An emerging field of research: challenges in pediatric decision making

There is growing interest in pediatric decision science, spurred by policies advocating for children's involvement in medical decision making. Challenges specific to pediatric decision research include the dynamic nature of child participation in decisions due to the growth and development of children, the family context of all pediatric decisions, and the measurement of preferences and outcomes that may inform decision making in the pediatric setting. The objectives of this article are to describe each of these challenges, to provide decision researchers with insight into pediatric decision making, and to establish a blueprint for future research that will contribute to high-quality pediatric medical decision making. Much work has been done to address gaps in pediatric decision science, but substantial work remains. Understanding and addressing the challenges that exist in pediatric decision making may foster medical decision-making science across the age spectrum

Impact of false-positive newborn metabolic screening results on early health care utilization

Purpose: To analyze the association between false-positive newborn screening results and health care utilization. Methods: We surveyed parents regarding their children's health care utilization. Parents of children who received false-positive newborn screening results were primarily enrolled by a screening laboratory in Pennsylvania. Parents of children with normal results were recruited through the Massachusetts birth registry. We used bivariate tests and multivariate regression to assess the association between newborn screening results and primary care utilization, emergency room use, and hospitalization by age six months. Results: Our sample included 200 children with false-positive results and 137 with normal results. Variation in recruitment strategies led to sample children with false-positive results being more likely to be non-white, have unmarried parents and be of lower socioeconomic status. After adjusting for significant covariates, such as age, race and socioeconomic status, there were no significant associations between newborn screening results and child health care utilization. Conclusions: Despite the reported negative psychosocial effects of false-positive results, our study found no impact on early health care utilization. These results may assist in economic analyses of newborn screening as they suggest that medical costs associated with false-positive results are limited to the cost of diagnostic testing and follow-up

Physicians\u27 Perceptions of Shared Decision Making in Chronic Disease and Its Barriers and Facilitators

This study assessed pediatric physicians’ use of shared decision making (SDM) in two chronic conditions. Most physicians indicated that parent and adolescent trust and emotional readiness facilitated SDM, physicians’ preferred approach to decision making. At the same time, they perceived few barriers, other than insurance limitations, to using SDM

Physicians' Perceptions of Shared Decision Making in Chronic Disease and Its Barriers and Facilitators

This study assessed pediatric physicians’ use of shared decision making (SDM) in two chronic conditions. Most physicians indicated that parent and adolescent trust and emotional readiness facilitated SDM, physicians’ preferred approach to decision making. At the same time, they perceived few barriers, other than insurance limitations, to using SDM

Physicians\u27 Perceptions of Shared Decision Making in Chronic Disease and Its Barriers and Facilitators

This study assessed pediatric physicians’ use of shared decision making (SDM) in two chronic conditions. Most physicians indicated that parent and adolescent trust and emotional readiness facilitated SDM, physicians’ preferred approach to decision making. At the same time, they perceived few barriers, other than insurance limitations, to using SDM

DEC-12 “The Hardest Decision I Ever Had”: Parent Decision Making About Tnf-Alpha Inhibitor Treatment

Purpose: Parents’ treatment decisions in pediatric chronic disease are often complicated by tradeoffs between disease and treatment risks, as well as the difficulty of proxy decision making. The objective of this study was to describe the information and process parents use to make treatment decisions for their children with chronic conditions; using decisions about TNF-α inhibitor (TNFαi) treatment, which has risks of immunosuppression and malignancy, as a model. Method: We conducted semi-structured interviews with parents of children with Crohn’s Disease (CD) (n = 14) or Juvenile Idiopathic Arthritis (JIA) (n = 20) who had experience deciding about TNFαi treatment. Participants had made a decision within the prior year, been referred to the study BECause of difficulty in decision making or were in the process of making the decision. Interview questions, developed based on existing pediatric decision-making literature and the Ottawa Decision Support Framework, were focused on information used to make decisions, factors that influenced decision making and the decision timeline. We used thematic analysis for all coding and analysis. Coding structure was developed through multidisciplinary team review of the initial interviews. Two coders then coded the remaining interviews, compared coding, and resolved disagreements through discussion. Data were analyzed by thematic grouping and compared between CD and JIA. Result: For nearly all parents, the decision about TNFαi treatment was the most challenging medical decision they had made. However, parents of children with CD experienced more, and ongoing, stress and anxiety related to the decision. In both groups, parents sought information from multiple sources including health care providers, the internet and social contacts. They looked for information related to treatment effectiveness, side-effects and individuals’ experiences with such treatment. In CD, where the decision often occurred over weeks to months, information was most often used to help make the decision. In contrast, in JIA the decision was often made in a single clinic appointment and information was then used to confirm the parent’s choice. Conclusion: Even after a decision has been made, some parents are left with persistent information needs, long-lasting concerns and worry related to TNFαi treatment for their child. Providing parents with structured support, including treatment-specific information, during TNFαi decision making may lead to improved decision quality, decreased psychosocial distress and, ultimately, improved outcomes for their childre

An evidence development process for newborn screening

This article describes the background, development, and initial implementation of new procedures for the systematic review of key issues in newborn screening. Building on the work of other systematic review efforts, the Evidence Review Group described here has aimed to develop consistent and transparent strategies for evidence review. This process has helped to strengthen a complex analysis and decision system by providing balanced evidence, taking into account available high-quality data, expert opinion, and other levels of evidence, in a transparent manner. The methods developed and the identification of areas of missing data may also help investigators begin to standardize the clinical and laboratory data they collect pertaining to the newborn screening and diagnosis of rare disorders and their outcomes and focus future research efforts in the most needed areas

DEC-12 “The Hardest Decision I Ever Had”: Parent Decision Making About Tnf-Alpha Inhibitor Treatment

Purpose: Parents’ treatment decisions in pediatric chronic disease are often complicated by tradeoffs between disease and treatment risks, as well as the difficulty of proxy decision making. The objective of this study was to describe the information and process parents use to make treatment decisions for their children with chronic conditions; using decisions about TNF-α inhibitor (TNFαi) treatment, which has risks of immunosuppression and malignancy, as a model. Method: We conducted semi-structured interviews with parents of children with Crohn’s Disease (CD) (n = 14) or Juvenile Idiopathic Arthritis (JIA) (n = 20) who had experience deciding about TNFαi treatment. Participants had made a decision within the prior year, been referred to the study BECause of difficulty in decision making or were in the process of making the decision. Interview questions, developed based on existing pediatric decision-making literature and the Ottawa Decision Support Framework, were focused on information used to make decisions, factors that influenced decision making and the decision timeline. We used thematic analysis for all coding and analysis. Coding structure was developed through multidisciplinary team review of the initial interviews. Two coders then coded the remaining interviews, compared coding, and resolved disagreements through discussion. Data were analyzed by thematic grouping and compared between CD and JIA. Result: For nearly all parents, the decision about TNFαi treatment was the most challenging medical decision they had made. However, parents of children with CD experienced more, and ongoing, stress and anxiety related to the decision. In both groups, parents sought information from multiple sources including health care providers, the internet and social contacts. They looked for information related to treatment effectiveness, side-effects and individuals’ experiences with such treatment. In CD, where the decision often occurred over weeks to months, information was most often used to help make the decision. In contrast, in JIA the decision was often made in a single clinic appointment and information was then used to confirm the parent’s choice. Conclusion: Even after a decision has been made, some parents are left with persistent information needs, long-lasting concerns and worry related to TNFαi treatment for their child. Providing parents with structured support, including treatment-specific information, during TNFαi decision making may lead to improved decision quality, decreased psychosocial distress and, ultimately, improved outcomes for their childre