Abbreviations and Acronyms

CHIP-AE � Child Health and Illness Profile-Adolescent Edition

CHQ � Child Health QuestionnaireCHQ-PF50 � CHQ-Parent Form 50

CKD � chronic kidney diseaseHRQOL � health related quality of life

REFERENCES

1. Gerson A, Hwang W, Fiorenza J, Barth K, Kaskel F, Weiss L etal: Anemia and health-related quality of life in adolescentswith chronic kidney disease. Am J Kidney Dis 2004; 44:1017.

2. NAPRTCS 2007 Annual Report. Available at https://web.emmes.com/study/ped/annlrept/annlrept.html. AccessedMay 6, 2008.

3. Zilleruelo G, Andia J, Gorman HM and Strauss J: Chronicrenal failure in children: analysis of main causes and dete-rioration rate in 81 children. Int J Pediatr Nephrol 1980; 1:30.

4. Furth SL: Growth and nutrition in children with chronic kid-ney disease. Adv Chronic Kidney Dis 2005; 12: 366.

5. Landgraf JM, Abidari J, Cilento BG Jr, Cooper CS, SchulmanSL and Ortenberg J: Coping, commitment, and attitude:quantifying the everyday burden of enuresis on childrenand their families. Pediatrics 2004; 113: 334.

6. Bower WF, Wong EM and Yeung CK: Development of a vali-dated quality of life tool specific to children with bladderdysfunction. Neurourol Urodyn 2006; 25: 221.

7. Nelson CP, Park JM, Bloom DA, Wan J, Dunn RL and Wei JT:Incontinence Symptom Index-Pediatric: development andinitial validation of a urinary incontinence instrument forthe older pediatric population. J Urol 2007; 178: 1763.

8. Montagnino B, Czyzewski DI, Runyan RD, Berkman S, RothDR and Gonzales ET Jr: Long-term adjustment issues inpatients with exstrophy. J Urol 1998; 160: 1471.

9. Reiner WG and Gearhart JP: Anxiety disorders in childrenwith epispadias-exstrophy. Urology 2006; 68: 172.

10. Gerharz EW, Eiser C and Woodhouse CR: Current approachesto assessing the quality of life in children and adolescents.BJU Int 2003; 91: 150.

11. Dodson JL, Diener-West M, Gerson AC, Kaskel FJ and FurthSL: An assessment of health related quality of life using thechild health and illness profile-adolescent edition in adoles-cents with chronic kidney disease due to underlying urolog-ical disorders. J Urol 2007; 178: 660.

12. Landgraf JM, Abetz L and Ware JE: The CHQ User’s Manual,2nd printing. Boston: Health Act 1999.

13. Gerson AC, Riley A, Fivush BA, Pham N, Fiorenza J, Robert-son J et al: Assessing health status and health care utili-zation in adolescents with chronic kidney disease. J Am SocNephrol 2005; 16: 1427.

14. Rajmil L, Herdman M, Fernandez de Sanmamed MJ, DetmarS, Bruil J, Ravens-Sieberer U et al: Generic health-relatedquality of life instruments in children and adolescents: aqualitative analysis of content. J Adolesc Health 2004; 34:37.

15. Goldstein SL, Graham N, Burwinkle T, Warady B, Farrah Rand Varni JW: Health-related quality of life in pediatricpatients with ESRD. Pediatr Nephrol 2006; 21: 846.

16. Starfield B, Riley A, Green BF, Ensminger ME, Forrest CB,Robertson J et al: Manual for the Child Health and IllnessProfile-Adolescent Edition (CHIP-AE). Baltimore: TheJohns Hopkins University 2000.

17. Stein RE and Jessop DJ: Functional status IIR. A measure ofchild health status. Med Care 1990; 28: 1041.

18. Varni JW, Burwinkle TM, Seid M and Skarr D: The PedsQL4.0 as a pediatric population health measure: feasibility,reliability, and validity. Ambul Pediatr 2003; 3: 329.

19. Eiser C and Morse R: Can parents rate their child’s health-related quality of life? Results of a systematic review. QualLife Res 2001; 10: 347.

20. Sundaram SS, Landgraf JM, Neighbors K, Cohn RA andAlonso EM: Adolescent health-related quality of life follow-ing liver and kidney transplantation. Am J Transplant2007; 7: 982.

DISCUSSION

Dr. Hrair Mesrobian. I want to congratulate the authors for doing a much needed study in pediatric urological patients andfor adding this dimension. Could you put this in perspective for us clinicians? For example, who would be a typical patientwith a quality of life score of 44? Would it be a patient with posterior urethral valves or a patient with reflux nephropathy.

Dr. Jennifer L. Dodson. We were limited by the data we had available. These data had been previously collected by a groupof pediatric nephrologists, and unfortunately they did not collect any more detailed information about the underlyingdiagnoses than urological diagnosis. However, we were able to go back at our institution and look at those particularparticipants to determine the diagnoses. The most common diagnosis was posterior urethral valves followed by reflux anddysplastic kidney.

Dr. Ferdinand A. Ferrer. You just published I think in the supplement the child assessment of the same population, andthe conclusion was that the children did not think they were any different. Is that my assessment of the report just published?

Doctor Dodson. Yes. It is the same cohort of children with chronic kidney disease but the instrument is different. It is calledthe CHIP-AE (Child Health and Illness Profile Adolescent Edition). The CHQPF-50 that I presented today has a child formbut it is different from the CHIP-AE.

Doctor Ferrer. So can you draw any conclusion that the children feel differently about themselves than the parents?Doctor Dodson. There is a fair amount of literature about that, and the parents and children often do not agree when they

rate quality of life. This is thought to be due to the different perspectives of parents and children. However, they tend to agreemore about physical symptoms as opposed to emotional or psychosocial symptoms.

PARENT PERSPECTIVES OF HEALTH RELATED QUALITY OF LIFE IN ADOLESCENTS1704