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Patient, Parental, and Health Professional Perspectives on Growth in Children With CKD.
Wu, Justin G; Guha, Chandana; Hughes, Anastasia; Torrisi, Luca G; Craig, Jonathan C; Sinha, Aditi; Dart, Allison; Eddy, Allison A; Bockenhauer, Detlef; Yap, Hui-Kim; Groothoff, Jaap; Alexander, Stephen I; Furth, Susan L; Samuel, Susan; Carter, Simon A; Walker, Amanda; Kausman, Joshua; Jaure, Allison.
Afiliación
  • Wu JG; 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: justin.wu@sydney.edu.au.
  • Guha C; Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
  • Hughes A; Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
  • Torrisi LG; Sydney School of Public Health, The University of Sydney, Sydney, Australia; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
  • Craig JC; College of Medicine and Public Health, Flinders University, Adelaide, South Australia, Australia.
  • Sinha A; Department of Pediatrics, Division of Nephrology, All India Institute of Medical Sciences, New Delhi, India.
  • Dart A; Department of Pediatrics and Child Health, The Children's Hospital Research Institute of Manitoba, University of Manitoba, Winnipeg, MB, Canada.
  • Eddy AA; Department of Pediatrics, University of British Columbia, and BC Children's Hospital Research Institute, Vancouver, BC, Canada.
  • Bockenhauer D; Paediatric Nephrology, University Hospital Leuven, Leuven, Belgium and UCL Department of Renal Medicine and Great Ormond Street Hospital for Children NHS Foundation Trust, London, UK.
  • Yap HK; Department of Pediatrics, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore.
  • Groothoff J; Department of Pediatric Nephrology, Emma Children's Hospital AMC Academic Medical Center, Amsterdam, The Netherlands.
  • Alexander SI; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia.
  • Furth SL; Department of Pediatrics, Perelman School of Medicine at the University of Pennsylvania, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA.
  • Samuel S; Section of Pediatric Nephrology, Department of Pediatrics, Cumming School of Medicine, University of Calgary, Calgary, Alberta, Canada.
  • Carter SA; Centre for Kidney Research, The Children's Hospital at Westmead, Sydney, Australia; Department of Nephrology and Murdoch Children's Research Institute, Royal Children's Hospital, Melbourne, Victoria, Australia.
  • Walker A; Department of Nephrology and Murdoch Children's Research Institute, Royal Children's Hospital, Melbourne, Victoria, Australia; Department of Pediatrics, University of Melbourne, Victoria, Australia.
  • Kausman J; Department of Nephrology and Murdoch Children's Research Institute, Royal Children's Hospital, Melbourne, Victoria, Australia; Department of Pediatrics, University of Melbourne, Victoria, Australia.
  • Jaure A; 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: https://twitter.com/allisonjaure.
Am J Kidney Dis ; 2024 Aug 08.
Article en En | MEDLINE | ID: mdl-39127401
ABSTRACT
RATIONALE &

OBJECTIVE:

Growth failure is a common problem among children with chronic kidney disease (CKD). Reduced height is associated with psychosocial burden, social stigma, and impaired quality of life. This study aimed to describe the aspects of growth impairment that are most impactful from the perspectives of children with CKD, their parents, and health professionals. STUDY

DESIGN:

Qualitative study. SETTINGS &

PARTICIPANTS:

120 children with CKD (aged 8-21 years), 250 parents, and 445 health professionals from 53 countries participated in 16 focus groups, two consensus workshops, and a Delphi survey. ANALYTICAL

APPROACH:

A thematic analysis of all qualitative data concerning growth from the Standardized Outcomes in Nephrology - Children and Adolescents (SONG-Kids) initiative.

RESULTS:

We identified five themes diminishing psychological wellbeing (compared to and judged by peers, tired of explaining to others, damaging self-esteem), constrained life participation and enjoyment (deprived of normal school experiences, excluded from sports or competing at a disadvantage, impaired quality of life in adulthood); grappling with impacts of symptoms and treatment (difficulty understanding short stature and accessing help, lack of appetite, uncertainty regarding bone pains, medication side effects, burden of growth hormone treatment); facilitating timely interventions and optimizing outcomes (early indicator of disease, assessing management, maximizing transplant outcomes, minimizing morbidity); and keeping growth and health priorities in perspective (quality of life and survival of utmost priority, achieved adequate height).

LIMITATIONS:

Only English-speaking participants were included.

CONCLUSIONS:

Impaired growth may diminish psychological wellbeing, self-esteem, and participation in daily activities for children with CKD. Balancing different treatments that can affect growth complicates decision-making. These findings may inform the psychosocial support needed by children with CKD and their caregivers to address concerns about growth.
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Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: Am J Kidney Dis Año: 2024 Tipo del documento: Article Pais de publicación: Estados Unidos
Texto completo
Añadir a Mi BVS
Imprimir
XML
PubMed Links
Buscar en Google

Texto completo: 1 Colección: 01-internacional Base de datos: MEDLINE Idioma: En Revista: Am J Kidney Dis Año: 2024 Tipo del documento: Article Pais de publicación: Estados Unidos