eprintid: 10129012 rev_number: 20 eprint_status: archive userid: 608 dir: disk0/10/12/90/12 datestamp: 2021-06-03 08:14:01 lastmod: 2022-07-15 15:55:41 status_changed: 2021-06-03 08:14:01 type: article metadata_visibility: show creators_name: Wu, JG-A creators_name: Tong, A creators_name: Evangelidis, N creators_name: Manera, KE creators_name: Hanson, CS creators_name: Baumgart, A creators_name: Amir, N creators_name: Sinha, A creators_name: Dart, A creators_name: Eddy, AA creators_name: Guha, C creators_name: Gipson, DS creators_name: Bockenhauer, D creators_name: Yap, H-K creators_name: Groothoff, J creators_name: Zappitelli, M creators_name: Alexander, SI creators_name: Furth, SL creators_name: Samuel, S creators_name: Carter, SA creators_name: Walker, A creators_name: Kausman, J creators_name: Martinez-Martin, D creators_name: Gutman, T creators_name: Craig, JC title: Patient and caregiver perspectives on blood pressure in children with chronic kidney disease ispublished: pub divisions: UCL divisions: B02 divisions: C10 divisions: D17 divisions: G93 keywords: blood pressure, chronic kidney disease, children, kidney replacement therapy, patient-centered care note: This version is the author accepted manuscript. For information on re-use, please refer to the publisher’s terms and conditions. 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. date: 2021-07 date_type: published publisher: Oxford University Press (OUP) official_url: https://doi.org/10.1093/ndt/gfab194 oa_status: green full_text_type: other language: eng primo: open primo_central: open_green verified: verified_manual elements_id: 1868766 doi: 10.1093/ndt/gfab194 lyricists_name: Bockenhauer, Detlef lyricists_id: DBOCK32 actors_name: Bockenhauer, Detlef actors_name: Henderson, Kathryn actors_id: DBOCK32 actors_id: KJHEN38 actors_role: owner actors_role: impersonator full_text_status: public publication: Nephrology Dialysis Transplantation volume: 37 number: 7 pagerange: 1330-1339 citation: Wu, JG-A; Tong, A; Evangelidis, N; Manera, KE; Hanson, CS; Baumgart, A; Amir, N; ... Craig, JC; + view all <#> Wu, JG-A; Tong, A; Evangelidis, N; Manera, KE; Hanson, CS; Baumgart, A; Amir, N; Sinha, A; Dart, A; Eddy, AA; Guha, C; Gipson, DS; Bockenhauer, D; Yap, H-K; Groothoff, J; Zappitelli, M; Alexander, SI; Furth, SL; Samuel, S; Carter, SA; Walker, A; Kausman, J; Martinez-Martin, D; Gutman, T; Craig, JC; - view fewer <#> (2021) Patient and caregiver perspectives on blood pressure in children with chronic kidney disease. Nephrology Dialysis Transplantation , 37 (7) pp. 1330-1339. 10.1093/ndt/gfab194 <https://doi.org/10.1093/ndt%2Fgfab194>. Green open access document_url: https://discovery.ucl.ac.uk/id/eprint/10129012/1/NDT-00353-2021.R2_Proof.pdf