RESUMO
Given that young women with breast cancer often have concerns and priorities attributable to their life stage, we conducted a series of interviews to better understanding the surgical decision-making experience among women diagnosed at age ≤40. Women spoke of how the potential effect of an extended recovery was affecting their decision and, in some cases, contributing to decisional conflict. Several women described their worry of leaving cancer cells behind; others cited the need for continued surveillance as a consideration. Attention to situational anxiety and concerns about recurrence are warranted to ensure that decisions are made in a supportive and patient-centered setting.
Assuntos
Ansiedade/psicologia , Neoplasias da Mama/psicologia , Neoplasias da Mama/cirurgia , Tomada de Decisões , Mastectomia/psicologia , Recidiva Local de Neoplasia/psicologia , Adulto , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/patologia , Feminino , Humanos , Estadiamento de Neoplasias , Participação do Paciente , Complicações Pós-Operatórias/psicologia , Inquéritos e QuestionáriosRESUMO
BACKGROUND: Hereditary tumor predisposition syndromes (HTPSs) are being recognized more frequently in the etiology of pediatric cancer. Previous research indicates that disclosure of tumor susceptibility is a significant event in adolescents' lives. Insight into adolescents' adjustment to knowledge of their syndromes can guide healthcare delivery, particularly genetic counseling. This study explored the experiences of adolescents with hereditary tumor predisposition and their perceptions of living at risk. METHODS: Seven adolescents, ages 14 to 17, representing six different childhood-onset HTPSs, were purposively sampled and interviewed using a study-specific semistructured interview guide. We explored the disclosure process, support systems, and the perceived benefits and harms of knowledge of hereditary tumor susceptibility. Interview transcripts were analyzed via interpretive description. RESULTS: Three major themes emerged from the data: (1) The benefits of knowledge outweigh the harms; (2) context surrounding genetic testing must be recognized; and (3) self-concept is influenced but not defined by tumor risk. CONCLUSIONS: We conclude that adolescents recognize the challenges associated with awareness of tumor predisposition but may also identify positive aspects in their experiences, reflecting a changed life perspective. Results of this exploratory study suggest strategies that can guide pretest and posttest genetic counseling of adolescents for HTPSs, facilitating the adaptive incorporation of genetic information into an adolescent's self-concept.
Assuntos
Aconselhamento Genético , Predisposição Genética para Doença , Síndromes Neoplásicas Hereditárias/genética , Síndromes Neoplásicas Hereditárias/psicologia , Adolescente , Feminino , Seguimentos , Testes Genéticos , Humanos , Masculino , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: This paper presents data on licensure/certification status, supervision of multidisciplinary pediatric psychosocial staff, and training opportunities in pediatric cancer programs in the United States, data that are critical to provide care aligned with the Standards of Psychosocial Care in Pediatric Cancer (Psychosocial Standards). METHODS: An online survey of psychosocial care consistent with the Psychosocial Standards was completed from a national sample of pediatric cancer programs (144/200). Licensure/certification status, availability and format of supervision for multidisciplinary staff (social workers, psychologists, psychiatrists, child life specialists/recreational therapists), and types and number of psychosocial trainees were reported. RESULTS: Nearly all pediatric psychosocial providers were licensed/certified. Peer consultation was the most frequently endorsed form of staff supervision although a sizeable group of centers reported no systematic ongoing supervision. Trainees in social work and child life were most common although the size of trainee cohorts is generally small. Psychosocial trainees are more prevalent in sites with pediatric hematology/oncology medical fellowship programs and in larger programs. CONCLUSIONS: A properly trained and supported psychosocial workforce is essential to providing evidence-based care consistent with the Psychosocial Standards. Psychosocial providers are appropriately licensed. However, supervision opportunities are variable and may be inadequate for the intensity of the work. It is important to address the limited opportunities for trainees in pediatric cancer programs, which may influence the pipeline for ongoing and future work in this area.
Assuntos
Competência Clínica , Relações Interprofissionais , Neoplasias/terapia , Psico-Oncologia/educação , Psicologia da Criança/educação , Serviço Social/educação , Feminino , Humanos , Masculino , Neoplasias/psicologia , Estados UnidosRESUMO
INTRODUCTION: Patient-derived xenografts (PDXs) have the potential to transform personalised cancer care, however, little is known about the acceptability of using PDXs to guide treatment decision-making. Given that patient and community preferences can influence satisfaction with care as well as the success of new technologies, we will evaluate the acceptability of PDXs in individuals affected by cancer and community comparisons. METHODS AND ANALYSIS: This comparative cross-sectional study will recruit 323 individuals affected by cancer (cancer survivors (of childhood or adult cancer) and parents of childhood cancer survivors) and 323 community comparisons (adults and parents). We will collect data via structured interviews and questionnaires. To determine the acceptability of PDXs, we will assess five domains: willingness to use PDXs when/if diagnosed with cancer, perceived advantages and disadvantages of PDXs, maximum acceptable out-of-pocket costs per patient, maximum acceptable turnaround time to receive results and maximum acceptable number of mice sacrificed per patient. The primary endpoint will be participants' decisional balance ratio (calculated as participants' advantages ratings divided by perceived disadvantages ratings). ETHICS AND DISSEMINATION: The study protocol has been approved by the South Eastern Sydney Local Health District Human Research Ethics Committee (HREC:12/173) and UNSW Sydney (HC15773). The results will be disseminated in peer-reviewed journals and at scientific conferences. A lay summary will be published on the Behavioural Sciences Unit website.
Assuntos
Xenoenxertos/transplante , Neoplasias/cirurgia , Aceitação pelo Paciente de Cuidados de Saúde/estatística & dados numéricos , Medicina de Precisão/métodos , Adolescente , Adulto , Animais , Austrália , Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Estudos de Casos e Controles , Criança , Protocolos Clínicos , Estudos Transversais , Feminino , Humanos , Entrevistas como Assunto , Masculino , Camundongos , Nova Zelândia , Pais/psicologia , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: Young women with unilateral breast cancer are increasingly choosing contralateral prophylactic mastectomy (CPM), despite its limited medical benefit for most women. The purpose of this study was to better understand this choice through a qualitative exploration of surgical decision-making in young survivors, including how issues particular to younger women affected their decision and the post-surgical experience. METHODS: Women age ≤ 40 years with stage 0 to III breast cancer, 1 to 3 years from diagnosis who had undergone breast cancer surgery were recruited to participate. Four focus groups were conducted: 2 with women who had bilateral mastectomy and 2 with women who kept their contralateral breast. Focus groups were recorded and transcribed with identifiers removed. Emergent themes were identified by thematic content analysis using NVivo 11. RESULTS: Of the 20 participants, median age at diagnosis was 37 years. Emergent themes were categorized into the following domains: (1) emotions/feelings surrounding surgery/decision about surgery; (2) factors affecting the decision; (3) communication and interaction with the healthcare team; (4) impact on post-surgical life and recovery; and (5) support needs. Young women who chose CPM often were concerned about a future breast event, despite this low risk, suggesting some gain peace of mind by choosing CPM. Young survivors also had many physical and emotional concerns after surgery for which they did not always feel prepared. CONCLUSIONS: Informational resources and decision aids may enhance patient-doctor communication and help young survivors better understand risk and manage expectations surrounding short and longer-term physical and emotional effects after surgery.
Assuntos
Neoplasias da Mama/psicologia , Neoplasias da Mama/cirurgia , Sobreviventes de Câncer/psicologia , Mastectomia/psicologia , Adulto , Tomada de Decisões , Feminino , HumanosRESUMO
BACKGROUND: There is growing impetus for increased genetic screening in childhood cancer survivors. Family history-taking is a critical first step in determining survivors' suitability. However, the family history-taking practices of providers of pediatric oncology survivorship care and the confidence of these providers to discuss cancer risks to relatives are unknown. PROCEDURE: Fifty-four providers completed semistructured interviews in total, which included eight tertiary providers representing nine hospitals across two countries (63% male, 63% oncologists, 37% nurses) and 46 primary care providers (PCPs) nominated by a survivor (59% male, 35% regional practice). We used content analysis and descriptive statistics/regression to analyze the data. RESULTS: Few tertiary (38%) or primary (35%) providers regularly collected survivors' family histories, often relying on survivors/parents to initiate discussions. Providers mostly took two-generation pedigrees (63% tertiary and 81% primary). Primary providers focused on adult cancers. Lack of time, alternative priorities, and perceived lack of relevance were common barriers. Half of all tertiary providers felt moderately comfortable discussing genetic cancer risk to children of survivors (88% felt similarly discussing risks to other relatives). Most primary providers lacked confidence: 41% felt confident regarding risks to survivors' children and 48% regarding risks to other relatives. CONCLUSIONS: While family history-taking will not identify all survivors suitable for genetics assessment, recommendations for regular history-taking are not being implemented in tertiary or primary care. Additional PCP-targeted genetic education is warranted given that they are well placed to review family histories of pediatric cancer survivors.
Assuntos
Sobreviventes de Câncer , Aconselhamento Genético , Testes Genéticos , Pessoal de Saúde , Anamnese , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Projetos Piloto , Fatores de RiscoRESUMO
Understanding challenges in familial communication of cancer risk has informed genetic service delivery. Parent-child interactions have received considerable attention, but few studies focus on young adulthood experiences within BRCA1/2 families. Young adults are approaching, or at a life stage where awareness of hereditary cancer risk is vital for informed choice of risk management options. This review assesses family communication, risk perception and cancer knowledge held by 18-40 year old individuals who have a parent with a BRCA1/2 gene mutation or carry the gene mutation themselves. Thirteen papers met the inclusion criteria. One utilized a 'mixed methods' methodology and the remaining used a qualitative approach. Findings were synthesized into themes and reported narratively. In general, parents are communicating openly about genetic risk with young adult offspring, but there is evidence that some young adults are withholding information from their parents about their own test results. Risk perception is influenced by a family history of cancer, childbearing plans and health providers' advice. Misconceptions about genetic risk appear to be common and gaps in hereditary cancer knowledge are evident. It is unclear whether incorrect knowledge was passed from parents to offspring. Health providers need to provide developmentally appropriate services for emerging adults (18-25 years old), with particular support in navigating through risk management options.
Assuntos
Filhos Adultos , Genes BRCA1 , Genes BRCA2 , Neoplasias/genética , Relações Pais-Filho , Adulto , Feminino , Predisposição Genética para Doença , Humanos , Masculino , Mutação , Neoplasias/prevenção & controle , Adulto JovemRESUMO
BACKGROUND: Genetic testing to determine cancer survivors' risk of developing late effects from their cancer treatment will be increasingly used in survivorship care. This 2-stage study with 64 survivors of childhood cancer and their parents investigated the preferences and acceptability of testing among those who may be at risk of developing late effects. METHODS: The first stage (Stage 1) identified the most commonly perceived benefits and concerns regarding genetic testing for the risk of late effects among 24 participants. In Stage 2, during interviews, 20 survivors (55% of whom were female; mean age, 26.0 years [range, 18-39 years]; standard deviation [SD], 0.80) and 20 parents (55% of whom were male; mean age of child survivor, 14.2 years [range, 10-19 years]; SD, 0.79) rated the 7 most common benefits and concerns from those identified in Stage 1. Interviews were transcribed verbatim and analyzed. Decisional balance ratios were calculated by dividing the participants' average concerns scores with the average benefits scores. RESULTS: Genetic testing for late effects was highly acceptable: 95% of participants leaned toward testing, and the majority (65.9%) would pay up to Australian $5000. The majority (97.2%) reported it was acceptable to wait for up to 6 months to receive results, and to be offered testing immediately after treatment or when the survivor reached adulthood (62.9%). Survivors and parents had a highly positive decisional balance (Mean (M), 0.5 [SD, 0.38] and M, 0.5 [SD, 0.39], respectively), indicating that perceived benefits outweighed concerns. CONCLUSIONS: Although to our knowledge clinical efficacy has yet to be clearly demonstrated, survivors and parents described positive interest in genetic testing for the risk of developing late effects. Perceived benefits outweighed harms, and the majority of participants would be willing to pay, and wait, for testing. Cancer 2016. © 2016 American Cancer Society. Cancer 2016;122:2876-2885. © 2016 American Cancer Society.
Assuntos
Testes Genéticos/economia , Testes Genéticos/métodos , Conhecimentos, Atitudes e Prática em Saúde , Neoplasias/economia , Neoplasias/genética , Adolescente , Adulto , Feminino , Predisposição Genética para Doença , Humanos , Masculino , Neoplasias/mortalidade , Neoplasias/psicologia , Aceitação pelo Paciente de Cuidados de Saúde , Risco , Sobreviventes , Adulto JovemRESUMO
PURPOSE: This review assessed the psychological impact that acquiring personal and familial genetic information has on children. We also examined the concordance between the available empirical data and clinical guidance/perspectives articles. METHODS: We screened 591 abstracts and identified 13 studies, representing 966 children. Ten studies assessed 386 children tested for familial adenomatous polyposis (n = 171), hereditary cardiac disease (n = 134), and other conditions (n = 81). Three studies addressed the impact of BRCA1/2 testing of a family member on 580 children. RESULTS: Serious adverse psychological outcomes were uncommon. Most studies reported no significant increase in mean anxiety, depression, and distress scores (n = 8, 61.5%); however, some children experienced intrafamilial distress, discrimination, and guilt/regret. Some children were more concerned about their own health or their family members' health. There was limited consistency between anticipated adverse impact and empirical data. CONCLUSIONS: The review identified little conclusive evidence of deleterious psychological consequences for children acquiring genetic information. However, there is a lack of data regarding genetic testing for conditions that may not be treatable/modifiable, as well as a dearth of longitudinal studies. Therefore, clinical caution remains essential for the ethical integration of genetic testing into pediatrics. Further research assessing the potential positive and negative effects of genetic testing in childhood is warranted.Genet Med 18 8, 755-762.
Assuntos
Comportamento Infantil/psicologia , Estresse Psicológico/etiologia , Adolescente , Criança , Feminino , Testes Genéticos , Humanos , MasculinoRESUMO
As the mortality of pediatric cancers has decreased, focus on neuropsychological morbidities of treatment sequelae have increased. Neuropsychological evaluations are essential diagnostic tools that assess cognitive functioning and neurobiological integrity. These tests provide vital information to support ongoing medical care, documenting cognitive morbidity and response to interventions. We frame standards for neuropsychological monitoring of pediatric patients with CNS malignancy or who received cancer-directed therapies involving the CNS and discuss billing for these services in the United States in the context of clinical research. We describe a cost-effective, efficient model of neuropsychological monitoring that may increases access to neuropsychological care.
Assuntos
Neoplasias do Sistema Nervoso Central/psicologia , Oncologia/normas , Neurologia/normas , Testes Neuropsicológicos/normas , Pediatria/normas , Neoplasias do Sistema Nervoso Central/terapia , Criança , Humanos , Oncologia/economia , Neurologia/economia , Pediatria/economia , Padrão de Cuidado , Sobreviventes/psicologia , Estados UnidosRESUMO
OBJECTIVE: To examine the role of temperament (i.e., surgency/positive affect, negative affect, and effortful control) in the social behavior of pediatric brain tumor survivors and comparison classmates. METHODS: Parent-, peer-, and self-report data were collected for 75 children after treatment for a brain tumor, and 67 comparison classmates. Tests of mediation and moderated mediation were run to examine whether effortful control accounted for group differences in social behavior and whether this indirect effect was moderated by surgency/positive or negative affectivity. RESULTS: Peers described survivors as lower in Leadership-popularity and higher in Sensitivity-isolation and victimization than comparison classmates. Parent and self-report of surgency/positive affect revealed survivors were lower on this dimension. Survivors were rated by parents as demonstrating less effortful control. Effortful control did not consistently account for group differences in social behavior. There was limited evidence of moderated mediation. CONCLUSIONS: Research on the implications of potential changes in temperament following treatment is warranted.
Assuntos
Neoplasias Encefálicas/psicologia , Grupo Associado , Comportamento Social , Sobreviventes/psicologia , Temperamento , Adolescente , Criança , Feminino , Humanos , Masculino , Pais/psicologia , Isolamento SocialRESUMO
INTRODUCTION: Women at high risk for ovarian cancer due to BRCA1 orâ BRCA2 mutation or family history are recommended to undergo risk-reducing salpingo-oophorectomy (RRSO) after age 35 or completion of childbearing. This potentially life-saving surgery leads to premature menopause, frequently resulting in distressing and unaddressed sexual dysfunction. AIM: To pilot a novel sexual health intervention for women with BRCA1/2 mutations who previously underwent RRSO a using a single-arm trial. Feasibility and primary outcomes including sexual dysfunction and psychological distress were assessed. METHODS: This single-arm trial included a one-time, half-day educational session comprised of targeted sexual health education, body awareness and relaxation training, and mindfulness-based cognitive therapy strategies, followed by two sessions of tailored telephone counseling. Assessments were completed at baseline and 2 months postintervention. MAIN OUTCOME MEASURE: Study end points include feasibility and effectiveness as reported by the participant. RESULTS: Thirty-seven women completed baseline and postintervention assessments. At baseline, participants had a mean age of 44.4 (standard deviation [SD] = 3.9) years and mean duration of 3.8 (SD = 2.7) years since RRSO. Overall sexual functioning (P = 0.018), as well as desire (P = 0.003), arousal (P = 0.003), satisfaction (P = 0.028), and pain (P = 0.018), improved significantly. There were significant reductions in somatization (P = 0.029) and anxiety scores (P < 0.001), and, overall, for the Global Severity Index (P < 0.001) of the Brief Symptom Inventory. Sexual self-efficacy and sexual knowledge also improved significantly from baseline to postintervention (both P < 0.001). Women were highly satisfied with the intervention content and reported utilizing new skills to manage sexual dysfunction. CONCLUSIONS: This intervention integrates elements of cognitive behavioral therapy with sexual health education to address a much-neglected problem after RRSO. Results from this promising single-arm study provide preliminary data to move toward conducting a randomized, controlled trial.
Assuntos
Terapia Cognitivo-Comportamental , Aconselhamento Diretivo , Neoplasias Ovarianas/prevenção & controle , Ovariectomia , Comportamento de Redução do Risco , Salpingectomia , Adulto , Proteína BRCA1/genética , Proteína BRCA2/genética , Estudos de Viabilidade , Feminino , Predisposição Genética para Doença , Humanos , Mutação , Neoplasias Ovarianas/psicologia , Ovariectomia/métodos , Satisfação Pessoal , Projetos Piloto , Qualidade de Vida , Autoeficácia , Comportamento SexualRESUMO
BACKGROUND: Li-Fraumeni syndrome is a rare genetic cancer predisposition syndrome caused by germline TP53 mutations. Up to 20% of mutation carriers develop cancer during childhood. The benefits of TP53 mutation testing of children are a matter of debate and knowledge of parent decision-making around such testing is limited. The current study examined how parents make decisions regarding TP53 testing for their children. METHODS: Families offered and those pursuing TP53 testing for their children were identified across the study sites. Qualitative interviews with 46 parents (39 families) were analyzed to describe decision-making styles and perceived advantages and disadvantages of testing. RESULTS: TP53 mutation testing uptake was high (92%). Three decision-making styles emerged. Automatic decisions (44% of decisions) involved little thought and identified immediate benefit(s) in testing (100% pursued testing). Considered decisions (49%) weighed the risks and benefits but were made easily (77% pursued testing). Deliberated decisions (6%) were difficult and focused on psychosocial concerns (25% pursued testing). Perceived advantages of testing included promoting child health, satisfying a "need to know," understanding why cancer(s) occurred, suggesting family member risk, and benefiting research. Disadvantages included psychosocial risks and privacy/discrimination/insurance issues. CONCLUSIONS: Although empirical evidence regarding the benefits and risks of TP53 testing during childhood are lacking, the majority of parents in the current study decided easily in favor of testing and perceived a range of advantages. The authors conclude that in the context of a clinical diagnosis of Li-Fraumeni syndrome, parents should continue to be offered TP53 testing for their children, counseled regarding potential risks and benefits, and supported in their decision-making process.
Assuntos
Tomada de Decisões , Testes Genéticos , Mutação em Linhagem Germinativa , Heterozigoto , Síndrome de Li-Fraumeni/genética , Pais , Proteína Supressora de Tumor p53/genética , Adolescente , Adulto , Criança , Pré-Escolar , Feminino , Aconselhamento Genético , Predisposição Genética para Doença , Comportamentos Relacionados com a Saúde , Humanos , Lactente , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa QualitativaRESUMO
OBJECTIVE: To assess self-perceptions of social behavior among children treated for a brain tumor and comparison children. To investigate group differences in the accuracy of children's self-perceptions as measured by discrepancies between self and peer reports of social behavior and to understand if these phenomena differ by gender. METHOD: Self and peer reports of social behavior were obtained in the classrooms of 116 children who were treated for an intracranial tumor. Social behaviors were assessed using the Revised Class Play, which generates indices for 5 behavioral subscales: Leadership-popularity, Prosocial, Aggressive-disruptive, Sensitive-isolated, and Victimization. A child matched for gender, race, and age was selected from each survivor's classroom to serve as a comparison. Abbreviated IQ scores were obtained in participants' homes. RESULTS: Relative to comparison children, those who had undergone treatment for a brain tumor overestimated their level of Leadership-popularity and underestimated levels of Sensitive-isolated behaviors and Victimization by peers. Female survivors were more likely than male survivors to underestimate Sensitive-isolated behaviors and Victimization. CONCLUSION: Following treatment for a brain tumor, children (particularly girls) may be more likely than healthy children to underestimate peer relationship difficulties. These discrepancies should be considered when obtaining self-report from survivors and developing interventions to improve social functioning.
Assuntos
Neoplasias Encefálicas/psicologia , Grupo Associado , Autoimagem , Comportamento Social , Sobreviventes/psicologia , Adolescente , Criança , Vítimas de Crime/psicologia , Feminino , Humanos , Masculino , Fatores Sexuais , Isolamento Social/psicologiaRESUMO
OBJECTIVE: To investigate the influence of dyadic parenting relationships on psychological distress among mothers tested for BRCA1/2 genetic mutations and their untested partners. METHODS: Data were from a prospective study of mothers suspected to be at risk for hereditary breast/ovarian cancer who underwent genetic counseling and BRCA1/2 testing and their untested parenting partners (n = 109 parenting dyads). Participants completed assessments before and 1 month after genetic testing. Structural equation modeling was used to examine relationships among mothers' and partners' psychological distress, decisional conflict surrounding communication of test results to their offspring, and the parent-child communication relationship. Psychological distress was measured using items modified from the Brief Symptom Inventory. RESULTS: Among mothers, greater psychological distress (B = 0.29, p < .001) and poorer parent-child communication (B = -0.12, p < .01) at baseline predicted greater distress at follow-up. Among partners, greater distress at baseline predicted greater distress at follow-up (B = 0.67, p < .001). Mother and partner decisional conflict at baseline were equally associated with the other dyad member's distress at follow-up (B = 1.17, p < .01), but not their own distress. CONCLUSIONS: Our findings indicate that conflicted decision-making over family communication of hereditary breast/ovarian cancer genetic test results for one member of a parenting dyad adversely affects the other dyad member's psychological well-being. Interventions to improve outcomes for mothers who may be at-risk for hereditary breast and ovarian cancer and undergoing BRCA1/2 genetic testing should attend to mothers' and their partners' preferences regarding family communication about hereditary cancer risk.
Assuntos
Genes BRCA1 , Genes BRCA2 , Mães/psicologia , Relações Pais-Filho , Poder Familiar/psicologia , Parceiros Sexuais/psicologia , Estresse Psicológico , Adolescente , Adulto , Neoplasias da Mama/genética , Criança , Comunicação , Conflito Psicológico , Tomada de Decisões , Feminino , Aconselhamento Genético , Predisposição Genética para Doença , Testes Genéticos , Humanos , Masculino , Pessoa de Meia-Idade , Mutação , Neoplasias Ovarianas/genética , Estudos ProspectivosRESUMO
OBJECTIVE: The objectives of this study are to determine (i) what daughters, ages 18-24 years, of BRCA1/2 mutation carriers understand about their 50% chance of carrying a BRCA1/2 mutation and about risk reduction or management options for mutation carriers, (ii) the extent and nature of daughters' cancer-related distress, and (iii) the effects of knowing mother's mutation status on daughters' future plans. METHODS: A total of 40 daughters, currently aged 18-24 years, of mothers who tested positive for a mutation in BRCA1/2 were invited by mail to participate (with contact information supplied by their mothers). Daughters participated in a qualitative telephone interview about the impact of learning their mother's mutation status on their understanding of their own cancer risks and their cancer-related distress, and their knowledge of screening strategies, risk-reducing surgery, current health status, and future plans. Participants also completed study-specific demographic and family history questionnaires, the Brief Symptom Inventory-18, Impact of Event Scale (with hereditary predisposition to breast/ovarian cancer as the event), and the Breast Cancer Genetic Counseling Knowledge Questionnaire. RESULTS: Daughters' genetic knowledge is suboptimal; gaps and misconceptions were common. Over 1/3 of the daughters reported high cancer-related distress, despite normal levels of general distress. Disclosed genetic information raised future concerns, especially regarding childbearing. CONCLUSION: Targeted professional attention to this high-risk cohort of young women is critical to inform the next generation of daughters of BRCA1/2 mutation carriers and encourage recommended screening by age 25 years. Improved uptake of screening and risk reduction options could improve survival, and psychoeducation could reduce cancer-related distress.
Assuntos
Predisposição Genética para Doença/psicologia , Conhecimentos, Atitudes e Prática em Saúde , Síndrome Hereditária de Câncer de Mama e Ovário/psicologia , Estresse Psicológico/psicologia , Adolescente , Filhos Adultos/psicologia , Feminino , Genes BRCA1 , Genes BRCA2 , Heterozigoto , Humanos , Núcleo Familiar/psicologia , Adulto JovemRESUMO
PURPOSE: The purpose of this study is to examine whether parental education, socioeconomic status, or family environment moderate the extent of academic achievement deficits in pediatric brain tumor survivors (PBTS) relative to classmate case-controls. PBTS are known to be at risk for cognitive and academic impairment; however, the degree of impairment varies. Prior research has focused on treatment risk, and efforts to examine the protective role of family resources and relationships have been lacking. METHODS: Pediatric brain tumor survivors (N = 164), ages 8-15 and 1-5 years posttreatment, were recruited at five treatment centers in the United States and Canada. A case-control classmate, matched for age, gender, and race, was recruited for each survivor. The Wide Range Achievement Test, a demographic form, and the Family Environment Scale were administered in families' homes. Treatment data were abstracted from medical charts. RESULTS: Pediatric brain tumor survivors demonstrated lower achievement than classmate-controls in reading, spelling, and arithmetic. Parental education and socioeconomic status were associated with levels of achievement demonstrated by PBTS but did not account for discrepancies between PBTS and classmate-controls. Deficits in achievement relative to classmate-controls, across all academic domains, were greater for survivors in families lower in support and higher in conflict. These associations remained after controlling for age at diagnosis, time since treatment, and whether treatment had involved chemotherapy, focal, or whole brain radiation. CONCLUSIONS: These results support the development of interventions to enhance family functioning as well as educational resources as part of intervention and rehabilitation services to optimize academic progress in children who have been treated for brain tumors.
Assuntos
Logro , Neoplasias Encefálicas/epidemiologia , Família , Deficiências da Aprendizagem/epidemiologia , Sobreviventes , Adolescente , Canadá , Estudos de Casos e Controles , Criança , Estudos Transversais , Avaliação Educacional , Feminino , Humanos , Masculino , Meio Social , Fatores Socioeconômicos , Inquéritos e Questionários , Estados UnidosRESUMO
AIM: Among mothers undergoing BRCA1/2 testing and their spouses/partners, this study sought to examine decision support needs and motivations for family communication of genetic risk information to asymptomatic children. METHODS: This study gathered data from 213 tested mothers and 104 of their untested parenting partners 1 month after maternal receipt of genetic test results and upon making a decision about communicating genetic information to their child (ages 8-21 years). Data include parents' perceived needs for family communication decision support, decision motivations, and parent-child communication. RESULTS: Parents reported high decision support needs (e.g., educational materials, professional counseling, peer assistance). Motivations for disclosure to children among mothers and partners focused on promoting the parent-child bond and maintaining family health (55.3% and 75%, respectively) and promoting positive child affect (44.7% and 25.5%, respectively). Motivations for nondisclosure to children among mothers and partners focused on the lack of appropriateness (69.6% and 51.3%, respectively) and relative importance of genetic test results (30.4% and 48.7%, respectively). Significant discrepancies in parental motivation for family communication were observed. Decision support needs were highest among disclosing mothers with affect-related motivations [t (129)=2.47; p=0.01]. Parent-child communication was poorest among nondisclosing mothers concerned about the appropriateness of genetic information for their child [t (77)=-3.29; p=.002]. CONCLUSIONS: Parents receiving information about hereditary cancer predisposition have unmet needs when making decisions about disclosing genetic risk information to their asymptomatic children. These data can guide the development of cancer risk communication decision support interventions for parents undergoing such testing.
Assuntos
Neoplasias da Mama/genética , Predisposição Genética para Doença , Relações Pais-Filho , Pais/psicologia , Revelação da Verdade , Adolescente , Adulto , Neoplasias da Mama/psicologia , Criança , Tomada de Decisões , Feminino , Genes BRCA1 , Genes BRCA2 , Aconselhamento Genético , Testes Genéticos , Humanos , Masculino , Pessoa de Meia-Idade , Incerteza , Adulto JovemRESUMO
OBJECTIVE: To determine the prevalence of fathers' attendance at pretest cancer genetic counseling sessions with mothers undergoing BRCA1/2 genetic testing for hereditary breast/ovarian cancer (HBOC) risk, and to identify psychosocial and other correlates of fathers' attendance. METHODS: One hundred and twenty-one fathers of minor-age children who were spouses/partners of women (mothers) undergoing such counseling and testing were recruited, completed a behavioral self-report survey, and provided data about their sociodemographic backgrounds, father-child cancer communication histories, parenting relationship quality, and information-seeking and perceived knowledge. RESULTS: A total of 27.3% of fathers attended pretest cancer genetic counseling with mothers. Compared to fathers who did not attend pretest cancer genetic counseling, those who did had stronger parenting alliances with mothers, were more likely to have sought out information about BRCA1/2 testing, and felt more informed about testing. In an adjusted logistic regression model of session attendance, the strength of the parenting alliance was associated with a 6% increase in the likelihood of attending genetic counseling (odds ratio [OR]=1.06, 95% confidence interval [CI]=1.01, 1.12, p<.05) and greater perceived knowledge about BRCA1/2 testing was associated with a four-fold increase in the likelihood of session attendance (OR=4.03, CI=1.77, 9.37, p<.001). CONCLUSION: One in three fathers attend pretest cancer genetic counseling with mothers undergoing BRCA1/2 testing; those who do have closer parenting relationships and are more informed about BRCA1/2 testing. PRACTICE IMPLICATIONS: When possible, providers should discuss mothers including fathers in cancer genetic counseling sessions as this may affect outcomes of HBOC genetic counseling and testing.