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2.
J Adolesc Young Adult Oncol ; 7(2): 217-229, 2018 04.
Artigo em Inglês | MEDLINE | ID: mdl-29272188

RESUMO

PURPOSE: Our goals were to evaluate young adult lymphoma survivors' perceptions regarding benefits of exercise after cancer treatment, to identify barriers to exercise, and to understand the types of exercise interventions that may be useful in this patient population. METHODS: Young adult lymphoma survivors were invited to participate in a survey and focus group. Questions focused on elucidating barriers to exercise as well as potential opportunities for supporting patients in adequate exercise. Focus groups were audiorecorded and transcribed, and data were coded inductively for themes and applied findings. RESULTS: Eight survivors participated. Findings were categorized into five main themes: barriers to exercise, facilitators of exercise, personal responsibility for being active, interconnectedness of exercise with a healthy lifestyle, and recommendations. CONCLUSIONS: Fatigue and frustration with postcancer physical limitations are major barriers to exercise for young adult survivors, whereas support from others, data tracking, and survivor-specific resources are facilitators. Interventions that incorporate fitness tracking technology, are individually tailored, and/or create a community with other young adult survivors may be successful in this population.


Assuntos
Composição Corporal , Sobreviventes de Câncer/psicologia , Exercício Físico , Nível de Saúde , Neoplasias/reabilitação , Qualidade de Vida , Adolescente , Adulto , Feminino , Seguimentos , Humanos , Masculino , Motivação , Neoplasias/psicologia , Neoplasias/terapia , Percepção , Prognóstico , Pesquisa Qualitativa , Inquéritos e Questionários , Adulto Jovem
3.
J Empir Res Hum Res Ethics ; 9(5): 16-24, 2014 Dec.
Artigo em Inglês | MEDLINE | ID: mdl-25747687

RESUMO

A proof of principle pharmacogenomic translational study was used as a case example to explore Biobank Community Advisory Board (CAB) member views about placing genomic information into the medical record and to establish how CAB input could affect research design. CAB members expressed enthusiasm for the potential benefit of the research discussed, yet voiced concerns regarding the recruitment and consent materials. They discussed the value of genomic research and its clinical utility; the risk of genetic discrimination; and personal ownership of genomic data. Members distinguished between indirect benefits to future generations and individual risk to research participants. Feedback was used to revise the recruitment and consent materials. Results highlight tensions reported between the public's support for genomic research and concerns with genomic information in the medical record and its use in medical decision-making.


Assuntos
Bancos de Espécimes Biológicos , Pesquisa Biomédica , Confidencialidade , Registros Eletrônicos de Saúde , Genoma , Consentimento Livre e Esclarecido , Privacidade , DNA , Ética em Pesquisa , Genômica , Humanos , Propriedade , Seleção de Pacientes , Projetos de Pesquisa , Medição de Risco
4.
BMC Cancer ; 13: 455, 2013 Oct 04.
Artigo em Inglês | MEDLINE | ID: mdl-24093624

RESUMO

BACKGROUND: The quality of communication in medical care has been shown to influence health outcomes. Cancer patients, a highly diverse population, communicate with their clinical care team in diverse ways over the course of their care trajectory. Whether that communication happens and how effective it is may relate to a variety of factors including the type of cancer and the patient's position on the cancer care continuum. Yet, many of the routine needs of cancer patients after initial cancer treatment are often not addressed adequately. Our goal is to identify areas of strength and areas for improvement in cancer communication by investigating real-time cancer consultations in a cross section of patient-clinician interactions at diverse study sites. METHODS/DESIGN: In this paper we describe the rationale and approach for an ongoing observational study involving three institutions that will utilize quantitative and qualitative methods and employ a short-term longitudinal, prospective follow-up component to investigate decision-making, key topics, and clinician-patient-companion communication dynamics in clinical oncology. DISCUSSION: Through a comprehensive, real-time approach, we hope to provide the fundamental groundwork from which to promote improved patient-centered communication in cancer care.


Assuntos
Comunicação , Oncologia , Neoplasias/psicologia , Assistência Centrada no Paciente/métodos , Relações Médico-Paciente , Tomada de Decisões , Seguimentos , Humanos , Estudos Longitudinais , Neoplasias/terapia , Estudos Prospectivos , Garantia da Qualidade dos Cuidados de Saúde
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