RESUMO
PURPOSE/OBJECTIVES: To describe factors and outcomes related to the decision-making process regarding participation in a cancer clinical trial. DESIGN: Cross-sectional, descriptive. SETTING: Urban, academic, National Cancer Institute-designated comprehensive cancer center in the mid-Atlantic United States. SAMPLE: 197 patients with advanced gastrointestinal cancer. METHODS: Mailed survey using one investigator-developed instrument, eight instruments used in published research, and a medical record review. INDEPENDENT VARIABLES: disease context, sociodemographics, hope, quality of life, trust in healthcare system, trust in health professional, preference for research decision control, understanding risks, and information. DEPENDENT VARIABLES: decision to accept or decline research participation and satisfaction with this decision. FINDINGS: All of the factors within the Research Decision Making Model together predicted cancer clinical trial participation and satisfaction with this decision. The most frequently preferred decision-making style for research participation was shared (collaborative) (83%). CONCLUSIONS: Multiple factors affect decision making for cancer clinical trial participation and satisfaction with this decision. Shared decision making previously was an unrecognized factor and requires further investigation. IMPLICATIONS FOR NURSING: Enhancing the process of research decision making may facilitate an increase in cancer clinical trial enrollment rates. Oncology nurses have unique opportunities as educators and researchers to support shared decision making by those who prefer this method for deciding whether to accept or decline cancer clinical trial participation.
Assuntos
Ensaios Clínicos como Assunto , Tomada de Decisões , Neoplasias Gastrointestinais/terapia , Participação do Paciente/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Estudos Transversais , Feminino , Neoplasias Gastrointestinais/patologia , Humanos , Masculino , Pessoa de Meia-Idade , Participação do Paciente/estatística & dados numéricos , Satisfação do Paciente/estatística & dados numéricosRESUMO
PURPOSE/OBJECTIVES: To describe the adequacy of research information among people with cancer at the time they accept or decline participation in a cancer clinical trial. DESIGN: Cross-sectional, descriptive. SETTING: An urban, academic, National Cancer Institute-designated comprehensive cancer center. SAMPLE: 197 patients with advanced gastrointestinal cancer. METHODS: Mailed survey; self-reported data. MAIN RESEARCH VARIABLES: Adequacy of research information (actual knowledge, perceived adequacy of information, and perceived understanding), cancer clinical trial participation, and satisfaction with the decision to participate. FINDINGS: Most respondents (88%) perceived themselves as having adequate information to make an informed decision regarding cancer clinical trial participation. In addition, 35% demonstrated adequate knowledge of basic clinical research. CONCLUSIONS: Patients decide to accept or decline cancer clinical trials without having adequate knowledge. IMPLICATIONS FOR NURSING: Nurses have an important role in educating patients regarding cancer clinical trials. The ideal teachable moment may not occur at the time of diagnosis; other less stressful opportunities may present when the patient is more receptive.
Assuntos
Ensaios Clínicos como Assunto , Neoplasias Gastrointestinais/terapia , Conhecimentos, Atitudes e Prática em Saúde , Educação de Pacientes como Assunto , Participação do Paciente/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Compreensão , Estudos Transversais , Tomada de Decisões , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Satisfação do PacienteRESUMO
PURPOSE/OBJECTIVES: To describe what is known about the factors that influence cancer clinical trial decision making. DATA SOURCES: PubMed database and reference lists of identified articles. DATA SYNTHESIS: Variations in research design and methods, including sample characteristics, instrumentation, time between decision made and measurement of decision making, and response rates, have effects on what is known about decision making for cancer clinical trial participation. Communication, whether in the form of education about a cancer clinical trial or as a personal invitation to join, is an important factor influencing decision making. Personal and system factors influence the outcomes of decision making for cancer clinical trials. CONCLUSIONS: The process of decision making for cancer clinical trials is understudied. Nevertheless, the currently available cancer clinical trial decision-making literature suggests a multitude of factors that influence the outcomes of the decision to accept or decline clinical trial participation, as well as the psychosocial consequences of decisional regret, pressures, and satisfaction. IMPLICATIONS FOR NURSING: The decision-making process of cancer clinical trials is a fertile area for research and, subsequently, evidence-based interventions. Oncology nurses are in a position to facilitate the process and to relieve the pressures patients perceive regarding decision making for cancer clinical trials that will benefit individuals and, ultimately, society.