Abstract
Background
The health related quality of life (HRQoL) of young adults treated for chronic kidney disease (CKD) stage 4/5 from infancy is unknown.
Methods
A HRQoL questionnaire was sent to all 41 patients aged >16 years from a previously characterised cohort of infants with CKD stage 4/5 born between 1986 and 1997. Patient scores were compared with a previously reported cohort of patients who needed renal replacement therapy (RRT) in mid childhood and in the normal population.
Results
All patients (11 women) completed the questionnaire at a median (range) age of 19.2 (16.3–23.4) years. At the time of the survey, 5 (12.5 %) were on dialysis, 35 (85.5 %) had a functioning kidney transplant, one (2 %) was still conservatively treated and 22 (54 %) had comorbidities; 68 % were either studying or in paid employment, with 17 % actively seeking employment. Although patients described a lower HRQoL than a healthy, age-matched UK group, in some aspects, scores were comparable with patients needing RRT in later childhood. Lower scores were associated with comorbidities, dialysis at last follow-up, more than one treatment modality change and short stature.
Conclusions
Our survey demonstrates very encouraging results for long-term HRQoL of infants with severe CKD and highlights the negative impact of comorbidities. These data will help clinicians to counsel and inform families.
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Abbreviations
- CKD:
-
Chronic kidney disease
- ESKD:
-
End-stage kidney disease
- HRQoL:
-
Health-related quality of life
- RRT:
-
Renal replacement therapy
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Acknowledgments
We thank H. Stam and M.A. Grootenhuis from the Netherlands’ Emma Children’s Hospital for giving us The Course of Life questionnaire.
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Mekahli, D., Ledermann, S., Gullett, A. et al. Evaluation of quality of life by young adult survivors of severe chronic kidney disease in infancy. Pediatr Nephrol 29, 1387–1393 (2014). https://doi.org/10.1007/s00467-014-2785-8
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DOI: https://doi.org/10.1007/s00467-014-2785-8