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OBJECTIVE: To broaden the currently limited reach of genomic innovations, research is needed to understand how psychosocial and cultural factors influence reactions to genetic testing in diverse subgroups. Cancer fatalism is important in cancer prevention and deserves theoretical and empirical attention in the context of genomics and behavior change. METHODS: The current study employed data from a randomized controlled trial (N = 593) offering skin cancer genetic testing (using the melanocortin-1 receptor [MC1R] gene) in primary care in Albuquerque, New Mexico, USA. We examined interrelations of cancer fatalism with demographics, general health beliefs, perceived risk, perceived control, sun protection and skin screening behaviors and cancer worry in the skin cancer context stratified across Hispanic versus non-Hispanic ethnicity, and examined cancer fatalism as a moderator of intervention effects on study primary outcomes, including 3-month sun protection, cancer worry and perceived risk. RESULTS: Cancer fatalism was significantly related to the perception of control over skin cancer risk behaviors (ps ≤ 0.01) and demographics (ethnicity, education, health literacy; ps < 0.05), but not consistently related to general health beliefs or risk perception. Cancer fatalism did not moderate intervention effects on primary outcomes, except those with higher cancer fatalism randomized to intervention had higher levels of 3-month cancer worry (p = 0.019). CONCLUSIONS: These findings will guide future work considering the role of cancer fatalism in use of genomic technologies in the general population. This work anticipates strategies required to address cancer fatalism as translational genomics becomes more commonly available to diverse general population subgroups.
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Conhecimentos, Atitudes e Prática em Saúde , Neoplasias Cutâneas , Humanos , Neoplasias Cutâneas/genética , Neoplasias Cutâneas/prevenção & controle , Neoplasias Cutâneas/psicologia , Hispânico ou Latino/psicologia , Testes Genéticos , Atenção Primária à SaúdeRESUMO
Although there is a higher incidence of melanoma among non-Hispanic White individuals, melanoma is diagnosed at more advanced stages and associated with worse survival rates among individuals with skin of color (SOC). The proportions of melanoma subtypes differ across racial groups, with acral lentiginous melanoma and mucosal melanoma representing higher proportions of melanoma diagnoses in individuals with SOC compared to White individuals. The recognition of distinct differences in anatomic locations and dermatoscopic patterns may facilitate the appropriate differentiation of physiologic from pathologic pigmentation. The first article of this continuing medical education series will focus on the epidemiology and clinical presentation of melanoma in individuals with SOC, with the aim of improving early diagnoses and clinical outcomes.
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Melanoma , Neoplasias Cutâneas , Humanos , Pigmentação da Pele , Dermoscopia , Melanoma/diagnóstico , Melanoma/epidemiologia , Melanoma/patologia , Neoplasias Cutâneas/diagnóstico , Neoplasias Cutâneas/epidemiologia , Neoplasias Cutâneas/patologia , Pele/patologiaRESUMO
Despite decreased susceptibility, darker skin individuals who develop melanoma have worse survival. This disparity in melanoma mortality is the largest for any cancer, and partly driven by a lack of patient education materials targeted to darker skin populations in whom acral lentiginous melanoma (ALM) is the most common subtype. To address this communication disparity, the current study reports a multi-phase design process that leverages crowdsourcing and message testing to develop ALM-focused patient education materials for darker skin populations. Crowdsourced design was utilized to develop a pool of designs (phase 1), the pool was narrowed and thematically analyzed (phase 2), and select designs were evaluated via a message experiment (N = 1877). For darker skin populations, designs that depicted people enhanced knowledge of ALM through message memorability. The current study engages melanoma disparities by providing ALM patient education materials for darker skin populations vetted via a multi-phase process.
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Crowdsourcing , Melanoma , Neoplasias Cutâneas , Humanos , Prognóstico , Melanoma Maligno CutâneoRESUMO
BACKGROUND: Lynch Syndrome is among the most common hereditary cancer syndromes and requires ongoing cancer surveillance, repeated screenings and potential risk-reducing surgeries. Despite the importance of continued surveillance, there is limited understanding of patient experiences after initial testing and counseling, the barriers or facilitators they experience adhering to recommendations, and how they want to receive information over time. METHODS: A cross-sectional, observational study was conducted among 127 probands and family members who had received genetic testing for Lynch Syndrome. We conducted semi-structured interviews to determine proband and family member experiences after receiving genetic testing results including their surveillance and screening practices, information needs, and interactions with health care providers. Both closed-ended and open-ended data were collected and analyzed. RESULTS: Both probands (96.9%) and family members (76.8%) received recommendations for follow-up screening and all probands (100%) and most family members (98.2%) who tested positive had completed at least one screening. Facilitators to screening included receiving screening procedure reminders and the ease of making screening and surveillance appointments. Insurance coverage to pay for screenings was a frequent concern especially for those under 50 years of age. Participants commented that their primary care providers were often not knowledgeable about Lynch Syndrome and surveillance recommendations; this presented a hardship in navigating ongoing surveillance and updated information. Participants preferred information from a knowledgeable health care provider or a trusted internet source over social media or support groups. CONCLUSIONS: Probands and family members receiving genetic testing for Lynch Syndrome generally adhered to initial screening and surveillance recommendations. However, factors such as insurance coverage and difficulty finding a knowledgeable healthcare provider presented barriers to receiving recommended follow-up care. There is an opportunity to improve care through better transitions in care, procedures to keep primary care providers informed of surveillance guidelines, and practices so that patients receive reminders and facilitated appointment setting for ongoing screening and surveillance at the time they are due.
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Skin cancer has become increasingly common among young adults; however, this population does not consistently adhere to recommended methods for preventing the disease. Interventions in college settings have relied on appearance-focused appeals and have not been able to examine the cumulative effect of multiple behavior change and skin cancer risk communication strategies. The goal of the current study was to examine the unique and combined impacts of personalized ultraviolet (UV) radiation photographs, genetic testing for skin cancer risk, and general skin cancer prevention education. Participants were randomly assigned to one of four conditions: (1) skin cancer prevention education, (2) education + UV photo, (3) education + genetic testing, and (4) education + UV photo + genetic testing. Self-reported sun protection, tanning, and sunburn were assessed at baseline, immediately post-intervention, and 1 month post-intervention. The findings indicated benefits of the interventions to skin cancer prevention behaviors in the overall sample; however, the combined (UV photo + genetic testing) intervention had the most consistent positive effects on behaviors. Intervention effects were distinct across seasons. These results suggest that interventions containing multiple skin cancer risk communication strategies hold promise in benefitting health-promoting behavior changes in an at-risk, young adult population.Trial Registration Number: NCT03979872; Registered 6/5/2019.
Assuntos
Neoplasias Cutâneas , Queimadura Solar , Humanos , Adulto Jovem , Queimadura Solar/prevenção & controle , Raios Ultravioleta/efeitos adversos , Educação em Saúde/métodos , Comportamentos Relacionados com a Saúde , Neoplasias Cutâneas/genética , Neoplasias Cutâneas/prevenção & controle , Fotografação , Protetores Solares/uso terapêuticoRESUMO
OBJECTIVE: To describe four approaches to qualitative analysis in order to provide a pragmatic, application-oriented guide to their use in research focused on children and their families. METHODS: Four commonly used approaches to qualitative analysis-framework analysis, rapid qualitative analysis, content analysis, and reflexive thematic analysis-are described and compared, including their analytic strategies, tips for use, terminology, and application to a hypothetical example. RESULTS: A pragmatic guide to each method is provided as well as examples of how each analytic approach could be utilized to analyze the same dataset. CONCLUSIONS: A variety of approaches to qualitative analysis are available to both novice and experienced qualitative researchers. The approach selected from the options presented in this article will depend on numerous factors, such as the clinical problem being explored, research context, aims, objectives, research questions, and resources available such as time and funds, and the qualitative expertise of the team.
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Projetos de Pesquisa , Pesquisadores , Criança , Humanos , Pesquisa QualitativaRESUMO
BACKGROUND: Diagnoses of both melanoma and nonmelanoma skin cancers are becoming increasingly common among young adults. Interventions in this population are a priority because they do not consistently follow skin cancer prevention recommendations. OBJECTIVES: The goal of the current study was to examine college students' perspectives on and experience with receiving a skin cancer prevention intervention that provided personalized skin cancer risk feedback in the form of an ultraviolet (UV) photograph, the results of genetic testing for common skin cancer risk variants, and/or general skin cancer prevention education. METHODS: Qualitative interviews were conducted with 38 college students who received a skin cancer prevention intervention. The interview covered students' feelings about their personal skin cancer risk information, the impact of the intervention on their skin cancer risk perceptions, actions or intentions to act with regard to their sun protection practices and feedback for improvement of the intervention content or delivery. RESULTS: Participants reported that different intervention components contributed to increased awareness of their sun protection behaviours, shifts in cognitions about and motivation to implement sun protection strategies and reported changes to their skin cancer prevention strategies. CONCLUSION: Our findings indicate that college students are interested in and responsive to these types of multicomponent skin cancer preventive interventions. Further, students demonstrate some motivation and intentionality toward changing their skin cancer risk behaviour in the short term. PATIENT OR PUBLIC CONTRIBUTION: Participants involved in this study were members of the public (undergraduate students) who were involved in a skin cancer prevention intervention, then participated in semistructured interviews, which provided the data analysed for this study.
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Melanoma , Neoplasias Cutâneas , Adulto Jovem , Humanos , Universidades , Neoplasias Cutâneas/prevenção & controle , Melanoma/prevenção & controle , Estudantes , Motivação , Comportamentos Relacionados com a SaúdeRESUMO
BACKGROUND: College students participate in high levels of tanning, a skin cancer risk behavior due to ultraviolet radiation exposure, yet little is known about Asian college students' behavior. This study examined the relationship between tanning attitudes, acculturation to the USA (cultural assimilation), and tanning behavior. METHOD: An online survey was used to recruit 211 Asian college students in the northeastern USA (47.4% born outside of the USA) to respond to questions about recent tanning behavior, sun protection strategies, attitudes about tanning, and acculturation to the USA. RESULTS: Attitudes about tanning, particularly desire for a darker skin tone and social norms, along with acculturation to the USA, were predictive of intentional tanning. The sample reported high levels of sun protection, which was associated with low acculturation. CONCLUSION: The significant role of acculturation in this study indicates that it may be a useful factor to include in future tanning intervention studies of relevant populations.
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Neoplasias Cutâneas , Banho de Sol , Aculturação , Comportamentos Relacionados com a Saúde , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Neoplasias Cutâneas/prevenção & controle , Estudantes , Protetores Solares , Raios UltravioletaRESUMO
Cancer survivors are at higher risk of developing HPV-associated cancers later in life, yet their HPV vaccination rates remain lower than the general population. Improving HPV vaccination uptake among survivors is essential to preventing second malignancies. We interviewed HPV vaccine eligible adolescent and young adult (AYA) cancer survivors (18-26 years) and caregivers of HPV vaccine eligible childhood cancer survivors approaching the AYA age range (9-17 years) about their HPV vaccine experiences and preferences as informed by the HPV Vaccination Roundtable Best Practices. Interviews (N = 20) were recorded, transcribed, and analyzed using interpretive description. Of AYA survivors (n = 10), 50% had received at least one HPV vaccine dose. Of caregivers (n = 10), 30% reported their child had received at least one HPV vaccine dose. Three distinct categories emerged including (1) HPV vaccine knowledge, (2) HPV vaccination recommendation preferences, and (3) HPV vaccination reminder preferences. The first two categories were oncology focused. Participants lacked knowledge regarding HPV vaccine safety and applicability due to their complex cancer history. Most participants strongly preferred that their oncologist provide an HPV vaccine recommendation. The third category was mixed, with some participants preferring oncology-based HPV vaccine reminders while others preferred primary care-based reminders. Almost all participants preferred digital reminders (e.g., text messages). Our results suggest that oncologists play an essential role in recommending the HPV vaccine and providing information to assist survivors and caregivers with vaccine decision-making. Additionally, HPV vaccination uptake among pediatric and childhood and AYA survivors could be improved through the use of tailored, electronically delivered vaccine reminders.
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Sobreviventes de Câncer , Neoplasias , Infecções por Papillomavirus , Vacinas contra Papillomavirus , Adolescente , Cuidadores , Criança , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Neoplasias/epidemiologia , Neoplasias/prevenção & controle , Infecções por Papillomavirus/prevenção & controle , Vacinas contra Papillomavirus/uso terapêutico , Vacinação , Adulto JovemRESUMO
PURPOSE: Survivorship care plans (SCPs) are used to facilitate communication between oncology and primary care providers (PCPs) after cancer treatment and to assist cancer survivors with healthcare decisions. We evaluated pediatric oncology providers' experiences creating and delivering SCPs. We also evaluated PCPs' opinions of SCPs. METHODS: Together, oncology nurses and oncologists created individualized SCPs for leukemia patients treated at a children's hospital in Utah, with nurses in charge of inputting the majority of SCP content. We surveyed providers after each SCP was completed. We also mailed SCPs to PCPs with a survey on SCP content and their knowledge and comfort level caring for cancer survivors. Descriptive statistics were used to summarize survey content. RESULTS: A total of 6 nurses and 8 oncologists created 21 SCPs. On average, nurses assisted with 3.5 SCPs and spent 209 min (range 100-600 min) on completing their sections of each SCP, whereas oncologists assisted with 2.6 SCPs and spent 47.4 min (range 15-120). For most SCPs, there was agreement that they should be shared with PCPs (nurse surveys 71.4%, oncologist surveys 100%). Of the 15 participating PCPs, only 28% felt prepared to manage long-term effects in pediatric cancer survivors. They agreed that the SCP would improve communication with their patient's oncologist (80%) and their knowledge for future care (100%). CONCLUSIONS: SCPs require substantial clinician time to create, but are seen as useful by PCPs. PCPs require specific guidelines and resources concerning ongoing care for pediatric cancer survivors.
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Sobreviventes de Câncer/estatística & dados numéricos , Pessoal de Saúde/normas , Neoplasias/mortalidade , Adolescente , Criança , Pré-Escolar , Feminino , Humanos , Lactente , Recém-Nascido , Masculino , Neoplasias/terapia , Projetos Piloto , Inquéritos e Questionários , SobrevivênciaRESUMO
Ultraviolet radiation (UVR) exposure is a primary risk factor for the development of melanoma. However, adults and adolescents often do not engage in preventive behaviors to reduce UVR exposure. Rural residents may be at higher risk for melanoma due to lower use of sun protection strategies, which increases their overall UVR exposure compared to those who live in urban areas. The purpose of this study was to evaluate differences in UVR exposure between rural and urban residents in a geographic area with high incidence of melanoma. Children (aged 8-17 years) and adults (≥ 18 years) from rural and urban areas of Utah were asked to wear a UVR monitoring device for 14 days. The sample included 97 children and 97 adults. Data was collected from June to October 2018. Non-parametric Mann-Whitney tests and quantile regression were used to compare UVR exposure levels between urban and rural participants, separately for adults and children. For adults, rural residence significantly increased total UVR dose ( ß: 24.6; 95% CI 3.75, 42.74) and the UVR dose during peak UVR hours among participants with the highest UVR doses (ß: 16.3; 95% CI 17.4, 24.63). Rural children exhibited significantly higher UVR doses for peak UVR hours for the entire study period (ß: 4.14; 95% CI 0.83, 7.46) and on weekdays (ß: 0.39; 95% CI 0.05, 0.73). The findings from this study indicate that rural residents may receive higher levels of UVR exposure than urban residents, and that prevention efforts could be tailored to address these geographical differences.
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Melanoma/prevenção & controle , População Rural/estatística & dados numéricos , Neoplasias Cutâneas/prevenção & controle , Raios Ultravioleta/efeitos adversos , População Urbana/estatística & dados numéricos , Adolescente , Adulto , Criança , Humanos , Incidência , Masculino , Fatores de Risco , UtahRESUMO
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.
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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 CutâneoRESUMO
Individuals residing in U.S. frontier counties have limited access to dermatology care and higher melanoma mortality rates. Given these limitations, frontier residents rely disproportionately on skin self-examinations (SSE) for early detection of melanoma, though little is known about their SSE behaviors and barriers to conducting SSEs. The goal of the present study was to identify obstacles to SSE performance via a survey of adults (N = 107) living in a U.S. frontier county. Approximately 43% of participants were classified as inclined abstainers - individuals who intended to perform SSE, but failed to follow through. Compared to those who did follow through, inclined abstainers were more likely to be hindered by twelve barriers, including forgetting, letting other tasks get in the way of SSE, and struggling to identify a good time or routine for SSE performance. The barriers to action for these inclined abstainers are modifiable - for example, not remembering to do it - and well positioned for a behavioral intervention.
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Autoexame/psicologia , Neoplasias Cutâneas/diagnóstico , Adulto , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estados UnidosRESUMO
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.
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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 JovemRESUMO
OBJECTIVE: The incidence of melanoma is increasing. Other than limiting UV exposure, few factors prevent or reduce the risk of melanoma. The aim of this study is to evaluate the relationship between vitamin D intake and melanoma risk in the Prostate, Lung, Colorectal, and Ovarian (PLCO) cancer screening trial. METHODS: A secondary data analysis was performed on PLCO data. More than 1,300 participants developed melanoma. RESULTS: Melanoma risk may be increased among men within the highest quartile of vitamin D intake (HR 1.27, 95% CI 0.99, 1.61). Women in the highest quartile of vitamin D intake had a decreased risk of invasive melanoma (HR 0.63, 95% CI 0.41, 0.96). Higher education and being white corresponded with deeper tumors (P < .001). CONCLUSION: High reported vitamin D intake resulted in an increased risk of melanoma among men. Vitamin D intake yielded a protective effect against invasive melanoma in women.
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Detecção Precoce de Câncer/métodos , Melanoma/etiologia , Melanoma/prevenção & controle , Vitamina D/administração & dosagem , Vitamina D/efeitos adversos , Idoso , Estudos de Casos e Controles , Feminino , Humanos , Masculino , Melanoma/metabolismo , Melanoma/patologia , Pessoa de Meia-Idade , Invasividade Neoplásica , Fatores Sexuais , Raios Ultravioleta/efeitos adversos , Vitamina D/metabolismoRESUMO
PURPOSE: The purpose of the current study was to evaluate differences in reported use of sun protection, tanning behaviors, skin cancer-related knowledge, and perceived risk between rural and urban high school students in a geographic area with high rates of melanoma. METHODS: A total of 1,570 high school students (56.8% female) from urban (6 schools) and rural (7 schools) geographic areas in Utah completed questionnaires assessing sun protection and tanning behaviors, skin cancer-related knowledge, and perceived risk for skin cancer. Analyses examined potential differences in these outcomes between rural and urban students and by gender. RESULTS: Compared to students in urban areas, those in rural areas had lower odds of wearing sunscreen (OR 0.71; 95% CI 0.53, 0.95; p = 0.022), re-applying sunscreen (OR 0.61; 95% CI 0.74, 1.02; p = 0.002), wearing long-sleeved shirts (OR 0.63 95% CI 0.46, 0.86; p = 0.004), and seeking shade (OR 0.67; 95% CI 0.50, 0.88; p = 0.005). CONCLUSIONS: Rural students reported less adequate use of sun protection than urban students. Rural male students reported lower knowledge scores compared to urban males. Future skin cancer prevention efforts targeting rural high schoolers are warranted.
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Conhecimentos, Atitudes e Prática em Saúde , População Rural , Neoplasias Cutâneas/prevenção & controle , Neoplasias Cutâneas/psicologia , Estudantes/psicologia , População Urbana , Adolescente , Feminino , Humanos , Masculino , Risco , Instituições Acadêmicas , Banho de Sol , Protetores Solares/administração & dosagem , Inquéritos e QuestionáriosRESUMO
In the first article in this continuing medical education series we review controversies and uncertainties relating to the epidemiology and initial diagnosis of localized cutaneous melanoma (ie, stage 0, I, or II). Many of these issues are unsettled because of conflicting evidence. Melanoma incidence appears to be increasing, yet its basis has not been fully explained. Despite the advantages of early detection, the US Preventive Services Task Force does not recommend skin screening for the general population. Occasionally, biopsy specimens of melanoma will show histologic regression, but the prognostic importance of this phenomenon is uncertain. Some practitioners recommend obtaining a sentinel lymph node biopsy specimen for thin melanomas showing regression, although this histologic finding is not part of the staging system for thin melanomas. Our goal is to provide the clinician who cares for patients with (or at risk for) melanoma with up-to-date contextual knowledge to appreciate the multiple sides of each controversy so that they will be better informed to discuss these issues with their patients and their families.
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Melanoma/epidemiologia , Melanoma/patologia , Neoplasias Cutâneas/epidemiologia , Neoplasias Cutâneas/patologia , Detecção Precoce de Câncer , Humanos , Incidência , Regressão Neoplásica EspontâneaRESUMO
OBJECTIVE: To provide a primer on conducting and analyzing mixed methods research studies, and to provide guidance on the write-up of mixed methods research. METHODS: A question and answer format is used to provide an overview of mixed methods research study designs, tasks and considerations related to conducting and analyzing mixed methods studies, and recommendations for the write-up of results for mixed methods studies. RESULTS: Individuals who conduct mixed methods research are encouraged to delineate the quantitative, qualitative, and mixed methods features of the research and how these features fit with the overall study questions. Research teams will benefit from including individuals with expertise in qualitative, quantitative, and mixed methods research. Data integration should be a central component to the analysis and write-up of mixed methods research. CONCLUSIONS: Increasing the use of mixed methods research in the field of pediatric psychology will contribute to advances in observational studies with children and families, intervention development and evaluation, and creation of new tools and assessments that aim to optimize child and family health outcomes.
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Pesquisa Biomédica/métodos , Pediatria/métodos , Psicologia da Criança/métodos , Pesquisa Qualitativa , Projetos de Pesquisa , Criança , HumanosRESUMO
BACKGROUND: As survivorship care plan (SCP) use among childhood cancer survivors and their families has not been extensively researched, we report on their experiences with receiving an SCP after the completion of therapy. METHODS: Eligible patients had acute lymphoblastic leukemia, completed therapy, and had no evidence of disease at enrollment. Patients aged 7 or older (N = 13) and at least one parent (N = 23 for 20 total patients) were surveyed and completed assessments at enrollment (Time 1, T1), SCP delivery (Time 2, T2), and follow-up (Time 3, T3) (retention 90.9%). Surveys assessed the delivery process and SCP format. McNemar tests were used to assess change from T2-T3. RESULTS: Satisfaction with the SCP was generally high among parents. At T1 the majority of parents (69.6%) thought the SCP should be delivered after treatment but by T3 most preferred the plan to be delivered before the end of treatment (60.9%). While 95.7% of parents intended to share their child's SCP with another provider, family, or school at T2, only 60.9% had done so by T3 (P < 0.01). At both T2 and T3, 100% of parents agreed that the SCP would help make decisions about their child's future health care. Most patients at T3 (83.3%) felt they had learned something new from their SCP. CONCLUSIONS: Pediatric oncology patients and families feel SCPs are useful and will help them make decisions about health care in the future.