Maternal perceptions of BRCA genetic counseling communication processes about disclosing cancer risk information to children and adult relatives.

OBJECTIVES: Using a novel measure, examine maternal perceptions of the process by which issues pertaining to family communication of BRCA test results are addressed during cancer genetic counseling. METHODS: After receiving BRCA results, mothers (N = 211) of minor-age children reported on their counseling experiences with providers using a communication process measure as well as other psychosocial variables. RESULTS: The novel Genetic Counseling Communication Process measure demonstrated good internal consistency of its 2 factors: patient-led communication (Cronbach's α = 0.73) and provider-led communication (Cronbach's α = 0.82). Participants most often reported that discussions about family communication of BRCA test results to children and adult relatives were led only by their providers (38.2%-39.2%), as opposed to being led by the patient, both parties, or neither party. Providers were most likely to lead these discussions when mothers had stronger family histories of cancer and expressed more confidence about making a decision to talk to their children about BRCA. However, mothers typically led such discussions if they were raising older children and held more positive attitudes about pediatric BRCA testing. CONCLUSIONS: When the assessment of BRCA genetic counseling outcomes includes family communication to potentially at-risk relatives, we learned that most but not all sessions addressed this topic. Cancer family history, child age, and maternal attitudes are important co-factors in these patient-provider communication exchanges. Providers delivering BRCA genetic counseling should be attentive to mothers' information and support needs regarding communicating cancer genetic test results to at-risk relatives, including children.

Issues Arising in Psychological Consultations to Help Parents Talk to Minor and Young Adult Children about their Cancer Genetic Test Result: a Guide to Providers.

The defining difference between genetic and traditional medicine is that genetic findings have implications not just for the patient, but also for their relatives. Discussion of a test result between parent and child is both a transformative and a translational moment in the life of a family. Parents report wanting help in talking to their children. The challenge for genetic counselors and other providers is to be able to recognize which issues are at the core of parental distress and be able to offer recommendations to empower and support parents. The complexity of potential genetic findings, including variants of uncertain significance (VUS) and incidental findings have vastly increased, requiring considerable explanation and leaving less time for discussion of emotional issues. While the nature of the testing (single gene to multigene panel and genomic testing) is dramatically changing, the nature of parent concerns remains remarkably constant. Families differ in many respects, so no "recipe" suffices to answer parents' questions about how this important task should be approached in each family. Successful consultation to parents requires true counseling, matching parents' fears and questions with information, exploration and advice specific to their concerns, their circumstances and strengths.

A social program for adolescent and young adult survivors of pediatric brain tumors: The power of a shared medical experience.

Survivors of pediatric brain tumors experience several medical and psychosocial late effects including deficits in social competence. This mixed methods study investigated the experience of 19 adolescent and young adult survivors of pediatric brain tumors and 17 parents who participated in a social support program. Qualitative results demonstrated a significant social isolation that was compounded by medical late effects. Survivors perceived social support and acceptance from interactions with peers who have similar medical backgrounds as a key aspect of the group experience. Parents reported increased social confidence among survivors, although they did not report that social gains generalized beyond the group setting. Interventions to promote the transfer of specific social skills are needed.

Social Competence in Childhood Brain Tumor Survivors: Feasibility and Preliminary Outcomes of a Peer-Mediated Intervention.

OBJECTIVE: Evaluate the acceptability, feasibility, and preliminary outcomes of a peer-mediated intervention to improve social competence of brain tumor survivors and classmates. METHOD: Twelve childhood brain tumor survivors and 217 classroom peers in intervention (n = 8) or comparison (n = 4) classrooms completed measures of social acceptance and reputation at 2 time points in the year. The intervention (5-8 sessions over 4-6 weeks) taught peer leaders skills for engaging classmates. Individual and classroom outcomes were analyzed with analysis of covariance. RESULTS: Recruitment rates of families of brain tumor survivors (81%) and schools (100%) were adequate. Peer leaders reported satisfaction with the intervention. Preliminary outcome data trended toward some benefit in increasing the number of friend nominations for survivors of brain tumors but no changes in other peer-reported metrics. Preliminary results also suggested some positive effects on classroom levels of victimization and rejection. CONCLUSION: A peer-mediated intervention was acceptable to families of brain tumor survivors and feasible to implement in schools. Findings warrant a larger trial to evaluate improvements for children with brain tumors and their peers.

Communication, Documentation, and Training Standards in Pediatric Psychosocial Oncology.

As part of a larger effort to create standards for psychosocial care of children with cancer, we document consensus and evidence-based data on interprofessional communication, documentation, and training for professionals providing psycho-oncology services. Six databases were searched. Sixty-five articles and six guidelines and consensus-based documents were identified; 35 met inclusion criteria. Data support strong recommendations for standards of care in communication/collaboration, documentation of patient information, and training in pediatric psycho-oncology. These are areas where extensive research is unlikely to be conducted; however, professional expectations and qualifications may be further clarified and strengthened with time.

Standards for the Psychosocial Care of Children With Cancer and Their Families: An Introduction to the Special Issue.

Pediatric oncology psychosocial professionals collaborated with an interdisciplinary group of experts and stakeholders and developed evidence-based standards for pediatric psychosocial care. Given the breadth of research evidence and traditions of clinical care, 15 standards were derived. Each standard is based on a systematic review of relevant literature and used the AGREE II process to evaluate the quality of the evidence. This article describes the methods used to develop the standards and introduces the 15 articles included in this special issue. Established standards help ensure that all children with cancer and their families receive essential psychosocial care.

Women's concerns about the emotional impact of awareness of heritable breast cancer risk and its implications for their children.

Women tested for mutations in BRCA1/2 genes who have minor-aged children confront difficult decisions about if, when, and how to share information about hereditary cancer risk with their children. These choices are often seemingly influenced by how mothers anticipate the emotional burdens they and their children will experience in response to test results. Here, we investigate the association between maternal cognitions, pretest psychological well-being, and coping style with mothers' anticipated emotional reactions to learning that they are BRCA1/2 mutation carriers (N = 205). In a linear regression model adjusted for maternal demographics, stronger tendencies to ruminate about information (B = .14, p = .03), greater psychological strain (B = .14, p < .001), and poorer appraisals of one's ability to cope with genetic test results conveying increased breast cancer risk information (B = -.25, p < .001) were significantly associated with anticipating more negative affect surrounding BRCA1/2 mutation identification in mothers. Our data contribute to the growing awareness of special concerns that mothers have about knowing their BRCA1/2 mutation status and highlight the need for more tailored patient education and counseling resources to improve outcomes among women at risk and their children.

Pediatric psycho-oncology care: standards, guidelines, and consensus reports.

OBJECTIVE: The aim of this study was to identify existing guidelines, standards, or consensus-based reports for psychosocial care of children with cancer and their families. PURPOSE: Psychosocial standards of care for children with cancer can systematize the approach to care and create a replicable model that can be utilized in pediatric hospitals around the world. Determining gaps in existing standards in pediatric psycho-oncology can guide development of useful evidence-based and consensus-based standards. METHODS: The MEDLINE and PubMed databases were searched by investigators at two major pediatric oncology centers for existing guidelines, consensus-based reports, or standards for psychosocial care of patients with pediatric cancer and their families published in peer-reviewed journals in English between 1980 and 2013. RESULTS: We located 27 articles about psychosocial care that met inclusion criteria: 5 set forth standards, 19 were guidelines, and 3 were consensus-based reports. None was sufficiently up to date, comprehensive, specific enough, or evidence- or consensus-based to serve as a current standard for psychosocial care for children with cancer and their families. CONCLUSION: Despite calls by a number of international pediatric oncology and psycho-oncology professional organizations about the urgency of addressing the psychosocial needs of the child with cancer to reduce suffering, there remains a need for development of a widely acceptable, evidence-based and consensus-based, comprehensive standard of care to guide provision of essential psychosocial services to all patients with pediatric cancer.

Health and well-being in adolescent survivors of early childhood cancer: a report from the Childhood Cancer Survivor Study.

OBJECTIVE: With the growing number of childhood cancer survivors in the US, it is important to assess the well-being of these individuals, particularly during the transitional phase of adolescence. Data about adolescent survivors' overall health and quality of life will help identify survivor subgroups most in need of targeted attention to successfully transition to adulthood. PARTICIPANTS AND METHODS: This ancillary study to the Childhood Cancer Survivor Study focused on children 15-19 years of age who had been diagnosed with cancer before the age of 4 years. A cohort of siblings of pediatric cancer survivors of the same ages served as a comparison sample. Adolescent health was assessed using the Child Health and Illness Profile-Adolescent Edition (CHIP-AE) survey. RESULTS: The teen survey was sent to 444 survivor teens and 189 siblings. Of these, 307(69%) survivors and 97 (51%) siblings completed and returned the survey. The overall health profiles of siblings and survivors were similar. Among survivors, females scored significantly below males on satisfaction, discomfort, and disorders domains. Survivors diagnosed with central nervous system tumors scored less favorably than leukemia survivors in the global domains of satisfaction and disorders. CONCLUSION: In general, adolescent survivors fare favorably compared to healthy siblings. However, identification of the subset of pediatric cancer survivors who are more vulnerable to medical and psychosocial disorders in adolescence provides the opportunity for design and implementation of intervention strategies that may improve quality of life.

Decisional outcomes of maternal disclosure of BRCA1/2 genetic test results to children.

BACKGROUND: Although BRCA1/2 genetic testing is discouraged in minors, mothers may disclose their own results to their children. Factors affecting patients' disclosure decisions and patient outcomes of disclosure are largely unknown. METHODS: Mothers (N = 221) of children aged 8 to 21 years enrolled in this prospective study of family communication about cancer genetic testing. Patients underwent BRCA1/2 genetic counseling and testing, and completed standardized behavioral assessments before and 1-month following receipt of their results. RESULTS: Most patients (62.4%) disclosed BRCA1/2 test results to their child. Patients were more likely to disclose if they received negative or uninformative versus positive results [OR = 3.11; 95% confidence interval (CI), 1.11-8.71; P = .03], their child was 13 years of age or more versus younger (OR = 5.43; 95% CI, 2.18-13.53; P < .001), and as the ratio of patients' perceived benefits of disclosure outweighed potential risks (OR = 2.40; 95% CI, 1.63-3.54; P < .001). Postdecision satisfaction about disclosure was lowest among nondisclosing patients (P < .001) and those reporting greater decisional conflict (P < .001). CONCLUSIONS: Patients commonly discuss their BRCA1/2 results with their teenage and young adult children, especially if the information is perceived as beneficial. Satisfaction with disclosure decision making remains lowest among nondisclosing and conflicted patients. Family communication decision support adjuncts to genetic counseling are needed to help ameliorate these effects. IMPACT: This study describes the prevalence of family communication about maternal BRCA1/2 genetic testing with minor children, and decisions and outcomes of disclosure.

100 years Lynch syndrome: what have we learned about psychosocial issues?

In the care of patients with Lynch Syndrome (LS), a range of psychosocial issues are encountered, which significantly affect patient outcomes. A brief historical background of 'psycho-onco-genetics' (the domain where psychology, oncology and genetics meet) in relation to LS is presented, followed by an overview of important psychosocial issues identified in the past 20 years. The identification of mismatch repair genes in 1993-1994 made possible genetic counseling and testing for patients who had cancer and for potentially high-risk relatives without cancer. At that time, concerns were raised about the potentially negative psychosocial impact of predictive genetic testing. Since 1993, a large number of studies have been conducted to investigate the possible psychosocial benefits and limitations of such testing. This article presents an overview of: the uptake of and motivations for genetic testing, its psychosocial impact (e.g. psychological adaptation, impact on risk perception and self-concept, and concerns about, and experiences of, genetic discrimination), psychological screening instruments, adherence to and decision-making about preventive strategies, family communication, lifestyle changes, reproductive technology utilization, and professional psychosocial support needs of members of families with LS. Finally, challenges for the future are discussed, including population screening and genomic testing.

A worldview of the professional experiences and training needs of pediatric psycho-oncologists.

BACKGROUND: Thirty years after the origin of the field of psycho-oncology, limited data exist about the work practices of professionals providing psychosocial care to children with cancer and their families. METHOD: A survey was designed to assess training, work environment, theoretical orientation, services provided, subspecialty areas or areas of special interest, satisfactions, challenges, and continuing education needs of pediatric psycho-oncologists. Members of national and international psycho-oncology organizations were invited to participate in the web-based survey. RESULTS: Seven hundred eighty-six professionals from 63 countries responded. The sample consisted mostly of psychologists (41%), physicians (20%), and social workers (14%). Approximately half of the participants worked in a designated psycho-oncology unit. Psychologists and social workers provided the majority of psychosocial services. Individual sessions with parents were most common (42%), followed by sessions with children (41%), survivors (36%), families (31%), and siblings (25%). Therapies provided include cognitive behavioral therapy (50%), relaxation (43%), psychodynamic psychotherapy (27%), play therapy (26%), and imagery (23%). Two-thirds reported having appropriate supervision, 37% were conducting research, and only half felt their salary was appropriate. Differences in therapeutic modalities were found by country. Clinicians desire training on clinical interventions, improving communication with medical staff, research, and ethics. CONCLUSIONS: An international cohort of clinicians providing pediatric psycho-oncology services perform a wide variety of tasks, use a range of therapeutic approaches, and report considerable work satisfaction. Problem areas include professional inter-relations, inadequate supervision, and need for additional specialized training. Opportunity exists for global collaboration in pediatric psycho-oncology research and practices to enhance clinical effectiveness and reduce professional isolation.

Incidence and predictors of positive and negative effects of BRCA1/2 genetic testing on familial relationships: a 3-year follow-up study.

PURPOSE: Little is known about the long-term impact of BRCA1/2 testing on the relationships between family members. We assessed the incidence of positive and negative family relationship effects of BRCA1/2 testing in the 3 years after result disclosure and identified predictors of these effects. METHODS: A total of 485 women and 67 men who had undergone BRCA1/2 testing were asked 3 years later whether having been tested had improved and/or disrupted relationships with their relatives. The associations with sociodemographic, medical, and psychosocial characteristics were assessed. RESULTS: Globally, 85.1% did not report any positive or negative effects of genetic testing on family relationships. Positive and negative effects were reported by 13.2% and 3.7% of participants, respectively. Reporting positive relationship effects was associated with older age, intolerance for uncertainty, cancer-specific distress, and more social support. Low education, positive attitude toward prophylactic mastectomy, and low social support increased the likelihood of negative effects. CONCLUSION: Our findings do not support the belief that family relationships are frequently disrupted by BRCA1/2 testing. Understanding that most family relationships are unchanged long term by genetic testing may help genetic service providers encourage those considering testing to overcome hesitancy related to potential difficulties of communicating results to relatives.

Gender differences in research grant applications and funding outcomes for medical school faculty.

PURPOSE: To evaluate whether there were differences in acquisition of research grant support between male and female faculty at eight Harvard Medical School-affiliated institutions. METHODS: Data were obtained from the participating institutions on all research grant applications submitted by full-time faculty from 2001 through 2003. Data were analyzed by gender and faculty rank of applicant, source of support (federal or nonfederal), funding outcome, amount of funding requested, and amount of funding awarded. RESULTS: Data on 6319 grant applications submitted by 2480 faculty applicants were analyzed. Women represented 29% of investigators and submitted 26% of all grant requests. There were significant gender differences in the mean number of submissions per applicant (women 2.3, men 2.7), success rate (women 41%, men 45%), number of years requested (women 3.1, men 3.4), median annual amount requested (women $115,325, men $150,000), mean number of years awarded (women 2.9, men 3.2), and median annual amount awarded (women $98,094, men $125,000). After controlling for academic rank, grant success rates were not significantly different between women and men, although submission rates by women were significantly lower at the lowest faculty rank. Although there was no difference in the proportion of money awarded to money requested, women were awarded significantly less money than men at the ranks of instructor and associate professor. More men than women applied to the National Institutes of Health, which awarded higher dollar amounts than other funding sources. CONCLUSIONS: Gender disparity in grant funding is largely explained by gender disparities in academic rank. Controlling for rank, women and men were equally successful in acquiring grants. However, gender differences in grant application behavior at lower academic ranks also contribute to gender disparity in grant funding for medical science.