Gaining the Patient Reported Outcomes Measurement Information System (PROMIS) perspective in chronic kidney disease: a Midwest Pediatric Nephrology Consortium study

Pediatric Nephrology

Volumn 29, Issue 12, 2014, Pages 2347-2356

  Selewski, David T ^a   Massengill, Susan F ^b   Troost, Jonathan P ^a   Wickman, Larysa ^a   Messer, Kassandra L ^c   Herreshoff, Emily ^a   Bowers, Corinna ^d   Ferris, Maria E ^e   Mahan, John D ^d   Greenbaum, Larry A ^f   MacHardy, Jackie ^g   Kapur, Gaurav ^h   Chand, Deepa H ⁱ   Goebel, Jens ^j   Barletta, Gina Marie ^k   Geary, Denis ^l   Kershaw, David B ^a   Pan, Cynthia G ^m   Gbadegesin, Rasheed ⁿ   Hidalgo, Guillermo ^o   Lane, Jerome C ⁱ   Leiser, Jeffrey D ^p   Song, Peter X ^c   Thissen, David ^q   Liu, Yang ^q   Gross, Heather E ^g   DeWalt, Darren A ^g   Gipson, Debbie S ^a   more..

^a UNIVERSITY OF MICHIGAN   (United States)

^b Levine Children's Hospital   (United States)

^c UNIVERSITY OF MICHIGAN   (United States)

^d THE OHIO STATE UNIVERSITY COLLEGE OF MEDICINE   (United States)

^e UNIVERSITY OF NORTH CAROLINA SCHOOL OF MEDICINE   (United States)

^f EMORY UNIVERSITY   (United States)

^g UNIVERSITY OF NORTH CAROLINA   (United States)

^h CHILDREN'S HOSPITAL OF MICHIGAN   (United States)

ⁱ CHILDREN'S MEMORIAL HOSPITAL   (United States)

^j CINCINNATI CHILDREN'S HOSPITAL MEDICAL CENTER   (United States)

^k PHOENIX CHILDREN'S HOSPITAL   (United States)

^l HOSPITAL FOR SICK CHILDREN   (Canada)

^m MEDICAL COLLEGE OF WISCONSIN   (United States)

ⁿ DUKE UNIVERSITY MEDICAL CENTER   (United States)

^o EAST CAROLINA UNIVERSITY   (United States)

^p RILEY HOSPITAL FOR CHILDREN   (United States)

^q The University of North Carolina at Chapel Hill   (United States)

more..

Author keywords

Children; Chronic kidney disease; End stage kidney disease; Patient reported outcomes; Pediatrics; Quality of life; Transplant

Indexed keywords

ADOLESCENT; CHILD; CHRONIC KIDNEY FAILURE; COMPLICATION; CROSS-SECTIONAL STUDY; FEMALE; HUMAN; MALE; NEPHROLOGY; OUTCOME ASSESSMENT; PROCEDURES; PSYCHOLOGY; QUALITY OF LIFE; QUESTIONNAIRE; SELF REPORT; SEVERITY OF ILLNESS INDEX;

ADOLESCENT; CHILD; CROSS-SECTIONAL STUDIES; FEMALE; HUMANS; MALE; NEPHROLOGY; PATIENT OUTCOME ASSESSMENT; QUALITY OF LIFE; RENAL INSUFFICIENCY, CHRONIC; SELF REPORT; SEVERITY OF ILLNESS INDEX; SURVEYS AND QUESTIONNAIRES;

EID: 84939874528     PISSN: 0931041X     EISSN: 1432198X     Source Type: Journal    
DOI: 10.1007/s00467-014-2858-8     Document Type: Article

References (29)

1. Ferris ME, Gipson DS, Kimmel PL, Eggers PW (2006) Trends in treatment and outcomes of survival of adolescents initiating end-stage renal disease care in the United States of America. Pediatr Nephrol 21:1020–1026
2. Goldstein SL, Graham N, Burwinkle T, Warady B, Farrah R, Varni JW (2006) Health-related quality of life in pediatric patients with ESRD. Pediatr Nephrol 21:846–850
3. Goldstein SL, Graham N, Warady BA, Seikaly M, McDonald R, Burwinkle TM, Limbers CA, Varni JW (2008) Measuring health-related quality of life in children with ESRD: performance of the generic and ESRD-specific instrument of the Pediatric Quality of Life Inventory (PedsQL). Am J Kidney Dis 51:285–297
4. Goldstein SL, Rosburg NM, Warady BA, Seikaly M, McDonald R, Limbers C, Varni JW (2009) Pediatric end stage renal disease health-related quality of life differs by modality: a PedsQL ESRD analysis. Pediatr Nephrol 24:1553–1560
5. McKenna AM, Keating LE, Vigneux A, Stevens S, Williams A, Geary DF (2006) Quality of life in children with chronic kidney disease-patient and caregiver assessments. Nephrol Dial Transplant 21:1899–1905
6. Riano-Galan I, Malaga S, Rajmil L, Ariceta G, Navarro M, Loris C, Vallo A (2009) Quality of life of adolescents with end-stage renal disease and kidney transplant. Pediatr Nephrol 24:1561–1568
7. Gerson AC, Wentz A, Abraham AG, Mendley SR, Hooper SR, Butler RW, Gipson DS, Lande MB, Shinnar S, Moxey-Mims MM, Warady BA, Furth SL (2010) Health-related quality of life of children with mild to moderate chronic kidney disease. Pediatrics 125:e349–e357
8. Irwin DE, Stucky BD, Thissen D, Dewitt EM, Lai JS, Yeatts K, Varni JW, DeWalt DA (2010) Sampling plan and patient characteristics of the PROMIS pediatrics large-scale survey. Qual Life Res 19:585–594
9. Yeatts KB, Stucky B, Thissen D, Irwin D, Varni JW, DeWitt EM, Lai JS, DeWalt DA (2010) Construction of the Pediatric Asthma Impact Scale (PAIS) for the Patient-Reported Outcomes Measurement Information System (PROMIS). J Asthma 47:295–302
10. Varni JW, Stucky BD, Thissen D, Dewitt EM, Irwin DE, Lai JS, Yeatts K, Dewalt DA (2010) PROMIS Pediatric Pain Interference Scale: an item response theory analysis of the pediatric pain item bank. J Pain 11:1109–1119
11. Irwin DE, Stucky BD, Langer MM, Thissen D, Dewitt EM, Lai JS, Yeatts KB, Varni JW, Dewalt DA (2011) PROMIS Pediatric Anger Scale: an item response theory analysis. Qual Life Res 21:697–706
12. DeWitt EM, Stucky BD, Thissen D, Irwin DE, Langer M, Varni JW, Lai JS, Yeatts KB, Dewalt DA (2011) Construction of the eight-item patient-reported outcomes measurement information system pediatric physical function scales: built using item response theory. J Clin Epidemiol 64:794–804
13. Varni JW, Seid M, Kurtin PS (2001) PedsQL 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care 39:800–812
14. Irwin DE, Stucky B, Langer MM, Thissen D, Dewitt EM, Lai JS, Varni JW, Yeatts K, DeWalt DA (2010) An item response analysis of the pediatric PROMIS anxiety and depressive symptoms scales. Qual Life Res 19:595–607
15. Selewski DT, Collier DN, MacHardy J, Gross HE, Pickens EM, Cooper AW, Bullock S, Earls MF, Pratt KJ, Scanlon K, McNeill JD, Messer KL, Lu Y, Thissen D, DeWalt DA, Gipson DS (2013) Promising insights into the health related quality of life for children with severe obesity. Health Qual Life Outcomes 11:29
16. Gipson DS, Selewski DT, Massengill SF, Wickman L, Messer KL, Herreshoff E, Bowers C, Ferris ME, Mahan JD, Greenbaum LA, MacHardy J, Kapur G, Chand DH, Goebel J, Barletta GM, Geary D, Kershaw DB, Pan CG, Gbadegesin R, Hidalgo G, Lane JC, Leiser JD, Plattner BW, Song PX, Thissen D, Liu Y, Gross HE, DeWalt DA (2013) Gaining the PROMIS perspective from children with nephrotic syndrome: a Midwest pediatric nephrology consortium study. Health Qual Life Outcomes 11:30
17. Hinds PS, Nuss SL, Ruccione KS, Withycombe JS, Jacobs S, DeLuca H, Faulkner C, Liu Y, Cheng YI, Gross HE, Wang J, DeWalt DA (2013) PROMIS pediatric measures in pediatric oncology: valid and clinically feasible indicators of patient-reported outcomes. Pediatr Blood Cancer 60:402–408
18. U.S. Department of Health and Human Services, Food and Drug Administration. Guidance for industry: Patient-reported outcomes measures. Avaliable at: http://www.fda.gov/downloads/Drugs/GuidanceComplianceRegulatoryInformation/Guidances/UCM193282.pdf
19. Schwartz GJ, Haycock GB, Edelmann CM Jr, Spitzer A (1976) A simple estimate of glomerular filtration rate in children derived from body length and plasma creatinine. Pediatrics 58:259–263
20. Levey AS, Coresh J, Balk E, Kausz AT, Levin A, Steffes MW, Hogg RJ, Perrone RD, Lau J, Eknoyan G (2003) National Kidney Foundation practice guidelines for chronic kidney disease: evaluation, classification, and stratification. Ann Intern Med 139:137–147
21. Cohen J (ed) (1988) Statistical power analysis for the behavioral sciences. Lawrence Earlbaum Associates, Hillsdale, NJ
22. Gipson DS, Trachtman H, Kaskel FJ, Radeva MK, Gassman J, Greene TH, Moxey-Mims MM, Hogg RJ, Watkins SL, Fine RN, Middleton JP, Vehaskari VM, Hogan SL, Vento S, Flynn PA, Powell LM, McMahan JL, Siegel N, Friedman AL (2011) Clinical trials treating focal segmental glomerulosclerosis should measure patient quality of life. Kidney Int 79:678–685
23. Gledhill J, Rangel L, Garralda E (2000) Surviving chronic physical illness: psychosocial outcome in adult life. Arch Dis Child 83:104–110
24. Morton MJ, Reynolds JM, Garralda ME, Postlethwaite RJ, Goh D (1994) Psychiatric adjustment in end-stage renal disease: a follow up study of former paediatric patients. J Psychosom Res 38:293–303
25. Fadrowski J, Cole SR, Hwang W, Fiorenza J, Weiss RA, Gerson A, Furth SL (2006) Changes in physical and psychosocial functioning among adolescents with chronic kidney disease. Pediatr Nephrol 21:394–399
26. Gerson A, Hwang W, Fiorenza J, Barth K, Kaskel F, Weiss L, Zelikovsky N, Fivush B, Furth S (2004) Anemia and health-related quality of life in adolescents with chronic kidney disease. Am J Kidney Dis 44:1017–1023
27. Gerson AC, Riley A, Fivush BA, Pham N, Fiorenza J, Robertson J, Chandra M, Trachtman H, Weiss R, Furth SL (2005) Assessing health status and health care utilization in adolescents with chronic kidney disease. J Am Soc Nephrol 16:1427–1432
28. Ruth EM, Landolt MA, Neuhaus TJ, Kemper MJ (2004) Health-related quality of life and psychosocial adjustment in steroid-sensitive nephrotic syndrome. J Pediatr 145:778–783
29. Park KS, Hwang YJ, Cho MH, Ko CW, Ha IS, Kang HG, Cheong HI, Park YS, Lee YJ, Lee JH, Cho HY (2012) Quality of life in children with end-stage renal disease based on a PedsQL ESRD module. Pediatr Nephrol 27:2293–2300