Bias in Sunscreen SPF Testing: A Review of Published Data.

Subversion bias, a type of selection bias, through manipulation of subject recruitment compromises data validity. This study explores the possibility of subversion bias in sunscreen sun protection factor (SPF) testing. It has been established that subjects with lower minimal erythemal dose (MED) values exhibit higher sunscreen SPF values. Consistency of this response is determined in subjects who participated in multiple sunscreen efficacy clinical trials. All trials determined the SPF of the sunscreen standard P2. Of the 652 subjects with greater than three observations (n = 286), 35 subjects consistently had values either well above (n = 29) or below (n = 6) the average SPF value of the dataset (15.6 ± 1.2). The difference between the average SPF by the subject exhibiting the highest average SPF for P2, 19.8 ± 0.9, and the subject exhibiting the lowest average SPF for P2, 12.3 ± 2.6, is 7.5 SPF units, or 61%. Recruitment strategies based on historical SPF values for an individual would be considered subversion bias. Foreknowledge of those subjects with consistent results either in favor or not in favor of SPF testing outcomes could be exploited and would provide a reason for variation in results among testing facilities.

Transitioning adolescents and young adults with spina bifida to adult healthcare: initial findings from a model program.

PURPOSE: The Spina Bifida Transition Project (SBTP) was developed by partners from pediatric and adult health care settings using existing best practice information in an effort to transition adolescents to adult health care providers. The purpose of this manuscript is to present the results of an initial evaluation of the SBTP from the adolescent/young adult (AYA) and family perspective. DESIGN AND METHODS: Qualitative evaluation data were obtained from telephone interviews with 40 individuals (24 AYA and 16 parents representing 28 families) two-three weeks after initial adult clinic visits using a semi-structured interview guide. FINDINGS: Interview analysis yielded six overall themes: Positive experience, Developing Trust, Unexpected Benefits, Communication, Potential Worries, and Suggestions for Improvement. The study supported both the effectiveness of the SBTP as well as patient desire for earlier initiation of transition activities CONCLUSION AND CLINICAL RELEVANCE: SBTP is well-received by participants and their parents and may be useful model for other chronic health conditions.

Transitioning adolescents and young adults with a chronic health condition to adult healthcare - an exemplar program.

Pediatric specialists have successfully improved the longevity and quality of life of many children with chronic health conditions. As these children reach adolescence and young adulthood, the scope of their concomitant medical problems often include those typically seen in older patients. As a result, these individuals need continuing quality health care in focused adult healthcare facilities. This article describes the effective partnership between pediatric and adult healthcare providers to create and implement an exemplar Spina Bifida Transition Program. The processes, strategies and tools discussed are likely to be useful to other healthcare professionals interested in developing pediatric to adult transition programs for adolescents and young adults with chronic health conditions.

Testing the feasibility of a National Spina Bifida Patient Registry.

BACKGROUND: The purpose of this study was to describe the development and early implementation of a national spina bifida (SB) patient registry, the goal of which is to monitor the health status, clinical care, and outcomes of people with SB by collecting and analyzing patient data from comprehensive SB clinics. METHODS: Using a web-based, SB-specific electronic medical record, 10 SB clinics collected health-related information for patients diagnosed with myelomeningocele, lipomyelomeningocele, fatty filum, or meningocele. This information was compiled and de-identified for transmission to the Centers for Disease Control and Prevention (CDC) for quality control and analysis. RESULTS: A total of 2070 patients were enrolled from 2009 through 2011: 84.9% were younger than 18 years of age; 1095 were women; 64.2% were non-Hispanic white; 6.5% were non-Hispanic black or African American; and 24.2% were Hispanic or Latino. Myelomeningocele was the most common diagnosis (81.5%). CONCLUSIONS: The creation of a National Spina Bifida Patient Registry partnership between the CDC and SB clinics has been feasible. Through planned longitudinal data collection and the inclusion of additional clinics, the data generated by the registry will become more robust and representative of the population of patients attending SB clinics in the United States and will allow for the investigation of patient outcomes.