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INTRODUCTION: Carotid revascularization procedures are effective in stroke prevention in appropriately selected patients. We sought to understand the effects of the carotid intervention on cognitive function in a well-defined cohort of prospectively recruited patients. METHODS: A total of 170 consecutive patients undergoing carotid intervention for severe carotid stenosis were recruited. Patients received neuropsychometric testing preintervention, and at 1, 6, and 12 months postoperative. Patients were screened with the Mini-Mental State Examination. Rey Auditory Verbal Learning test (RAVLT) test was the primary outcome measure and multiple cognitive tests were used to evaluate executive function. Paired t test and McNemar test were performed to compare age-adjusted and education-adjusted postoperative scores at the individual time point with the preoperative scores. RESULTS: Our patients had a high prevalence of cardiovascular risks and 51.2% of whom were symptomatic. The usages of statin and antiplatelet were high (88.8% and 69.4%, respectively). A total of 140 patients had 1 or more postoperative neuropsychometric tests in addition to their preoperative tests were included. The average RAVLT preoperative score was lower ( z =-0.79, SD=1.3, confidence interval: -1 to -0.53) than the age-adjusted norm. We observed a significant improvement in RAVLT memory scores at 1 and 6 months postoperative compared with preoperative. We also observed significant improvement in multiple executive functions measures up to 12 months postoperative. The improvement on patients with preoperative stroke symptoms was less consistent. CONCLUSIONS: This prospective study showed that carotid intervention improved memory and executive function in patients with the severe carotid occlusive disease. It highlights the cognitive benefit of the carotid intervention in appropriately selected patients.
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Estenose das Carótidas , Transtornos Cognitivos , Endarterectomia das Carótidas , Acidente Vascular Cerebral , Estenose das Carótidas/complicações , Estenose das Carótidas/cirurgia , Cognição , Transtornos Cognitivos/epidemiologia , Humanos , Testes Neuropsicológicos , Estudos Prospectivos , Stents , Resultado do TratamentoRESUMO
BACKGROUND: Intensified therapy with platinum-based regimens for pediatric brain tumors has dramatically increased the number of pediatric brain tumor survivors (PBTS) but frequently causes permanent sensorineural hearing loss (SNHL). Although neurocognitive decline in PBTS is known to be associated with radiation therapy (RT), SNHL represents a potential additional contributor whose long-term impact has yet to be fully determined. METHODS: The neurocognitive impact of significant SNHL (Chang scale ≥ 2b) in PBTS was assessed through a retrospective cohort study of audiograms and neurocognitive testing. Scores for neurocognitive domains and subtest task performance were analyzed to identify specific strengths and weakness for PBTS with SNHL. RESULTS: In a cohort of PBTS (n = 58) treated with platinum therapy, significant SNHL was identified in more than half (55%, n = 32/58), of which the majority required hearing aids (72%, 23/32). RT exposure was approximately evenly divided between those with and without SNHL. PBTS were 6.7 ± 0.6 and 11.3 ± 0.7 years old at diagnosis and neurocognitive testing, respectively. In multivariate analyses adjusted for RT dose, SNHL was independently associated with deficits in intelligence, executive function, and verbal reasoning skills. Subtests revealed PBTS with SNHL to have poor learning efficiency but intact memory and information acquisition. CONCLUSIONS: SNHL in PBTS increases the risk for severe therapy-related intellectual and neurocognitive deficits. Additional prospective investigation in malignant brain tumors is necessary to validate these findings through integration of audiology and neurocognitive assessments and to identify appropriate strategies for neurocognitive screening and rehabilitation specific to PBTS with and without SNHL.
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Neoplasias Encefálicas/tratamento farmacológico , Perda Auditiva Neurossensorial/induzido quimicamente , Perda Auditiva Neurossensorial/fisiopatologia , Transtornos Neurocognitivos/diagnóstico , Logro , Audiometria , Neoplasias Encefálicas/complicações , Criança , Estudos de Coortes , Feminino , Humanos , Inteligência , Masculino , Memória , Transtornos Neurocognitivos/fisiopatologia , Testes Neuropsicológicos , Estudos RetrospectivosRESUMO
Visions for the future are a normal developmental process for adolescents and young adults (AYAs) with and without cancer, and these visions often include expectations of sexual and romantic relationships. AYA cancer survivors indicate reproductive health is an issue of great importance and more attention is needed in the health care setting throughout the cancer experience, beginning at diagnosis. Various practice guidelines are predominately focused on fertility; are intended to influence survivorship care plans; and do not encompass the broad scope of reproductive health that includes romantic partnering, friendships, body image, sexuality, sexual identity, fertility, contraception, and more. Although interventions to reduce reproductive health-related sequelae from treatment are best approached as an evolving process, practitioners are not certain of the priorities of these various reproductive health content areas. Strategies incongruent with the reproductive health priorities of AYAs will likely thwart adequate follow-up care and foster feelings of isolation from the treatment team. Research is needed to identify these priorities and ensure discussions of diverse content areas. This review explored various domains of reproductive health and emphasized how understanding the priorities of the AYA cancer cohort will guide future models of care.
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Prioridades em Saúde , Neoplasias/terapia , Saúde Reprodutiva , Adolescente , Adulto , Fatores Etários , Imagem Corporal/psicologia , Feminino , Preservação da Fertilidade/métodos , Preservação da Fertilidade/normas , Humanos , Casamento/psicologia , Neoplasias/epidemiologia , Neoplasias/psicologia , Guias de Prática Clínica como Assunto , Gravidez , Desenvolvimento Psicossexual , Adulto JovemRESUMO
Stroke is a pervasive and debilitating global health concern, necessitating innovative therapeutic strategies, especially during recovery. While existing literature often focuses on acute interventions, our study addresses the uniqueness of brain tissue during wound healing, emphasizing the chronic phase following the commonly used middle cerebral artery (MCA) occlusion model. Using clinically relevant endpoints in male and female mice such as magnetic resonance imaging (MRI) and plasma neurofilament light (NFL) measurement, along with immunohistochemistry, we describe injury evolution. Our findings document significant alterations in edema, tissue remodeling, and gadolinium leakage through MRI. Plasma NFL concentration remained elevated at 30 days poststroke. Microglia responses are confined to the region adjacent to the injury, rather than continued widespread activation, and boron-dipyrromethene (BODIPY) staining demonstrated the persistent presence of foam cells within the infarct. Additional immunohistochemistry highlighted sustained B and T lymphocyte presence in the poststroke brain. These observations underscore potentially pivotal roles played by chronic inflammation brought on by the lipid-rich brain environment, and chronic blood-brain barrier dysfunction, in the development of secondary neurodegeneration. This study sheds light on the enduring consequences of ischemic stroke in the most used rodent stroke model and provides valuable insights for future research, clinical strategies, and therapeutic development.
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AVC Isquêmico , Camundongos Endogâmicos C57BL , Animais , Masculino , Camundongos , Feminino , AVC Isquêmico/patologia , AVC Isquêmico/diagnóstico por imagem , AVC Isquêmico/metabolismo , AVC Isquêmico/sangue , Infarto da Artéria Cerebral Média/patologia , Modelos Animais de Doenças , Inflamação/patologia , Encéfalo/patologia , Encéfalo/metabolismo , Encéfalo/diagnóstico por imagem , Barreira Hematoencefálica/patologia , Barreira Hematoencefálica/metabolismo , Imageamento por Ressonância Magnética , Traumatismo por Reperfusão/patologia , Traumatismo por Reperfusão/metabolismo , Proteínas de NeurofilamentosRESUMO
PURPOSE: Young adult survivors of childhood cancer (YASCC) are an ever-growing cohort of survivors due to increasing advances in technology. Today, there is a shift of focus to not just ensuring survivorship but also the quality of survivorship, which can be assessed with standardized instruments. The majority of standardized health related quality of life (HRQoL) instruments, however, are non-specific to this age group and the unique late effects within YASCC populations. The purpose of this study was to investigate the relevance and accuracy of standardized HRQoL instruments used with YASCC. METHODS: In a previous study, HRQoL items from several instruments (SF-36, QLACS, QLS-CS) were examined for relevance with a population of YASCC. Participants (n = 30) from this study were recruited for a follow-up qualitative interview to expand on their perceptions of missing content from existing instruments. RESULTS: Respondents reported missing, relevant content among all three of the HRQoL instruments. Results identified three content areas of missing information: (1) Perceived sense of self, (2) Relationships, and (3) Parenthood. CONCLUSIONS: Existing HRQoL instruments do not take into account the progression and interdependence of emotional development impacted by a cancer diagnosis. The themes derived from our qualitative interviews may serve as a foundation for the generation of new items in future HRQoL instruments for YASCC populations. Further testing is required to examine the prevalence, frequency, and breadth of these items in a larger sample.
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Nível de Saúde , Neoplasias/psicologia , Psicometria/instrumentação , Qualidade de Vida , Inquéritos e Questionários/normas , Sobreviventes/psicologia , Adolescente , Adulto , Feminino , Humanos , Entrevistas como Assunto , Masculino , Pessoa de Meia-Idade , Pesquisa Qualitativa , Adulto JovemRESUMO
Rapid tissue donation (RTD) is an advancing oncology research procedure for collecting tumors, metastases, and unaffected tissue 2-6 h after death. Researchers can better determine rates of progression, response to treatment, and polymorphic differences among patients. Cancer patients may inquire about posthumous body donation for research to offer a personal contribution to research; however, there are barriers to recruiting for an RTD program. Physicians must reassure the patient that their treatment options and quality of care will not be compromised due to participating in RTD. In this commentary we discuss how theories of altruism may explain cancer patients' desire to participate in an RTD program, the ethical concerns of health care professionals and patients and the use of altruism as a recruitment strategy. We offer recommendations for examining the cultural and ethical climate of the institution prior to initiating such a program such as examining the relationship of healthcare professionals and patients, identifying ethical concerns, and examining ways to promote acceptance and buy-in across professionals, patients, and families.
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Altruísmo , Neoplasias/psicologia , Doadores de Tecidos/ética , Família/psicologia , Humanos , Relações Profissional-Paciente/ética , Fatores de Tempo , Doadores de Tecidos/psicologia , Obtenção de Tecidos e Órgãos/ética , Obtenção de Tecidos e Órgãos/métodosRESUMO
BACKGROUND: The lesbian, gay, bisexual, transgender, and queer/questioning (LGBTQ) community experiences health disparities. It is thus imperative that medical trainees receive training in the care of LGBTQ community. The objective of this study was to identify gaps in knowledge and comfort among medical school students in providing care for the LGBTQ community. METHODS: An online survey was administered to medical students at 3 institutions in the United States from December 2020 to March 2021. Using a Likert scale, the survey assessed attitudes, comfort, and knowledge in providing care for the LGBTQ community. The survey included questions for each specific LGBTQ population. Results were quantified using descriptive and stratified analyses, and an exploratory factor analysis was used to calculate attitude summary measure (ASM) scores. A total knowledge score was calculated, with higher values indicating greater knowledge. RESULTS: Among the 300 medical students who completed the survey, the majority were female (55.7%), White (54.7%), and heterosexual (64.3%). The majority of medical students felt comfortable (strongly agree/agree) participating in the care of lesbian (94.3%), gay (96.0%), and bisexual (96.3%) patients; this percentage dropped to 82.3% for non-binary and 71.3% for transgender patients. Only 27.0% of medical students reported confidence in their knowledge of health needs of transgender patients. LGBTQ self-identification, percent of core rotations completed in school, region of country, and friends and/or family who are part of the LGBTQ community were significantly associated with various ASM scores. Knowledge questions yielded high percentages of "neutral" responses, and medical students who identified as LGBTQ had significantly higher total knowledge scores. CONCLUSIONS: Overall, the surveyed medical students feel comfortable and willing to provide care for LGBTQ persons. But, there is limited knowledge about specific LGBTQ health needs. More education and training in the needs of transgender and non-binary patients, in particular, is indicated.
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Minorias Sexuais e de Gênero , Estudantes de Medicina , Pessoas Transgênero , Humanos , Masculino , Feminino , Estados Unidos , Comportamento Sexual , Atitude do Pessoal de SaúdeRESUMO
Individuals carrying deleterious germline mutations placing them at increased risk for hereditary cancer syndromes (high-risk consumers) often have a great deal of fear and concern over transmitting mutations to their offspring, particularly conditions which are autosomal dominant. Preimplantation genetic diagnosis (PGD) is a procedure that can detect certain germline cancer predisposing mutations present in embryos. The objective of this review was to assess high-risk consumers' knowledge and perceptions of PGD for hereditary cancers. A systematic literature review was conducted through PubMed, Wiley Interscience, PsychInfo, and Cochrane Library databases to identify all articles assessing consumer knowledge and attitudes of PGD for hereditary cancer syndromes. We assessed heterogeneity and the robustness of findings through additional analyses according to study location, hereditary cancer type, and sample size. Thirteen articles remained eligible after the application of specific criteria. Results show a general low level of knowledge about PGD for hereditary cancers, moderate rates of acceptability among high-risk groups, and high levels of need for information about PGD. Individuals in specific risk groups such as those with a personal or family history of hereditary breast and ovarian cancer (HBOC) syndrome or familial adenomatous polyposis (FAP) may benefit from educational information from healthcare professionals about the use of PGD.
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Predisposição Genética para Doença/genética , Conhecimentos, Atitudes e Prática em Saúde , Síndromes Neoplásicas Hereditárias/diagnóstico , Diagnóstico Pré-Implantação , Polipose Adenomatosa do Colo/diagnóstico , Polipose Adenomatosa do Colo/genética , Polipose Adenomatosa do Colo/prevenção & controle , Neoplasias da Mama/diagnóstico , Neoplasias da Mama/genética , Neoplasias da Mama/prevenção & controle , Informação de Saúde ao Consumidor , Interpretação Estatística de Dados , Feminino , Humanos , Mutação , Síndromes Neoplásicas Hereditárias/genética , Síndromes Neoplásicas Hereditárias/prevenção & controle , Neoplasias Ovarianas/diagnóstico , Neoplasias Ovarianas/genética , Neoplasias Ovarianas/prevenção & controle , Fatores de RiscoRESUMO
PURPOSE: Few studies examine the relevance of health-related quality of life (HRQOL) instruments for young adult survivors of childhood cancer (YASCC). This study compared the psychometric properties of two survivor-specific instruments, the Quality of Life-Cancer Survivor (QOL-CS) and Quality of Life in Adult Cancer Survivor (QLACS). METHODS: Data from 151 YASCC who enrolled in cancer/tumor registries of two medical centers were used. We examined construct validity by conducting confirmatory factor analysis using indices of chi-square statistic, comparative fit index, and root mean square error of approximation. We examined convergent/discriminant validity by comparing Pearson's correlation coefficients of homogeneous (e.g., physical functioning and pain) of both instruments versus heterogeneous domains (e.g., physical and psychological functioning). We assessed known-groups validity by examining the extent to which HRQOL differed by late effects and comorbid conditions and calculated relative validity (RV) defined as contrasting F-statistics of individual domains to the domain with the lowest F-statistic. Superior known-groups validity is observed if a domain of one instrument demonstrates a higher RV than other domains of the instruments. RESULTS: YASCC data cannot replicate the constructs both instruments intend to measure, suggesting poor construct validity. Correlations of between-homogeneous and between-heterogeneous domains of both instruments were not discernible, suggesting poor convergent/discriminant validity. Both instruments were equally able to differentiate HRQOL between YASCC with and without late effects and comorbid conditions, suggesting similar known-groups validity. CONCLUSIONS: Neither instrument is superior. Item response theory is suggested to select high-quality items from different instruments to improve HRQOL measure for YASCC.
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Neoplasias/psicologia , Qualidade de Vida , Inquéritos e Questionários/normas , Sobreviventes/psicologia , Adulto , Análise Fatorial , Feminino , Nível de Saúde , Humanos , Masculino , Psicometria , Adulto JovemRESUMO
We report on the case of a 2-year-old female, the youngest person ever to undergo ovarian tissue cryopreservation (OTC). This patient was diagnosed with a rare form of sickle cell disease, which required a bone-marrow transplant, and late effects included high risk of future infertility or complete sterility. Ethical concerns are raised, as the patient's mother made the decision for OTC on the patient's behalf with the intention that this would secure the option of biological childbearing in the future. Based on Beauchamp and Childress's principlism approach of respect for autonomy, nonmaleficence, beneficence, and justice, pursing OTC was ethically justified.
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Criopreservação , Tomada de Decisões/ética , Infertilidade Feminina/prevenção & controle , Mães , Ovário , Ética Baseada em Princípios , Direitos Sexuais e Reprodutivos/ética , Anemia Falciforme/cirurgia , Beneficência , Transplante de Medula Óssea/efeitos adversos , Pré-Escolar , Criopreservação/ética , Análise Ética , Feminino , Humanos , Infertilidade Feminina/etiologia , Núcleo Familiar , Autonomia Pessoal , Justiça SocialRESUMO
Reproductive health consistently ranks as one of the most important issues cited by adolescent and young adult (AYA) cancer survivors. Most literature on AYA cancer populations neglects broader reproductive health issues such as unintended pregnancies, contraception use and sexually transmitted infections, which, for cancer patients and survivors with compromised immune systems, can facilitate a multitude of future health problems. Lack of attention coupled with traditional risk-taking behaviors of AYAs poses a significant health risk to patients and survivors, particularly if fertility status is unknown or inaccurately assessed. AYA oncology patients and survivors are vulnerable to reproductive health complications that should be addressed prior to, during and after treatment; however, there are currently no tracking systems or evidence-based guidelines to discuss this subject with patients and survivors. Further research is needed to identify physician practices, AYA preferences and strategies for communication that can pave the way to establishing guidelines to discuss in oncology settings.
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Neoplasias , Educação de Pacientes como Assunto , Saúde Reprodutiva , Adolescente , Comunicação , Anticoncepção , Feminino , Humanos , Masculino , Neoplasias/complicações , Neoplasias/psicologia , Gravidez , Gravidez não Planejada/psicologia , Educação Sexual , Infecções Sexualmente Transmissíveis/prevenção & controle , Sobreviventes , Adulto JovemRESUMO
PURPOSE: The goal of this study was to determine healthy adolescents' perceptions of cancer and fertility. A secondary goal of the study was to test items related to the development of a health-related quality-of-life tool with healthy control subjects to determine whether the participants shared a common understanding of the items and response options and to confirm face and content validity. METHODS: Four focus groups of two age-groups were held with healthy female adolescents: 12-14 years (N = 11) and 15-18 years (N = 14). RESULTS: Adolescents in both age-groups expressed significant concerns regarding potential infertility from cancer treatment, hereditary transmission, and the impact it would have on their future. Differences emerged in language preferences among older adolescents who preferred more open-ended statements. CONCLUSIONS: Fertility concerns and desires for future motherhood can be accurately assessed using the 10 statements tested, and clinicians should be made aware of the differences between younger and older adolescents to facilitate effective communication. This research suggests adolescents have predetermined expectations for becoming future parents, and their concerns about fertility and childbearing are present before becoming a patient.
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Atitude Frente a Saúde , Infertilidade Feminina/etiologia , Neoplasias/complicações , Qualidade de Vida , Inquéritos e Questionários , Adolescente , Fatores Etários , Estudos de Casos e Controles , Criança , Feminino , Florida , Grupos Focais , Humanos , Infertilidade Feminina/psicologia , Neoplasias/psicologia , Psicometria , Reprodutibilidade dos Testes , Saúde ReprodutivaRESUMO
BACKGROUND: Independently offered comments on a physician survey may reveal new insight into physician recommendations for human papillomavirus (HPV) vaccination to their patients. The current study is a follow-up to a previous report of free-response comments and describes remarks from the second of two surveys regarding physicians' HPV vaccine recommendation practices. A secondary objective was to investigate comments specific to male HPV vaccination, which was FDA approved after the first survey was completed. METHODS: In 2011, a mailed survey assessing physicians' HPV-related knowledge, attitudes, and vaccination practices was conducted among a national sample of U.S. primary care physicians, including Family Physicians, Pediatricians, and Obstetricians/Gynecologists. Comments were analyzed using grounded theory and content analysis. FINDINGS: Of 928 completed surveys received, 134 participants provided comments, which were coded into four overall categories: 1) the survey process, 2) personal strategy for discussing HPV vaccine, 3) clinical practice guidelines preference, and 4) barriers to vaccine administration. Twenty-six comments were specific to males, with 17 physicians stating they did not recommend HPV vaccine to males. Physicians also cited the need for more information about HPV vaccine safety and efficacy for males. INTERPRETATION: Respondents used the open-ended portion of the survey to reemphasize issues that were most important to them and to offer insight about the vaccine and survey process. FUNDING: This study was funded by a grant from the National Institutes of Health (R01AI076440-01).
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Coleta de Dados/métodos , Conhecimentos, Atitudes e Prática em Saúde , Vacinas contra Papillomavirus/administração & dosagem , Médicos/psicologia , Feminino , Humanos , Masculino , Padrões de Prática Médica , Pesquisa Qualitativa , Estados UnidosRESUMO
PURPOSE: The purpose of this qualitative study was to assess the coping styles of female adolescent cancer patients regarding potential loss of fertility. Expectations and desires for the future, coping styles in typical adolescence, and coping styles when faced with potential loss of fertility due to cancer treatment are discussed. METHODS: Female adolescents diagnosed with cancer aged 12-18 years at study (N=14) were administered a 10-item values clarification tool to pilot test the readability and relevance of the items on reproductive concerns, followed by a cognitive debriefing interview asking participants how they would respond to each item. These qualitative responses were assessed for coping style type using the constant comparative approach. RESULTS: All adolescent participants reported having a strong desire for biological children in the future. Reactions to questions regarding the loss of fertility fell into two categories of coping styles: emotion-focused coping or problem-focused (engagement) coping. Within emotion-focused coping, there were three distinct styles: externalizing attribution style, internalizing attribution style, and repressive adaptation. Problem-focused coping adolescents displayed optimism. CONCLUSION: Successful interventions aimed at promoting adaptive coping styles should seek to uncover adolescents' values about future parenthood and reproduction. Development of an age-appropriate assessment to stimulate dialogue regarding fertility and initiate an adolescent's cognitive processing of potential fertility loss is warranted.
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Reproductive health among cancer survivors is an important quality of life issue. Certain cancer therapies have known fertility risks. There is an existing cohort of adolescents and young adults (AYA) cancer survivors that, seen less frequently in clinical care settings than active patients, are likely not having discussions of fertility and other reproductive health issues. A survivor or healthcare provider can easily assume that the window of opportunity for fertility preservation has passed, however emerging research has shown this may not be the case. Recent data demonstrates a close relationship between fertility and other late effects to conclude that ongoing assessment during survivorship is warranted. Some fertility preservation procedures have also been shown to mitigate common late effects. This review explores the link between late effects from treatment and common comorbidities from infertility, which may exacerbate these late effects. This review also highlights the relevance of fertility discussions in the AYA survivorship population.
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STUDY OBJECTIVES: Most pediatric education materials are designed for a parent audience. Social marketing techniques rely on the principles called the "4 P's": product, price, place, and promotion. The objective of this study was to test the design, readability, likelihood to read, and overall opinion of a pediatric fertility preservation brochure with patients, parents, and providers. DESIGN: Qualitative face-to-face interviews. SETTING: The Children's Cancer Center in Tampa, FL, and All Children's Hospital in St. Petersburg, FL. PARTICIPANTS: Male and female cancer patients and survivors aged 12-21 (N = 7), their parents (N = 11), and healthcare providers (N = 6). INTERVENTIONS: Patients, survivors, parents, and healthcare providers were given two versions of gender concordant brochures on fertility preservation designed for both pediatric oncology patients and their parents. OUTCOME MEASURES: Design, readability, likelihood to read, and overall opinion from interviews in order to identify facilitators of involving patients in fertility preservation discussions. RESULTS: Parents and teens differed on the design, readability, and likelihood to read, the highest discord being preferences for medical terminology used in the brochures. While parents remarked that much of the language was 'too advanced,' the majority of teens explained that they understood the terminology and preferred it remained on the brochure. Overall feedback from all three groups was utilized to revise the brochures into final versions to increase the likelihood of reading. CONCLUSION: Information about the development of the 4 P's of social marketing highlights needs from the intended audience. Barriers to patient education in pediatrics can be ameliorated when using the social marketing approach.
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Preservação da Fertilidade , Neoplasias/terapia , Folhetos , Educação de Pacientes como Assunto , Adolescente , Adulto , Atitude do Pessoal de Saúde , Criança , Compreensão , Gráficos por Computador , Feminino , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Entrevistas como Assunto , Masculino , Neoplasias/complicações , Pais/psicologia , Projetos Piloto , Pesquisa Qualitativa , Terminologia como Assunto , Adulto JovemRESUMO
STUDY OBJECTIVE: The current study presents findings from a qualitative examination of free text comments from a national survey of U.S. physicians on human papillomavirus vaccine recommendation beliefs and practices. Qualitative analyses of free text physician responses may offer a more complete and physician-driven description of influences on human papillomavirus vaccine recommendation. DESIGN AND PARTICIPANTS: In 2009, a survey assessing physicians' knowledge, attitudes, and human papillomavirus vaccination practices was conducted among a national sample of U.S. physicians practicing Family Medicine, Pediatrics, or Obstetrics/Gynecology (response rate 67.8%). Qualitative comments were analyzed using a Grounded Theory approach. RESULTS: Of 1008 completed surveys, 112 participants provided comments, which were organized into three primary HPV vaccine-related themes: (a) comments about cost of the vaccine, (b) comments about institutional policies and procedures, and (c) physicians' personal views and one secondary theme related to survey methodology: the parent study's use of an upfront cash incentive. Many comments pertained to issues that were queried in the closed-end survey items; however, some comments provided insight into understudied areas (e.g., physician attitudes regarding survey methodology). CONCLUSION: Physician respondents used the free text space to reemphasize issues that were most important to them and to offer insight about aspects of the vaccine and the survey process.
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Atitude do Pessoal de Saúde , Infecções por Papillomavirus/prevenção & controle , Médicos/psicologia , Vacinação , Adolescente , Adulto , Criança , Coleta de Dados , Aconselhamento Diretivo , Feminino , Política de Saúde , Humanos , Masculino , Vacinas contra Papillomavirus/efeitos adversos , Vacinas contra Papillomavirus/economia , Padrões de Prática Médica , Segurança , Adulto JovemRESUMO
OBJECTIVE: To identify whether a health-related quality of life (HRQoL) instrument intended to capture reproductive concerns is sensitive and appropriate for adolescent patients with cancer. METHODS: Pilot testing was completed by administering a 10-item instrument designed to identify reproductive concerns of female adolescent patients with cancer aged 12-18. Parents were also asked to predict their daughters' responses. Fourteen patients and parents participated. The main outcome measures were language, relevance, accuracy, sensitivity, and missing content regarding the HRQoL instrument. Two pediatric hospitals and 1 local support group for patients and survivors served as the setting for this study. RESULTS: The majority of parents provided inaccurate predictions of their daughters' responses regarding their reproductive concerns. Overall, parents underestimated their daughters' concerns because the majority of adolescents reported a strong desire for future parenthood whereas parents expected their daughters to be satisfied with survivorship. CONCLUSIONS: Adolescent patients with cancer have strong reproductive concerns; however, this may not be captured on current HRQoL instruments and may be further neglected due to parents' unawareness. Discussions should be encouraged with adolescent patients before beginning treatment regarding their concerns and values about parenting in the future and cannot rely on parent-proxy reports.
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Atitude Frente a Saúde , Fertilidade/fisiologia , Neoplasias/psicologia , Pais/psicologia , Psicometria/métodos , Qualidade de Vida/psicologia , Reprodução , Adolescente , Adulto , Criança , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/fisiopatologia , Projetos Piloto , Procurador , Inquéritos e QuestionáriosRESUMO
Infertility is often an expected side effect of cancer treatment, although the idea of fertility and sterility may be difficult for the child or adolescent patient to comprehend. Several established fertility preservation options exist for males and females, such as cryopreservation of sperm or embryos. Experimental therapies, which require institutional review board approval, are also being tested. While the science of fertility preservation for adolescents with cancer is advancing, the social science research in this area is lacking. Specifically, there are only a small number of studies about the psychological reproductive concerns in the pediatric oncology population. These studies have provided groundbreaking information for future research, but also illustrate the challenges in conducting research in this area. This article comments on those challenges and, when possible, presents solutions for confronting them.