Stephanie A. Christopher

Pediatric Residents’ Use of Jargon During Counseling About Newborn Genetic Screening Results

OBJECTIVE. The goal was to investigate pediatric residents’ usage of jargon during discussions about positive newborn screening test results. METHODS. An explicit-criteria abstraction procedure was used to identify jargon usage and explanations in transcripts of encounters between residents and standardized parents of a fictitious infant found to carry cystic fibrosis or sickle cell hemoglobinopathy. Residents were recruited from a series of educational workshops on how to inform parents about positive newborn screening test results. The time lag from jargon words to explanations was measured by using “statements,” each of which contained 1 subject and 1 predicate. RESULTS. Duplicate abstraction revealed reliability κ of 0.92. The average number of unique jargon words per transcript was 20; the total jargon count was 72.3 words. There was an average of 7.5 jargon explanations per transcript, but the explained/total jargon ratio was only 0.17. When jargon was explained, the average time lag from the first usage to the explanation was 8.2 statements. CONCLUSION. The large number of jargon words and the small number of explanations suggest that physicians’ counseling about newborn screening may be too complex for some parents.

A Method to Quantify Residents’ Jargon Use During Counseling of Standardized Patients About Cancer Screening

BackgroundJargon is a barrier to effective patient-physician communication, especially when health literacy is low or the topic is complicated. Jargon is addressed by medical schools and residency programs, but reducing jargon usage by the many physicians already in practice may require the population-scale methods used in Quality Improvement.ObjectiveTo assess the amount of jargon used and explained during discussions about prostate or breast cancer screening. Effective communication is recommended before screening for prostate or breast cancer because of the large number of false-positive results and the possible complications from evaluation or treatment.ParticipantsPrimary care internal medicine residents.MeasurementsTranscripts of 86 conversations between residents and standardized patients were abstracted using an explicit-criteria data dictionary. Time lag from jargon words to explanations was measured using “statements,” each of which contains one subject and one predicate.ResultsDuplicate abstraction revealed reliability κ = 0.92. The average number of unique jargon words per transcript was 19.6 (SD = 6.1); the total jargon count was 53.6 (SD = 27.2). There was an average of 4.5 jargon-explanations per transcript (SD = 2.3). The ratio of explained to total jargon was 0.15. When jargon was explained, the average time lag from the first usage to the explanation was 8.4 statements (SD = 13.4).ConclusionsThe large number of jargon words and low number of explanations suggest that many patients may not understand counseling about cancer screening tests. Educational programs and faculty development courses should continue to discourage jargon usage. The methods presented here may be useful for feedback and quality improvement efforts.

A qualitative secondary evaluation of statewide follow-up interviews for abnormal newborn screening results for cystic fibrosis and sickle cell hemoglobinopathy

Purpose:The purpose of this qualitative analysis was to assess parental acceptability of large-scale, telephone follow-up regarding their infants’ newborn screening (NBS) results, indicating carrier status for sickle cell hemoglobinopathy (SCH) and cystic fibrosis (CF).Methods:Analysis of 195 interview transcripts focused on parents’ responses to two open-ended questions: “What was your reaction to being called by me?” and “What do you think of the state NBS program having follow-up people calling parents like you?” Responses were coded using conventional content analysis procedures, and nonparametric tests were performed to analyze quantitative data.Results:Most parents reported favorable opinions about the follow-up. Favorable opinions were associated with several emotional reactions to receiving follow-up (P <0.001) and three reasons why parents found the interview beneficial (P < 0.05): it provided information, clarified NBS results, and answered questions. Seventeen parents of SCH carriers reportedly had not been told their infant’s NBS results and received them for the first time during the follow-up interview.Conclusion:Parents of CF and SCH carrier infants had favorable opinions and identified specific benefits to receiving follow-up contact. This analysis demonstrates an information deficit among carrier parents and illustrates the importance of NBS follow-up and need for comprehensive communication and counseling.Genet Med 2012:14(2):207–214

Improving the quality of physician communication with rapid-throughput analysis and report cards

OBJECTIVE Problems with clinician-patient communication negatively impact newborn screening, genetics, and all of healthcare. Training programs teach communication, but educational methods are not feasible for entire populations of clinicians. To address this healthcare quality gap, we developed a Communication Quality Assurance intervention. METHODS Child health providers volunteered for a randomized controlled trial of assessment and a report card. Participants provided telephone counseling to a standardized parent regarding a newborn screening result showing heterozygous status for cystic fibrosis or sickle cell disease. Our rapid-throughput timeline allows individualized feedback within a week. Two encounters were recorded (baseline and after a random sample received the report card) and abstracted for four groups of communication quality indicators. RESULTS 92 participants finished both counseling encounters within our rapid-throughput time limits. Participants randomized to receive the report card improved communication behaviors more than controls, including request for teach-back (p<0.01), opening behaviors (p=0.01), anticipate/validate emotion (p<0.001) and the ratio of explained to unexplained jargon words (p<0.03). CONCLUSION The rapid-throughput report card is effective at improving specific communication behaviors. PRACTICE IMPLICATIONS Communication can be taught, but this project shows how healthcare organizations can assure communication quality everywhere. Further implementation could improve newborn screening, genetics, and healthcare in general.

Effort Required to Contact Primary Care Providers After Newborn Screening Identifies Sickle Cell Trait

People with heterozygous status for sickle cell disease (also called sickle cell trait) are essentially healthy, but evidence of rare health problems has increased interest in screening adolescents and young adults prior to enlisting in athletics or military service. Ironically, almost everyone with sickle cell trait is already identified during routine newborn screening for sickle cell disease, but this identification may never reach the parents. As part of a larger statewide study of communication after newborn screening, we decided to document the amount of labor required to connect sickle cell trait screening results with primary care providers (PCPs). Case review methods examined records and call logs from the first 150 cases in a 42-month project. Our study procedures identified PCPs for 136 of 150 infants (90.6%); a total of 266 phone calls were needed. We identified 9 categories of experiences, ranging from incorrect baby names to restrictions on accepting Medicaid patients. Cases demonstrate that it is possible to connect with most PCPs after newborn screening despite warnings about difficulties with this population. Success was due to persistence, relationships with clinics and hospitals, and Internet search capabilities. If sickle cell trait identification is necessary to protect health, then only modest increases in effort will be needed to reduce disparities in service.