Improving Communication between Doctors and Parents after Newborn Screening

Background: Newborn 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. Methods: When 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. Results: Birthing 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. Conclusion: It 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

A Method to Assess the Organizing Behaviors Used in Physicians\u27 Counseling of Standardized Parents after Newborn Genetic Screening

Well-organized conversation can improve people’s ability to comprehend and retain information. As part of a long-term effort to adapt Quality Improvement techniques for communication, we developed an explicit criteria method to assess usage of three organizing behaviors (OBs): ‘opening behaviors’ to establish goals; ‘structuring behaviors’ to guide patients through conversation; and ‘emphasizing behaviors’ that signal a need for attention. Pairs of abstractors independently reviewed transcripts in a demonstration sample of conversations between physicians and standardized parents after newborn screening identifies carrier status for sickle cell disease. Criteria for at least one OB were identified in 50/84 transcripts (60%), including 27 with at least one opening behavior (32%), 5 with at least one structuring behavior (6%), and 38 with at least one emphasizing behavior (45%). The limited number of OBs raises concern about communication after newborn screening. Assessment and improvement of OB usage may improve understanding and allow parents to more actively participate in health care

A method to quantify and compare clinicians\u27 assessments of patient understanding during counseling of standardized patients

Objective To introduce a method for quantifying clinicians’ use of assessment of understanding (AU) questions, and to examine medicine residents’ AU usage during counseling of standardized patients about prostate or breast cancer screening. Methods Explicit-criteria abstraction was done on 86 transcripts, using a data dictionary for 4 AU types. We also developed a procedure for estimating the “load” of informational content for which the clinician has not yet assessed understanding. Results Duplicate abstraction revealed reliability κ = 0.96. Definite criteria for at least one AU were found in 68/86 transcripts (79%). Of these, 2 transcripts contained a request for a teach-back (“what is your understanding of this?”), 2 contained an open-ended AU, 46 (54%) contained only a close-ended AU, and 18 (21%) only contained an “OK?” question. The load calculation identified long stretches of conversation without an AU. Conclusion Many residents’ transcripts lacked AUs, and included AUs were often ineffectively phrased or inefficiently timed. Many patients may not understand clinicians, and many clinicians may be unaware of patients’ confusion. Practice implications Effective AU usage is important enough to be encouraged by training programs and targeted by population-scale quality improvement programs. This quantitative method should be useful in population-scale measurement of AU usage