Psychosocial impact of prognostic genetic testing in uveal melanoma patients: a controlled prospective clinical observational study.

BACKGROUND: The risk of metastases in uveal melanoma can accurately be estimated through genetic analysis of the tumor. A growing number of patients decide to receive information on their prognosis, although this can be extremely burdensome. Studies on the psychosocial impact of testing are sparse. The objective of this study was to examine traits of patients opting for prognostication, to investigate its psychosocial impact and the use of psycho-oncological services over time. We further examined characteristics of patients utilizing these services and risk factors of prolonged psychological distress. DESIGN AND METHODS: This study is a non-randomized controlled prospective clinical observational trial. Patients availing for prognostication formed the test group, while those who opted out constituted the observational group. The psychosocial impact of genetic testing was assessed with the following variables: resilience, social support, fear of tumor progression, depression, general distress, health-related quality of life, estimation of the perceived risk, and the utilization of psycho-oncological interventions. Data were assessed at five different time points over a period of 12 months. We applied binary logistic regression analysis, multiple linear regressions and a mixed model. RESULTS: Of 175 patients, 63 decided to obtain prognostic information. Treatment method (enucleation > brachytherapy), lower social support and higher general distress could significantly predict patient's choice for prognostic testing. After result announcement, perceived risk of metastases was significantly increased in patients with poor prognosis, while it decreased in those with good prognosis. Overall, a significant decrease over time appeared concerning fear of progression, general distress, depression and anxiety. Mental quality of life increased over time. The utilization of psycho-oncological interventions increased significantly after prognostication; however, this was equivalent in the test and observational groups. Female sex, higher general distress and higher anxiety predicted greater use of psycho-oncological interventions. DISCUSSION: Availing of prognostic testing is not associated with poorer subsequent psychological well-being. It rather may help to alleviate distress and promote a more realistic risk perception. However, psychological support should be available to all patients, independent of prognosis and treatment, especially considering that patients with low social support and high distress increasingly opt for prognostication.

Psychosocial Resources and Quality of Life in Transgender Women following Gender-Affirming Surgery.

INTRODUCTION: Psychosocial resources like social support or intrapersonal coping skills play an important role in resilience and quality of life (QOL), yet research systematically investigating the availability of different resources and QOL in transgender (trans) women is missing. AIM: The present study aimed to systematically investigate the existence of different psychosocial resources and QOL in trans women following gender-affirming surgery (GAS). METHODS: Using a cross-sectional design, 557 trans women who had received GAS at the local urological department were invited to study participation. Criteria for study inclusion were 18 years and older, diagnosis of transsexualism according to the International Classification of Disease, completion of all sessions of GAS, and given written informed consent to study participation. MAIN OUTCOME MEASURES: Psychosocial resources were assessed using the Essen Resource Inventory (ERI), the Sense of Coherence Scale, and the Social Support Scale. QOL was assessed with the Short Form Health Survey. Data from trans women were compared to normative data of healthy non-trans women as reported in the respective test manuals. RESULTS: In total, 158 trans women responded and participated in this study. They had received GAS 4 months to 21 years ago. The total sample was divided into 3 subgroups depending on the time interval since the participants' last GAS procedure (group 1: GAS 0.3-3 years ago (n = 48); group 2: GAS 3.1-10 years ago (n = 62); and group 3: GAS 10.1-21 years ago (n = 41)). Trans women retrospectively indicated their available resources 3 years ago (ERI 3-years) and in the last 4 weeks (ERI 4-weeks). Trans women who had received GAS within the last 3 years (group 1) showed an increase in resources when comparing ERI 3-year scores (presurgery) with ERI 4-week scores (postsurgery). No differences emerged for group 2 and group 3. Compared to normative data from non-trans women, trans women scored significantly lower on the ERI but not in measures of Social Support Scale or Sense of Coherence Scale. Compared to non-trans women, mental QOL was significantly impaired in trans women, whereas no differences in physical QOL emerged. CLINICAL IMPLICATIONS: As this study hints towards reduced psychosocial resources in trans women, the offering of specialized counseling can have high beneficial potential to support the development of resources, thereby enhancing QOL. STRENGTH & LIMITATIONS: Data of a large sample of trans women is provided who were investigated up to 21 years after GAS. The study is limited by its cross-sectional design and the response rate of 42%. CONCLUSION: This study indicates that psychosocial resources improve around the time of GAS and seem to be improved and sustained in later years following GAS. Still, compared to non-trans women, trans women have a lower availability of resources and a lower mental QOL. Breidenstein A, Hess J, Hadaschik B, et al. Psychosocial Resources and Quality of Life in Transgender Women following Gender-Affirming Surgery. J Sex Med 2019;16:1672-1680.

Psychosocial impact of prognostic genetic testing in the care of uveal melanoma patients: protocol of a controlled prospective clinical observational study.

BACKGROUND: Uveal melanoma patients with a poor prognosis can be detected through genetic analysis of the tumor, which has a very high sensitivity. A large number of patients with uveal melanoma decide to receive information about their individual risk and therefore routine prognostic genetic testing is being carried out on a growing number of patients. It is obvious that a positive prediction for recidivism in the future will emotionally burden the respective patients, but research on the psychosocial impact of this innovative method is lacking. The aim of the current study is therefore to investigate the psychosocial impact (psychological distress and quality of life) of prognostic genetic testing in patients with uveal melanoma. DESIGN AND METHODS: This study is a non-randomized controlled prospective clinical observational trial. Subjects are patients with uveal melanoma, in whom genetic testing is possible. Patients who consent to genetic testing are allocated to the intervention group and patients who refuse genetic testing form the observational group. Both groups receive cancer therapy and psycho-oncological intervention when needed. The psychosocial impact of prognostic testing is investigated with the following variables: resilience, social support, fear of tumor progression, depression, general distress, cancer-specific and general health-related quality of life, attitude towards genetic testing, estimation of the perceived risk of metastasis, utilization and satisfaction with psycho-oncological crisis intervention, and sociodemographic data. Data are assessed preoperatively (at initial admission in the clinic) and postoperatively (at discharge from hospital after surgery, 6-12 weeks, 6 and 12 months after initial admission). Genetic test results are communicated 6-12 weeks after initial admission to the clinic. DISCUSSION: We created optimal conditions for investigation of the psychosocial impact of prognostic genetic testing. This study will provide information on the course of disease and psychosocial outcomes after prognostic genetic testing. We expect that empirical data from our study will give a scientific basis for medico-ethical considerations.

Alterations in event-related potential responses to empathy for pain in schizophrenia.

Lack of empathy is a critical factor impacting on social functioning and quality of life in schizophrenia. There is, however, a paucity of research into the underlying neurophysiological correlates of empathy deficits in this disorder. Accordingly, we sought: (1) to identify whether dysfunctional empathic abilities in schizophrenia are related to alterations in early or late brain processes, and (2) to explore the potential relationship between brain activity and mood, self-reported empathy and symptom severity. Eighteen patients with schizophrenia and 21 healthy matched controls performed an empathy-for-pain paradigm where photographs of hands in neutral or painful situations were shown while we recorded their electroencephalography (EEG), and we examined mood, empathic concern for others and symptom severity. Significant group differences between patients and controls emerged in early (50-150ms after stimulus onset) and late (after 300ms) timeframes. Moreover, brain activity was related with unpleasantness ratings in all participants, with self-reported empathic concern only in controls and with negative mood and personal distress only in patients. Differences in social behavior in schizophrenia may be explained by early as well as late differences, affecting mostly the early frontocentral ERPs, i.e. those suggested to correspond to the emotional sharing component of empathy.

Sex-dependent effects of stress on brain correlates to empathy for pain.

Empathy is a fundamental attribute required for appropriate social functioning. The extent to which we empathize with others in pain is influenced by numerous factors. Being highly social species, humans face social stress on a regular basis, which undoubtedly affects how we react to our environment. It is not yet known how social stress may modulate our neural mechanisms when we empathize with others in painful circumstances, and its effects on empathic behavior are still unclear. For this reason, we recorded the electroencephalography (EEG) of healthy men and women, half of which were previously exposed to psychosocial stress, while they observed photographs of hands in painful and neutral situations. At the behavioral level, stress induced higher unpleasantness ratings to painful stimuli, and lower ratings to neutral pictures, independent of sex. At the neurophysiological level, we found that early (N110 over fronto-central sites) event-related potentials (ERPs) were not affected by stress, while late (P3 over centro-parietal regions) components showed a sex-dependent differential effect of stress. Correlation analyses further indicated a strong association between N110 with trait markers of empathy in all participants, while P3 was associated with the change in cortisol in stressed males. Our findings suggest that sex-dependent effects of social stress on the neural responses to empathy for pain give rise to comparable behaviors in men and women in the paradigm we employed, implying that each sex may engage in distinct mechanisms to cope with stress. Moreover, stress seems to modulate late neural mechanisms of empathy but not our early perception.

Stress reduces the incorporation of misinformation into an established memory.

Memory can be distorted by misleading post-event information. These memory distortions may have serious consequences, for example in eyewitness testimony. Many situations in which memory reports are solicited, and suggestive or misleading information is presented, are highly stressful for the respondent, yet little is known about how stress affects people's susceptibility to misinformation. Here, we exposed participants to a stressor or a control manipulation before they were presented misinformation about a previous event. We report that stressed participants endorsed misinformation in a subsequent memory test less often than control participants, suggesting that stress reduces distortions of memory by misleading information.