ABSTRACT
Despite concerted and accelerated efforts to increase the knowledge of medicine and disease via clinical studies, clinical trials continue to face low enrollment for all patient groups. The dissemination of the availability of clinical trials to individuals with or at risk for hereditary disorders is critical. This study acts as a foundation in determining an unexplored role of clinical trial discussion in genetic counseling practice. Board-certified, patient-facing genetic counselors in the United States were invited to participate in an anonymous survey via the National Society of Genetic Counselors. Between February and April 2022, 157 participants (N = 157) completed the survey on clinical trial discussion with patients, barriers, and facilitators to discussing clinical trials with patients, research experience, and demographics. Survey results identified that most respondents have discussed the availability of clinical trials with a patient (85%). Almost one-third have previous research experience working for a clinical trial (30%). Most agreed that discussions of clinical trials are within the scope of genetic counseling (82%); however, one-third were not comfortable discussing them with patients (34%). Respondents who know how to find specific clinical trials (p < 0.001) were reportedly more likely to be comfortable discussing clinical trials with their patients. In addition to clinical research exposure, this study suggests that further education and training is necessary for genetic counselors to learn how to find and identify specific clinical trials for their patients. In turn, we hope for this to increase genetic counselors' comfort of clinical trial discussion.
ABSTRACT
Increasing numbers of children and adolescents are being referred to gender services for gender-related concerns. Various instruments are used with these patients in clinical care, but their clinical validity, strengths, and limitations have not been systematically reviewed. In this systematic review, we searched MEDLINE, PubMed, and PsycINFO databases for available tools that assess gender identity, gender expression, or gender dysphoria in transgender and gender-diverse (TGD) children and adolescents. We included studies published before Jan 20, 2020, that used tools to assess gender identity, expression, or dysphoria in TGD individuals younger than 18 years. Data were extracted from eligible studies using a standardised form. We found 39 studies that met the inclusion criteria, from which we identified 24 tools. The nature of tools varied considerably and included direct observation, child and adolescent self-report, and parent-report tools. Many methods have only been used with small samples, include outdated content, and lack evaluation of psychometric properties. In summary, a paucity of studies in this area, along with sparse reporting of psychometric properties, made it difficult to compare the relative use of tools, and current tools have substantial limitations. Future research is required to validate existing measures and create more relevant, culturally appropriate tools.
