Patient, Parental, and Health Professional Perspectives on Growth in Children With CKD

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). Limitations: Only English-speaking participants were included. Conclusions: Impaired growth may diminish psychological well-being, self-esteem, and participation in daily activities for children with CKD. Balancing different treatments that can affect growth complicates decision making. These fi ndings may inform the psychosocial support needed by children with CKD and their caregivers to address concerns about growth.