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1.
Ann Behav Med ; 56(8): 816-829, 2022 08 02.
Artigo em Inglês | MEDLINE | ID: mdl-35179177

RESUMO

BACKGROUND: Little is known about how members of cancer-prone families think about genetic determinism and whether personal behavior can amplify or counter genetic risk for disease. PURPOSE: Understanding how people think about the impact of personal behavior on disease risk may inform communications about genetic risks and their management. METHODS: We assessed three sets of beliefs about the impact of behavior on genetic risk-interactive (unhealthful behaviors can amplify genetic risk), subtractive (healthful behaviors can reduce genetic risk), and deterministic (genes primarily determine health outcomes)-among 114 unaffected members of melanoma-prone families receiving genetic counseling (51.6% men, average age = 35.3). We examined whether these beliefs predicted changes in perceived control, motivation to manage melanoma risk, and sun-protection behavior one year later. RESULTS: Participants strongly endorsed interactive and subtractive beliefs, but not deterministic beliefs. These beliefs generally did not change, even among those who received positive CDKN2A/p16 genetic test results conferring up to 76% lifetime melanoma risk. Controlling for age, sex, education, skin type, and genetic test result, interactive beliefs predicted sustained increases in perceptions of personal control, motivation to reduce sun exposure, use of multiple sun-protection methods, and reduction in objectively assessed tanning at the wrist one year following genetic counseling. Subtractive beliefs predicted increased personal control, motivation to manage risk, and sunscreen use, while deterministic beliefs were generally unrelated to outcomes. CONCLUSIONS: Among people at highly elevated hereditary cancer risk, beliefs that unhealthful behaviors can amplify genetic risk seem to be especially motivating of behavioral risk-reduction efforts.


Assuntos
Melanoma , Neoplasias Cutâneas , Queimadura Solar , Adulto , Feminino , Aconselhamento Genético/psicologia , Testes Genéticos , Comportamentos Relacionados com a Saúde , Humanos , Masculino , Melanoma/genética , Melanoma/prevenção & controle , Neoplasias Cutâneas/genética , Neoplasias Cutâneas/prevenção & controle , Queimadura Solar/prevenção & controle , Protetores Solares
2.
Ann Behav Med ; 55(1): 24-40, 2021 02 12.
Artigo em Inglês | MEDLINE | ID: mdl-32415830

RESUMO

BACKGROUND: Understanding multiple components of risk perceptions is important because perceived risk predicts engagement in prevention behaviors. PURPOSE: To examine how multiple components of risk perceptions (perceived magnitude of and worry about risk, prioritization of the management of one's risk) changed following genetic counseling with or without test reporting, and to examine which of these components prospectively predicted improvements in sun-protection behavior 1 year later. METHODS: A prospective, nonrandomized study design was used. Participants were 114 unaffected members of melanoma-prone families who (i) underwent genetic testing for a CDKN2A/p16 mutation (n = 69) or (ii) were at comparably elevated risk based on family history and underwent genetic counseling but not testing (no-test controls, n = 45). Participants reported risk perception components and sun-protection behavior at baseline, immediately following counseling, and 1 month and 1 year after counseling. RESULTS: Factor analysis indicated three risk components. Carriers reported increased perceived magnitude and priority of risk, but not cancer worry. No-test controls showed no changes in any risk perception. Among noncarriers, priority of risk remained high at all assessments, whereas magnitude of risk and cancer worry decreased. Of the three risk components, greater priority of risk uniquely predicted improved self-reported sun protection 1 year post-counseling. CONCLUSIONS: Priority of risk (i) seems to be a component of risk perceptions distinguishable from magnitude of risk and cancer worry, (ii) may be an important predictor of daily prevention behavior, and (iii) remained elevated 1 year following genetic counseling only for participants who received a positive melanoma genetic test result.


Assuntos
Aconselhamento Genético/psicologia , Predisposição Genética para Doença/psicologia , Testes Genéticos , Melanoma/genética , Comportamento de Redução do Risco , Neoplasias Cutâneas/genética , Adolescente , Adulto , Idoso , Exposição Ambiental/efeitos adversos , Feminino , Genes p16 , Humanos , Masculino , Pessoa de Meia-Idade , Mutação/genética , Estudos Prospectivos , Luz Solar/efeitos adversos , Raios Ultravioleta/efeitos adversos , Melanoma Maligno Cutâneo
3.
Genet Med ; 22(1): 26-34, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31371819

RESUMO

PURPOSE: This study investigated whether genetic counseling and test reporting for the highly penetrant CDKN2A melanoma predisposition gene promoted decreases in sun exposure. METHODS: A prospective, nonequivalent control group design compared unaffected participants (N = 128, Mage = 35.24, 52% men) from (1) families known to carry a CDKN2A pathogenic variant, who received counseling about management recommendations and a positive or negative genetic test result and (2) no-test control families known not to carry a CDKN2A pathogenic variant, who received equivalent counseling based on their comparable family history. Changes in daily ultraviolet radiation (UVR) exposure (J/m2), skin pigmentation (melanin index), and sunburns between baseline and one year following counseling were compared among carriers (n = 32), noncarriers (n = 46), and no-test control participants (n = 50). RESULTS: Both carriers and no-test control participants exhibited a decrease one year later in daily UVR dose (B = -0.52, -0.33, p < 0.01). Only carriers exhibited a significant decrease in skin pigmentation at the wrist one year later (B = -0.11, p < 0.001), and both carriers and no-test control participants reported fewer sunburns than noncarriers (p < 0.05). Facial pigmentation did not change for any group. Noncarriers did not change on any measure of UVR exposure. CONCLUSIONS: These findings support the clinical utility of disclosing CDKN2A test results and providing risk management education to high-risk individuals.


Assuntos
Inibidor p16 de Quinase Dependente de Ciclina/genética , Aconselhamento Genético/métodos , Testes Genéticos/métodos , Melaninas/metabolismo , Queimadura Solar/epidemiologia , Adolescente , Adulto , Idoso , Estudos de Casos e Controles , Feminino , Heterozigoto , Humanos , Masculino , Pessoa de Meia-Idade , Mutação , Linhagem , Estudos Prospectivos , Exposição à Radiação/estatística & dados numéricos , Queimadura Solar/metabolismo , Luz Solar/efeitos adversos , Adulto Jovem
4.
Psychooncology ; 29(1): 148-155, 2020 01.
Artigo em Inglês | MEDLINE | ID: mdl-31520429

RESUMO

OBJECTIVE: Melanoma preventive interventions for children with familial risk are critically needed because ultraviolet radiation (UVR) exposure and sunburn occurrence early in life are the primary modifiable risk factors for melanoma. The current study examined the feasibility and acceptability of a new, family-focused telehealth intervention for children with familial risk for melanoma and their parents. The study also explored changes in child sun protection and risk behaviors, sunburn occurrence, and objectively measured UVR exposure. METHODS: This was a prospective study with a single-group design (n = 21 parent-child dyads, children ages 8-17). Dyads were asked to participate in three in-person assessments and three live video teleconference intervention sessions. RESULTS: The intervention was feasibly delivered, and the intervention content was acceptable to parents and children. The intervention was associated with improvements in child use of certain sun protection strategies over time and declines in child UVR exposure. CONCLUSIONS: A telehealth-delivered,family-focused melanoma preventive intervention was feasibly delivered and was acceptable to parent-child dyads. Future melanoma preventive interventions for this at-risk population could incorporate eHealth technologies to facilitate improvements in use of sun protection and monitoring of UVR exposure. This trial was registered with Clinicaltrials.gov, number NCT02846714.


Assuntos
Educação em Saúde/métodos , Melanoma/prevenção & controle , Neoplasias Cutâneas/prevenção & controle , Queimadura Solar/prevenção & controle , Telemedicina/métodos , Raios Ultravioleta/efeitos adversos , Adolescente , Criança , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Masculino , Melanoma/psicologia , Projetos Piloto , Estudos Prospectivos , Neoplasias Cutâneas/psicologia , Queimadura Solar/psicologia , Protetores Solares/uso terapêutico , Melanoma Maligno Cutâneo
5.
J Cancer Educ ; 35(3): 509-514, 2020 06.
Artigo em Inglês | MEDLINE | ID: mdl-30771212

RESUMO

Melanoma is the deadliest form of skin cancer. Screening can aid in early disease detection, when treatment is more effective. Although there are currently no consensus guidelines regarding skin screening for pediatric populations with elevated familial risk for melanoma, at-risk children with the help of their parents and healthcare providers may implement skin self-exams. Healthcare providers may also recommend screening practices for these children. The goal of the current study was to describe current screening behaviors and provider recommendation for screening among children of melanoma survivors. Parents of children with a family history of melanoma completed a questionnaire that included items on children's screening frequency, thoroughness, and who performed the screening. Seventy-four percent of parents reported that their children (mean age = 9.0 years, SD = 4.8) had engaged in parent-assisted skin self-exams (SSEs) in the past 6 months. Only 12% of parents reported that children received SSEs once per month (the recommended frequency for adult melanoma survivors). In open-ended responses, parents reported that healthcare providers had provided recommendations around how to conduct SSEs, but most parents did not report receiving information on recommended SSE frequency. Twenty-six percent of parents (n = 18) reported that children had received a skin exam by a healthcare provider in the past 6 months. The majority of children with a family history of melanoma are reportedly engaging in skin exams despite the lack of guidelines on screening in this population. Future melanoma preventive interventions should consider providing families guidance about implementing screening with their children.


Assuntos
Sobreviventes de Câncer/estatística & dados numéricos , Conhecimentos, Atitudes e Prática em Saúde , Anamnese/estatística & dados numéricos , Melanoma/prevenção & controle , Pais/educação , Educação de Pacientes como Assunto , Neoplasias Cutâneas/prevenção & controle , Adolescente , Adulto , Sobreviventes de Câncer/psicologia , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Masculino , Pessoa de Meia-Idade , Inquéritos e Questionários , Adulto Jovem
6.
Pediatr Dermatol ; 36(3): 317-323, 2019 May.
Artigo em Inglês | MEDLINE | ID: mdl-30895676

RESUMO

BACKGROUND/OBJECTIVES: Children with an elevated familial risk for melanoma inconsistently implement sun protection behaviors that could mitigate their melanoma risk. Little is known about perceived barriers to child sun protection among this at-risk group and their parents, and the extent to which perceived barriers are associated with child sun protection. The goal of this study was to examine, among children with a family history of melanoma, the frequency with which children and their parents reported barriers to child sun protection and the extent to which barriers were associated with reported use of sun protection among children. METHODS: Children with a family history of melanoma and their parents completed questionnaires assessing perceived barriers and reported child use of sun protection. RESULTS: Common barriers to child sun protection included being bothered by implementing the behavior or forgetting. A greater number of perceived barriers were associated with less frequent child use of sunscreen, long-sleeved shirts, long pants, and shade. CONCLUSIONS: Children at elevated risk for melanoma due to a family history of the disease and their parents perceive multiple barriers to sun protection that are associated with children's use of these melanoma preventive behaviors. Sun protection interventions for this at-risk population could provide families with specific strategies to address common barriers to implementing child sun protection.


Assuntos
Comportamentos Relacionados com a Saúde , Conhecimentos, Atitudes e Prática em Saúde , Melanoma/prevenção & controle , Pais/psicologia , Neoplasias Cutâneas/prevenção & controle , Sobreviventes/psicologia , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Melanoma/psicologia , Pessoa de Meia-Idade , Roupa de Proteção , Neoplasias Cutâneas/psicologia , Protetores Solares/uso terapêutico , Inquéritos e Questionários , Adulto Jovem
7.
J Genet Couns ; 27(4): 955-967, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-29349527

RESUMO

Genetic testing of minors is advised only for conditions in which benefits of early intervention outweigh potential psychological harms. This study investigated whether genetic counseling and test reporting for the CDKN2A/p16 mutation, which confers highly elevated melanoma risk, improved sun protection without inducing distress. Eighteen minors (Mage = 12.4, SD = 1.9) from melanoma-prone families completed measures of protective behavior and distress at baseline, 1 week (distress only), 1 month, and 1 year following test disclosure. Participants and their mothers were individually interviewed on the psychological and behavioral impact of genetic testing 1 month and 1 year post-disclosure. Carriers (n = 9) and noncarriers (n = 9) reported significantly fewer sunburns and a greater proportion reported sun protection adherence between baseline and 1 year post-disclosure; results did not vary by mutation status. Anxiety symptoms remained low post-disclosure, while depressive symptoms and cancer worry decreased. Child and parent interviews corroborated these findings. Mothers indicated that genetic testing was beneficial (100%) because it promoted risk awareness (90.9%) and sun protection (81.8%) without making their children scared (89.9%); several noted their child's greater independent practice of sun protection (45.4%). In this small initial study, minors undergoing CDKN2A/p16 genetic testing reported behavioral improvements and consistently low distress, suggesting such testing may be safely implemented early in life, allowing greater opportunity for risk-reducing lifestyle changes.


Assuntos
Testes Genéticos , Melanoma/diagnóstico , Melanoma/genética , Neoplasias Cutâneas/diagnóstico , Neoplasias Cutâneas/genética , Adolescente , Adulto , Criança , Feminino , Aconselhamento Genético/psicologia , Predisposição Genética para Doença , Humanos , Masculino , Menores de Idade , Comportamento de Redução do Risco
8.
J Community Health ; 43(5): 993-1001, 2018 10.
Artigo em Inglês | MEDLINE | ID: mdl-29623503

RESUMO

Melanoma prevention is essential for children who are at elevated risk for the disease due to family history. However, children who carry a familial risk for the disease do not optimally adhere to recommended melanoma preventive behaviors. The current study sought to identify perceived barriers to and facilitators of children's engagement in melanoma preventive behaviors among children at elevated risk for melanoma due to family history of the disease (i.e., having a parent with a history of melanoma) from both parents' and childrens' perspectives. Qualitative methods were employed and consisted of separate focus group discussions with children (ages 8-17 years, n = 37) and their parents (n = 39). Focus group transcripts were coded using content analysis. Parents and children reported a number of barriers and facilitators, including on the individual (e.g., knowledge and awareness, preferences), social (e.g., peer influences, family modeling and communication), and contextual (e.g., healthcare provider communication) levels. The identified categories of barriers and facilitators both confirm and extend the literature documenting the reasons children who are at elevated risk for melanoma do not engage in melanoma prevention and control behaviors. Programs aiming to decrease melanoma risk among children of melanoma survivors could help families address their barriers to preventive behavior implementation and build on facilitators. Melanoma survivors and their children could benefit from support on their interactions with healthcare providers, schools, peers, and other caregivers about melanoma prevention.


Assuntos
Conhecimentos, Atitudes e Prática em Saúde , Melanoma/prevenção & controle , Pais/educação , Neoplasias Cutâneas/prevenção & controle , Queimadura Solar/prevenção & controle , Adolescente , Cuidadores/educação , Criança , Feminino , Grupos Focais , Humanos , Masculino
9.
J Cancer Educ ; 33(4): 774-781, 2018 08.
Artigo em Inglês | MEDLINE | ID: mdl-27889875

RESUMO

Efforts to prevent melanoma, especially for those at elevated risk for the disease, should ideally begin during childhood. However, there are few preventive interventions targeting children who are at higher risk for melanoma due to a family history of the disease. Further, there are no educational interventions that aim to help these at-risk children understand their risk for melanoma and the ways in which preventive behaviors, such as sun protection, can mitigate their risk. The current paper describes a multidisciplinary team's process for creating a developmentally appropriate educational intervention about melanoma risk and prevention for children ages 8-17 years who have a family history of melanoma. Drawing from the fields of dermatology, health behavior change and education, genetic risk communication, science education, and graphic arts, the multimedia intervention created covers key learning points relevant to understanding melanoma, the role of DNA damage in melanoma development, inherited risk factors for melanoma, environmental factors causing DNA damage, and methods for preventing DNA damage, such as sun protective behaviors. Lessons learned during the development of the educational intervention, particularly relevant to multidisciplinary team interactions, are discussed. Implications for future testing and refinement of the novel educational content are also reviewed.


Assuntos
Predisposição Genética para Doença , Melanoma , Educação de Pacientes como Assunto , Neoplasias Cutâneas , Adolescente , Criança , Feminino , Comportamentos Relacionados com a Saúde , Humanos , Masculino , Melanoma/genética , Melanoma/prevenção & controle , Fatores de Risco , Neoplasias Cutâneas/genética , Neoplasias Cutâneas/prevenção & controle
10.
Prev Med ; 88: 153-67, 2016 07.
Artigo em Inglês | MEDLINE | ID: mdl-27090434

RESUMO

BACKGROUND AND OBJECTIVES: To examine the effectiveness of behavioral interventions for melanoma prevention targeted to individuals at elevated risk due to personal and/or family history. METHODS: Through literature searches in 5 search databases (through July 2014), 20 articles describing 14 unique interventions focused on melanoma prevention among individuals at elevated risk for the disease were identified. Interventions targeting only patients undergoing active treatment for melanoma were excluded. RESULTS: The average study quality was moderate. The majority of interventions (6 out of 9, 66% of studies) led to improvements in one or more photoprotective behaviors, particularly for improvements in use of protective clothing (3 out of 5, 60% of studies), and frequency and/or thoroughness of skin self-examinations (9 out of 12, 75%). Fewer interventions (5 out of 14, 36%) targeted uptake of total body skin examinations (60% led to improvements). Also, fewer interventions targeted all three preventive behaviors (5 out of 14, 36%). CONCLUSIONS: Findings suggest that future interventions should aim to improve adherence across multiple preventive behaviors, over a longer time period (past 8months post-intervention), and target high-risk children. Studies should include adequate sample sizes to investigate moderators and mediators of intervention effectiveness. Interventions may be strengthened by new techniques, such as incorporating family members (e.g., to improve thoroughness of skin self-examinations) and eHealth technology.


Assuntos
Melanoma/prevenção & controle , Roupa de Proteção/estatística & dados numéricos , Autoexame/métodos , Comportamentos Relacionados com a Saúde , Humanos , Fatores de Risco
11.
J Behav Med ; 38(5): 740-53, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-26178773

RESUMO

It is unknown whether or why genetic test reporting confers benefits in the understanding and management of cancer risk beyond what patients learn from counseling based on family history. A prospective nonexperimental control group study compared participants from melanoma-prone families who underwent CDKN2A/p16 (p16) genetic testing (27 carriers, 38 noncarriers) to participants from equivalently melanoma-prone families known not to carry a deleterious p16 mutation (31 no-test controls). All participants received equivalent counseling concerning elevated lifetime melanoma risk and corresponding recommendations for prevention and screening. Both immediately and 1 month after counseling, participants receiving a genetic test result reported greater understanding of their risk, decreased derogation of the risk information, and greater personal applicability of prevention recommendations than no-test controls. Decreased derogation of risk information after test reporting predicted further increases in understanding of melanoma risk and applicability of prevention recommendations 1 month later. Results suggest unique benefits of genetic test reporting in promoting understanding and acceptance of information about hereditary cancer risk and its management.


Assuntos
Inibidor p16 de Quinase Dependente de Ciclina/genética , Aconselhamento Genético , Predisposição Genética para Doença , Testes Genéticos , Melanoma/genética , Neoplasias Cutâneas/genética , Adolescente , Adulto , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estudos Prospectivos , Fatores de Risco , Adulto Jovem , Melanoma Maligno Cutâneo
12.
J Behav Med ; 38(5): 754-65, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-25822116

RESUMO

To determine whether receiving melanoma genetic test results undermines perceived control over melanoma prevention, control-related beliefs were examined among 60 adults from melanoma-prone families receiving CDKN2A/p16 test results (27 unaffected noncarriers, 15 unaffected carriers, 18 affected carriers; response rate at 2 years = 64.9 % of eligible respondents). Multilevel modeling of perceived control ratings over a 2-year period revealed significant variation in individual trajectories: most participants showed increases (45 %) or no change (38.3 %), while 16.7 % showed decreases. At the group level, noncarriers reported sustained increases through the 2-year follow-up (ps < .05); unaffected carriers reported significant short-term increases (ps < .05); and affected carriers reported no change. Participants in all groups continued to rate photoprotection as highly effective in reducing melanoma risk and reported decreased beliefs that carrying the p16 mutation would inevitably lead to the development of melanoma. Qualitative responses immediately following counseling and test reporting corroborated these findings, as 93 % indicated it was possible to either prevent (64.9 %) or decrease the likelihood (28.1 %) of future melanomas. Thus, genetic test reporting does not generally undermine perceived control over melanoma prevention, though variability in response to positive results warrants future study.


Assuntos
Inibidor p16 de Quinase Dependente de Ciclina/genética , Aconselhamento Genético , Predisposição Genética para Doença , Testes Genéticos , Controle Interno-Externo , Melanoma/genética , Neoplasias Cutâneas/genética , Adulto , Feminino , Humanos , Masculino , Melanoma/patologia , Melanoma/psicologia , Pessoa de Meia-Idade , Neoplasias Cutâneas/patologia , Neoplasias Cutâneas/psicologia , Melanoma Maligno Cutâneo
13.
J Genet Couns ; 24(5): 771-82, 2015 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-25582532

RESUMO

A CDKN2A/p16 mutation confers 76 % lifetime risk of developing melanoma to US residents, and high-risk individuals are counseled to use sunscreen. Generally, for patients at population risk, gain framing more effectively promotes prevention behaviors; however, it is unknown whether loss frames might more effectively promote behavioral intentions and perceived control over disease risk among high-risk patients. Undergraduates (N = 146) underwent a simulated genetic counseling and test reporting session for hereditary melanoma. Participants watched a video of a genetic counselor providing information in which genetic risk of melanoma (Low: 15 %; High: 76 %) and framed recommendations to use sunscreen (Loss: Risk may increase by 15 % if don't use sunscreen; Gain: Risk may decrease by 15 % if use sunscreen) were manipulated. Controlling for baseline sunscreen use, high-risk participants given loss frames reported greater beliefs that sunscreen would reduce risk than high-risk participants given gain frames. Further, high-risk participants with fair skin tended to report greater intentions to use sunscreen when given loss frames versus gain frames. Perceived control over risk mediated the effect of message frame and disease risk on intentions to use sunscreen. When counseling patients with elevated cancer risk, genetic counselors may consider framing prevention behavioral recommendations in terms of potential losses.


Assuntos
Testes Genéticos , Comportamentos Relacionados com a Saúde , Melanoma/prevenção & controle , Melanoma/psicologia , Cooperação do Paciente/psicologia , Estudantes/psicologia , Adulto , Feminino , Aconselhamento Genético , Humanos , Masculino , Neoplasias Cutâneas , Protetores Solares/administração & dosagem , Adulto Jovem , Melanoma Maligno Cutâneo
14.
Genet Med ; 16(11): 846-53, 2014 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-24763292

RESUMO

PURPOSE: Reducing ultraviolet radiation exposure may decrease melanoma risk in the hereditary melanoma setting. It is unknown whether genetic counseling and test reporting of CDKN2A/p16 mutation status promote long-term compliance with photoprotection recommendations, especially in unaffected mutation carriers. METHODS: This study evaluated changes 2 years following melanoma genetic testing in self-reported practice of sun protection (sunscreen, photoprotective clothing, and ultraviolet radiation avoidance) among 37 members of two CDKN2A/p16 kindreds (10 unaffected carriers, 11 affected carriers, and 16 unaffected noncarriers; response rate = 64.9% of eligible participants). RESULTS: Multivariate profile analysis indicated that all three participant groups reported increased daily routine practice of sun protection 2 years following melanoma genetic testing (P < 0.02), with 96.9% reporting that at least one sun protection behavior was part of their daily routine, up from 78.1% at baseline (P < 0.015). Unaffected carriers (P < 0.024) and unaffected noncarriers (P < 0.027) reported significantly more frequent use of photoprotective clothing. Affected carriers maintained adherence to all sun protection behaviors. Reported sunburns in the past 6 months decreased significantly (P < 0.018). CONCLUSION: Members of high-risk families reported increased daily routine sun protection and decreased sunburns 2 years following melanoma genetic testing, with no net decline in sun protection following negative test results. Thus, genetic testing and counseling may motivate sustained improvements in prevention behaviors.


Assuntos
Exposição Ambiental/prevenção & controle , Melanoma/prevenção & controle , Cooperação do Paciente/psicologia , Neoplasias Cutâneas/prevenção & controle , Adulto , Inibidor p16 de Quinase Dependente de Ciclina/genética , Feminino , Aconselhamento Genético , Testes Genéticos , Humanos , Masculino , Melanoma/genética , Pessoa de Meia-Idade , Linhagem , Neoplasias Cutâneas/genética , Luz Solar/efeitos adversos , Protetores Solares
15.
J Genet Couns ; 23(3): 421-37, 2014 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-24322567

RESUMO

A major goal of predictive genetic testing is to alert people to their risk before illness onset; however, little is known about how risk perceptions change following genetic testing and whether information is recalled accurately over time. In the United States, a CDKN2A/p16 mutation confers 76 % lifetime risk of melanoma. Following genetic counseling and test reporting, subjective risk estimates and recall of counselor-provided risk estimates were assessed 5 times over the next 2 years among 60 adult members of 2 extended CDKN2A/p16 kindreds. No sustained changes from baseline in risk perceptions were reported. Unaffected carriers (n = 15) consistently reported significantly lower subjective risk estimates (46 %) than they were actually given (76 %, p < 0.001) or recalled having been given (60 %, p < 0.001). Noncarriers' (n = 27) risk estimates decreased following results disclosure, but rebounded, with both subjective and recalled estimates subsequently exceeding what they were told by the counselor (both ps < 0.001). Affected carriers' (n = 18) risk estimates for developing a new melanoma corresponded well to counselor-provided information (p = 0.362). For all 3 patient groups, results were consistent across multiple risk measures and remained similar when demographic, phenotypic, and baseline behavioral contributors to melanoma risk were statistically controlled. These findings are consistent with other studies of risk perception, but additional studies of more diverse populations are needed to understand the reasons behind both the persistence of initial risk estimates and their divergence from information provided by the counselor during genetic counseling. Additionally, determining whether holding subjective risk perceptions that differ from counselor-provided information ultimately affects adherence to management recommendations will help guide the presentation of risk information in genetic counseling practice.


Assuntos
Predisposição Genética para Doença , Testes Genéticos , Melanoma/genética , Memória , Humanos , Estudos Prospectivos , Fatores de Risco
16.
Psychooncology ; 22(2): 276-89, 2013 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-23382133

RESUMO

OBJECTIVE: CDKN2A/p16 mutations confer 76% lifetime risk of melanoma and up to 17% lifetime risk of pancreatic cancer. Our objective was to determine the short- and long-term impact of CDKN2A/p16 genetic counseling and test reporting on psychological distress, cancer worry, and perceived costs and benefits of testing. METHODS: Prospective changes in anxiety, depression, and cancer worry following CDKN2A/p16 counseling and test reporting were evaluated at multiple assessments over 2 years among 60 adult members of melanoma-prone families; 37 participants completed the 2-year follow-up. Quantitative and qualitative assessments of the costs and benefits of testing were carried out. Outcomes were evaluated among unaffected noncarriers (n = 27), unaffected carriers (n = 15), and affected carriers (n = 18). RESULTS: Reported anxiety and depression were low. For carriers and noncarriers, anxiety decreased significantly throughout the 2-year period, whereas depression and melanoma worry showed short-term decreases. Worry about pancreatic cancer was low and decreased significantly. In all groups, test-related distress and uncertainty were low, regret was absent, and positive experiences were high. All participants (>93% at each assessment) reported at least one perceived benefit of genetic testing; only 15.9% listed any negative aspect. Carriers reported increased knowledge about melanoma risk and prevention (78.3%) and increased prevention and screening behaviors for self and family (65.2%). Noncarriers reported increased knowledge (95.2%) and emotional benefits (71.4%). CONCLUSION: Among US participants familiar with their hereditary melanoma risk through prior epidemiological research participation, CDKN2A/p16 genetic testing provides multiple perceived benefits to both carriers and noncarriers without inducing distress in general or worry about melanoma or pancreatic cancer.


Assuntos
Ansiedade/psicologia , Depressão/psicologia , Genes p16 , Aconselhamento Genético/psicologia , Testes Genéticos , Melanoma/psicologia , Neoplasias Pancreáticas/psicologia , Adulto , Feminino , Predisposição Genética para Doença/psicologia , Humanos , Estudos Longitudinais , Masculino , Melanoma/genética , Pessoa de Meia-Idade , Neoplasias Pancreáticas/genética , Estudos Prospectivos , Estados Unidos
17.
BMC Health Serv Res ; 13: 279, 2013 Jul 20.
Artigo em Inglês | MEDLINE | ID: mdl-23870420

RESUMO

BACKGROUND: The strong association between family history and prostate cancer (PCa) suggests a significant genetic contribution, yet specific highly penetrant PCa susceptibility genes have not been identified. Certain single-nucleotide-polymorphisms have been found to correlate with PCa risk; however uncertainty remains regarding their clinical utility and how to best incorporate this information into clinical decision-making. Genetic testing is available directly to consumers and both patients and healthcare providers are becoming more aware of this technology. Purchasing online allows patients to bypass their healthcare provider yet patients may have difficulty interpreting test results and providers may be called upon to interpret results. Determining optimal ways to educate both patients and providers, and strategies for appropriately incorporating this information into clinical decision-making are needed. METHODS: A mixed-method study was conducted in Utah between October 2011 and December 2011. Eleven focus group discussions were held and surveys were administered to 23 first-degree relatives of PCa patients living in Utah and 24 primary-care physicians and urologists practicing in Utah to present specific information about these assessments and determine knowledge and attitudes regarding health implications of using these assessments. RESULTS: Data was independently coded by two researchers (relative Kappa = .88; provider Kappa = .77) and analyzed using a grounded theory approach. Results indicated differences in attitudes and behavioral intentions between patient and provider. Despite the test's limitations relatives indicated interest in genetic testing (52%) while most providers indicated they would not recommend the test for their patients (79%). Relatives expected providers to interpret genetic test results and use results to provide personalized healthcare recommendations while the majority of providers did not think the information would be useful in patient care (92%) and indicated low-levels of genetic self-efficacy. CONCLUSIONS: Although similarities exist, discordance between provider and patient attitudes may influence the effective translation of novel genomic tests into clinical practice suggesting both patient and provider perceptions and expectations be considered in development of clinical decision-support tools.


Assuntos
Testes Genéticos , Conhecimentos, Atitudes e Prática em Saúde , Médicos de Atenção Primária/psicologia , Neoplasias da Próstata/genética , Idoso , Grupos Focais , Predisposição Genética para Doença , Pesquisas sobre Atenção à Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Utah
18.
Contemp Clin Trials ; 131: 107276, 2023 08.
Artigo em Inglês | MEDLINE | ID: mdl-37393004

RESUMO

BACKGROUND: Children of parents who had melanoma are more likely to develop skin cancer themselves owing to shared familial risks. The prevention of sunburns and promotion of sun-protective behaviors are essential to control cancer among these children. The Family Lifestyles, Actions and Risk Education (FLARE) intervention will be delivered as part of a randomized controlled trial to support parent-child collaboration to improve sun safety outcomes among children of melanoma survivors. METHODS: FLARE is a two-arm randomized controlled trial design that will recruit dyads comprised of a parent who is a melanoma survivor and their child (aged 8-17 years). Dyads will be randomized to receive FLARE or standard skin cancer prevention education, which both entail 3 telehealth sessions with an interventionist. FLARE is guided by Social-Cognitive and Protection Motivation theories to target child sun protection behaviors through parent and child perceived risk for melanoma, problem-solving skills, and development of a family skin protection action plan to promote positive modeling of sun protection behaviors. At multiple assessments through one-year post-baseline, parents and children complete surveys to assess frequency of reported child sunburns, child sun protection behaviors and melanin-induced surface skin color change, and potential mediators of intervention effects (e.g., parent-child modeling). CONCLUSION: The FLARE trial addresses the need for melanoma preventive interventions for children with familial risk for the disease. If efficacious, FLARE could help to mitigate familial risk for melanoma among these children by teaching practices which, if enacted, decrease sunburn occurrence and improve children's use of well-established sun protection strategies.


Assuntos
Sobreviventes de Câncer , Melanoma , Neoplasias Cutâneas , Queimadura Solar , Humanos , Queimadura Solar/prevenção & controle , Queimadura Solar/tratamento farmacológico , Protetores Solares/uso terapêutico , Predisposição Genética para Doença , Melanoma/prevenção & controle , Melanoma/psicologia , Neoplasias Cutâneas/prevenção & controle , Neoplasias Cutâneas/psicologia , Comportamentos Relacionados com a Saúde , Estilo de Vida , Ensaios Clínicos Controlados Aleatórios como Assunto
19.
Health Psychol ; 41(4): 291-300, 2022 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-35201803

RESUMO

OBJECTIVE: Stress associated with global health threats such as the coronavirus disease 2019 (COVID-19) pandemic and related containment efforts may be associated with significant sleep disruption. Stress-related sleep disturbance is an established transdiagnostic risk factor; thus, identifying associations with coping strategies may inform future intervention efforts. The current study examined secondary control-oriented coping strategies, including positive reappraisal, which may be particularly effective in the context of stressors characterized by high uncertainty and low controllability such as a pandemic. METHOD: The current study (total N = 227 undergraduate students, predominantly female) examined the associations among primary and secondary control-oriented coping strategies, positive and negative affect (PA, NA), and the development of acute sleep disturbance in the month after the declaration of the COVID-19 pandemic. Control of prepandemic reported sleep disturbance allowed for prospective analyses of pandemic-related change. RESULTS: Participants reported high levels of stress due to the pandemic onset, including difficulties with time management, difficulties with work or school, and worry about the future. Reappraisal and acceptance were both associated with higher concurrent PA, lower NA, and less increase in sleep disturbance; however, positive reappraisal was the only coping strategy that predicted unique variance in increased sleep disturbance. CONCLUSIONS: Current findings add to our understanding of stress adaptation in response to stressors characterized by high severity, high uncertainty, and low controllability, such as the COVID-19 pandemic, and suggest that positive reappraisal and PA may foster resilience to stress-related sleep disturbance. (PsycInfo Database Record (c) 2022 APA, all rights reserved).


Assuntos
COVID-19 , Pandemias , Adaptação Psicológica , Feminino , Humanos , Estudos Prospectivos , SARS-CoV-2 , Sono
20.
Genet Med ; 12(12): 823-38, 2010 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-21045708

RESUMO

PURPOSE: Genetic testing of minors is controversial, as ethical considerations depend on multiple aspects of the particular disease and familial context. For melanoma, there is a well-established and avoidable environmental influence and a documented benefit of early detection. METHODS: We surveyed 61 CDKN2A/p16 mutation-tested adults from two kindreds about their attitudes toward genetic testing of minors immediately posttesting and 2 years later. RESULTS: Overall, 86.9% expressed support of melanoma genetic testing of minors, with the importance of risk awareness (77.4%) and the likelihood of improved prevention and screening behaviors (69.8%) as the most frequently cited potential benefits. Among mutation carriers, 82.6% wanted genetic testing for their own children. These preferences remained stable over a 2-year period. Most respondents (62.3%) favored complete involvement of their children in genetic counseling and test reporting; 19.7% suggested that children be tested but not informed of the results. Concerns about inducing psychological distress or compromising children's decision autonomy were infrequently cited. Testing preferences did not vary by respondent age, gender, or melanoma history. CONCLUSION: Respondents strongly supported melanoma genetic testing of minors, with most citing improved health behavior as a likely outcome. We discuss options for melanoma genetic counseling and testing of minors.


Assuntos
Inibidor p16 de Quinase Dependente de Ciclina/genética , Testes Genéticos/estatística & dados numéricos , Menores de Idade , Consentimento dos Pais , Preferência do Paciente/estatística & dados numéricos , Adulto , Idade de Início , Idoso , Idoso de 80 Anos ou mais , Feminino , Seguimentos , Aconselhamento Genético , Predisposição Genética para Doença , Heterozigoto , Humanos , Masculino , Melanoma/diagnóstico , Melanoma/epidemiologia , Melanoma/genética , Pessoa de Meia-Idade , Consentimento dos Pais/estatística & dados numéricos , Neoplasias Cutâneas/diagnóstico , Neoplasias Cutâneas/epidemiologia , Neoplasias Cutâneas/genética , Adulto Jovem
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