ArticleWMJ : official publication of the State Medical Society of Wisconsin2011
Improving communication between doctors and parents after newborn screening.
Article in WMJ : official publication of the State Medical Society of Wisconsin, 2011. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 19 papers, 1 of them a synthesis that pooled it.
What it found
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The trial behind it
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Who cites it
19 citing papers in PubMed, 1 synthesis or guideline pooled it, 25 citations in OpenAlex.
- Psychosocial issues of neonatal screening in the context of its major expansion: a scoping review.Frontiers in psychology · 2025Pooled it
- Improving the quality of physician communication with rapid-throughput analysis and report cards.Patient education and counseling · 2014Trial
- Pediatrician involvement in communicating positive newborn screening results for Krabbe disease: barriers, facilitators, and ideas for interventions.Orphanet journal of rare diseases · 2026Article
- Perceived severity and parental distress after positive expanded newborn screening: parent-clinician concordance and dyadic processes.European journal of pediatrics · 2026Article
- Health education needs of pregnant women regarding newborn inborn errors of metabolism based on a social ecological model: a qualitative study.Frontiers in public health · 2026Article
- Current Methods of Newborn Screening Follow-Up for Sickle Cell Disease Are Highly Variable and without Quality Assurance: Results from the ENHANCE Study.International journal of neonatal screening · 2024Article
- The Value of Cognitive Pretesting: Improving Validity and Revealing Blind Spots through the Development of a Newborn Screening Parent Experiences Survey.International journal of neonatal screening · 2021Article
- Healthcare professionals' and parents' experiences of the confirmatory testing period: a qualitative study of the UK expanded newborn screening pilot.BMC pediatrics · 2017Article
- Benefit of Report Card Feedback After Point-of-Care Assessment of Communication Quality Indicators.Journal of patient-centered research and reviews · 2017Article
- Prevalence of Sickle Cell Trait and Reliability of Self-Reported Status among Expectant Parents in Nigeria: Implications for Targeted Newborn Screening.Public health genomics · 2016Article
- Primary care providers' experiences notifying parents of cystic fibrosis newborn screening results.Clinical pediatrics · 2015Article
- Understanding and improving health education among first-time parents of infants with sickle cell anemia in Alabama: a mixed methods approach.Journal of pediatric hematology/oncology · 2015Article
- Linguistic markers of emotion in mothers of sickle cell carrier infants: what are they and what do they mean?Patient education and counseling · 2014Article
- Effects of immediate telephone follow-up with providers on sweat chloride test timing after cystic fibrosis newborn screening identifies a single mutation.The Journal of pediatrics · 2013Article
- Frequency of high-quality communication behaviors used by primary care providers of heterozygous infants after newborn screening.Patient education and counseling · 2013Article
- Use of social support during communication about sickle cell carrier status.Patient education and counseling · 2012Article
- A qualitative secondary evaluation of statewide follow-up interviews for abnormal newborn screening results for cystic fibrosis and sickle cell hemoglobinopathy.Genetics in medicine : official journal of the American College of Medical Genetics · 2012Article
- A method to assess the organizing behaviors used in physicians' counseling of standardized parents after newborn genetic screening.Communication & medicine · 2012Article
- Effort required to contact primary care providers after newborn screening identifies sickle cell trait.Journal of the National Medical AssociationArticle
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
10 authors at 1 institution in 1 country.
Funding
Abstract
backgroundNewborn screening (NBS) enables early treatment, and some consider it a natural vehicle for genetic screening. Bioethicists argue for caution since families of infants with carrier status can develop psychosocial complications. This paper describes the methods and feasibility of Wisconsin's statewide project for quality improvement of communication and psychosocial outcomes after NBS.
methodsWhen NBS identifies carrier status for cystic fibrosis or sickle cell, we contact primary care providers (PCPs), answer questions, and invite them to rehearse informing the parents. Three months later, we telephone the parents, assess knowledge and psychosocial outcomes, provide counseling, and assist with self-referral to further resources. Afterward, evaluation surveys are provided to the parents, to be returned anonymously.
resultsBirthing facilities provided accurate PCP names for 73% of 817 infants meeting inclusion criteria; we identified PCPs for 21% more. We reached 47.3% of PCPs in time to invite a rehearsal; 60% of these accepted. We successfully called 50.2% of eligible parents; 61% recalled a PCP explanation, and 48.5% evaluated the explanation favorably. Evaluations by parents with limited health literacy were less favorable.
conclusionIt is feasible to follow parents for psychosocial outcomes after NBS. Preliminary data about communication is mixed, but further data will describe psychosocial outcomes and investigate outcomes' associations with communication.
Indexed as
Identifiers
22164579PMC3594768W1631515739What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.