Developing Consensus-Based Outcome Domains for Trials in Children and Adolescents With CKD: An International Delphi Survey

Logeman, Charlotte; Guha, Chandana; Howell, Martin; Hanson, Camilla S.; Craig, Jonathan C.; Samuel, Susan; Zappitelli, Michael; Matsuda‐Abedini, Mina; Dart, Allison; Furth, Susan L.; Eddy, Allison A.; Groothoff, Jaap W.; Yap, Hui Kim; Böckenhauer, Detlef; Sinha, Aditi; Alexander, Stephen I.; Goldstein, Stuart L.; Gipson, Debbie S.; Michael, Mini; Walker, Amanda; Kausman, Joshua; Gaillard, Ségolène; Bacchetta, Justine; Rheault, Michelle N.; Warady, Bradley A.; Neu, Alicia M.; Christian, Martin; McTaggart, Steven; Liu, Isaac; Teo, Sharon; Sautenet, Bénédicte; Gutman, Talia; Carter, Simon; Teixeira‐Pinto, Armando; Tong, Allison

doi:10.1053/j.ajkd.2020.03.014

Cited by 22 publications

(20 citation statements)

References 49 publications

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“…16 For children with CKD, meaningful activities include study, sport, social and leisure activities. 17 18 Life participation is often restricted by the symptoms, side effects and treatment burden associated with CKD, and this has long-term consequences in young adulthood. 7 8 19 20 …”

Section: Introductionmentioning

confidence: 99%

Perspectives on life participation by young adults with chronic kidney disease: an interview study

et al. 2020

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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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Section: Introductionmentioning

confidence: 99%

Perspectives on life participation by young adults with chronic kidney disease: an interview study

et al. 2020

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“…In addition to the Likert scale, the final round of the survey will include a Best Worst Scale (BWS), a type of discrete choice experiment which allows participants to assess the relative importance of each outcome [ 39 ]. The BWS methodology has been used in previous SONG Delphi surveys [ 20 , 34 , 35 ] and has also been used to assess patient preferences in kidney transplantation [ 40 ].…”

Section: Methodsmentioning

confidence: 99%

Standardised Outcomes in Nephrology – Chronic Kidney Disease (SONG-CKD): a protocol for establishing a core outcome set for adults with chronic kidney disease who do not require kidney replacement therapy

Evangelidis

Sautenet

Madero

et al. 2021

Trials

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Background Globally, over 1.2 million people die from chronic kidney disease (CKD) every year. Patients with CKD are up to 10 times more likely to die prematurely than progress to kidney failure requiring kidney replacement therapy. The burden of symptoms and impaired quality of life in CKD may be compounded by comorbidities and treatment side effects. However, patient-important outcomes remain inconsistently and infrequently reported in trials in patients with CKD, which can limit evidence-informed decision-making. The Standardised Outcomes in Nephrology – Chronic Kidney Disease (SONG-CKD) aims to establish a consensus-based core outcome set for trials in patients with CKD not yet requiring kidney replacement therapy to ensure outcomes of relevance to patients, caregivers and health professionals are consistently reported in trials. Methods SONG-CKD involves four phases: a systematic review to identify outcomes (domains and measures) that have been reported in randomised controlled trials involving adults with CKD who do not require kidney replacement therapy; stakeholder key informant interviews with health professionals involved in the care of adults with CKD to ascertain their views on establishing core outcomes in CKD; an international two-round online Delphi survey with patients, caregivers, clinicians, researchers, policy makers and industry representatives to obtain consensus on critically important outcome domains; and stakeholder consensus workshops to review and finalise the set of core outcome domains for trials in CKD. Discussion Establishing a core outcome set to be reported in trials in patients with CKD will enhance the relevance, transparency and impact of research to improve the lives of people with CKD. Trial registration Not applicable. This study is registered with the Core Outcome Measures in Effectiveness Trials (COMET) database: http://www.comet-initiative.org/Studies/Details/1653.

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“…Adjusting clinical research to include patient-focused outcomes is foundational to understanding the needs and hopes of patients and families across disease, cultural, and developmental states. 79,[84][85][86] Additionally, there is a need to develop and study targeted interventions focused upon patient-reported and prioritized outcomes including symptoms present in CKD, such as pain, pruritis, edema, and sleep disturbances. Finally, effective models for routine integration of PPC into clinical care for children with CKD must be developed, applied and investigated.…”

Section: Directions For Future Opportunities To Integrate Ppc Into Pediatric Nephrologymentioning

confidence: 99%

Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD

House

Wightman

2021

Kidney360

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Despite continued advances in medical treatment, pediatric chronic kidney disease (CKD) remains an unremitting, burdensome condition characterized by decreased quality of life and earlier death.(1-7) These burdens underscore the need for integration of pediatric palliative care (PPC) into nephrology practice. Pediatric palliative care is an evolving field which strives to 1) relieve physical, psychological, social, practical and existential suffering; 2) improve quality of life; 3) facilitate decision-making; and 4) assist with care coordination in children with life-threatening or life-shortening conditions.(8) Integration of palliative care into routine care has already begun for adults with kidney disease and children with other chronic diseases, yet, similar integration has not occurred in pediatric nephrology.(9,10) This review serves to provide a comprehensive definition of PPC, highlight the unmet need in pediatric nephrology and current integration efforts, discuss the state of palliative care in adult nephrology and analogous chronic pediatric disease states, and finally to introduce future opportunities for study.

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Developing Consensus-Based Outcome Domains for Trials in Children and Adolescents With CKD: An International Delphi Survey

Cited by 22 publications

References 49 publications

Perspectives on life participation by young adults with chronic kidney disease: an interview study

Perspectives on life participation by young adults with chronic kidney disease: an interview study

Standardised Outcomes in Nephrology – Chronic Kidney Disease (SONG-CKD): a protocol for establishing a core outcome set for adults with chronic kidney disease who do not require kidney replacement therapy

Adding Life to Their Years: The Current State of Pediatric Palliative Care in CKD

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