (B = .668, SE = .069, p < .001). The interaction of changes in erectile functioning and importance of sexuality reached significance (B = .318, SE = .062, p < .001). CONCLUSIONS: RP patients report more changes in erectile functioning than AS patients. Moreover, in men with localized PCa, erectile functioning and self-esteem are closely related. Sexuality seems to be important for the majority of these men. Physicians should address the possibility of erectile dysfunction and its potential effects on psychological well-being before the treatment decision.