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Trials in children with chronic kidney disease do not consistently report outcomes that are critically important to patients and caregivers. This can diminish the relevance and reliability of evidence for decision making, limiting the implementation of results into practice and policy. As part of the Standardized Outcomes in Nephrology-Children and Adolescents (SONG-Kids) initiative, we convened 2 consensus workshops in San Diego, California (7 patients, 24 caregivers, 43 health professionals) and Melbourne, Australia (7 patients, 23 caregivers, 49 health professionals). This report summarizes the discussions on the identification and implementation of the SONG-Kids core outcomes set. Four themes were identified; survival and life participation are common high priority goals, capturing the whole child and family, ensuring broad relevance across the patient journey, and requiring feasible and valid measures. Stakeholders supported the inclusion of mortality, infection, life participation, and kidney function as the core outcomes domains for children with chronic kidney disease.

Summary The COVID‐19 pandemic has challenged the delivery of health services. Telehealth allows delivery of care without in‐person contacts and minimizes the risk of vial transmission. We aimed to describe the perspectives of kidney transplant recipients on the benefits, challenges, and risks of telehealth. We conducted five online focus groups with 34 kidney transplant recipients who had experienced a telehealth appointment. Transcripts were thematically analyzed. We identified five themes: minimizing burden (convenient and easy, efficiency of appointments, reducing exposure to risk, limiting work disruptions, and alleviating financial burden); attuning to individual context (depending on stability of health, respect patient choice of care, and ensuring a conducive environment); protecting personal connection and trust (requires established rapport with clinicians, hampering honest conversations, diminished attentiveness without incidental interactions, reassurance of follow‐up, and missed opportunity to share lived experience); empowerment and readiness (increased responsibility for self‐management, confidence in physical assessment, mental preparedness, and forced independence); navigating technical challenges (interrupted communication, new and daunting technologies, and cognizant of patient digital literacy). Telehealth is convenient and minimizes time, financial, and overall treatment burden. Telehealth should ideally be available after the pandemic, be provided by a trusted nephrologist and supported with resources to help patients prepare for appointments.

ransgender and nonbinary people make up around 0.5% of the world's population (25 million people), and most are children, adolescents, and young adults. 1,2 A detailed list of transgender-associated terms and definitions is presented in eTable 1 in the Supplement. Transgender and nonbinary youths face considerable disparities in access to health care and outcomes. 1,[3][4][5][6] They are exposed to stigma and violence, 1 have an increased risk of anxiety and depression, and are more than 20 times more likely to die by suicide than the general population. 1,3 Transgender and nonbinary people have a high prevalence of substance abuse and are more likely to smoke compared with their peers. 1 Transfeminine individuals have a disproportionate burden of HIV infection, with a global prevalence of 20%. 6 In addition to general health care needs, transgender and nonbinary people often require specific medical interventions, namely hormone therapy, gender-affirming surgery, and reproductive care. However, transgender and nonbinary people have reported difficulties in accessing safe treatment and quality care. 5 In many countries, health care for transgender and nonbinary youths are not explicitly addressed in legislation and policy, and patients encounter legal and insurance-associated barriers in accessing care. 3,6 This can lead to disengagement from health services and resorting to nonprescription hormone use or self-performed surgeries, which can lead to life-threatening complications. 7,8 There is very limited understanding of the experiences, challenges, and needs of transgender and nonbinary youths. A systematic review of qualitative studies on the perspectives of transgender and nonbinary youths can generate more comprehensive evidence that spans different populations and health care contexts. We aimed to describe the attitudes and experiences of this population in accessing health care to inform strategies to improve the quality of care and health outcomes. MethodsWe conducted a systematic review and thematic synthesis of primary qualitative studies in which the data were reanalyzed across IMPORTANCE Transgender and nonbinary youths have a higher incidence of a range of health conditions and may paradoxically face limited access to health care. OBJECTIVE To describe the perspectives and needs of transgender youths in accessing health care.EVIDENCE REVIEW MEDLINE, Embase, PsycInfo, and the Cumulative Index to Nursing and Allied Health Literature were searched from inception to January 2021. Qualitative studies of transgender youths' perspectives on accessing health care were selected. Results from primary studies were extracted. Data were analyzed using thematic synthesis.FINDINGS Ninety-one studies involving 884 participants aged 9 to 24 years across 17 countries were included. We identified 6 themes: experiencing pervasive stigma and discrimination in health care, feeling vulnerable and uncertain in decision-making, traversing risks to overcome systemic barriers to transitioning, internalizing intense fear of con...