Understanding self-management behaviors in symptomatic adults with uncertain etiology using an illness perceptions framework

The self-management behaviors of individuals with medical conditions that have an unknown etiology have not been studied. This study assesses the relationship between illness perceptions and various illness self-management behaviors in patients undergoing clinical genomic sequencing to identify a genetic cause for their condition. Hierarchical linear regression, Poisson linear regression, and logistic regression were used to assess the effect of illness perceptions (i.e., perceived consequences, timeline, personal control, treatment control, identity, concern, understanding, emotional impact, and causal beliefs as measured by the Brief Illness Perceptions Questionnaire) on healthcare use, prescription medication use, and doctor recommended supplement use, respectively (n = 200). Analyses revealed that (1) illness identity beliefs were positively associated with healthcare use (β =.20, p =.04), (2) both treatment control beliefs (B =.03, p =.02) and genetic causal beliefs (B =.17, p =.049) were positively associated with prescription medication use, and (3) both timeline beliefs (OR =1.23, p =.02) and emotional impact (OR =1.20, p =.02) were positively associated with doctor recommended supplement use. These findings can be used to inform the development of guidelines for treating patients who are seeking a genetic diagnosis for their illness

Patient hopes for diagnostic genomic sequencing: roles of uncertainty and social status

For patients with unexplained or undiagnosed conditions, genomic sequencing offers the hope of resolving unanswered questions. With the growth of clinical genomic sequencing, understanding factors that shape patients' hope for information could have important implications for developing patient education guidelines. Based on the goal-directed theory of hope, we investigated illness uncertainty as a form of motivation and subjective social status as a form of perceived resources to predict the amount and kinds of information that adult patients (N=191) and parents of pediatric patients (N=79) hoped to receive from diagnostic sequencing results. Participants were part of a larger longitudinal study on clinical genomic sequencing, but the current study focuses on their hopes for diagnostic sequencing results. Hopes for information were assessed through close-ended and open-ended responses. Findings from mixed methods analyses indicated that although patients and parents hoped to learn multiple kinds of information from diagnostic sequencing results, their hopes appeared to be influenced by their illness uncertainty and perceptions of their social and economic resources. These findings suggest that patients' illness uncertainty and perceived resources could be useful avenues for discussing patient hopes and educating patients about strengths and limitations of genomic sequencing

I Keep my Problems to Myself: Negative Social Network Orientation, Social Resources, and Health-Related Quality of Life in Cancer Survivors

Cancer survivors treated with hematopoietic stem cell transplant rely on their social network for successful recovery. However, some survivors have negative attitudes about using social resources (negative social network orientation) that are critical for their recovery

Supporting Parental Decisions About Genomic Sequencing for Newborn Screening: The NC NEXUS Decision Aid

Advances in genomic sequencing technology have raised fundamental challenges to the traditional ways genomic information is communicated. These challenges will become increasingly complex and will affect a much larger population in the future if genomics is incorporated into standard newborn screening practice. Clinicians, public health officials, and other stakeholders will need to agree on the types of information that they should seek and communicate to parents. Currently, few evidence-based and validated tools are available to support parental informed decision-making. These tools will be necessary as genomics is integrated into clinical practice and public health systems. In this article we describe how the North Carolina Newborn Exome Sequencing for Universal Screening study is addressing the need to support parents in making informed decisions about the use of genomic testing in newborn screening. We outline the context for newborn screening and justify the need for parental decision support. We also describe the process of decision aid development and the data sources, processes, and best practices being used in development. By the end of the study, we will have an evidenced-based process and validated tools to support parental informed decision-making about the use of genomic sequencing in newborn screening. Data from the study will help answer important questions about which genomic information ought to be sought and communicated when testing newborns

How risky is it to use e-cigarettes? Smokers’ beliefs about their health risks from using novel and traditional tobacco products

We sought to understand smokers’ perceived likelihood of health problems from using cigarettes and four non-cigarette tobacco products (NCTPs: e-cigarettes, snus, dissolvable tobacco, and smokeless tobacco). A US national sample of 6,607 adult smokers completed an online survey in March 2013. Participants viewed e-cigarette use as less likely to cause lung cancer, oral cancer, or heart disease compared to smoking regular cigarettes (all p < .001). This finding was robust for all demographic groups. Participants viewed using NCTPs other than e-cigarettes as more likely to cause oral cancer than smoking cigarettes but less likely to cause lung cancer. The dramatic increase in e-cigarette use may be due in part to the belief that they are less risky to use than cigarettes, unlike the other NCTPs. Future research should examine trajectories in perceived likelihood of harm from e-cigarette use and whether they affect regular and electronic cigarette use

Physical, psychological, and social sequelae following hematopoietic stem cell transplantation: a review of the literature

Objective: This article reviews recent literature on adults' quality of life following hematopoietic stem cell transplantation (HSCT). Methods: We identified 22 prospective reports with at least 20 participants at baseline through a search of databases (Medline and PsycInfo) and handsearching of articles published from 2002 to October 2007. If longitudinal data were not available or were scarce for a particular topic or time point, cross-sectional studies were reviewed. Results: Although physical, psychological, and social aspects of quality of life tend to improve during the years following transplantation, a significant proportion of HSCT survivors experience persistent anxiety and depressive symptoms, fatigue, sexual dysfunction, and fertility concerns. Despite ongoing treatment side effects, the majority of HSCT survivors resume their work, school, or household activities. Conclusion: We conclude that theory-driven research with larger samples is needed to identify subgroups of HSCT survivors with adjustment difficulties. Such research would examine survivors' evolving standards and definitions of quality of life to improve the accuracy and meaningfulness of assessment and incorporate biological, psychological, and contextual factors that may contribute to positive adjustment. Copyright © 2008 John Wiley & Sons, Ltd

The association of depression and diabetes across methods, measures, and study contexts

Abstract Background Empirical research has revealed a positive relationship between type 2 diabetes mellitus and depression, but questions remain regarding timing of depression measurement, types of instruments used to measure depression, and whether “depression” is defined as clinical depression or depressive symptoms. The present study sought to establish the robustness of the depression-diabetes relationship across depression definition, severity of depressive symptoms, recent depression, and lifetime depression in a nationally representative dataset and a large rural dataset. Methods The present examination, conducted between 2014 and 2015, used two large secondary datasets: the National Health and Nutrition Examination Survey (NHANES) from 2007 to 2008 (n = 3072) and the Arthritis, Coping, and Emotion Study (ACES) from 2002 to 2006 (n = 2300). Depressive symptoms in NHANES were measured using the Patient Health Questionnaire 9-item survey (PHQ-9). ACES used the Center for Epidemiologic Studies—Depression Scale (CES-D) to measure depressive symptoms and the Composite International Diagnostic Interview (CIDI) to measure diagnosable depression. Diabetes was modelled as the dichotomous outcome variable (presence vs. absence of diabetes). Logistic regression was used for all analyses, most of which were cross-sectional. Analyses controlled for age, ethnicity, sex, education, and body mass index, and NHANES analyses used sample weights to account for the complex survey design. Additional analyses using NHANES data focused on the addition of health behavior variables and inflammation to the model. Results NHANES. Every one-point increase in depressive symptoms was associated with a 5% increase in odds of having diabetes [OR: 1.05 (CI: 1.03, 1.07)]. These findings persisted after controlling for health behaviors and inflammation. ACES. For every one-point increase in depressive symptom score, odds of having diabetes increased by 2% [OR: 1.02 (CI: 1.01, 1.03)]. Recent (past 12 months) depression [OR: 1.49, (CI: 1.03, 2.13)] and lifetime depression [OR: 1.40 (CI: 1.09, 1.81)] were also significantly associated with having diabetes. Conclusions This study provides evidence for the robustness of the relationship between depression or depressive symptoms and diabetes and demonstrates that depression occurring over the lifetime can be associated with diabetes just as robustly as that which occurs more proximal to the time of study measurement

Is “incidental finding” the best term?: a study of patients’ preferences

There is debate within the genetics community about the optimal term to describe genetic variants unrelated to the test indication, but potentially important for health. Given the lack of consensus and the importance of adopting terminology that promotes effective clinical communication, we sought the opinion of clinical genetics patients

How Can Psychological Science Inform Research About Genetic Counseling for Clinical Genomic Sequencing?

Next generation genomic sequencing technologies (including whole genome or whole exome sequencing) are being increasingly applied to clinical care. Yet, the breadth and complexity of sequencing information raise questions about how best to communicate and return sequencing information to patients and families in ways that facilitate comprehension and optimal health decisions. Obtaining answers to such questions will require multidisciplinary research. In this paper, we focus on how psychological science research can address questions related to clinical genomic sequencing by explaining emotional, cognitive, and behavioral processes in response to different types of genomic sequencing information (e.g., diagnostic results and incidental findings). We highlight examples of psychological science that can be applied to genetic counseling research to inform the following questions: (1) What factors influence patients’ and providers’ informational needs for developing an accurate understanding of what genomic sequencing results do and do not mean?; (2) How and by whom should genomic sequencing results be communicated to patients and their family members?; and (3) How do patients and their families respond to uncertainties related to genomic information?Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/147034/1/jgc40193.pd

Erratum to: How Can Psychological Science Inform Research About Genetic Counseling for Clinical Genomic Sequencing?

Peer Reviewedhttps://deepblue.lib.umich.edu/bitstream/2027.42/147141/1/jgc40372.pd