and abstract This application addresses broad Challenge Area (02) Bioethics, and specific Challenge Topic 02-OD(OSP)-101, """"""""Unique ethical issues posed by emerging technologies."""""""" BACKGROUND. Genetic and molecular testing technologies have expanded rapidly into the newborn screening programs that are used for nearly every U.S. newborn. These techniques lead to biomedical benefit for some infants but troubling psychosocial harms for far more infants who have false positive or genetic carrier results. A mechanism is needed to insure that screening lead to more good than harm, in order to insure the long-term survival of newborn screening for the lung condition cystic fibrosis (CF) and the blood condition sickle cell hemoglobinopathy (SCH). Since many psychosocial problems are the result of parent misunderstandings about the results'significance, we are responding to the challenge by developing a mechanism to assess and improve the processes and outcomes of clinicians'communication with parents. We have previously developed a communication assessment method that is feasible for use on a population scale, using rehearsals and a quality indicator approach to operationalize individual behaviors like the number and relative timing of jargon words, assessments of understanding, and specific content messages. In the current study we will develop and evaluate a rapid-throughput technique to provide feedback and support to clinicians about their communication quality indicator scores.
AIMS. (1) To pilot-test and finalize design of a rapid-throughput feedback and support intervention designed to improve processes of communication after newborn screening for CF and SCH. (2) To determine whether rapid provision of feedback via a """"""""report card"""""""" will improve clinicians'communication quality indicator scores. The proposal also responds to the economy-stimulating goals of the American Recovery and Reinvestment Act by hiring 6 new employees and engaging with two U.S. small businesses to do our research transcription and software development. METHODS. We have adapted our communication assessment method to be done on a rapid-throughput timeline that should have immediate utility for participating clinicians. The project includes 3 tightly-timed phases. In phase 1 (months 1-2) we will finalize informational content of the report card and accompanying support materials, and hire and train the new employees to accomplish the rapid-throughput procedure. In phase 2 (months 3-6) we will pilot test the procedure with a series of resident physicians. Phase 3 (months 7-22) will be a randomized controlled trial of the report card and materials over a sample of 400 child health providers identified via a random search of the AMA Masterfile. Participant scores on a panel of communication quality indicators will be measured at baseline and follow-up after sending a random sample the report card feedback and support materials. SIGNIFICANCE. Improving communication is said to be an important solution to bioethical problems, and there is ample data about problems with clinicians'communication. Most previously published efforts to assess and improve communication require more resources than would be feasible for routine widespread use. An effective mechanism to improve communication quality will help to answer bioethicist challenges about the safety of genetic screening, and insure that newborn screening for CF and SCH lead to more good than harm. In the long run, we believe that a population-scale method to improve communication will benefit health providers in other specialties and the experiences and outcomes of their patients. The U.S. public health community screens nearly every U.S. newborn for inborn diseases, but misunderstanding about the meaning of test results can lead to serious psychosocial problems, the raising of public concerns, and delays in implementing new screening tests. This proposal responds to the challenge of insuring that more good than harm comes from use of new screening technologies, so that newborn screening may expand its services to new communities. The project will implement and evaluate a population-scale method designed to improve clinicians'communication about newborn screening results.
The U.S. public health community screens nearly every U.S. newborn for inborn diseases, but misunderstanding about the meaning of test results can lead to serious psychosocial problems, the raising of public concerns, and delays in implementing new screening tests. This proposal responds to the challenge of insuring that more good than harm comes from use of new screening technologies, so that newborn screening may expand its services to new communities. The project will implement and evaluate a population-scale method designed to improve clinicians'communication about newborn screening results.
| Farrell, Michael H; Christopher, Stephanie A; La Pean Kirschner, Alison et al. (2014) Improving the quality of physician communication with rapid-throughput analysis and report cards. Patient Educ Couns 97:248-55 |
| Bradford, Lisa; Roedl, Sara J; Christopher, Stephanie A et al. (2012) Use of social support during communication about sickle cell carrier status. Patient Educ Couns 88:203-8 |
