Who Counsels Parents of Newborns Who Are Carriers of Sickle Cell Anemia or Cystic Fibrosis?
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ORIGINAL RESEARCH
Who Counsels Parents of Newborns Who Are Carriers of Sickle Cell Anemia or Cystic Fibrosis? Kathryn L. Moseley & Samya Z. Nasr & Jane L. Schuette & Andrew D. Campbell
Received: 16 January 2012 / Accepted: 8 August 2012 / Published online: 18 August 2012 # National Society of Genetic Counselors, Inc. 2012
Abstract Our objective was to describe: 1) physicians’ knowledge of whether genetic counseling is provided to parents of newborns with sickle cell trait (SCT) or who are cystic fibrosis carriers (CFC), and 2) the prevalence of genetic counseling provided by primary care physicians. We conducted a cross-sectional descriptive survey of 600 randomly-sampled Michigan-based pediatricians and family physicians, assessing physician knowledge of where and whether genetic counseling is received by parents whose newborns are carriers. Chi-squared testing determined associations between genetic counseling location and physician demographic characteristics. Our response rate was 62 %: 298 (84 %) provided infant well Research funded by the University of Michigan Ethics in Public Life Program K. L. Moseley (*) Department of Pediatrics and Communicable Diseases, Child Health Evaluation and Research Unit, Division of General Pediatrics, Mott Children’s Hospital, University of Michigan, 300 N. Ingalls St. 6D21, Ann Arbor, MI 48109, USA e-mail: [email protected] S. Z. Nasr Department of Pediatrics and Communicable Diseases, Cystic Fibrosis Center, Division of Pediatric Pulmonology, Mott Children’s Hospital, University of Michigan, Ann Arbor, MI, USA
care (183 pediatricians, 115 family physicians). Most respondents were non-Hispanic White (65 %). Virtually all physicians believed parents whose newborns are carriers of either SCT or CFC should receive some genetic counseling (from the physician and/or another source), yet 20 % reported that parents of newborns with SCT did not receive counseling. Parents of infants with CFC received more counseling overall (92 % vs. 80 %; p< 0.01) and were counseled more frequently by genetic counselors or specialty centers than parents of newborns with SCT (85 % vs. 60 %; p95 %) believed that parents whose newborns are carriers of either condition should be informed of their child’s status in the newborn period and receive genetic counseling at that time. While the good news is that 80 % or more of physicians report that in their practices, parents whose newborns are carriers are receiving some form of genetic counseling, the bad news is that 20 % of physicians report that parents whose newborns are SCT carriers receive no counseling whatsoever. We also found carrier-related differences in the locations where counseling is provided. Primary care physicians were more likely to counsel parents whose newborns are SCT carriers in their office than parents whose newborns are CFC carriers. Our findings raise some questions and concerns. Newborns with SCT are at risk for rare, but serious health problems that can begin in late childhood and early adolescence. SCT is associated with
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