Patient and caregiver perspectives on blood pressure in children with chronic kidney disease

Author:

Wu Justin Guang-Ao12ORCID,Tong Allison12,Evangelidis Nicole12,Manera Karine E12ORCID,Hanson Camilla S12,Baumgart Amanda12,Amir Noa12ORCID,Sinha Aditi3,Dart Allison4,Eddy Allison A56,Guha Chandana12,Gipson Debbie S7,Bockenhauer Detlef8,Yap Hui-Kim9,Groothoff Jaap10,Zappitelli Michael11,Alexander Stephen I2,Furth Susan L12,Samuel Susan13,Carter Simon A214,Walker Amanda1415,Kausman Joshua1415,Martinez-Martin David1617,Gutman Talia12ORCID,Craig Jonathan C18

Affiliation:

1. Sydney School of Public Health, University of Sydney, Sydney, NSW, Australia

2. Centre for Kidney Research, Children’s Hospital at Westmead, Sydney, NSW, Australia

3. Department of Pediatrics, Division of Nephrology, All India Institute of Medical Sciences, New Delhi, India

4. Department of Pediatrics and Child Health, Children's Hospital Research Institute of Manitoba, University of Manitoba, Winnipeg, MB, Canada

5. Department of Pediatrics, University of British Columbia, Vancouver, BC, Canada

6. Division of Nephrology, BC Children’s Hospital Research Institute, BC Women’s Hospital, Vancouver, BC, Canada

7. Department of Pediatrics, Division of Nephrology, University of Michigan, Ann Arbor, MI, USA

8. UCL Department of Renal Medicine and Great Ormond Street Hospital for Children, NHS Foundation Trust, London, UK

9. Department of Pediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore

10. Department of Pediatric Nephrology, Emma Children's Hospital AMC Academic Medical Center, Amsterdam, The Netherlands

11. Department of Pediatrics, Division of Nephrology, Hospital for Sick Children, Toronto, ON, Canada

12. Department of Pediatrics, Perelman School of Medicine, University of Pennsylvania, Children’s Hospital of Philadelphia, Philadelphia, PA, USA

13. Department of Pediatrics, Section of Pediatric Nephrology, Cumming School of Medicine, University of Calgary, Calgary, AB, Canada

14. Department of Nephrology, Murdoch Children's Research Institute, Royal Children's Hospital, Melbourne, VIC, Australia

15. Department of Pediatrics, University of Melbourne, Melbourne, VIC, Australia

16. School of Biomedical Engineering, University of Sydney, Sydney, NSW, Australia

17. University of Sydney Nano Institute (Sydney Nano), University of Sydney, Sydney, NSW, Australia

18. College of Medicine and Public Health, Flinders University, Adelaide, SA, Australia

Abstract

Abstract Background More than 50% of children with chronic kidney disease (CKD) have uncontrolled hypertension, increasing their long-term risk of cardiovascular disease and progression to kidney failure. Children receiving medications or dialysis may also experience acute blood pressure fluctuations accompanied by debilitating symptoms. We aimed to describe the perspectives of children with CKD and their parental caregivers on blood pressure to inform patient-centered care. Methods Secondary thematic analysis was conducted on qualitative data from the Standardized Outcomes in Nephrology—Children and Adolescents initiative, encompassing 16 focus groups, an international Delphi survey and two consensus workshops. We analyzed responses from children with CKD (ages 8–21 years) and caregivers (of children ages 0–21 years) pertaining to blood pressure. Results Overall, 120 patients and 250 caregivers from 22 countries participated. We identified five themes: invisibility and normalization (reassured by apparent normotension, absence of symptoms and expected links with CKD), confused by ambiguity (hypertension indistinguishable from cardiovascular disease, questioning the need for prophylactic intervention, frustrated by inconsistent messages and struggling with technical skills in measurement), enabling monitoring and maintaining health (gaging well-being and preventing vascular complications), debilitating and constraining daily living (provoking anxiety and agitation, helpless and powerless and limiting life activities) and burden of medications (overwhelmed by the quantity of tablets and distress from unexpected side effects). Conclusions For children with CKD and their caregivers, blood pressure was an important heath indicator, but uncertainty around its implications and treatment hampered management. Providing educational resources to track blood pressure and minimizing symptoms and treatment burden may improve outcomes in children with CKD.

Funder

Centre for Kidney Research Summer Research Scholarship

National Health and Medical Research Council (NHMRC) Investigator Award

University of Sydney Robinson Fellowship

NHMRC Program

NHMRC Post-graduate Scholarship

NHMRC Postgraduate Scholarship

NHMRC Program Grant Better Evidence and Translation in Chronic Kidney Disease

Publisher

Oxford University Press (OUP)

Subject

Transplantation,Nephrology

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