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.
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...
ObjectiveTo describe the perspectives on life participation by young adults with childhood-onset chronic kidney disease (CKD).DesignSemi-structured interviews; thematic analysis.SettingMultiple centres across six countries (Australia, Canada, India, UK, USA and New Zealand).ParticipantsThirty young adults aged 18 to 35 years diagnosed with CKD during childhood.ResultsWe identified six themes: struggling with daily restrictions (debilitating symptoms and side effects, giving up valued activities, impossible to attend school and work, trapped in a medicalised life, overprotected by adults and cautious to avoid health risks); lagging and falling behind (delayed independence, failing to keep up with peers and socially inept); defeated and hopeless (incapacitated by worry, an uncertain and bleak future, unworthy of relationships and low self-esteem and shame); reorienting plans and goals (focussing on the day-to-day, planning parenthood and forward and flexible planning); immersing oneself in normal activities (refusing to miss out, finding enjoyment, determined to do what peers do and being present at social events); and striving to reach potential and seizing opportunities (encouragement from others, motivated by the illness, establishing new career goals and grateful for opportunities).ConclusionsYoung adults encounter lifestyle limitations and missed school and social opportunities as a consequence of developing CKD during childhood and as a consequence lack confidence and social skills, are uncertain of the future, and feel vulnerable. Some re-adjust their goals and become more determined to participate in ‘normal’ activities to avoid missing out. Strategies are needed to improve life participation in young adult ‘graduates’ of childhood CKD and thereby strengthen their mental and social well-being and enhance their overall health.
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