Psychological Characteristics and Goals of Caregivers Choosing Continuous Glucose Monitoring for Children With Type 1 Diabetes.

Background: Continuous glucose monitoring (CGM) can improve glycemic outcomes in pediatric type 1 diabetes management. However, its impact on the psychosocial functioning of caregivers is less well described. The objectives of this pilot study were to explore caregiver reasons for adding CGM to their child's type 1 diabetes management, parental psychosocial function before initiating CGM, and the relationship between the two. Methods: Thirty-two families with a child with type 1 diabetes from Rainbow Babies and Children's Hospital diabetes clinics who were initiating CGM were recruited over 3 months. Before CGM initiation, the caregivers completed the Fear of Hypoglycemia Scale, State-Trait Anxiety Inventory, Problem Areas in Diabetes Scale, and a questionnaire assessing their primary reason for starting CGM. Participant characteristics and questionnaire results were summarized with descriptive statistics. Participants were grouped by reason for starting CGM, and results were compared among groups using ANOVA and reporting the global F test. Results: Fifty percent of respondents indicated that they were starting CGM to optimize glycemic control. The majority of parents (71.8%) expressed worry about helplessness during a hypoglycemic episode. There were no statistically significant differences in patient characteristics or questionnaire results between groups. Forty-three percent of participating families started using CGM during the study's 8-month follow-up period. The main reason (64%) for not starting CGM was not having the chance to start the process of obtaining a CGM system. There were no statistically significant differences between children who did and did not start CGM. Conclusion: Caregivers have different reasons for starting CGM for their child with type 1 diabetes. Further studies are needed to understand whether these reasons are related to differences in psychosocial functioning. Despite interest in starting CGM, there remain barriers to implementation.

Psychosocial Adjustments Among Adolescents With Craniofacial Conditions and the Influence of Social Factors: A Multi-Informant Study.

BACKGROUND: Previous studies have investigated psychosocial adjustments among adolescents with cleft lip and/or palate (CL/P), but our understanding of other craniofacial conditions remains limited. The objective of this study is to compare psychosocial adjustments among 3 groups of adolescents: craniofacial conditions other than cleft lip and/or palate (craniofacial anomaly [CFA]), CL/P, and controls (CON). Our secondary objective is to examine how social factors may predict the adjustments levels. DESIGN: Cross-sectional, multi-informant, controlled survey study. PARTICIPANTS: Aged 11- to 17-year olds. Craniofacial anomaly (n = 49), isolated CL/P (n = 42), and 55 CON. Total = 146. OUTCOME MEASURES: The Strengths and Difficulties Questionnaire (self-report, parent report, and teacher report). RESULTS: All 3 informant groups displayed similar patterns, where CFA reported the highest difficulties, followed by CL/P, while CON scored the lowest. Parent reports demonstrated significant differences among the 3 groups for most subscales and were emphasized for peer problems. Self-reports showed significant differences between CFA and CON for total scores and peer problems, while teacher reports showed significant differences for peer problems only. Craniofacial anomaly displayed the highest frequency of abnormal psychosocial adjustments, followed by CL/P. Experiencing bullying or teasing predicted increased difficulties, while having a good friend predicted decreased difficulties. CONCLUSIONS: Adolescents with CFA, and to a lesser extent CL/P, may be at a higher risk of having psychosocial problems. Peer problems may constitute the biggest challenge that CFA and CL/P confront. Social factors, especially being bullied or having a good friend, may predict the psychosocial well-being of adolescents with craniofacial conditions.

Fast and accurate medication identification.

Much of the AI work in healthcare is focused around disease prediction in clinical settings, which is an important application that has yet to deliver in earnest. However, there are other fundamental aspects like helping patients and care teams interact and communicate in efficient and meaningful ways, which could deliver quadruple-aim improvements. After heart disease and cancer, preventable medical errors are the third leading cause of death in the United States. The largest subset of medical errors is medication error. Providing the right treatment plan for patients includes knowledge about their current medications and drug allergies, an often challenging task. The widespread growth of prescribing and consuming medications has increased the need for applications that support medication reconciliation. We show a deep-learning application that can help reduce avoidable errors with their attendant risk, i.e., correctly identifying prescription medication, which is currently a tedious and error-prone task. We demonstrate prescription-pill identification from mobile images in the NIH NLM Pill Image Recognition Challenge dataset. Our application recognizes the correct pill within the top-5 results at 94% accuracy, which compares favorably to the original competition winner at 83.3% for top-5 under comparable, though not identical configurations. The Institute of Medicine claims that better use of information technology can be an important step in reducing medication errors. Therefore, we believe that a more immediate impact of AI in healthcare will occur with a seamless integration of AI into clinical workflows, readily addressing the quadruple aim of healthcare.

Childhood Cancer and Brain Tumor Late Effects: Relationships with Family Burden and Survivor Psychological Outcomes.

This study examines illness-specific family burden as a mediator of the association between late effects of childhood cancer and survivors' emotional and behavioral outcomes. Childhood cancer survivors (n = 65; ages 10-17) two or more years off-treatment completed measures assessing internalizing and PTSD symptoms. Parents reported on illness-specific family burden, late effects severity, and survivor internalizing/externalizing problems. Providers documented the number of late effects. Illness-specific family burden was correlated with provider-reported late effects (r = .29, p < .05) and parent report of severe late effects (r = .56, p < .01). Results supported an indirect effect of illness-specific family burden on number of late effects and parent-reported survivor internalizing problems, p < .05. Indirect effects were not found in models predicting PTSD and externalizing problems. Illness-specific family burden is an important intervention target for reducing internalizing problems in childhood cancer survivors with late effects.

Biomedical informatics advancing the national health agenda: the AMIA 2015 year-in-review in clinical and consumer informatics.

The field of biomedical informatics experienced a productive 2015 in terms of research. In order to highlight the accomplishments of that research, elicit trends, and identify shortcomings at a macro level, a 19-person team conducted an extensive review of the literature in clinical and consumer informatics. The result of this process included a year-in-review presentation at the American Medical Informatics Association Annual Symposium and a written report (see supplemental data). Key findings are detailed in the report and summarized here. This article organizes the clinical and consumer health informatics research from 2015 under 3 themes: the electronic health record (EHR), the learning health system (LHS), and consumer engagement. Key findings include the following: (1) There are significant advances in establishing policies for EHR feature implementation, but increased interoperability is necessary for these to gain traction. (2) Decision support systems improve practice behaviors, but evidence of their impact on clinical outcomes is still lacking. (3) Progress in natural language processing (NLP) suggests that we are approaching but have not yet achieved truly interactive NLP systems. (4) Prediction models are becoming more robust but remain hampered by the lack of interoperable clinical data records. (5) Consumers can and will use mobile applications for improved engagement, yet EHR integration remains elusive.

Assessing patient and caregiver needs and challenges in information and symptom management: a study of primary brain tumors.

Brain cancer is a devastating diagnosis characterized by significant challenges and uncertainties for patients and their caregivers. Although mobile health and patient-facing technologies have been successfully implemented in many patient populations, tools and technologies to support these users are lacking. We conducted semi-structured interviews with 13 patients and caregivers, investigating experiences, challenges, interests, and preferences for managing symptoms and health information. We found that although current technology use in health-related activities was minimal, participants reported being highly willing to use such technologies to capture and manage information, provided they were designed according to the needs, interests, and abilities of these users. Participants felt that such tools could benefit patient care activities, and help to address information challenges for both current and future patients and caregivers. We present findings surrounding these challenges, behaviors, and motivations, and discuss considerations for the design of systems to support current and future patients and caregivers.

Communication about the risks and benefits of phase I pediatric oncology trials.

INTRODUCTION: Phase 1 pediatric oncology trials offer only a small chance of direct benefit and may have significant risks and an impact on quality of life. To date, research has not examined discussions of risks and benefits during informed consent conferences for phase 1 pediatric oncology trials. The objective of the current study was to examine clinician and family communication about risks, benefits, and quality of life during informed consent conferences for phase 1 pediatric oncology trials. METHODS: Participants included clinician investigators, parents, and children recruited from 6 sites conducting phase 1 pediatric oncology trials. Eighty-five informed consent conferences were observed and audiotaped. Trained coders assessed discussions of risks, benefits, and quality of life. Types of risks discussed were coded (e.g., unanticipated risks, digestive system risks, and death). Types of benefits were categorized as therapeutic (e.g., discussion of how participation may or may not directly benefit child), psychological, bridge to future trial, and altruism. RESULTS: Risks and benefits were discussed in 95% and 88% of informed consent conferences, respectively. Therapeutic benefit was the most frequently discussed benefit. The impact of trial participation on quality of life was discussed in the majority (88%) of informed consent conferences. CONCLUSION: Therapeutic benefit, risks, and quality of life were frequently discussed. The range of information discussed during informed consent conferences suggests the need for considering a staged process of informed consent for phase 1 pediatric oncology trials.

The global distribution of diet breadth in insect herbivores.

Understanding variation in resource specialization is important for progress on issues that include coevolution, community assembly, ecosystem processes, and the latitudinal gradient of species richness. Herbivorous insects are useful models for studying resource specialization, and the interaction between plants and herbivorous insects is one of the most common and consequential ecological associations on the planet. However, uncertainty persists regarding fundamental features of herbivore diet breadth, including its relationship to latitude and plant species richness. Here, we use a global dataset to investigate host range for over 7,500 insect herbivore species covering a wide taxonomic breadth and interacting with more than 2,000 species of plants in 165 families. We ask whether relatively specialized and generalized herbivores represent a dichotomy rather than a continuum from few to many host families and species attacked and whether diet breadth changes with increasing plant species richness toward the tropics. Across geographic regions and taxonomic subsets of the data, we find that the distribution of diet breadth is fit well by a discrete, truncated Pareto power law characterized by the predominance of specialized herbivores and a long, thin tail of more generalized species. Both the taxonomic and phylogenetic distributions of diet breadth shift globally with latitude, consistent with a higher frequency of specialized insects in tropical regions. We also find that more diverse lineages of plants support assemblages of relatively more specialized herbivores and that the global distribution of plant diversity contributes to but does not fully explain the latitudinal gradient in insect herbivore specialization.

Competencies in Training at the Graduate Student Level: Example of a Pediatric Psychology Seminar Course.

The recently developed competencies in pediatric psychology from the Society of Pediatric Psychology (SPP) Task Force on Competencies and Best Training Practices in Pediatric Psychology provide a benchmark to evaluate training program practices and student progress toward training in level-specific competency goals. Graduate-level training presents a unique challenge for addressing the breadth of competencies required in pediatric psychology while maintaining development of broader clinical psychology training goals. We describe a recurring graduate-level pediatric psychology seminar course that addresses training in a number of the competency cluster areas. The structure of the seminar, examples of classroom topics that correspond with competency cluster areas as well as benchmarks used to evaluate each student's development in the competency area are provided. Specific challenges in developing and maintaining the seminar in this format are identified, and possible solutions are offered. This training format could serve as a model for established pediatric psychology programs to expand their didactic training goals or for programs without formal pediatric psychology training to address competencies outside of clinical placements.

Parenting stress among caregivers of children with chronic illness: a systematic review.

OBJECTIVE: To critically review, analyze, and synthesize the literature on parenting stress among caregivers of children with asthma, cancer, cystic fibrosis, diabetes, epilepsy, juvenile rheumatoid arthritis, and/or sickle cell disease. Method PsychInfo, MEDLINE, and Cumulative Index to Nursing and Allied Health Literature were searched according to inclusion criteria. Meta-analysis of 13 studies and qualitative analysis of 96 studies was conducted. Results Caregivers of children with chronic illness reported significantly greater general parenting stress than caregivers of healthy children (d = .40; p = ≤.0001). Qualitative analysis revealed that greater general parenting stress was associated with greater parental responsibility for treatment management and was unrelated to illness duration and severity across illness populations. Greater parenting stress was associated with poorer psychological adjustment in caregivers and children with chronic illness. Conclusion Parenting stress is an important target for future intervention. General and illness-specific measures of parenting stress should be used in future studies.

Communicating and understanding the purpose of pediatric phase I cancer trials.

PURPOSE: Quality informed consent should provide a clear understanding of the purpose of the research. Given the ethical challenges of pediatric phase I cancer trials, it is important to investigate physician-parent communication during informed consent conferences (ICCs) and parental understanding of the purpose of these studies. METHODS: In the multisite Informed Consent in Pediatric Phase I Cancer Trials study, 85 ICCs for phase I research between June 2008 and May 2011 were directly observed, and 60 parents were subsequently interviewed. The scientific purpose was defined as composite understanding of drug safety, dose finding, and dose escalation. We determined the frequency with which physicians explained these and other phase I-related concepts during the ICC. Parent interviews were analyzed to determine understanding. RESULTS: The child was present at 83 of 85 ICCs. Only 32% of parents demonstrated substantial understanding of the scientific purpose of phase I cancer trials; 35% demonstrated little or no understanding. Parents of higher socioeconomic status and racial majority status were more likely to understand the scientific purpose. Factors associated with understanding included physician explanation of the goal of the applicable phase I protocol offered (explained in 85% of ICCs) and explanation of the dose cohorts (explained in 43% of ICCs). Physicians explained drug safety in 23% of ICCs, dose finding in 52% of ICCs, and dose escalation in 53% of ICCs. CONCLUSION: Many parents of children participating in phase I trials do not understand the purpose of these trials. Physician-parent communication about the purpose of phase I research is lacking during ICCs.

Parent participation and physician-parent communication during informed consent in child leukemia.

OBJECTIVE: In this study we evaluated the effectiveness of a physician-directed intervention at enhancing positive physician behaviors and communication strategies during informed consent conferences (ICCs) for pediatric acute leukemia clinical trials. PATIENTS AND METHODS: Physicians at 2 large pediatric hospitals were recruited to participate in a physician-directed intervention (PDI), which included 1 full-day seminar and successive half-day booster sessions. ICCs were then observed, audiotaped, coded, and analyzed to evaluate the effectiveness of the intervention. Data also were collected at 2 control sites. Between 2003 and 2007, 59 ICCs were observed and analyzed. RESULTS: Significant group differences were found in physician rapport-building behaviors. Physicians in the PDI + booster session group engaged in greater rapport-building than did physicians in the PDI group who did not attend booster sessions and physicians in the control group. No group differences were detected for physician partnership-building. In addition, parents in the PDI + booster session group engaged in more general communication and study-related communication, and mothers in the PDI groups asked significantly more questions per minute than did mothers in the control group. CONCLUSIONS: These results provide support for the effectiveness of the PDI at enhancing positive physician behaviors. Booster-session attendance is a critical component of physician-directed interventions to improve parental participation and physician-parent communication during ICCs.

The concept of bootstrapping of structural equation models with smaller samples: an illustration using mealtime rituals in diabetes management.

OBJECTIVE: The objective of this study was to offer a practical demonstration of the use of bootstrapping in structural equation modeling (SEM) with smaller samples by evaluating family dinnertime rituals at the intersection between the family social environment and pediatric type 1 diabetes mellitus management. METHOD: Participants were 77 children and adolescents aged 6 to 18 years and their mothers from a larger study of child and parental challenges related to managing the treatment regimen and correlates of adherence. SEM was used to test a model of maternal reports of the family social environment as exogenous variables with mealtime rituals and child hemoglobin A1c levels as endogenous variables. The bootstrapping procedure and the Bollen-Stine bootstrapped χ test were then applied to test the stability and appropriateness of this model. RESULTS: Using SEM, the final model had robust goodness-of-fit indicators and revealed that the family social environment characteristics of control and cohesion were related to mealtime rituals, which was associated with hemoglobin A1c levels. The bootstrapping procedure indicated that the parameter estimates were very stable, thus lending greater credence to the model. The Bollen-Stine approach provided evidence that the entire hypothesized model was not significantly different from the model derived from bootstrapping. CONCLUSIONS: This investigation offers a practical demonstration of the bootstrapping technique and the Bollen-Stine approach for testing models on smaller samples in SEM. These techniques may be used with relatively small samples, which are common in developmental/behavioral pediatrics and pediatric psychology research.

Automatic extraction of concepts to extend RadLex.

RadLex™, the Radiology Lexicon, is a controlled vocabulary of terms used in radiology. It was developed by the Radiological Society of North America in recognition of a lack of coverage of these radiology concepts by other lexicons. There are still additional concepts, particularly those related to imaging observations and imaging observation characteristics, that could be added to the lexicon. We used a free and open source software system to extract these terms from the medical literature. The system retrieved relevant articles from the PubMed repository and passed them through modules in the Apache Unstructured Information Management Architecture. Image observations and image observation characteristics were identified through a seven-step process. The system was run on a corpus of 1,128 journal articles. The system generated lists of 624 imaging observations and 444 imaging observation characteristics. Three domain experts evaluated the top 100 terms in each list and determined a precision of 52% and 26%, respectively, for identification of image observations and image observation characteristics. We conclude that candidate terms for inclusion in standardized lexicons may be extracted automatically from the peer-reviewed literature. These terms can then be reviewed for curation into the lexicon.

A feasibility trial of a video intervention to improve informed consent for parents of children with leukemia.

BACKGROUND: Research on parental understanding of informed consent for pediatric randomized clinical trials (RCTs) has highlighted weaknesses in understanding of key aspects of informed consent. The goals of the current study were to assess the feasibility of and parental satisfaction with a video intervention to improve informed consent for pediatric leukemia RCTs and to compare parental question asking during informed consent conferences (ICCs) for parents in the current study with historical control data. PROCEDURE: A 20-min video was produced. Utilizing the principles of anticipatory guidance, it included information delivered by nurses and physicians about leukemia and key aspects of informed consent. Parents were encouraged to be active participants in ICCs. Participants included 12 parents of children newly diagnosed with pediatric leukemia. The video was viewed by local pediatric oncologists prior to utilization with families. RESULTS: Ninety-two percent of parents reported that the video made it easier to understand information that their child's physician later provided; 83% of parents reported that it helped them to think of questions to ask the physician; and 67% of parents indicated that the video made them feel more comfortable with asking questions of the physician. Results of a t-test comparing question asking during ICCs revealed that parents who participated in the intervention asked a higher rate of questions than parents from a historical control sample (t = 1.95, P = 0.05). DISCUSSION: Our study supports the feasibility and potential efficacy of a brief video intervention employing anticipatory guidance to prepare parents for future discussions about RCTs.

Attentional retraining: a randomized clinical trial for pathological worry.

OBJECTIVE: Research has consistently shown that highly anxious individuals tend to show an attentional bias in favor of threat cues (i.e., a threat bias). Further, recent evidence suggests that it is possible to modify patterns of attention allocation for such stimuli and the resulting changes in attention allocation alter affective responses to stress. However, to date such changes in patterns of attention have been shown only over brief time intervals and only in non-anxious individuals who lack a pre-existing attentional bias. In contrast, the present study tested the efficacy of such attentional training in a sample of severe worriers over an extended period of time using psychometrically validated measures of anxiety and depression. METHOD: Twenty-four adult participants reporting severe worry were randomly assigned to receive five sessions of either computer-delivered attentional retraining or sham training. The study was conducted from January to August 2001 and June to August 2002. RESULTS: Significant Treatment Group X Time interactions were found for both threat bias (p=001) and a composite measure of anxious and depressive symptoms (p=.002). Compared to sham-training, the active retraining program produced significant reductions in both threat bias and symptoms. CONCLUSIONS: These data support the view that an attentional bias in favor of threat cues is an important causal factor in generalized anxiety and suggest that a computer-based attentional retraining procedure may be an effective component of treatment.

Anticipatory guidance to improve informed consent: a new application of the concept.

Although the concept of anticipatory guidance has long been used in general pediatrics to help prepare parents for what to expect in the coming months or year, this educational concept has not been transplanted for use in other contexts. The intervention described in this article uses the principles of anticipatory guidance in an effort to prepare parents of children with newly diagnosed acute leukemia for their upcoming discussions with their child's physician. Parents of children recently diagnosed with leukemia frequently feel overwhelmed and are anxious to discover what can be done to cure their child. By using the abilities of already medically trained oncology nurses and orienting them to conduct an intervention to educate, (empathize) emphasize, and prepare parents for the informed consent conference, this anticipatory guidance-based intervention was designed to target barriers to effective communication and increase the interactivity between families and health care providers.

The role of the consent document in informed consent for pediatric leukemia trials.

PURPOSE: To examine both the use of the consent document during the informed consent process for pediatric leukemia clinical trials, as well as relationships between the use of the document and parental understanding of essential elements of informed consent. METHODS: Participants included 140 parents of children diagnosed with pediatric leukemia. Informed consent conferences in which randomized clinical trials were discussed were observed, audiotaped, and coded for specific behaviors. Parents were also interviewed within 48 h of their participation in informed consent conferences. RESULTS: Observations revealed that 74% of cases included explanation of consent documents during consent conferences. Parents who reported that they read the consent document were more likely to understand differences between the clinical trial and off study therapy and were more likely to understand the right to withdraw. Reading of the consent document was not associated with understanding of voluntariness. In comparison to racial/ethnic majority parents, racial/ethnic minority parents were less likely to report that they read the consent document, understand voluntariness or the right to withdraw, and were less likely to be able to distinguish between the clinical trial and off study therapy. Low SES was associated with a lower probability of reading the consent document and being able to distinguish between clinical trials and off study therapy. CONCLUSIONS: Attention to the importance of reading the consent document and improving communication during consent conferences is likely to enhance understanding of essential elements of informed consent.

Recommending randomized trials for pediatric leukemia: observer and physician report of recommendations.

Physicians' presentation of treatment options in a non-coercive manner is critical for informed consent for participation in randomized clinical trials (RCTs). This study examined discrepancies between observer and physician report of treatment recommendations for pediatric leukemia RCTs. This study also assessed relationships between recommendations and decisions to participate in RCTs. Participants were 104 parents of children with leukemia and the treating physicians. Measures included observations of informed consent conferences (ICCs), physician report of treatment recommendations, and parent report of trial participation. Observation revealed that physicians recommended RCTs in 38% of ICCs, while physicians reported recommending RCTs in 73% of ICCs. Treatment recommendations were unrelated to decisions to participate in RCTs. Results highlight the importance of enhancing parent-physician communication regarding RCT participation.

Temperament, anxiety, and the processing of threat-relevant stimuli.

This article discusses converging evidence from developmental, clinical, and cognitive psychology suggesting that there is significant overlap between research findings on affect, temperament, and attentional processes associated with pathological anxiety. We offer a proposal for the integration of these 3 areas aimed at developing a more clear understanding of the developmental sequence and operative mechanisms in the dysregulation of negative affect and the development of symptoms of anxiety pathology. We review evidence for a model indicating that reactive and effortful temperamental processes, possibly mediated by an attentional bias toward threat-relevant information, interact to produce problems of dysregulated negative affect and elevated levels of pathological anxiety. This model may assist in understanding the development of anxiety disorders, identifying children at risk for such disorders, and selecting points of entry for both preventative and curative interventions.