Perceived stress in prodromal Huntington disease

This study examines perceived stress and its relationship to depressive symptoms, life changes and functional capacity in a large sample of individuals who are positive for the Huntington disease (HD) gene expansion but not yet diagnosed. Participants were classified by estimated proximity to HD diagnosis (far, mid, near) and compared with a non-gene-expanded comparison group. Persons in the mid group had the highest stress scores. A significant interaction between age and time since HD genetic testing was also found. Secondary analyses using data from a different data collection point and including a diagnosed group showed the highest stress scores in the diagnosed group. Possible explanations and implications are discussed.     

Construction and validation of the South African version of the Fear Survey Schedule for Children: an exploratory factor analysis

The Fear Survey Schedule for Children-Revised (Ollendick, 1983) is an 80-item self-report instrument that has been used internationally to asses the number of fears and general level of fearfulness among children. Despite its widespread use, this instrument has not been adapted to the South African context. The present study addressed this gap by means of a 2-phase investigation aimed at developing a South African version of the instrument. In Phase 1, semistructured interviews were conducted with 40 children (7 to 13 years of age). Qualitative data obtained from these interviews were used to construct additional items for inclusion in the South African Fear Survey Schedule for Children-Revised. The modified scale, consisting of 97 items, was then administered to a sample of 646 children between the ages of 7 and 13 years. Further psychometric considerations resulted in the final version of the scale consisting of 74 items with high internal consistency (α=.97). The factor structure was explored by means of principal component analysis with varimax rotation and a 5-factor solution was found to provide the best conceptual fit. The factors identified were as follows: Fear of Death and Danger; Fear of the Unknown; Fear of Small Animals and Minor Threats to Self; Large Animal Fears; and Situational Fears. Differences between the South African version and the original Fear Survey Schedule for Children-Revised are noted and implications for the study of fear in South Africa and other countries are discussed.     

The development of a psychoanalytic outcome study: choices, conflicts, and consensus

This article tells the story of the development of an outcome study of psychoanalysis and describes the debate that took place over critical methodological issues. The protocol committee included career psychotherapy researchers who have conducted rigorous outcome studies, clinical psychoanalysts, study methodologists, and a statistician with clinical trial expertise. The committee worked for two years to develop the study design. This project is based on the premise that clinical psychoanalysis is a treatment. Areas specifically addressed are the goals and hypothesis of the study, inclusion and exclusion criteria, choice of psychotherapies as comparison treatments, definition of treatments and selection of therapists, use of medication, development of a treatment adherence measure, randomization of patient assignment vs. patient self-selection, and primary outcome measures. The execution of this outcome study will require significant effort and resources. A positive result would boost the standing of psychoanalysis, but the results may not support the primary hypothesis that there are therapeutic benefits unique to psychoanalysis and that psychoanalysis can effect demonstrable changes in a patient's mental life and adaptation that are not achieved by treatments of different orientation and/or lesser intensity. However, more important than whatever specific results emerge is what executing such a study requires of our field: the process of addressing the clinical issues that a study design requires, the creation of a network of analysts around the country working on a common project, and the joining of the clinical psychoanalytic community with a community of psychodynamic researchers.     

Additive effects of social and non‐social attention during infancy relate to later autism spectrum disorder

Emerging findings from studies with infants at familial high risk for autism spectrum disorder (ASD), owing to an older sibling with a diagnosis, suggest that those who go on to develop ASD show early impairments in the processing of stimuli with both social and non‐social content. Although ASD is defined by social‐communication impairments and restricted and repetitive behaviours, the majority of cognitive theories of ASD posit a single underlying factor, which over development has secondary effects across domains. This is the first high‐risk study to statistically differentiate theoretical models of the development of ASD in high‐risk siblings using multiple risk factors. We examined the prediction of ASD outcome by attention to social and non‐social stimuli: gaze following and attentional disengagement assessed at 13 months in low‐risk controls and high‐risk ASD infants (who were subsequently diagnosed with ASD at 3 years). When included in the same regression model, these 13‐month measures independently predicted ASD outcome at 3 years of age. The data were best described by an additive model, suggesting that non‐social attention, disengagement, and social attention as evidenced by gaze following, have a cumulative impact on ASD risk. These data argue against cognitive theories of ASD which propose that a single underlying factor has cascading effects across early development leading to an ASD outcome, and support multiple impairment models of ASD that are more consistent with recent genetic and neurobiological evidence.     

Development and Pilot Testing of a Decision Aid for Genomic Research Participants Notified of Clinically Actionable Research Findings for Cancer Risk

Germline genomic testing is increasingly used in research to identify genetic causes of disease, including cancer. However, there is evidence that individuals who are notified of clinically actionable research findings have difficulty making informed decisions regarding uptake of genetic counseling for these findings. This study aimed to produce and pilot test a decision aid to assist participants in genomic research studies who are notified of clinically actionable research findings to make informed choices regarding uptake of genetic counseling. Development was guided by published literature, the International Patient Decision Aid Standards, and the expertise of a steering committee of clinicians, researchers, and consumers. Decision aid acceptability was assessed by self-report questionnaire. All 19 participants stated that the decision aid was easy to read, clearly presented, increased their understanding of the implications of taking up research findings, and would be helpful in decision-making. While low to moderate levels of distress/worry were reported after reading the booklet, a majority of participants also reported feeling reassured. All participants would recommend the booklet to others considering uptake of clinically actionable research findings. Results indicate the decision aid is acceptable to the target audience, with potential as a useful decision support tool for genomic research participants.