Engaging adolescents and young adults in decisions about return of genomic research results: study protocol for a mixed-methods longitudinal clinical trial protocol.

Background: To protect minors' future autonomy, professional organizations have historically discouraged returning predictive adult-onset genetic test results and carrier status to children. Recent clinical guidance diverges from this norm, suggesting that when minors have genomic sequencing performed for clinical purposes, parents and children should have the opportunity to learn secondary findings, including for some adult-onset conditions. While parents can currently opt in or out of receiving their child's secondary findings, the American Society of Human Genetics Workgroup on Pediatric Genetic and Genomic Testing suggests including adolescents in the decision-making process.

Health Care Provider Perspectives on Shared Decision Making With Parents and Adolescents.

Little is known about health care provider perspectives on sharing decisions in a parent-adolescent-provider triad. This perspective is needed to develop tools for supporting shared decision-making (SDM) in a triad that involves an adolescent. To assess this perspective, we conducted individual interviews with pediatric health care providers.

Balancing survival and suffering: factors influencing parental decision making after periviable consultation.

Objective: The objective of this study was to identify factors birthing parents consider related to potential resuscitation of a periviable infant.

Study Design: Birthing parents who received a prenatal consult from a newborn intensive care unit provider between 22.0 and 24.

Developing methods to identify resilience and improve communication about diagnosis in pediatric primary care.

Communication underlies every stage of the diagnostic process. The Dialog Study aims to characterize the pediatric diagnostic journey, focusing on communication as a source of resilience, in order to ultimately develop and test the efficacy of a structured patient-centered communication intervention in improving outpatient diagnostic safety. In this manuscript, we will describe protocols, data collection instruments, methods, analytic approaches, and theoretical frameworks to be used in to characterize the patient journey in the Dialog Study.

Patient Preferences in Diagnostic Imaging: A Scoping Review.

Background: As new diagnostic imaging technologies are adopted, decisions surrounding diagnostic imaging become increasingly complex. As such, understanding patient preferences in imaging decision making is imperative.

Objectives: We aimed to review quantitative patient preference studies in imaging-related decision making, including characteristics of the literature and the quality of the evidence.

Young adults' reasoning for involving a parent in a genomic decision-making research study.

Young adults have increasing genomic testing opportunities; however, little is known about how equipped they feel about making decisions to learn personal genomic information. We conducted qualitative interviews with 19 young adults, ages 18-21 years old, enrolled in a research study where they made decisions about learning personal genomic risk for developing preventable, treatable, and adult-onset conditions and carrier status for autosomal recessive conditions. Participants had the option to include a parent in their study visit and the decision-making process.

Measure of Caregiver Attention-Deficit/Hyperactivity Disorder Knowledge Is Responsive to Decision Aid on Treatment for Attention-Deficit/Hyperactivity Disorder.

Objective: Adapt and test a measure of knowledge for caregivers of children with attention-deficit/hyperactivity disorder (ADHD) and evaluate the impact of the information component of a decision aid (DA) on participant knowledge.

Methods: A set of seven knowledge items were created based on prior knowledge measures and clinical guidelines. As part of a larger cross-sectional survey study of caregivers of children diagnosed with ADHD, caregivers were randomized to one of two arms: 1) a DA arm, where participants reviewed the information component of the Cincinnati Children's Hospital's DA, and 2) a control arm, where participants were not shown a DA.

Providers' Perspectives on Decision-Making About Care for Transgender Youth.

Background: Transgender and gender-diverse (TGD) youth face health care decisions that are complicated by both social and medical aspects of gender care. Little is known about how providers support decision-making in this context or the gaps they perceive in decision support.

Objective: To explore health care providers' perspectives on the decision-making processes in youth gender care.

Adolescents' and Parents' Perspectives on a Novel Decision-Making Process for Return of Results in Genomic Research.

To understand whether they found a two-step decision process helpful and why, adolescent-parent dyads participating in a study investigating return of genomic testing results were asked about their decision-making experience. Responses were qualitatively coded and analyzed using thematic analysis. Adolescents and parents found both joint and independent decision-making stages helpful.

Engaging Adolescents and Young Adults in Decisions About Return of Genomic Research Results: a mixed-methods longitudinal clinical trial protocol.

Background: To protect minors' future autonomy, professional organizations have historically discouraged returning predictive adult-onset genetic test results and carrier status to children. Recent clinical guidance diverges from this norm, suggesting that when minors have genomic sequencing performed for clinical purposes, parents and children should have the opportunity to learn secondary findings, including for some adult-onset conditions. While parents can currently opt in or out of receiving their child's secondary findings, the American Society of Human Genetics Workgroup on Pediatric Genetic and Genomic Testing suggests including adolescents in the decision-making process.

Supporting Gender-Related Medical Decision Making for Transgender and Gender-Diverse Individuals: A Scoping Review.

Purpose: Transgender and gender-diverse (TGD) individuals and their families face numerous challenging decisions. To better understand their decision processes, we conducted a scoping review of the existing literature and of decision-support tools in use at pediatric gender-care clinics.

Methods: We searched PubMed, EMBASE, Scopus CINAHL, PsychINFO, and EBM Reviews for studies that were original research focused on decisions, decision making, or decision support for TGD individuals and/or their families.

Decision Support Needs for Transgender and Gender-Diverse Youth and Families: A Patient-Centered Needs Assessment.

Purpose: Due to the intertwining of medical and social decision-making, new approaches to shared decision-making are likely needed for supporting decisions related to the care of transgender and gender-diverse (TGD) adolescents. Prior to developing decision support interventions for TGD youth, a decision support needs assessment must be completed.

Methods: Self-identified TGD youth, family members of TGD youth, clinicians caring for this population, and community advocates participated in one of six group level assessments (GLAs).

Developing video education materials for the return of genomic test results to parents and adolescents.

Objective: To describe the development, implementation, and revision of a video to provide information about genomic testing and the return of genomic research results to adolescents and parents.

Methods: Formative, community-engaged research was conducted in three stages: development, implementation, and revision. Existing research participant advisory groups were used for focus groups and convenience sampling was used for interviews.

Pilot trial of iBDecide: Evaluating an online tool to facilitate shared decision making for adolescents and young adults with ulcerative colitis.

Introduction: This pilot, randomized controlled trial aimed to evaluate the usability, among adolescents and young adults (AYAs) with ulcerative colitis (UC), of a web-based tool ('iBDecide') designed to facilitate shared decision making (SDM).

Methods: AYAs with UC (n = 35) were randomized to intervention (iBDecide, n = 14) and control (n = 12) arms before a scheduled clinic visit. We measured the usability of iBDecide, SDM, preferred decision-making style, decision conflict and intervention use.

Pediatric Caregiver Version of the Shared Decision Making Process Scale: Validity and Reliability for ADHD Treatment Decisions.

Objective: Shared decision making (SDM) is recommended for common pediatric conditions; however, there are limited data on measures of SDM in pediatrics. This study adapted the SDM Process scale and examined validity and reliability of the scale for attention-deficit/hyperactivity disorder (ADHD) treatment decisions.

Methods: Cross-sectional survey of caregivers (n = 498) of children (aged 5-13) diagnosed with ADHD, who had made a decision about ADHD medication in the last 2 years.

Intergenerational Decision Making: The Role of Family Relationships in Medical Decision Making.

A symposium held at the 42nd annual Society for Medical Decision Making conference on October 26, 2020, focused on intergenerational decision making. The symposium covered existing research and clinical experiences using formal presentations and moderated discussion and was attended by 43 people. Presentations focused on the roles of pediatric patients in decision making, caregiver decision making for a child with complex medical needs, caregiver involvement in advanced care planning, and the inclusion of spillover effects in economic evaluations.

Decision making about anti-TNF therapy: A pilot trial of a shared decision-making intervention.

Objective: We conducted a pre-post pilot trial to determine the feasibility and acceptability of a multi-component intervention (pre-clinic letter, shared decision making cards and follow-up phone call) designed to facilitate SDM in pediatric inflammatory bowel disease (IBD).

Methods: We recruited physicians (n = 11) caring for IBD patients and families (n = 36) expected to discuss anti-tumor necrosis treatment. We measured feasibility and acceptability of the intervention, observed SDM, perceived SDM, decision conflict, and regret.

Integrating shared decision making into trial consent: A nested, cluster-randomized trial.

Objective: Using a nested, cluster-randomized trial, we tested the hypothesis that a shared decision-making intervention, as part of consent, would improve study-related knowledge.

Methods: We developed a shared decision-makingintervention then randomized sites in a clinical trial to intervention or control (standard consent). We collected participants' knowledge (primary outcome) and decisional support data.

Use of language in the medical decision-making process for biologic therapy: Youth and parent perspectives.

Background: Youth with chronic illnesses and their parents make complex medical decisions and also need to develop medical decision-making skills for transition of care to adult care. The use of inclusive (e.g.

The Gray Zone: Adolescent and Young Adult Decision Support Needs for Ulcerative Colitis.

To understand the medical decision support needs specific to adolescents and young adults (AYAs) with ulcerative colitis (UC) and inform development of a decision support tool addressing AYAs' preferences. We conducted focus groups with AYAs with UC and mentors from a pediatric inflammatory bowel disease clinic's peer mentoring program. Focus groups were led by a single trained facilitator using a semistructured guide aimed at eliciting AYAs' roles in medical decision making and perceived decision support needs.

Shared Decision Making in Gastroenterology: Challenges and Opportunities.

This article reviews the current uses of shared decision making in gastroenterology and discusses additional areas of opportunity for shared decision making, especially in the area of functional gastrointestinal disorders. PubMed, MEDLINE, and Cochrane library databases were searched for articles published during a 10-year period from January 1, 2007, through December 31, 2017. Search terms included , , , and .

Is sharing really caring? Viewpoints on shared decision-making in paediatrics.

Shared decision-making (SDM), the cornerstone of family-centred care and the gold standard in health decision-making, occurs when the patient, family members and the health-care team members partner to make health decisions about the child. This partnership involves an exchange of medical information and information about patient/family preferences and values. Together, the health-care team, parent and patient deliberate to determine the best course of action for the child.

Shared decision making in IBD: A novel approach to trial consent and timing.

Background: Shared decision making (SDM) between families and physicians may facilitate informed, timely decisions to proceed with biologic therapy in children with inflammatory bowel disease (IBD). Our team previously developed an SDM tool to aid communication between physicians and families when considering biologic therapy for children with IBD.

Objective: We are conducting a prospective, pre-post pilot trial of a new SDM tool.

"I Couldn't See a Downside": Decision-Making About Gender-Affirming Hormone Therapy.

Purpose: The aim of the article was to understand adolescents' and parents' decision-making process related to gender-affirming hormone therapy (GAHT).

Methods: We conducted qualitative semistructured interviews with transgender adolescents who began testosterone for GAHT in the prior year and the parents of such adolescents. Questions focused on decision-making roles, steps in the decision process, and factors considered in the decision.