Camilla S Hanson1, Talia Gutman2, Jonathan C Craig3, Sarah Bernays4, Gayathri Raman5, Yifan Zhang6, Laura J James2, Angelique F Ralph2, Angela Ju2, Karine E Manera2, Armando Teixeira-Pinto2, Andrea K Viecelli7, Stephen I Alexander6, Tom D Blydt-Hansen8, Janis Dionne8, Steven McTaggart9, Mini Michael10, Amanda Walker11, Simon Carter12, Scott E Wenderfer10, Wolfgang C Winkelmayer13, Detlef Bockenhauer14, Allison Dart15, Allison A Eddy8, Susan L Furth16, Debbie S Gipson17, Stuart L Goldstein18, Jaap Groothoff19, Susan Samuel20, Aditi Sinha21, Nicholas J A Webb22, Hui-Kim Yap23, Michael Zappitelli24, Helen Currier10, Allison Tong2. 1. Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia. Electronic address: camilla.hanson@sydney.edu.au. 2. Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia. 3. Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia; College of Medicine and Public Health, Flinders University, Adelaide. 4. Sydney School of Public Health, The University of Sydney, Sydney, Australia. 5. College of Medicine and Public Health, Flinders University, Adelaide. 6. Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia. 7. Department of Nephrology, Princess Alexandra Hospital, Faculty of Medicine, University of Queensland, Brisbane, Australia. 8. Department of Pediatrics, BC Children's Hospital and University of British Columbia, Vancouver, Canada. 9. Child and Adolescent Renal Service, Lady Cilento Children's Hospital and University of Queensland, Brisbane, Australia. 10. Pediatrics-Renal, Texas Children's Hospital/Baylor College of Medicine, Houston, TX. 11. Department of Nephrology, Royal Children's Hospital Melbourne, University of Melbourne and Murdoch Children's Research Institute, Victoria Australia; Department of Pediatrics, University of Melbourne and Murdoch Children's Research Institute, Victoria Australia. 12. Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia; Department of Nephrology, Royal Children's Hospital Melbourne, University of Melbourne and Murdoch Children's Research Institute, Victoria Australia; Department of Pediatrics, University of Melbourne and Murdoch Children's Research Institute, Victoria Australia. 13. Selzman Institute for Kidney Health, Section of Nephrology, Baylor College of Medicine, Houston, TX. 14. UCL Centre for Nephrology and Great Ormond Street Hospital for Children NHS Foundation Trust, London, United Kingdom. 15. Department of Pediatrics and Child Health, The Children's Hospital Research Institute of Manitoba, University of Manitoba, Winnipeg, Canada. 16. Departments of Pediatrics and Epidemiology, Perelman School of Medicine, Division of Nephrology, The Children's Hospital of Philadelphia, Philadelphia, PA. 17. Department of Pediatrics, School of Medicine, University of Michigan, Ann Arbor, MI. 18. Division of Nephrology and Hypertension, Cincinnati Children's Hospital Medical Center, Cincinnati, OH. 19. Department of Pediatric Nephrology, Emma Children's Hospital AMC Academic Medical Center, Amsterdam, the Netherlands. 20. Department of Pediatrics, Section of Nephrology, University of Calgary, Calgary, Canada. 21. Division of Nephrology, Department of Pediatrics, All India Institute of Medical Sciences, New Delhi, India. 22. Department of Pediatric Nephrology and NIHR/Wellcome Trust Clinical Research Facility, University of Manchester, Manchester Academic Health Science Centre, Royal Manchester Children's Hospital, Manchester, United Kingdom. 23. Department of Pediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore. 24. Department of Pediatrics, Division of Nephrology, Toronto Hospital for Sick Children, University of Toronto, Toronto, Canada.
Abstract
RATIONALE & OBJECTIVE: Chronic kidney disease (CKD) has wide-ranging and long-term consequences for young people and their families. The omission of outcomes that are important to young people with CKD and their caregivers limits knowledge to guide shared decision making. We aimed to identify the outcomes that are important to young people with CKD and their caregivers. STUDY DESIGN: We used the nominal group technique whereby participants identified and ranked outcomes and explained their priorities. SETTINGS & PARTICIPANTS: Young people with CKD (stages 1-5, dialysis, or transplantation) and their caregivers were purposively sampled from 6 centers across Australia, the United States, and Canada. ANALYTICAL APPROACH: Importance scores were calculated (scale of 0-1), and qualitative data were analyzed thematically. RESULTS: 34 patients (aged 8-21 years) and 62 caregivers participated in 16 groups and identified 48 outcomes. The 5 highest ranked outcomes for patients were survival (importance score, 0.25), physical activity (0.24), fatigue (0.20), lifestyle restrictions (0.20), and growth (0.20); and for caregivers, kidney function (0.53), survival (0.28), infection (0.22), anemia (0.20), and growth (0.17). 12 themes were identified reflecting their immediate and current priorities (wanting to feel normal, strengthening resilience, minimizing intrusion into daily life, imminent threats to life, devastating family burdens, and seeking control over health) and considerations regarding future impacts (protecting health/development, remaining hopeful, concern for limited opportunities, prognostic uncertainty, dreading painful and invasive procedures, and managing expectations). LIMITATIONS: Only English-speaking participants were recruited. CONCLUSIONS: Kidney function, infection, survival, and growth were the highest priorities for patients with CKD and their caregivers. Young people with CKD also prioritized highly the outcomes that directly affected their lifestyle and sense of normality, while caregiver's highest priorities concerned the long-term health of their child, current health problems, and the financial and family burdens of caring for a child with CKD.
RATIONALE & OBJECTIVE:Chronic kidney disease (CKD) has wide-ranging and long-term consequences for young people and their families. The omission of outcomes that are important to young people with CKD and their caregivers limits knowledge to guide shared decision making. We aimed to identify the outcomes that are important to young people with CKD and their caregivers. STUDY DESIGN: We used the nominal group technique whereby participants identified and ranked outcomes and explained their priorities. SETTINGS & PARTICIPANTS: Young people with CKD (stages 1-5, dialysis, or transplantation) and their caregivers were purposively sampled from 6 centers across Australia, the United States, and Canada. ANALYTICAL APPROACH: Importance scores were calculated (scale of 0-1), and qualitative data were analyzed thematically. RESULTS: 34 patients (aged 8-21 years) and 62 caregivers participated in 16 groups and identified 48 outcomes. The 5 highest ranked outcomes for patients were survival (importance score, 0.25), physical activity (0.24), fatigue (0.20), lifestyle restrictions (0.20), and growth (0.20); and for caregivers, kidney function (0.53), survival (0.28), infection (0.22), anemia (0.20), and growth (0.17). 12 themes were identified reflecting their immediate and current priorities (wanting to feel normal, strengthening resilience, minimizing intrusion into daily life, imminent threats to life, devastating family burdens, and seeking control over health) and considerations regarding future impacts (protecting health/development, remaining hopeful, concern for limited opportunities, prognostic uncertainty, dreading painful and invasive procedures, and managing expectations). LIMITATIONS: Only English-speaking participants were recruited. CONCLUSIONS: Kidney function, infection, survival, and growth were the highest priorities for patients with CKD and their caregivers. Young people with CKD also prioritized highly the outcomes that directly affected their lifestyle and sense of normality, while caregiver's highest priorities concerned the long-term health of their child, current health problems, and the financial and family burdens of caring for a child with CKD.
Authors: Kelli Collins Damron; Robert Friedman; Lesley A Inker; Aliza Thompson; Morgan E Grams; Hrefna Guðmundsdóttir; Kerry Willis; Tom Manley; Hiddo L Heerspink; Daniel E Weiner Journal: Kidney Med Date: 2022-03-07