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

被引：14
作者：
House, Taylor R. [1 ]
Wightman, Aaron [1 ,2 ,3 ]
机构：
[1] Univ Washington, Sch Med, Dept Pediat, Div Pediat Nephrol, Seattle, WA 98195 USA
[2] Seattle Childrens Res Inst, Treuman Katz Ctr Pediat Bioeth, Seattle, WA USA
[3] Univ Washington, Sch Med, Dept Pediat, Div Bioeth & Palliat Care, Seattle, WA 98195 USA
来源：
KIDNEY360 | 2021年 / 2卷 / 06期
基金：
美国国家卫生研究院;
关键词：
geriatric and palliative nephrology; chronic kidney disease; dialysis; end stage kidney disease; kidney supportive care; pediatric nephrology; pediatric palliative care; QUALITY-OF-LIFE; CHRONIC KIDNEY-DISEASE; STAGE RENAL-DISEASE; PARENTAL PERSPECTIVES; SLEEP DISTURBANCES; CHILDREN; HEALTH; DIALYSIS; ADOLESCENTS; OUTCOMES;
D O I：
10.34067/KID.0000282021
中图分类号：
R5 [内科学]; R69 [泌尿科学（泌尿生殖系疾病）];
学科分类号：
1002 ; 100201 ;
摘要：
Despite continued advances in medical treatment, pediatric CKD remains an unremitting, burdensome condition characterized by decreased quality of life and earlier death. These burdens underscore the need for integration of pediatric palliative care (PPC) into nephrology practice. PPC is an evolving field that strives to (1) relieve physical, psychologic, 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. Integration of palliative care into routine care has already begun for adults with kidney disease and children with other chronic diseases; however, similar integration has not occurred in pediatric nephrology. 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 introduce future opportunities for study.
引用
收藏
页码：1063 / 1071
页数：9
相关论文
共 87 条
[1]   Symptom Burden, Depression, and Quality of Life in Chronic and End-Stage Kidney Disease [J].
Abdel-Kader, Khaled ;
Unruh, Mark L. ;
Weisbord, Steven D. .
CLINICAL JOURNAL OF THE AMERICAN SOCIETY OF NEPHROLOGY, 2009, 4 (06) :1057-1064
[2]   EVERYDAY LIFE EXPERIENCES IN FAMILIES WITH A CHILD WITH KIDNEY DISEASE [J].
Agerskov, Hanne ;
Thiesson, Helle C. ;
Pedersen, Birthe D. .
JOURNAL OF RENAL CARE, 2019, 45 (04) :205-211
[3]  
[Anonymous], 2010, SHARED DECISION MAKI
[4]  
[Anonymous], WHO definition of palliative care
[5]   Child and parental perspectives of multidimensional quality of life outcomes after kidney transplantation [J].
Anthony, Samantha J. ;
Hebert, Diane ;
Todd, Laura ;
Korus, Moira ;
Langlois, Valerie ;
Pool, Rita ;
Robinson, Lisa A. ;
Williams, Angela ;
Pollock-BarZiv, Stacey M. .
PEDIATRIC TRANSPLANTATION, 2010, 14 (02) :249-256
[6]   Young adults' perspectives on living with kidney failure: a systematic review and thematic synthesis of qualitative studies [J].
Bailey, Phillippa K. ;
Hamilton, Alexander J. ;
Clissold, Rhian L. ;
Inward, Carol D. ;
Caskey, Fergus J. ;
Ben-Shlomo, Yoav ;
Owen-Smith, Amanda .
BMJ OPEN, 2018, 8 (01)
[7]   Psychiatric disorders in children with chronic renal failure [J].
Bakr, Ashraf ;
Amr, Mostafa ;
Sarhan, Amr ;
Hammad, Ayman ;
Ragab, Mohamed ;
El-Refaey, Ahmed ;
El-Mougy, Atef .
PEDIATRIC NEPHROLOGY, 2007, 22 (01) :128-131
[8]   The importance of early involvement of paediatric palliative care for patients with severe congenital heart disease [J].
Bertaud, Sophie ;
Lloyd, David F. A. ;
Laddie, Joanna ;
Razavi, Reza .
ARCHIVES OF DISEASE IN CHILDHOOD, 2016, 101 (10) :984-987
[9]   CKD in Elderly Patients Managed without Dialysis: Survival, Symptoms, and Quality of Life [J].
Brown, Mark A. ;
Collett, Gemma K. ;
Josland, Elizabeth A. ;
Foote, Celine ;
Li, Qiang ;
Brennan, Frank P. .
CLINICAL JOURNAL OF THE AMERICAN SOCIETY OF NEPHROLOGY, 2015, 10 (02) :260-268
[10]   Quality of life in children with chronic kidney disease (with child and parent assessments) [J].
Buyan, Necla ;
Turkmen, Mehmet Atilla ;
Bilge, Ilmay ;
Baskin, Esra ;
Haberal, Mehmet ;
Bilginer, Yelda ;
Mir, Sevgi ;
Emre, Sevinc ;
Akman, Sema ;
Ozkaya, Ozan ;
Fidan, Kibriya ;
Alpay, Harika ;
Kavukcu, Salih ;
Sever, Lale ;
Ozcakar, Zeynep Birsin ;
Dogrucan, Nahide .
PEDIATRIC NEPHROLOGY, 2010, 25 (08) :1487-1496
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