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 describes 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 who participated in 16 focus groups, 2 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 5 themes: diminishing psychological well-being (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).
Justin G. Wu, Chandana Guha, Anastasia Hughes, Luca G. Torrisi, Jonathan C. Craig, Aditi Sinha, Allison Dart, Allison A. Eddy, Detlef Bockenhauer, Hui-Kim Yap, Jaap Groothoff, Stephen I. Alexander, Susan L. Furth, Susan Samuel, Simon A. Carter, Amanda Walker, Joshua Kausman, Allison Jaure
Disease Category: Kidney disease
Disease Name: Chronic kidney disease
Age Range: 0 - 18
Sex: Either
Nature of Intervention:
- Clinical experts
- Consumers (patients)
- Families
- Patient perspectives
- Delphi process
- Focus group(s)
120 children with CKD (aged 8-21 years), 250 parents, and 445 health professionals from 53 countries who participated in 16 focus groups, 2 consensus workshops, and a Delphi survey.