Combining Data from Parent Ratings and Parent Interview When Assessing ADHD

This study examined different methods of combining data from a well established rating scale – the Disruptive Behavior Disorders Rating Scale (DBDRS) – with data from a well established interview – the computerized self report version of the Diagnostic Interview Schedule for Children for DSM-IV (P-DISC-IV) – when examining parent report of ADHD. These measures were completed for 80 children who participated in a summer camp for children with disruptive behavior. Results showed significant overlap between the two diagnostic measures but parent report on the DBDRS was more highly associated with children’s camp behaviors than was parent report on the P-DISC-IV. In addition, combining ratings and interview data using an “either/or” rule was more highly associated with camp behavior than was combining data using a “both/and” rule. Results suggest there may be little additional value of adding data from parent self-report on the computerized version of the P-DISC-IV to behavior rating data.     

The next exclusion debate: assessing technology, ethics, and intellectual disability after the Human Genome Project

Recent scientific discoveries have made it much easier to test prenatally for various genetic disabilities, such as Down syndrome. However, while many observers have heralded such "advances" for their effectiveness in detecting certain conditions, others have argued that they perpetuate discrimination by preventing the birth of children with disabilities. This article examines the ethical and social implications of the Human Genome Project for individuals with intellectual disabilities and their families. It details the critique of prenatal testing articulated by many disability rights activists as well as scholarly and professional responses to that critique. A review of the pertinent research literature includes perspectives of genetic professionals, ethicists, disability studies scholars, parents of children with disabilities, and disabled individuals themselves. Finally, the article explores how future research endeavors, policies, and practices may more effectively integrate and respect the positions of these various stakeholders.     

Church-based health behavior programs: Using social cognitive theory to formulate interventions for at-risk populations

Epidemiological analyses conclude that the major contributors to all-cause premature mortality and morbidity are smoking, alcohol abuse, inappropriate diet, and a sedentary lifestyle. Efforts to modify these health behaviors in populations with community and worksite interventions, although initially promising, have had difficulty in sustaining health-behavior changes. More intensive, theoretically based interventions targeted to at-risk groups and delivered in smaller social units, such as churches and other religious organizations, have been recommended. An intervention based on social cognitive theory that entails integrating self-regulatory procedures with social and environmental supports in rural churches serving people from lower socioeconomic groups is described in detail.     

Outcomes of a Randomized Controlled Trial of Genomic Counseling for Patients Receiving Personalized and Actionable Complex Disease Reports

There has been very limited study of patients with chronic disease receiving potentially actionable genomic based results or the utilization of genetic counselors in the online result delivery process. We conducted a randomized controlled trial on 199 patients with chronic disease each receiving eight personalized and actionable complex disease reports online. Primary study aims were to assess the impact of in-person genomic counseling on 1) causal attribution of disease risk, 2) personal awareness of disease risk, and 3) perceived risk of developing a particular disease. Of 98 intervention arm participants (mean age = 57.8; 39% female) randomized for in-person genomic counseling, 76 (78%) were seen. In contrast, control arm participants (n = 101; mean age = 58.5; 54% female) were initially not offered genomic counseling as part of the study protocol but were able to access in-person genomic counseling, if they requested it, 3-months post viewing of at least one test report and post-completion of the study-specific follow-up survey. A total of 64 intervention arm and 59 control arm participants completed follow-up survey measures. We found that participants receiving in-person genomic counseling had enhanced objective understanding of the genetic variant risk contribution for multiple complex diseases. Genomic counseling was associated with lowered participant causal beliefs in genetic influence across all eight diseases, compared to control participants. Our findings also illustrate that for the majority of diseases under study, intervention arm participants believed they knew their genetic risk status better than control arm subjects. Disease risk was modified for the majority during genomic counseling, due to the assessment of more comprehensive family history. In conclusion, for patients receiving personalized and actionable genomic results through a web portal, genomic counseling enhanced their objective understanding of the genetic variant risk contribution to multiple common diseases. These results support the development of additional genomic counseling interventions to ensure a high level of patient comprehension and improve patient-centered health outcomes.     

How generation affects source memory

Generation effects (better memory for self-produced items than for provided items) typically occur in item memory. Jurica and Shimamura (1999) reported a negative generation effect in source memory, but their procedure did not test participants on the items they had generated. In Experiment 1, participants answered questions and read statements made by a face on a computer screen. The target word was unscrambled, or letters were filled in. Generation effects were found for target recall and source recognition (which person did which task). Experiment 2 extended these findings to a condition in which the external sources were two different faces. Generation had a positive effect on source memory, supporting an overlap in the underlying mechanisms of item and source memory.     

Attitudes of Health Care Trainees About Genetics and Disability: Issues of Access, Health Care Communication, and Decision Making

Prior studies suggest that knowledge and attitudes of health care professionals influence patient communication and medical decision making. To study this dynamic in the context of genetic disability, we developed a survey on health professionals' attitudes regarding disability and genetic screening and pilot-tested it on a sample of medical students, residents, and genetic counseling students (N = 85). Despite minimal experience with disability or genetics, most respondents reported feeling comfortable dealing with genetics (59%) and disability (75%). The majority felt that disability caused significant suffering for both the person (51%) and family (64%), and that research should be directed toward preventing genetic disability (62%). Similar to prior literature, perceived Quality of Life was most often based on degrees of physical and cognitive functioning, pain, and social support. However, differences were found between genetic counseling trainees and other medical trainees in their relative emphasis of social versus medical issues in questions of disability and genetic testing, and these response patterns were associated with differences in the groups' priorities for offering information about social resources. Respondents agreed that access to genetic testing and information is personal and that testing should be available upon request for oneself (68%) and to a lesser degree for one's fetus (55%) or child (41%). However, the same individuals frequently stated that society should regulate access to such technologies. Although most felt that the patient and professional should jointly make such decisions on a case-by-case basis, it was also seen as appropriate for the health care professional to occasionally decline genetic testing. It seems apparent that training and experience influence knowledge and attitudes. Therefore, it is critical to document knowledge and attitudes of various health care providers and trainees, including differences between various specialties, to improve educational interventions geared to this area.     

Special issue: Bioethics & disability

Theoretical Medicine and Bioethics -     

Health anxiety in children: development and psychometric properties of the Childhood Illness Attitude Scales

The course of severe anxiety surrounding health issues is unknown. The available literature suggests that adults who are overly anxious about health issues often interpret or misinterpret their bodily signs and symptoms to be indicative of a serious illness. The construct of health anxiety has not been examined in children and, to date, there has not been an instrument developed for this purpose. The Illness Attitude Scales is one of the most commonly used instruments for evaluating fears, beliefs, and attitudes that are associated with hypochondriasis and abnormal illness behaviour in adults. We sought to adapt the Illness Attitude Scales for use with children ages 8-15 years. The adapted Illness Attitude Scales was renamed the Childhood Illness Attitude Scales. Revisions to the adult version consisted of simplification of language, revision of Likert scale (i.e. 5-point to 3-point scale), and the addition of 7 questions to evaluate the role parents/guardians play in facilitating medical attention or treatment. Correlations between Childhood Illness Attitude Scales total scores and other self-report measures were supportive of the construct-related validity of the Childhood Illness Attitude Scales and suggested that it is a useful measure of health anxiety in school-age children. Practical and theoretical implications of the present results are discussed.     

Patient Perceptions of Telephone vs. In-Person <Emphasis Type="Italic">BRCA1/BRCA2</Emphasis> Genetic Counseling

Telephone genetic counseling (TC) for hereditary breast/ovarian cancer risk has been associated with positive outcomes in high risk women. However, little is known about how patients perceive TC. As part of a randomized trial of TC versus usual care (UC; in-person genetic counseling), we compared high risk women’s perceptions of: (1) overall satisfaction with genetic counseling; (2) convenience; (3) attentiveness during the session; (4) counselor effectiveness in providing support; and (5) counselor ability to recognize emotional responses during the session. Among the 554 participants (TC, N?=?272; UC, N?=?282), delivery mode was not associated with self-reported satisfaction. However, TC participants found counseling significantly more convenient than UC participants (OR?=?4.78, 95 % CI?=?3.32, 6.89) while also perceiving lower levels of support (OR?=?0.56, 95 % CI?=?0.40–0.80) and emotional recognition (OR?=?0.53, 95 % CI?=?0.37–0.76). In exploratory analyses, we found that non-Hispanic white participants reported higher counselor support in UC than in TC (69.4 % vs. 52.8 %; OR?=?3.06, 95 % CI?=?1.39–6.74), while minority women perceived less support in UC vs. TC (58.3 % vs. 38.7 %; OR?=?0.80, 95 % CI?=?0.39–1.65). We discuss potential research and practice implications of these findings which may further improve the effectiveness and utilization of TC.     

Response to Stuart Kauffman: The Paradox of Divine Action and Scientific Truth

We three authors compare and contrast Stuart Kauffman's concept of the “cosmic mind” with similar ideas developed in our recent book, The Unity of Truth: Solving the Paradox of Science and Religion (IUniverse, 2012). Albert Einstein was known to have said: “Science without religion is lame, religion with science is blind.” We authors make use of the “paradox resolution” methods of physics to find a non-conflicting method by which God's actions communicate with human beings without violating any of the laws of science. The “communications paradox” is resolved by hypothesizing non-causal quantum-mechanical measurements as the way God communicates. the quantum-mechanical resolution of the “communications paradox” is completely consistent with both theist belief and the laws of science, whereas Kauffman's “cosmic mind” concept is seen to be consistent with pantheism.