RESUMEN
OBJECTIVES: The rate of contralateral prophylactic mastectomy (CPM) has risen sharply in the past decade. The current study was designed to examine social network, surgeon, and media influence on patients' CPM decision-making, examining not only who influenced the decision, and to what extent, but also the type of influence exerted. METHODS: Patients (N=113) who underwent CPM at 4 Indiana University-affiliated hospitals between 2008 and 2012 completed structured telephone interviews in 2013. Questions addressed the involvement and influence of the social network (family, friends, and nonsurgeon health professionals), surgeon, and media on the CPM decision. RESULTS: Spouses, children, family, friends, and health professionals were reported as exerting a meaningful degree of influence on patients' decisions, largely in ways that were positive or neutral toward CPM. Most surgeons were regarded as providing options rather than encouraging or discouraging CPM. Media influence was present, but limited. CONCLUSIONS: Patients who choose CPM do so with influence and support from members of their social networks. Reversing the increasing choice of CPM will require educating these influential others, which can be accomplished by encouraging patients to include them in clinical consultations, and by providing patients with educational materials that can be shared with their social networks. Surgeons need to be perceived as having an opinion, specifically that CPM should be reserved for those patients for whom it is medically indicated.
Asunto(s)
Neoplasias de la Mama/psicología , Toma de Decisiones , Consejo Dirigido , Mastectomía Profiláctica/psicología , Red Social , Cirujanos/estadística & datos numéricos , Adulto , Anciano , Neoplasias de la Mama/cirugía , Femenino , Estudios de Seguimiento , Humanos , Persona de Mediana Edad , Pronóstico , Derivación y Consulta , Encuestas y Cuestionarios , Adulto JovenRESUMEN
BACKGROUND: Despite no demonstrated survival advantage for women at average risk of breast cancer, rates of contralateral prophylactic mastectomy (CPM) continue to increase. Research reveals women with higher socioeconomic status (SES) are more likely to select CPM. This study examines how indicators of SES, age, and disease severity affect CPM motivations. METHODS: Patients (N = 113) who underwent CPM at four Indiana University affiliated hospitals completed telephone interviews in 2013. Participants answered questions about 11 CPM motivations and provided demographic information. Responses to motivation items were factor analyzed, resulting in 4 motivational factors: reducing long-term risk, symmetry, avoiding future medical visits, and avoiding treatments. RESULTS: Across demographic differences, reducing long-term risk was the strongest CPM motivation. Lower income predicted stronger motivation to reduce long-term risk and avoid treatment. Older participants were more motivated to avoid treatment; younger and more-educated patients were more concerned about symmetry. Greater severity of diagnosis predicted avoiding treatments. CONCLUSIONS: Reducing long-term risk is the primary motivation across groups, but there are also notable differences as a function of age, education, income, and disease severity. To stop the trend of increasing CPM, physicians must tailor patient counseling to address motivations that are consistent across patient populations and those that vary between populations.
Asunto(s)
Neoplasias de la Mama/prevención & control , Conocimientos, Actitudes y Práctica en Salud , Motivación , Mastectomía Profiláctica/psicología , Clase Social , Adulto , Neoplasias de la Mama/psicología , Escolaridad , Femenino , Humanos , Renta/estadística & datos numéricos , Indiana , Persona de Mediana Edad , Mastectomía Profiláctica/tendencias , Grupos Raciales/psicología , Ajuste de Riesgo/métodos , Encuestas y Cuestionarios , Sobrevivientes/psicología , Sobrevivientes/estadística & datos numéricosRESUMEN
Medical and research professionals who discuss clinical trials and research studies with potential participants face an often daunting challenge, particularly when recruiting from minority and underserved populations. This study reports on findings from a focus group study of 63 research coordinators, study nurses, professional recruiters, and other professionals in Indianapolis, IN and Miami, FL who work to recruit from minority and underserved populations. These professionals discussed the importance of creating a sense of connection with potential participants as part of the recruitment and retention process. Building a relationship, however fleeting, involved a number of concrete behaviors, including listening to personal information, expressing empathy, and then providing reciprocal self-disclosures; having repeated contact, usually by working in the same environment over an extended period of time; demonstrating respect through politeness and the use of honorifics; going the extra mile for participants; offering flexibility in scheduling follow-up appointments; and creating a sense of personal and community trust by being truthful. The implications of these findings for clinical trial and research study accrual are discussed.
Asunto(s)
Ensayos Clínicos como Asunto , Comunicación , Selección de Paciente , Investigadores/psicología , Relaciones Investigador-Sujeto , Adulto , Femenino , Florida , Grupos Focales , Humanos , Indiana , Masculino , Persona de Mediana Edad , Grupos Minoritarios , Investigadores/estadística & datos numéricos , Poblaciones Vulnerables , Adulto JovenRESUMEN
Few studies have examined the communication behaviors of those who recruit for clinical trials and research studies, particularly of nonmedical professionals who often do the bulk of recruiting. This focus-group study of 63 recruiters analyzes the ways in which nonverbal communication behaviors support the process of recruitment, using the lens of communication accommodation theory. Results indicate that recruiters first "read" potential study participants' nonverbal communication for clues about their state of mind, then use nonverbal communication to achieve a sense of convergence. Specific nonverbal communication behaviors were discussed by recruiters, including smiling, variations in the use of voice, adjusting body position, the appropriate use of physical touch, the management of eye contact, and the effect of clothing and physical appearance. Implications for recruitment practice are discussed.
Asunto(s)
Comunicación no Verbal/psicología , Selección de Paciente , Investigadores/psicología , Adulto , Actitud , Ensayos Clínicos como Asunto , Emociones , Etnicidad , Femenino , Florida , Grupos Focales , Humanos , Indiana , Masculino , Persona de Mediana Edad , Adulto JovenRESUMEN
The lack of accrual to research studies and clinical trials is a persistent problem with serious consequences: Advances in medical science depend on the participation of large numbers of people, including members of minority and underserved populations. The current study examines a critical determinant of accrual: the approach of patients by professional recruiters who request participation in research studies and clinical trials. Findings indicate that recruiters use a number of verbal strategies in the communication process, including translating study information (such as simplifying, using examples, and substituting specific difficult or problematic words), using linguistic reframing or metaphors, balancing discussions of research participation risks with benefits, and encouraging potential participants to ask questions. The identification of these verbal strategies can form the basis of new communication protocols that will help medical and nonmedical professionals communicate more clearly and effectively with patients and other potential participants about research studies and clinical trials, which should lead to increased accrual in the future.