Factors Associated with Recruitment and Retention in Randomized Controlled Trials of Behavioral Interventions for Patients with Pediatric Type 1 Diabetes

The purpose of this study is to describe recruitment and retention experiences from three behavioral randomized controlled trials conducted among youth with type 1 diabetes. Eligibility, recruitment, and retention data were examined. Study-specific differential study participation and loss-to-follow-up analyses assessed the relations of patient characteristics with treatment completion and 6-month retention. Multivariable logistic regression identified factors independently associated with 6-month retention among all participants. Approximately 70–92 % of randomized participants completed treatment and 58–90 % were retained for follow-up. Older patients and non-Caucasian patients were less likely to enroll. Treatment completion and 6-month retention were less likely among youth who were older, had worse baseline glycemic control, lower household income, and/or unmarried parents. Some subgroups of patients are less likely to participate in research and are more susceptible to loss-to-follow-up. More work is needed to understand the facilitators and barriers to research participation.     

Impact of Genomic Counseling on Informed Decision-Making among ostensibly Healthy Individuals Seeking Personal Genome Sequencing: the HealthSeq Project

Personal genome sequencing is increasingly utilized by healthy individuals for predispositional screening and other applications. However, little is known about the impact of ‘genomic counseling’ on informed decision-making in this context. Our primary aim was to compare measures of participants’ informed decision-making before and after genomic counseling in the HealthSeq project, a longitudinal cohort study of individuals receiving personal results from whole genome sequencing (WGS). Our secondary aims were to assess the impact of the counseling on WGS knowledge and concerns, and to explore participants’ satisfaction with the counseling. Questionnaires were administered to participants (n = 35) before and after their pre-test genomic counseling appointment. Informed decision-making was measured using the Decisional Conflict Scale (DCS) and the Satisfaction with Decision Scale (SDS). DCS scores decreased after genomic counseling (mean: 11.34 before vs. 5.94 after; z = ?4.34, p < 0.001, r = 0.52), and SDS scores increased (mean: 27.91 vs. 29.06 respectively; z = 2.91, p = 0.004, r = 0.35). Satisfaction with counseling was high (mean (SD) = 26.91 (2.68), on a scale where 6 = low and 30 = high satisfaction). HealthSeq participants felt that their decision regarding receiving personal results from WGS was more informed after genomic counseling. Further research comparing the impact of different genomic counseling models is needed.     

Syntactic agreement attraction reflects working memory processes

Does producing syntactic agreement rely on syntactic or memory-based retrieval processes? The present study investigated the extent to which syntactic processing deficits and working memory (WM) deficits predict susceptibility to agreement attraction [Bock, K., &; Miller, C. A. (1991). Broken agreement. Cognitive Psychology, 23, 45–93], where speakers tend to erroneously produce plural agreement for a singular subject when another noun in the sentence is grammatically plural. Four brain-injured patients with varying degrees of grammatical and WM deficits completed sentences with local nouns that matched or mismatched in number with the head noun, and that were plausible or implausible subjects. Both aspects of grammatical deficits and the extent of WM deficits predicted the extent of agreement attraction effects. These data are consistent with the proposal that producing an agreeing verb involves a cue-based search in WM for an appropriate controlling noun, which is subject to interference from other elements in memory with similar properties [cf. Badecker, W., &; Kuminiak, F. (2007). Morphology, agreement and working memory retrieval in sentence production: Evidence from gender and case in Slovak. Journal of Memory and Language, 56(1), 65–85. doi:10.1016/j.jml.2006.08.004].     

Tools for Assessing Readability and Quality of Health-Related Web Sites

With the Internet becoming a growing source of information on genetics, genetic counselors and other health-care providers may be called upon to guide their patients to appropriate material, which is written at a suitable reading level for the individual and contains quality information. Given that many health-related Web sites are written at a high school or higher reading level, without direction from a genetic counselor or health-care provider, many Internet users may currently be turning to health-related Web sites that they do not understand. Additionally, Internet users may not know how to evaluate the quality of information they find, which could lead to them access inaccurate or irrelevant information. To aid in the process of finding and designing Web sites that are appropriate for patients, the current article provides guidelines for assessing readability and quality of health-related content. Additionally, a demonstration of an assessment is provided. Finally, limitations of these assessments are discussed.     

Psychosocial Impact of Predictive Testing for Illness on Children and Families: Challenges for a New Millennium

Predictive testing for adult- and child-onset diseases is becoming widely available. The identification of individuals prone to develop certain illnesses is often medically advantageous in that it may afford opportunities to engage in risk reduction behaviors to detect or delay disease onset. However, sometimes the knowledge gained from these tests can be ambiguous, generate distress, and potentially affect several generations of family members. Overall, these factors create a challenging set of circumstances for persons considering genetic and other forms of predictive testing, particularly parents and children. In this article, we (1) address conceptual issues involved in determining the impact of predictive testing on child and family well-being, (2) review empirical data on this topic, and (3) provide a case example to illustrate these findings. Recommendations are made for additional psychological research on child- and family-focused outcomes associated with participation in testing, highlighting their clinical implications.     

Two-year-old twins refuse to eat: A multidisciplinary approach to diagnosis and treatment

This round table addresses the diagnosis and treatment of feeding disorders and failure to thrive. It describes a family-centered approach by a multidisciplinary feeding disorders team, beginning with the screening evaluation by the team coordinator at intake, through the evaluations by various team members, the team meeting with the parents, the development of a treatment plan, to a 1-year follow-up after treatment. Both twins refused to eat textured food and were found to have a posttraumatic feeding disorder secondary to repeated gagging and choking on cereal and lumpy baby food. However, only one twin was engaged in a battle with the parents over eating and developed infantile anorexia associated with failure to thrive. The differential diagnosis and the specific treatment plans of these two feeding disorders characterized by food refusal are discussed.