Anjali R. Truitt

Frequency and age effects of secondary health conditions in individuals with spinal cord injury: a scoping review.

Study design:Scoping review.Objectives:To gain a better understanding of the prevalence, course and association with age of secondary health conditions in individuals with spinal cord injury (SCI).Setting:Seattle, Washington, USA.Methods:We performed searches of electronic databases for studies published from 1986–2011 that provided information regarding the prevalence, course or associations with age and duration of secondary health conditions in individuals with SCI.Results:Ninety-two studies were included. The findings indicate that: (1) individuals with SCI experience a number of secondary health conditions, many of which occur at a higher rate in those with SCI than the normative population; (2) the most common conditions or symptoms are pain, bowel and bladder regulation problems, muscle spasms, fatigue, esophageal symptom and osteoporosis; (3) a number of conditions, including cardiovascular disease, diabetes, bone mineral density loss, fatigue and respiratory complications or infections, occur with higher frequency in older individuals or those with longer SCI duration, relative to younger individuals or those with shorter SCI duration; and (4) there is a marked lack of longitudinal research examining the natural course of health conditions in individuals aging with SCI.Conclusions:The findings support the conclusion that individuals with SCI show signs of ‘premature aging’ in different organ systems. Longitudinal research is needed to understand when problems are most likely to emerge, and to develop and test the efficacy of interventions to prevent these health conditions and their negative impact.

Review of secondary health conditions in postpolio syndrome: prevalence and effects of aging.

ObjectiveThis study sought to better understand the prevalence and the severity of secondary health conditions in individuals with postpolio syndrome (PPS) as well as the association between these conditions and aging. DesignA scoping literature review was conducted searching electronic databases for studies published from 1986 to 2011. The scoping review provided information regarding the prevalence and associations of secondary health conditions in PPS with age or other duration-related variables. ResultsThe findings indicate that (1) individuals with PPS experience a number of serious secondary health conditions; (2) the most common conditions or symptoms are fatigue, pain, respiratory and sleep complaints, and increased risk for falls; (3) reports of the associations between the frequency or the severity of conditions and age-related factors are variable, perhaps because of methodological inconsistencies between studies; and (4) there is a marked lack of longitudinal research examining the natural course of health conditions in people aging with PPS. ConclusionsLongitudinal research is needed to understand the course of health conditions and the impact of multiple secondary conditions in people aging with PPS. Efforts are also needed to develop and test the efficacy of interventions to prevent these secondary health conditions or reduce their negative impact.

Engineering the Brain: Ethical Issues and the Introduction of Neural Devices

Neural devices now under development stand to interact with and alter the human brain in ways that may challenge standard notions of identity, normality, authority, responsibility, privacy and justice.

Printing Unrealistic Expectations: A Closer Look at Newspaper Representations of Noninvasive Prenatal Testing

Background: Informed consent is one of the major ethical issues raised in conversations about prenatal genetic testing, and understanding of the risks and benefits is a key component of informed consent. Because newspapers help translate complex scientific developments into understandable, practical insights, they can influence understanding of prenatal genetic testing outside of the clinical encounter. We assess the extent to which newspaper articles address concerns about accurately portraying cell-free fetal DNA testing and discuss how they create what we consider to be unrealistic expectations about this methodology. Methods: LexisNexis Academic was searched for United States-based newspapers to identify articles including discussion about cell-free fetal DNA testing for Down syndrome. This broad search yielded 447 articles. Two independent coders reviewed these articles for adherence to a specific set of inclusion criteria, and discrepancies were reconciled through consensus. Articles meeting the inclusion criteria (n = 23) were analyzed in terms of how they portrayed noninvasive prenatal testing. Results: Newspaper articles more often described the benefits of testing than the harms, suggesting to the reader that the benefits outweigh the risks. Many articles poorly explained costs and financial implications of testing as well as numerical evidence about accuracy, Down syndrome birth prevalence, and termination rates following prenatal diagnosis. While most articles included discussion or quotes where scientists and clinicians serve as experts, they sometimes insufficiently disclosed these experts’ relevant conflicts of interest. None of the articles included parents of adults with Down syndrome or those who choose to terminate pregnancies following prenatal diagnosis as external sources. Conclusions: We contend that newspaper framing of noninvasive prenatal testing is problematic, especially for the average health care consumer who may consider its clinical application. Ultimately, these representations may leave consumers with unrealistic expectations about such emerging technologies. Because of media influence on public understanding about noninvasive prenatal testing, readers must be critical of the information that media present, and clinicians should assess patient understanding at decision-making points in prenatal care.

Scoping Review of Common Secondary Conditions After Stroke and Their Associations with Age and Time Post Stroke

Abstract Background: Health care providers need to be alert to secondary conditions that might develop after stroke so that these conditions can be prevented or treated early to reduce further deterioration of health and quality of life. Objectives: To review and describe the prevalence of secondary conditions after stroke and to summarize associations between secondary conditions and age and time post stroke. Methods: A scoping review of studies pertaining to secondary conditions after stroke published between 1986 and 2011 was conducted. Results: Seventy-six articles provided information regarding 6 secondary conditions: depression, pain, falls, fatigue, bowel/bladder problems, and sleep difficulties. Prevalence varied widely across studies for each condition. The limited repeated-measures evidence suggests that secondary conditions tend to occur in the first weeks or months post stroke and may remain relatively stable over time. Other evidence from regression analyses suggests either no significant associations between time post stroke or age or mixed results. Secondary conditions appear to be most commonly associated with severity of impairments. Conclusions: Health care providers need to be alert to the development of secondary conditions after stroke in individuals as they age as well as in the poststroke time span. Obtaining a clear understanding of the prevalence of secondary conditions and associations with age and time post stroke is difficult because of variations in research methodologies. Future research is needed to define secondary condition prevalence and risk factors more clearly and to identify interventions that could reduce the prevalence and impact of these conditions on quality of life.

Prioritizing research topics: a comparison of crowdsourcing and patient registry

PurposeA cornerstone of patient-centered outcome research is direct patient involvement throughout the research process. Identifying and prioritizing research topics is a critical but often overlooked point for involvement, as it guides what research questions are asked. We assess the feasibility of involving individuals with low back pain in identifying and prioritizing research topics using two approaches: an existing patient registry and an online crowdsourcing platform. We compare and contrast the diversity of participants recruited, their responses, and resources involved.MethodsEligible participants completed a survey ranking their five highest priority topics from an existing list and supplying additional topics not previously identified. We analyzed their responses using descriptive statistics and content analysis.ResultsThe patient registry yielded older (mean age 72.4), mostly White (70%), and well-educated (95% high school diploma or higher) participants; crowdsourcing yielded younger (mean age 36.6 years), mostly White (82%), and well-educated (98% high school diploma or higher) participants. The two approaches resulted in similar research priorities by frequency. Both provided open-ended responses that were useful, in that they illuminate additional and nuanced research topics. Overall, both approaches suggest a preference towards topics related to diagnosis and treatment over other topics.ConclusionUsing a patient registry and crowdsourcing are both feasible recruitment approaches for engagement. Researchers should consider their approach, community, and resources when choosing their recruitment approach, as each approach has its own strengths and weaknesses. These approaches are likely most appropriate to supplement or to complement in-person and ongoing engagement strategies.

Keeping Disability in Mind: A Case Study in Implantable Brain–Computer Interface Research

Brain–Computer Interface (BCI) research is an interdisciplinary area of study within Neural Engineering. Recent interest in end-user perspectives has led to an intersection with user-centered design (UCD). The goal of user-centered design is to reduce the translational gap between researchers and potential end users. However, while qualitative studies have been conducted with end users of BCI technology, little is known about individual BCI researchers’ experience with and attitudes towards UCD. Given the scientific, financial, and ethical imperatives of UCD, we sought to gain a better understanding of practical and principled considerations for researchers who engage with end users. We conducted a qualitative interview case study with neural engineering researchers at a center dedicated to the creation of BCIs. Our analysis generated five themes common across interviews. The thematic analysis shows that participants identify multiple beneficiaries of their work, including other researchers, clinicians working with devices, device end users, and families and caregivers of device users. Participants value experience with device end users, and personal experience is the most meaningful type of interaction. They welcome (or even encourage) end-user input, but are skeptical of limited focus groups and case studies. They also recognize a tension between creating sophisticated devices and developing technology that will meet user needs. Finally, interviewees espouse functional, assistive goals for their technology, but describe uncertainty in what degree of function is “good enough” for individual end users. Based on these results, we offer preliminary recommendations for conducting future UCD studies in BCI and neural engineering.

Clinical verification of genetic results returned to research participants: findings from a Colon Cancer Family Registry

The extent to which participants act to clinically verify research results is largely unknown. This study examined whether participants who received Lynch syndrome (LS)‐related findings pursued researchers’ recommendation to clinically verify results with testing performed by a CLIA‐certified laboratory.