RESUMEN
OBJECTIVE: Advances in prenatal genetics place additional challenges as patients must receive information about a growing array of screening and testing options. This raises concerns about how to achieve a shared decision-making process that prepares patients to make an informed decision about their choices about prenatal genetic screening and testing options, calling for a reconsideration of how healthcare providers approach the first prenatal visit. METHODS: We conducted interviews with 40 pregnant women to identify components of decision-making regarding prenatal genetic screens and tests at this visit. Analysis was approached using grounded theory. RESULTS: Participants brought distinct notions of risk to the visit, including skewed perceptions of baseline risk for a fetal genetic condition and the implications of screening and testing. Participants were very concerned about financial considerations associated with these options, ranking out-of-pocket costs on par with medical considerations. Participants noted diverging priorities at the first visit from those of their healthcare provider, leading to barriers to shared decision-making regarding screening and testing during this visit. CONCLUSION: Research is needed to determine how to restructure the initiation of prenatal care in a way that best positions patients to make informed decisions about prenatal genetic screens and tests.
Asunto(s)
Toma de Decisiones , Pruebas Genéticas , Atención Prenatal , Adulto , Actitud Frente a la Salud , Ácidos Nucleicos Libres de Células/análisis , Ácidos Nucleicos Libres de Células/sangre , Femenino , Pruebas Genéticas/economía , Pruebas Genéticas/métodos , Pruebas Genéticas/normas , Humanos , Tamizaje Masivo/economía , Tamizaje Masivo/organización & administración , Tamizaje Masivo/psicología , Tamizaje Masivo/normas , Pruebas de Detección del Suero Materno/economía , Pruebas de Detección del Suero Materno/psicología , Pruebas de Detección del Suero Materno/normas , Visita a Consultorio Médico/economía , Participación del Paciente/psicología , Participación del Paciente/estadística & datos numéricos , Percepción , Embarazo , Atención Prenatal/economía , Atención Prenatal/organización & administración , Atención Prenatal/psicología , Atención Prenatal/normas , Diagnóstico Prenatal/economía , Diagnóstico Prenatal/métodos , Diagnóstico Prenatal/psicología , Diagnóstico Prenatal/normas , Medición de Riesgo , Estados UnidosRESUMEN
BACKGROUND: Globally only 79% of adults living with HIV (human immunodeficiency virus) know their status and men in sub-Saharan Africa are considered a particularly hard-to-reach population for HIV testing. Home-based HIV couple testing during the antenatal period is a safe and effective method that has been used to test male partners of pregnant women. The goal of this qualitative study was to identify elements that made couple testing successful and describe important characteristics of this home-based intervention from couples' perspectives. METHODS: Couples who received scheduled home-based couple testing during pregnancy in Kisumu, Kenya, were purposively sampled based on HIV status from January to May 2015. An interviewer administered all of the in-depth interviews and two coders were directly involved in the data analysis and reconciled codes several times in the process. RESULTS: Twenty-one couples were enrolled: 9 concordant HIV-negative couples, 8 HIV discordant couples, 3 HIV concordant HIV-positive couples, and 1 whose concordance status was unknown. Median age at the time of home-based couple testing was 24 and 28 years for women and men, respectively. Median relationship duration was 3 years and couples had a median of two pregnancies. The major themes that emerged were that home-based couple testing 1) removed the female burden of requesting couple testing, 2) overcame logistical barriers associated with clinic-based testing, 3) encouraged participants to overcome their fear of testing and disclosure, 4) provided privacy in the home, and 5) provided quality time with the health advisors. Importantly, some women appreciated individual testing at the clinic before couple testing and some couples preferred skilled, anonymous health advisors delivering the intervention rather than known community health workers. CONCLUSIONS: The results of this qualitative study suggest that home-based couple testing during pregnancy overcame many of the barriers that limit men's access to and uptake of clinic-based testing. It encouraged participants to overcome their fear of testing and disclosure through a setting that afforded privacy and quality time with skilled health advisors. These qualitative results may help design effective partner and couple HIV testing programs in the antenatal setting and alongside or within other assisted partner notification services. TRIAL REGISTRATION: Clinicaltrials.gov registry: NCT01784783. Registered prospectively on June 15, 2012.
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Infecciones por VIH/diagnóstico , Hombres/psicología , Mujeres Embarazadas/psicología , Pruebas Serológicas/psicología , Parejas Sexuales/psicología , Adulto , Trazado de Contacto/métodos , Revelación , Femenino , Infecciones por VIH/psicología , Accesibilidad a los Servicios de Salud/estadística & datos numéricos , Servicios de Atención de Salud a Domicilio/estadística & datos numéricos , Humanos , Kenia , Masculino , Tamizaje Masivo/métodos , Tamizaje Masivo/psicología , Pruebas de Detección del Suero Materno/métodos , Pruebas de Detección del Suero Materno/psicología , Motivación , Embarazo , Investigación Cualitativa , Pruebas Serológicas/métodos , Adulto JovenRESUMEN
In this first Asian study, the decision outcomes (decision conflict, decision regret, and anxiety) of 262 pregnant women offered noninvasive prenatal test (NIPT) for high-risk Down screening results were assessed. Decision conflict was experienced by 3.5% and level of decisional regret low (mean score 15.7, 95%CI 13.2-18.3). All 13 cases of decisional regret were NIPT acceptors. Elevated anxiety was experienced by 55.9% at the time of decision making about NIPT and persistent in 30.3%. Insufficient knowledge about NIPT was associated with elevated anxiety at decision making (p = .011) and with decisional regret (p = .016). Decisional regret was associated with prolonged anxiety (p = .010).
Asunto(s)
Toma de Decisiones/fisiología , Síndrome de Down/diagnóstico , Diagnóstico Prenatal/métodos , Diagnóstico Prenatal/psicología , Aborto Inducido/psicología , Aborto Inducido/estadística & datos numéricos , Adulto , Ansiedad/epidemiología , Ansiedad/etiología , Conflicto Psicológico , Emociones , Femenino , Estudios de Seguimiento , Humanos , Pruebas de Detección del Suero Materno/métodos , Pruebas de Detección del Suero Materno/psicología , Embarazo , Encuestas y CuestionariosRESUMEN
BACKGROUND: Cell-free DNA (cfDNA) screening has recently acquired tremendous attention, promising patients and healthcare providers a more accurate prenatal screen for aneuploidy than other current screening modalities. It is unclear how much knowledge regarding cfDNA screening obstetrical providers possess which has important implications for the quality and content of the informed consent patients receive. METHODS: A survey was designed to assess obstetrical provider knowledge and attitudes towards cfDNA screening and distributed online through the Society of Obstetricians & Gynecologists of Canada (SOGC). Chi-squared tests were used to detect differences in knowledge and attitudes between groups. RESULTS: 207 respondents completed the survey, composed of 60.6% Obstetricians/Gynecologists (OB/GYN), 15.4% Maternal Fetal Medicine (MFM) specialists, 16.5% General Practitioners (GP), and 7.5% Midwives (MW). MFM demonstrated a significant trend of being most knowledgeable about cfDNA screening followed by OB/GYN, GP, and lastly MW in almost all aspects of cfDNA screening. All groups demonstrated an overall positive attitude towards cfDNA screening; however, OB/GYN and MFM demonstrated a significantly more positive attitude than GP and MW. Despite not yet being a diagnostic test, 19.4% of GP would offer termination of pregnancy immediately following a positive cfDNA screen result compared to none of the MFM and only few OB/GYN or MW. CONCLUSIONS: We have demonstrated that different types of obstetrical providers possess varying amounts of knowledge regarding cfDNA screening with MFM currently having greater knowledge to all other groups. All obstetrical providers must have adequate prenatal screening understanding so that we can embrace the benefits of this novel and promising technology while protecting the integrity of the informed consent process.
Asunto(s)
Ácidos Nucleicos Libres de Células/sangre , Conocimientos, Actitudes y Práctica en Salud , Personal de Salud/psicología , Pruebas de Detección del Suero Materno/psicología , Obstetricia/estadística & datos numéricos , Aneuploidia , Canadá , Distribución de Chi-Cuadrado , Estudios Transversales , Femenino , Medicina General/métodos , Medicina General/estadística & datos numéricos , Humanos , Partería/métodos , Partería/estadística & datos numéricos , Obstetricia/métodos , Embarazo , Encuestas y CuestionariosRESUMEN
BACKGROUND: Few data are available to guide biological sample collection around the time of birth for large-scale birth cohorts. We are designing a large UK birth cohort to investigate the role of infection and the developing immune system in determining future health and disease. We undertook a pilot to develop methodology for the main study, gain practical experience of collecting samples, and understand the acceptability of sample collection to women in late pregnancy. METHODS: Between February-July 2014, we piloted the feasibility and acceptability of collecting maternal stool, baby stool and cord blood samples from participants recruited at prolonged pregnancy and planned pre-labour caesarean section clinics at University College London Hospital. Participating women were asked to complete acceptability questionnaires. RESULTS: Overall, 265 women were approached and 171 (65%) participated, with ≥1 sample collected from 113 women or their baby (66%). Women had a mean age of 34 years, were primarily of white ethnicity (130/166, 78%), and half were nulliparous (86/169, 51%). Women undergoing planned pre-labour caesarean section were more likely than those who delivered vaginally to provide ≥1 sample (98% vs 54%), but less likely to provide maternal stool (10% vs 43%). Pre-sample questionnaires were completed by 110/171 women (64%). Most women reported feeling comfortable with samples being collected from their baby (<10% uncomfortable), but were less comfortable about their own stool (19% uncomfortable) or a vaginal swab (24% uncomfortable). CONCLUSIONS: It is possible to collect a range of biological samples from women around the time of delivery, and this was acceptable for most women. These data inform study design and protocol development for large-scale birth cohorts.
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Heces , Sangre Fetal , Pruebas de Detección del Suero Materno/métodos , Aceptación de la Atención de Salud , Embarazo Prolongado/diagnóstico , Cuidados Preoperatorios/métodos , Manejo de Especímenes/métodos , Adulto , Recolección de Muestras de Sangre/métodos , Recolección de Muestras de Sangre/psicología , Cesárea , Estudios de Factibilidad , Femenino , Humanos , Estudios Longitudinales , Pruebas de Detección del Suero Materno/psicología , Proyectos Piloto , Embarazo , Embarazo Prolongado/psicología , Cuidados Preoperatorios/psicología , Manejo de Especímenes/psicología , Reino UnidoAsunto(s)
Pruebas de Detección del Suero Materno/psicología , Medida de Translucencia Nucal/psicología , Primer Trimestre del Embarazo/psicología , Segundo Trimestre del Embarazo/psicología , Atención Prenatal/psicología , Ácidos Nucleicos Libres de Células/sangre , Conducta de Elección , Femenino , Humanos , Pruebas de Detección del Suero Materno/métodos , Pruebas de Detección del Suero Materno/normas , Medida de Translucencia Nucal/normas , Embarazo , Primer Trimestre del Embarazo/sangreRESUMEN
OBJECTIVES: To assess the determinants associated with the use of analysis of cell-free DNA in maternal blood for detection of trisomy 21 in high-risk women. MATERIALS AND METHODS: Prospective study conducted in a single center between July 15, 2014 and December 15, 2014 on 99 consecutive women with increased risk of trisomy 21 above 1/250. RESULTS: Analysis of cell-free DNA in maternal blood for detection of fetal trisomy 21 was proposed to 95 women out of 99, among them, 43 women (45.3%) required the test. Among these 43 women, 17 (38.6%) had a higher socio-economic status versus 10 (19.2%) among the women who did not request the test (P=0.03). The most common reason given by the 52 women who did not request the analysis of cell-free DNA was the cost, for 30 of them (57.7%), then because the test was not providing certainty for the diagnostic of trisomy 21 for 23 women (44.2%). CONCLUSION: Analysis of cell-free DNA on maternal blood for detection of trisomy 21 does not seem accepted by the majority of women. The cost is probably the main reason for not using this test, but it seems that the lack of diagnostic certainty is also an obstacle for some women.
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Síndrome de Down/diagnóstico , Pruebas de Detección del Suero Materno/economía , Pruebas de Detección del Suero Materno/psicología , Aceptación de la Atención de Salud/psicología , Adulto , Femenino , Humanos , Embarazo , Riesgo , Análisis de Secuencia de ADNRESUMEN
OBJECTIVE: The aim of this study is to assess Latina patient understanding of noninvasive prenatal testing (NIPT) and identify what factors influence uptake/refusal to NIPT to adapt counseling to the needs and interests of this population. METHODS: Mixed-methods survey in English and Spanish administered to pregnant Latina patients throughout pregnancy. RESULTS: Sixty-three women participated in our study (67% response rate); 34.9% chose to do NIPT, and 65.1% declined. Approximately half of participants (44%) had an NIPT knowledge score of ≤3 out of six total questions. Two of the most significant factors influencing uptake of NIPT were a higher reported educational level (p = 0.015) and a higher NIPT knowledge score (p = 0.014); 42.9% of participants knew that NIPT only screens for certain chromosomal conditions; 39% of women who declined NIPT would never consider NIPT in the future. CONCLUSIONS: One-third of Latina women elected NIPT; a higher reported educational level and language were most predictive of this choice. Overall knowledge was significantly lower for women who declined NIPT. Lower knowledge may suggest that not all women are making informed decisions because of varying degrees of informed consent. Providing culturally tailored information can help women navigate the complexities of prenatal testing in order to make decisions most aligned with their values.
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Conocimientos, Actitudes y Práctica en Salud/etnología , Hispánicos o Latinos , Pruebas de Detección del Suero Materno/estadística & datos numéricos , Aceptación de la Atención de Salud/etnología , Adolescente , Adulto , California , Escolaridad , Femenino , Encuestas de Atención de la Salud , Hispánicos o Latinos/psicología , Humanos , Consentimiento Informado , Lenguaje , Modelos Lineales , Pruebas de Detección del Suero Materno/psicología , Aceptación de la Atención de Salud/psicología , Aceptación de la Atención de Salud/estadística & datos numéricos , Embarazo , Investigación Cualitativa , Adulto JovenRESUMEN
OBJECTIVE: The aim of this study is to explore women's opinions about the use of noninvasive prenatal testing (NIPT) to assess the risk of sex chromosome aneuploidies and microdeletion syndromes. METHODS: Focus groups were conducted with women who were currently pregnant or had recently delivered. Qualitative analysis using interpretive description was used to generate study findings. RESULTS: Thirty-one women (mean age 32.4 years) participated in the focus groups. Participants were unfamiliar with sex chromosome aneuploidies but expressed support for the use of NIPT to detect these conditions. Participants were uncertain about the utility and actionability of receiving information about microdeletion syndromes with variable or unknown phenotypic expression. Participants voiced their desire to be informed of all conditions assessed by NIPT prior to testing. They considered clinicians to be the key provider of such information, although stated that patients have a responsibility to be knowledgeable prior to testing in order to support informed decision making. CONCLUSIONS: The use of NIPT to identify sex chromosome aneuploidies and microdeletion syndromes will introduce new challenges for clinicians to ensure pregnant women have the information and resources to make informed choices about NIPT when used for these conditions.
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Aneuploidia , Deleción Cromosómica , Trastornos de los Cromosomas/diagnóstico , Pruebas Genéticas , Pruebas de Detección del Suero Materno/psicología , Aceptación de la Atención de Salud/psicología , Adolescente , Adulto , Trastornos de los Cromosomas/genética , Femenino , Grupos Focales , Conocimientos, Actitudes y Práctica en Salud , Humanos , Persona de Mediana Edad , Educación del Paciente como Asunto , Embarazo , Investigación Cualitativa , Trastornos de los Cromosomas Sexuales/diagnóstico , Trastornos de los Cromosomas Sexuales/genética , Adulto JovenRESUMEN
OBJECTIVE: The aim of this study was to evaluate which of the following factors affect the uptake of the combined test (CT) in The Netherlands: women's socio-demographic background, attitude towards Down syndrome, attitude towards termination of pregnancy, counseling process, reimbursement policy, and knowledge on the aim of the CT. METHODS: Cross-sectional survey in the Northwest (NW) and the Northeast (NE) region of The Netherlands. RESULTS: Analyses were based on 820 questionnaires (73% response rate). Women from the NW region opted more often for the CT than women from the NE region (52.1% and 16.5%, respectively, p < 0.001). Women of 36 years and older opted more often for the CT than younger women (59.4% and 28.2%, respectively, p < 0.001). Women's socio-demographic background and their attitude towards Down syndrome and termination of pregnancy (TOP) had contributed independently on CT choice. CONCLUSION: The uptake of the CT in this study is low. The main reason for the low uptake is the relatively positive attitude towards Down syndrome and a negative attitude towards TOP. Moreover, the perception of maternal age as strong predictor of Down syndrome risk and the inequality of access to care, due to the financial threshold for younger women, are likely to affect participation in screening.