Health related quality of life in Dutch young adults: Psychometric properties of the PedsQL generic core scales young adult version

Health and Quality of Life Outcomes

Volumn 12, Issue 1, 2014, Pages

  Limperg, Perrine F ^a   Haverman, Lotte ^a   van Oers, Hedy A ^a   van Rossum, Marion A J ^a,b   Maurice Stam, Heleen ^a   Grootenhuis, Martha A ^a  

^a EMMA CHILDREN S HOSPITAL   (Netherlands)

^b Department of Rheumatology Reade Location Jan van Breemen ^*  (Netherlands)

Author keywords

Health related quality of life; Pediatrics; PedsQL; Psychometric properties; Young adults

Indexed keywords

ADULT; ARTICLE; CONSTRUCT VALIDITY; FEMALE; GROUPS BY AGE; HEALTH STATUS; HUMAN; INTERNAL CONSISTENCY; MALE; NAMED INVENTORIES, QUESTIONNAIRES AND RATING SCALES; NETHERLANDS; NORMAL HUMAN; PEDIATRIC QUALITY OF LIFE INVENTORY YOUNG ADULT GENERIC CORE SCALES; PSYCHOMETRY; QUALITY OF LIFE; SOCIOECONOMICS; YOUNG ADULT; ADOLESCENT; CHRONIC DISEASE; EDUCATIONAL STATUS; MARRIAGE; PSYCHOLOGICAL ASPECT; QUESTIONNAIRE; REPRODUCIBILITY; SEX DIFFERENCE; STANDARD;

ADOLESCENT; ADULT; CHRONIC DISEASE; EDUCATIONAL STATUS; FEMALE; HEALTH STATUS; HUMANS; MALE; MARITAL STATUS; NETHERLANDS; PSYCHOMETRICS; QUALITY OF LIFE; QUESTIONNAIRES; REPRODUCIBILITY OF RESULTS; SEX FACTORS; YOUNG ADULT;

EID: 84892474077     PISSN: None     EISSN: 14777525     Source Type: Journal    
DOI: 10.1186/1477-7525-12-9     Document Type: Article

References (46)

1. Varni JW, Burwinkle TM, Lane MM. Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes 2005, 3:1-9. 10.1186/1477-7525-3-1, 545054, 15634354.
2. Raty LKA, Larsson BMW, Soderfeldt BA. Health-related quality of life in youth: a comparison between adolescents and young adults with uncomplicated epilepsy and healthy controls. J Adolesc Health 2003, 33:252-258. 10.1016/S1054-139X(03)00101-0, 14519566.
3. Verhoof EJ, Maurice-Stam H, Heymans HS, Grootenhuis MA. Health-related quality of life, anxiety and depression in young adults with disability benefits due to childhood-onset somatic conditions. Child Adolesc Psychiatr Ment Health 2013, 7:12-21.
4. Haverman L, Grootenhuis MA, Van den Berg JM, Van VM, Dolman KM, Swart JF, Kuijpers TW, Van Rossum MA. Predictors of health-related quality of life in children and adolescents with juvenile idiopathic arthritis: results from a web-based survey. Arthritis Care Res 2012, 64:694-703.
5. Eiser C, Morse R. Quality-of-life measures in chronic diseases of childhood. Health Technol Assess 2001, 5:1-157.
6. Varni JW, Limbers CA. The PedsQL 4.0 generic core scales young adult version: feasibility, reliability and validity in a university student population. J Health Psychol 2009, 14:611-622. 10.1177/1359105309103580, 19383661.
7. Ewing JE, King MT, Smith NF. Validation of modified forms of the PedsQL generic core scales and cancer module scales for adolescents and young adults (AYA) with cancer or a blood disorder. Qual Life Res 2009, 18:231-244. 10.1007/s11136-008-9424-4, 19165624.
8. Varni JW, Limbers CA, Burwinkle TM. Parent proxy-report of their children's health-related quality of life: an analysis of 13,878 parents' reliability and validity across age subgroups using the PedsQLTM 4.0 generic core scales. Health Qual Life Outcomes 2007, 5:1-10. 10.1186/1477-7525-5-1, 1769360, 17201920.
9. Varni JW, Seid M, Rode CA. The PedsQL: measurement model for the pediatric quality of life inventory. Med Care 1999, 37:126-139. 10.1097/00005650-199902000-00003, 10024117.
10. Varni J, Limbers C, Burwinkle T. How young can children reliably and validly self-report their health-related quality of life? An analysis of 8,591 children across age subgroups with the PedsQLTM 4.0 generic core scales. Health Qual Life Outcomes 2007, 5:1-13. 10.1186/1477-7525-5-1, 1769360, 17201920.
11. Fekkes M, Theunissen NC, Brugman E, Veen S, Verrips EG, Koopman HM, Vogels T, Wit JM, Verloove-Vanhorick SP. Development and psychometric evaluation of the TAPQOL: a health-related quality of life instrument for 1-5-year-old children. Qual Life Res 2000, 9:961-972. 10.1023/A:1008981603178, 11284215.
12. Verrips EG, Vogels T, Koopman HM, Theunissen NC, Kamphuis RP, Fekkes M, Wit JM, Verloove-Vanhorick SP. Measuring health-related quality of life in a child population. Eur J Public Health 1999, 9:188-193.
13. Ravens-Sieberer U, Auquier P, Erhart M, Gosch A, Rajmil L, Bruil J, Power M, Duer W, Cloetta B, Czemy L, Mazur J, Czimbalmos A, Tountas Y, Hagquist C, Kilroe J. The KIDSCREEN-27 quality of life measure for children and adolescents: psychometric results from a cross-cultural survey in 13 European countries. Qual Life Res 2007, 16:1347-1356. 10.1007/s11136-007-9240-2, 17668292.
14. Landgraf J. Child Health Questionnaires (CHQ). A user's manual 1999, Boston, MA: HealthActCHQ.
15. Varni JW, Burwinkle TM, Seid M, Skarr D. The PedsQL 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambul Pediatr 2003, 3:329-341. 10.1367/1539-4409(2003)003<0329:TPAAPP>2.0.CO;2, 14616041.
16. Reinfjell T, Diseth T, Veenstra M, Vikan A. Measuring health-related quality of life in young adolescents: reliability and validity in the norwegian version of the pediatric quality of life inventoryTM 4.0 (PedsQL) generic core scales. Health Qual Life Outcomes 2006, 4:61-70. 10.1186/1477-7525-4-61, 1584218, 16972987.
17. Grootenhuis MA, Koopman HM, Verrips EG, Vogels AG, Last BF. Health-related quality of life problems of children aged 8-11 years with a chronic disease. Dev Neurorehabil 2007, 10:27-33. 10.1080/13682820600691017, 17608324.
18. Stam H, Hartman EE, Deurloo JA, Groothoff J, Grootenhuis MA. Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood. J Adolesc Health 2006, 39:4-13. 10.1016/j.jadohealth.2005.03.011, 16781955.
19. Sprangers MAG, de Regt EB, Andries F, van Agt HME, Bijl RV, de Boer JB, Foets M, Hoeymans N, Jacobs AE, Kempen GIJM, Miedema HS, Tijhuis MAR, de Haes HCJM. Which chronic conditions are associated with better or poorer quality of life?. J Clin Epidemiol 2000, 53:895-907. 10.1016/S0895-4356(00)00204-3, 11004416.
20. de Wit M, Delemarre-van de Waal HA, Pouwer F, Gemke RJBJ, Snoek FJ. Monitoring health related quality of life in adolescents with diabetes: a review of measures. Arch Dis Child 2007, 92:434-439. 10.1136/adc.2006.102236, 2083731, 17449526.
21. Kokkonen ER, Kokkonen J, Moilanen I. Predictors of delayed social maturation and mental health disorders in young adults chronically ill since childhood. Nord J Psychiat 2001, 55:237-242.
22. Wiznitzer M, Verhulst FC, van den Brink W, Koeter M, van der Ende J, Giel R, Koot HM. Detecting psychopathology in young adults: the young adult self report, the general health questionnaire and the symptom checklist as screening instruments. Acta Psychiatr Scand 1992, 86:32-37. 10.1111/j.1600-0447.1992.tb03221.x, 1414396.
23. Jorngarden A, Wettergen L, Von EL. Measuring health-related quality of life in adolescents and young adults: Swedish normative data for the SF-36 and the HADS, and the influence of age, gender, and method of administration. Health Qual Life Outcomes 2006, 4:91-101. 10.1186/1477-7525-4-91, 1697805, 17140436.
24. Engelen V, Haentjens MM, Detmar SB, Koopman HM, Grootenhuis MA. Health related quality of life of Dutch children: psychometric properties of the PedsQL in the Netherlands. BMC Pediatr 2009, 9:68-76. 10.1186/1471-2431-9-68, 2776579, 19887000.
25. Arnett JJ. Emerging adulthood: a theory of development from the late teens through the twenties. Am Psychol 2000, 55:469-480.
26. Grootenhuis MA, Stam H, Destree-Vonk A, Heymans HS, Last BF. Levensloop vragenlijst voor jong-volwassenen. [Course of life questionnaire for young adults]. Gedrag Gezond 2003, 31:336-350.
27. Mokkink LB, van der Lee JH, Grootenhuis MA, Offringa M, Heymans HS. Defining chronic diseases and health conditions in childhood (0-18 years of age): national consensus in the Netherlands. Eur J Pediatr 2008, 167:1441-1447. 10.1007/s00431-008-0697-y, 18340463.
28. IBM Corp IBM SPSS Statistics for Windows. [Version 20.0.] 2011, Armonk, NY: IBM Corp, Ref Type: Computer Program, IBM Corp.
29. Cronbach LJ. Coefficient alpha and the internal structure of tests. Psychometrika 1951, 16:297-334.
30. Nunnally JC, Bernstein IR. Psychometric Theory 1994, New York: McGraw-Hill, 3.
31. Cohen J. Statistical Power Analysis for the Behavioral Sciences 1988, Hilldale: Lawrence Erlbaum Associates.
32. Streiner DL, Norman GR. Health measurement scales. A practical guide to their development and use 2003, New York: Oxford University Press.
33. Wallander JL, Varni JW. Effects of pediatric chronic physical disorders on child and family adjustment. J Child Psychol Psychiatry 1998, 39:29-46. 10.1017/S0021963097001741, 9534085.
34. Thompson RJ, Gustafson KE. Adaptation to chronic childhood illness 1996, Washington, DC: American Psychological Association.
35. Verhoof E, Maurice-Stam H, Heymans H, Grootenhuis M. Growing into disability benefits? Psychosocial course of life of young adults with a chronic somatic disease or disability. Acta Paediatr 2012, 101:19-26. 10.1111/j.1651-2227.2011.02438.x, 21824193.
36. Varekamp I, de Vries G, Heutink A, van Dijk F. Empowering employees with chronic diseases; development of an intervention aimed at job retention and design of a randomised controlled trial. BMC Health Serv Res 2008, 8:224-232. 10.1186/1472-6963-8-224, 2614990, 18983652.
37. Langeveld NE, Grootenhuis MA, Voute PA, de Haan RJ, van den Bos C. Quality of life, self-esteem and worries in young adult survivors of childhood cancer. Psychooncology 2004, 13:867-881. 10.1002/pon.800, 15386796.
38. Barrera M, Teall T, Barr R, Silva M, Greenberg M. Health related quality of life in adolescent and young adult survivors of lower extremity bone tumors. Pediatr Blood Cancer 2012, 58:265-273. 10.1002/pbc.23017, 21319288.
39. Bronner AE, Kuijlen T. The live or digital interviewer: a comparison between CASI, CAPI and CATI with respect to differences in response behavior. Int J Market Res 2007, 49:167-190.
40. Varni JW, Seid M, Smith Knight T, Burwinkle T, Brown J, Szer IS. The PedsQL in pediatric rheumatology: reliability, validity, and responsiveness of the pediatric quality of life inventory generic core scales and rheumatology module. Arthritis Rheum 2002, 46:714-725. 10.1002/art.10095, 11920407.
41. Statistics Netherlands. http://www.cbs.nl.
42. Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, Slap GB. Transition from child-centered to adult health-care systems for adolescents with chronic conditions: a position paper of the society for adolescent medicine. J Adolesc Health 1993, 14:570-576. 10.1016/1054-139X(93)90143-D, 8312295.
43. Kirk S. Transitions in the lives of young people with complex healthcare needs. Child Care Health Dev 2008, 34:567-575. 10.1111/j.1365-2214.2008.00862.x, 18796049.
44. Van Staa AL, Jedeloo S, Van MJ, Latour JM. Crossing the transition chasm: experiences and recommendations for improving transitional care of young adults, parents and providers. Child Care Health Dev 2011, 37:821-832. 10.1111/j.1365-2214.2011.01261.x, 22007982.
45. Haverman L, Verhoof EJ, Maurice-Stam H, Heymans HS, Gerlag DM, Van Rossum MA, Grootenhuis MA. Health-related quality of life and psychosocial developmental trajectory in young female beneficiaries with JIA. Rheumatology (Oxford) 2012, 51:368-374. 10.1093/rheumatology/ker378, 22179727.
46. Haverman L, van Rossum MAJ, van Veenendaal M, van den Berg JM, Dolman KM, Swart J, Kuijpers TW, Grootenhuis MA. Effectiveness of a web-based application to monitor health-related quality of life. Pediatrics 2013, 131:533-543.