Genetic testing for pheochromocytoma and paraganglioma: SDHx carriers' experiences.

Pheochromocytoma and paraganglioma are frequently hereditary tumors commonly associated with succinate dehydrogenase (SDHx) pathogenic variants (PV). Genetic testing is recommended to relatives of patients carrying SDHx PV. This study aims to explore the experiences associated with genetic testing for this hereditary condition. Semi-structured interviews with 38 SDHx PV (tumor-affected and non-affected) carriers were transcribed and content-analyzed. Four ways of living with this genetic alteration emerged from the interviews: 'living as if not knowing', 'preventing others from going through this', 'feeling privileged', and 'still suffering'. Within each, negative, neutral, and positive reactions to the actual test result emerged initially, in addition to blame and guilt. Recognition of the importance of the genetic test and of the follow-up occurred in all four, but views on fecundity were divided between having and not having children. Consideration for the four different meanings of carrying an SDHx PV can improve participants' experiences and clinical practice.

Psychometric Properties of the MICRA Questionnaire in Portuguese Individuals Carrying SDHx Mutations.

This study aims to present the translation and cultural adaptation, as well as the psychometric characteristics of the Portuguese version of the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire in individuals with SDHx mutations. The questionnaire was translated and culturally adapted in accordance with the process recommended by the World Health Organization. As per suggestion of the authors of the original instrument, a joint, universal European and Brazilian Portuguese version of the MICRA was created. Ninety-six (asymptomatic or affected) patients with SDHx mutations nationwide completed the adapted version of the MICRA in Portugal. Analyses consisted of confirmatory factor analysis, reliability estimation (alphas), and correlations with two other distress and quality of life instruments. The Portuguese adaptation of the MICRA was understandable to patients from various socioeconomic backgrounds. All items and factor structure of the original version were retained, yielding a good model fit. The MICRA's three subscales and total score showed good internal consistency, and the correlations found between the Portuguese version of the MICRA and the other instruments assessing similar constructs further supported its validity. The adapted version of the MICRA showed good psychometric properties with a representative population of SDHx mutation carriers. This instrument can now be used to study the multidimensional impact of taking a genetic test for these mutations. It can also be used in future studies with other Portuguese populations of patients submitted to genetic tests for cancer risk assessment.

The Influence of Patient-Centered Communication on Children's Anxiety and Use of Anesthesia for MR.

Background: The aim of this study was to inspect the influence of patient-centered communication (PCC) with 4- to 10-year-old children on the use of anesthesia for magnetic resonance imaging exams (MRs). Methods: A total of thirty children received the PCC and pre-simulated the exam with an MR toy. Another 30 children received routine information about the MR and pre-simulated the exam with the toy. Anesthesia use in these two groups was additionally compared with a previously existing group of children (n = 30) who had received only routine information about the exam (CG). Children's anxiety was assessed with a self-report question plus heartbeat frequency. Children's satisfaction was assessed through several questions. The analyses were based on group comparisons and regression. Results: A total of two children (7%) in the PCC + simulation group used sedation compared with 14 (47%) in the simulation group and 21 (70%) in the CG. Differences between the PCC + simulation and the other two groups were significant (p < 0.001), although not between the simulation and the CG. The decrease in anxiety was significantly greater (self-reported p < 0.001; heart rate p < 0.05) and satisfaction was higher (p = 0.001) in the PCC + simulation, when compared with the simulation group. Reduced anxiety was associated with less anesthesia use (OR 1.39; CI 1.07−1.79; p = 0.013). Conclusions: PCC + simulation was more effective than simulation and routine practice in decreasing children's anxiety, increasing satisfaction, and reducing the use of anesthesia for MRs.

Pheochromocytoma and paraganglioma genetic testing: Psychological impact.

OBJECTIVE: Genetic testing is recommended for all pheochromocytoma/paraganglioma tumor-affected patients and, if positive, for their relatives, who are at risk of developing tumors. This study aims to assess the previously unexamined psychological impact of genetic testing and identify factors associated with this impact. METHOD: A nationwide sample of 103 individuals carrying succinate dehydrogenase mutations answered the Multidimensional Impact of Cancer Risk Assessment (MICRA) questionnaire plus two measures of general well-being (the SF-36 Health Survey and the Hospital Anxiety and Depression scale). Sociodemographic, clinical, and personality characteristics (the 5 personality factors and locus of control) were also assessed. Data were analyzed with bivariate and GLM univariate analyses. RESULTS: Genetic testing-related mean scores were 6.12 for Distress, 11.58 for Uncertainty, 10.61 for Positive experiences, and almost 30% of the sample displayed high MICRA global suffering. Tumor-affected participants whose neoplasia was identified through presymptomatic screening felt that the genetic test has made it easier to cope with their disease. Significant aspects associated with genetic-testing-related Distress and Uncertainty included higher levels of Neuroticism and Agreeableness. An interaction between having the neoplasia and having children was also associated with higher levels of Distress. Education and Conscientiousness were associated with Positive experiences. Affected mutation carriers presented lower global quality of life and higher anxiety and depression levels than healthy mutation carriers. CONCLUSIONS: Genetic testing's impact depends on individual characteristics. The identified characteristics can inform clinical practice regarding who might benefit from special care in genetic counseling. (PsycInfo Database Record (c) 2020 APA, all rights reserved).

The Influence of Professionals' Empathy on Parents' Anxiety in Cases of Juvenile Criminology.

In situations of juvenile delinquency, abuse, or neglect, determination of child custody relies on interviews with parents. This study aims to examine the effects of the interviewer's empathy on parents' anxiety, and to explore how parents experience these situations. A measure of anxiety was applied to 41 parents under evaluation for child custody before and after the assessment interview. Professionals' empathy was rated by both parents and professionals after each appointment. Parents participated in semistructured interviews. Data were analyzed through statistical and content analyses. The decrease in anxiety was significantly greater for parents who perceived professionals as "perfect" than for parents who perceived professionals as "less than perfect" in empathy. Parents' and professionals' empathy scores correlated positively, but the association between professionals' self-rated empathy and parents' anxiety was nonsignificant. Reactions to the justice system's intervention emerging in the semistructured interviews were "unjustifiable intrusion," "disconcerting information," and "reality confirmation." Each associated differently with parents' expectations for the assessment interview (respectively, that the process be over quickly, that it be over successfully, and that help start quickly). Our results support the important effects, from parents' perspectives, of empathy in assessment interviews in the context of juvenile criminology.

Breaking bad news: patients' preferences and health locus of control.

OBJECTIVE: To identify patients' preferences for models of communicating bad news and to explore how such preferences, and the reasons for the preferences, relate with personality characteristics, specifically patients' health locus of control (HLC): internal/external and 'powerful others' (PO). METHODS: Seventy-two patients from an oncology clinic watched videotaped scenarios of a breaking bad news moment, selected the model they preferred, filled an HLC scale and were interviewed about their choices. Data were analyzed with Chi-square, Kruskal-Wallis and Mann-Whitney tests. Interviews were content-analyzed. RESULTS: 77.8% preferred an "empathic professional", 12.5% a "distanced expert" and 9.7% an "emotionally burdened expert". Preferences varied significantly with HLC scores (patients with higher internal locus of control (ILC) and lower PO preferred the empathic model), presence of cancer, age and education. Patients explained their preferences through aspects of Caring, Professionalism, Wording, Time and Hope. ILC registered significant differences in regards to Wording and Time, whereas PO was associated with Hope and Time. CONCLUSIONS: HLC is an important dimension that can help doctors to better know their patients. PRACTICE IMPLICATIONS: Knowing whether patients attribute their health to their own behaviors or to chance/others can help tailor the disclosure of bad news to their specific preferences.

[Transsexuality: experiencing the transition process in the context of health care services]. / Transsexualidade: vivência do processo de transição no contexto dos serviços de saúde.

Genital reconstruction surgery and hormonal treatment for transsexuals are performed in health care services following a long and complex evaluation process generally based on the guidelines proposed by the World Professional Association for Transgender Health. Though important to ensure these individuals' health and well-being, such procedures may conflict with their reality, raising obstacles not only for the candidates but also for professionals who deal with them. The reality of this population has been the focus of recent studies, whose results are to be considered in the new version (the seventh) of the procedures, currently under elaboration. In Portugal, the experience transsexuals have of their transition process, and of that process within health care services is still unknown. Yet, integrating that experience with these guidelines may contribute to better adapting procedures to their target population, decreasing obstacles facing the parties involved and improving available services. Seeking to bridge this gap and to contribute to the increased integration of population's needs and professionals' procedures, the current work examines transsexuals' experiences of their transition process, highlighting aspects that constitute difficulties to it or else facilitate it. The study is based on in-depth interviews with biological male transsexuals who request hormonal and surgical interventions to acquire a female physiology. Data were content-analyzed in the software program NUD*IST. The analysis reveals several themes associated with positive experiences in the sample's transition process (e.g., presence and accessibility of services dealing with this issue, presence of guidelines, setting the surgery date), negative experiences (e.g., process duration and uncertainties, professional treatment received), and experiences which cut across both (e.g., quality and variety of available services), as well as some paradoxes. In general, the interviewees defend the existence of non-rigid guidelines used in transgender evaluation, as well as flexibility in the treatment offered by professionals, based on knowledge and respect for each case and on updated information on this domain. Some procedures that may contribute to a more effective handling of the transition process are outlined based on identified themes. The articulation of diverse contexts and services (medical, legal, professional) is necessary for the improved success of the transition.