title: Evaluation of quality of life by young adult survivors of severe chronic kidney disease in infancy.
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.
authors.affiliation: Renal Unit, Great Ormond St Hospital for Children NHS Trust, Great Ormond St, London, WC1N 3JH, UK.
authors.forename: Djalila
authors.initials: D
authors.lastname: Mekahli
authors.forename: Sarah
authors.initials: S
authors.lastname: Ledermann
authors.forename: Ambrose
authors.initials: A
authors.lastname: Gullett
authors.forename: Lesley
authors.initials: L
authors.lastname: Rees
mesh_terms: D015331:Cohort Studies; D004651:Employment; D005260:Female; D005500:Follow-Up Studies; D006306:Health Surveys; D006801:Humans; D007223:Infant; D007231:Infant, Newborn; D008297:Male; D011788:Quality of Life; D051436:Renal Insufficiency, Chronic / Q000523:psychology*; D017582:Renal Replacement Therapy; D012959:Socioeconomic Factors; D011795:Surveys and Questionnaires; D017741:Survivors; D055815:Young Adult