RESUMO
OBJECTIVE: To conduct interviews with a multiyear sample of parents of infants found to have heterozygous status for sickle cell hemoglobinopathy or cystic fibrosis during newborn blood screening (NBS). STUDY DESIGN: Interviewers with clinical backgrounds telephoned parents, and followed a structured script that blended follow-up and research purposes. Recruiting followed several steps to minimize recruiting bias as much as possible for a NBS study. RESULTS: Follow-up calls were conducted with parents of 426 infant carriers of sickle cell hemoglobinopathy, and 288 parents of cystic fibrosis carriers (34.8% and 49.6% of those eligible). Among these, 27.5% and 7.8% had no recollection of being informed of NBS results. Of those who recalled a provider explanation, 8.6% and 13.0% appraised the explanation negatively. Overall, 7.4% and 13.2% were dissatisfied with the experience of learning about the NSB result. Mean anxiety levels were low but higher in the sickle cell hemoglobinopathy group (P < .001). Misconceptions that the infant might get the disease were present in 27.5% and 7.8% of parents (despite zero actual risk for disease). Several of these data were significantly predicted by NBS result, health literacy, parental age, and race/ethnicity factors. CONCLUSIONS: Patient-centered public health follow-up can be effective after NBS identifies carrier status. Psychosocial complications were uncommon, but harms were substantial enough to justify mitigation.
Assuntos
Anemia Falciforme/genética , Portador Sadio/psicologia , Fibrose Cística/genética , Triagem de Portadores Genéticos/normas , Conhecimentos, Atitudes e Prática em Saúde , Pais/psicologia , Ansiedade/diagnóstico , Portador Sadio/diagnóstico , Estudos de Coortes , Feminino , Triagem de Portadores Genéticos/ética , Humanos , Lactente , Recém-Nascido , Consentimento Livre e Esclarecido , Masculino , Triagem Neonatal , Satisfação do Paciente , Relações Médico-Paciente , Pesquisa Qualitativa , Inquéritos e QuestionáriosRESUMO
OBJECTIVES: To provide a model of the information processes instigated by a positive result on a newborn screening for cystic fibrosis and to analyze their implications for future research. METHOD: We reviewed research conducted at Wisconsin and elsewhere. RESULTS: We identified 6 distinct phases of information flow. CONCLUSION: Although continued attention to genetic counseling is clearly warranted, research on information flow after newborn screening should: 1) look beyond genetic counseling to include a variety of information sources including family, friends, and the Internet; 2) appreciate that families vary in their willingness to acquire cystic fibrosis-related information; and 3) should seek to better understand how this information moves through social networks.