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The preparticipation sports examination (PPE) is required for US high school athletes. We queried members of the Illinois Chapter of the American Academy of Pediatrics (ICAAP) about what they actually include in a PPE, allotted PPE time, and counseling about full contact sports participation. Of 2300 ICAAP members contacted electronically, 228 (10%) responded, yielding 205 usable surveys. When performing a PPE, 34 (25%) always complete all of 6 selected AAP-recommended PPE components and 102 (74%) always get a concussion history. In contrast, 29 (21%) always complete all of the 6 selected AAP PPE components and 70 (49%) always get a concussion history as part of well-child checkup. Main interferences with clinician proficiency are lack of time and training cited by 49% and 37%, respectively. Pediatricians were evenly divided about whether or not to counsel against full contact sports, but were more likely to do so after the athlete sustained a first concussion. [ABSTRACT FROM AUTHOR]

The article offers information on the newborn screening (NBS) for krabbe disease, highlighting the screenings in New York State (NYS) and Illinois. It states that NYS inclusion of krabbe disease in their mandated NBS panel conscripts children into a research program without parental consent. It mentions that krabbe screening in NYS and the proposed screening in Illinois were spearheaded by parent advocates who bypassed the state public health departments.

Introduction Biobank-based research is growing in importance. A major controversy exists about the return of aggregate and individual research results. Methods The authors used a mixed-method approach in order to study parents' attitudes towards the return of research results regarding themselves and their children. Participants attended four 2-h, deliberative-engagement sessions held on two consecutive Saturdays. Each session consisted of an educational presentation followed by focus-group discussions with structured questions and prompts. This manuscript examines discussions from the second Saturday which focused on the benefits and risks of returning aggregate and individual research results regarding both adults (morning session) and children (afternoon session). Attitudes were assessed in pre-engagement and post-engagement surveys. Results The authors recruited 45 African-American adults whose children received medical care at two healthcare facilities on the South Side of Chicago that serve different socioeconomic communities. Three dominant themes were identified. First, most participants stated that they would enrol themselves and their children in a biobank, although there was a vocal minority opposed to enrolling children, particularly children unable to participate in the consent process. Second, participants did not distinguish between the results they wanted to receive regarding themselves and their children. Supplemental survey data found no attitudinal changes pre-engagement and post-engagement. Third, participants believed that children should be allowed access to their health information, but they wanted to be involved in deciding when and how the information was shared. Discussion Participant attitudes are in tension with current biobank policies. An intensive educational effort had no effect on their attitudes. [ABSTRACT FROM AUTHOR]

BACKGROUND: As part of a legal settlement in 2010, the National Collegiate Athletic Association (NCAA) adopted a recommendation that all Division I athletes be screened for sickle cell trait (SCT) or sign an exemption waiver. Pediatricians' attitudes about this policy are unknown. OBJECTIVE: We queried 3 specialty sections of the American Academy of Pediatrics (AAP)--the Section on Adolescent Health, the Council on Sports Medicine and Fitness (COSMF), and the Section on Bioethics--to determine attitudes about and knowledge of SCT testing of athletes. METHODS: Three e-mail surveys were sent to 600 members of the AAP chosen equally from the Section on Bioethics, the Section on Adolescent Health, and the COSMF. The survey queried respondents about their awareness of the NCAA policy and whether they supported universal or targeted screening based on gender, race/ethnicity, level of play, and type of sport. RESULTS: Usable responses from 254 of 574 eligible respondents (44%) were received. Respondents were 54% male and 84% white. Almost half were aware of the NCAA policy, with highest awareness in members of COSMF (P < .001). Only 40% supported universal screening, whereas 70% supported targeted screening of athletes in all NCAA divisions and would focus on black student-athletes more than on Hispanic or white-Mediterranean student-athletes (no differences among AAP sections/council). More than 75% of all respondents support allowing athletes or their parents to waive screening. A majority expressed some concern that athletes with SCT might experience discrimination in sports participation and/or insurance. Members of COSMF were least concerned about discrimination. CONCLUSIONS: The NCAA policy to universally screen Division I athletes is not uniformly supported by pediatricians, who prefer targeted screening based on race/ethnicity and sport in all NCAA divisions. We found little difference in policy considerations between members of the different AAP sections/council except that members of the COSMF were least concerned about discrimination. [ABSTRACT FROM AUTHOR]

BACKGROUND: Newborn screening for cystic fibrosis (CF) in Illinois uses an immunoreactive trypsinogen/DNA methodology; most false-positive results identify unaffected carriers. METHODS: Parents whose child received a negative result from the sweat test after a positive newborn screening for CF were surveyed ≥6 weeks later by telephone. All parents received genetic counseling while waiting for the sweat-test results. RESULTS: A total of 90 parents participated. Overall knowledge of CF was high (78%), but the ability to understand the CF screening results was mixed. Although 94% of the parents understood that their child did not have CF, only 79% (82 of 78) of participants whose child had a mutation knew their child was definitely a carrier, and only 1 of 12 parents whose child had no mutation understood that the child may be a carrier. Respondents stated that most relatives were not interested in genetic testing. Both parents had been tested in only 13 couples. Fewer than half (36 of 77 [47%]) of the untested couples expressed interest in genetic testing. Although most participants were satisfied with the process, parents expressed frustration because of the lack of prospective newborn screening discussions by prenatal and pediatric providers and lack of knowledge and sensitivity by those who initially notified them of the abnormal newborn screening results. Speaking to a genetic counselor when scheduling the sweat test decreased anxiety for many parents (53 of 73 [73%] were "very worried" at notification versus 18 of 73 [25%] after scheduling; P < .001). CONCLUSIONS: Parental knowledge about CF is high, but confusion about the child's carrier status and the concept of residual risk persist despite genetic counseling. Relatives express low interest in carrier testing. [ABSTRACT FROM AUTHOR]

In Illinois, newborn screening (NBS) for sickle cell disease (SCD) began in 1989 and for cystic fibrosis (CF) in 2008. We measured pediatricians' knowledge and attitudes regarding CF and SCD, the significance of carrier status, and NBS methodologies. Of 730 eligible Illinois pediatricians randomly selected from the American Academy of Pediatrics Web-based directory, 391 (54%) fully or partially completed the survey. Approximately three-fifths were women, two-thirds were Caucasians, and one-quarter had specialty training. Ninety-seven percent (377/390) and 93% (364/391) of respondents have at one point cared for a patient with SCD and CF, respectively, and virtually all support NBS for SCD (389/391, 99.5%) and CF (382/389, 98%). Overall mean knowledge of SCD (81.2%) and CF (84.5%) was high but did not correlate with self-reported familiarity. Questions regarding the interpretation of NBS results were less well understood, with 37% of our respondents unaware that Illinois NBS identifies all infants with sickle cell trait, and 28% unaware that Illinois NBS does NOT identify all infants who are CF carriers. Pediatricians support NBS but need additional education about the meaning of a positive and negative screen with respect to carrier detection to effectively counsel or appropriately refer., (© Thieme Medical Publishers.)

Objective: As newborn screening (NBS) programs expand to include conditions that challenge traditional public health criteria, little is known about what influences physicians' attitudes toward screening. We examined the effect of state policy and perceived state policy on pediatricians' attitudes toward screening., Methods: Six hundred pediatricians from the American Academy of Pediatrics who practiced in Wisconsin, Colorado, Florida, or Illinois were queried about (1) testing high-risk infants and (2) universal NBS for cystic fibrosis (CF), glucose-6-phosphate dehydrogenase deficiency (G6PD), and type 1 diabetes., Results: A total of 225 (41%) of 548 eligible pediatricians returned 223 surveys with usable data. The majority were supportive of NBS for CF (n = 188 [84%]) and G6PD (n = 130 [58%]), whereas only 25% (n = 55) supported type 1 diabetes screening. Pediatricians who lived in states that screen for a condition were more likely to support screening than those who lived in states that did not (CF: 117 of 119 [98%] vs 71 of 89 [80%]; type 1 diabetes: 32 of 88 [36%] vs 23 of 109 [21%]). Physicians also were more likely to support NBS when they believed that it was offered in their state versus when they believed that it was not (CF: 117 of 119 [98%] vs 52 of 65 [80%]; G6PD: 28 of 32 [88%] vs 75 of 108 [69%]; type 1 diabetes: 7 of 14 [50%] vs 25 of 102 [25%])., Conclusions: Most pediatricians are supportive of NBS for CF and G6PD but not type 1 diabetes. Pediatricians who live in states that screen or believe that their states screen are more likely to support screening.