The proxy problem anatomized: Child-parent disagreement in health related quality of life reports of chronically ill adolescents

Health and Quality of Life Outcomes

Volumn 10, Issue , 2012, Pages

  Sattoe, Jane N T ^a,b   van Staa, AnneLoes ^a,b   Moll, Henriëtte A ^c  

^a ROTTERDAM UNIVERSITY OF APPLIED SCIENCES   (Netherlands)

^b ERASMUS UNIVERSITY ROTTERDAM   (Netherlands)

^c SOPHIA CHILDREN S HOSPITAL   (Netherlands)

Author keywords

Adolescent; Chronic illness; DCGM 10; KIDSCREEN 10; Parent; Proxy report; Quality of life; Self report

Indexed keywords

ADOLESCENT; ADULT; ANALYSIS OF VARIANCE; ARTICLE; CHI SQUARE TEST; CHILD; CHILD PARENT RELATION; CHRONIC DISEASE; CHRONIC PATIENT; CONTROLLED STUDY; CORRELATION COEFFICIENT; CROSS-SECTIONAL STUDY; DEMOGRAPHY; FEMALE; HOSPITAL ADMISSION; HUMAN; MAJOR CLINICAL STUDY; MALE; QUALITY OF LIFE; RATING SCALE; SCHOOL CHILD; CHI SQUARE DISTRIBUTION; CHILD WELFARE; COMPARATIVE STUDY; CUSTODY; EDUCATIONAL STATUS; HEALTH SURVEY; INSTRUMENTATION; NETHERLANDS; PARENT; PSYCHOLOGICAL ASPECT; PSYCHOMETRY; QUESTIONNAIRE; REPRODUCIBILITY; RISK FACTOR; SELF REPORT; SOCIOECONOMICS;

ADOLESCENT; ADULT; ANALYSIS OF VARIANCE; CHI-SQUARE DISTRIBUTION; CHILD; CHILD WELFARE; CHRONIC DISEASE; CROSS-SECTIONAL STUDIES; EDUCATIONAL STATUS; FEMALE; HEALTH STATUS INDICATORS; HUMANS; MALE; NETHERLANDS; PARENT-CHILD RELATIONS; PARENTS; PROXY; PSYCHOMETRICS; QUALITY OF LIFE; QUESTIONNAIRES; REPRODUCIBILITY OF RESULTS; RISK FACTORS; SELF REPORT; SOCIOECONOMIC FACTORS;

EID: 84856104521     PISSN: None     EISSN: 14777525     Source Type: Journal    
DOI: 10.1186/1477-7525-10-10     Document Type: Article

References (44)

1. Eiser C, Morse R. Can parents rate their child's health-related quality of life? Results of a systematic review. Qual Life Res 2001, 10:347-357. 10.1023/A:1012253723272, 11763247.
2. Theunissen NC, Vogels AG, Verrips GH, Koopman HM, Verloove-Vanhorick SP, Kamphuis RP, Wit JM. The proxy problem: parents and children's view on children's HRQoL. Qual Life Res 1998, 6:429-430.
3. Ravelli A, Viola S, Migliavacca D, Pistorio A, Ruperto N, Martini A. Discordance between proxy-reported and observed assessment of functional ability of children with juvenile idiopathic arthritis. Rheumatology (Oxford) 2001, 40:914-919.
4. Upton P, Lawford J, Eiser C. Parent-child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res 2008, 17:895-913. 10.1007/s11136-008-9350-5, 18521721.
5. Gordijn MS, Cremers EMP, Kaspers GJL, Gemke RJBJ. Fatique in children: reliability and validity of the Dutch PedsQL™ Multidimensional Fatique Scale. Qual Life Res 2011, 20:1103-1108. 10.1007/s11136-010-9836-9, 3161196, 21246290.
6. Vrijmoet-Wiersma CM, Kooloos VM, Koopman HM, Kolk AM, van der Laan I, Grootenhuis MA, Egeler RM. Health-related quality of life, cognitive functioning and behaviour problems in children with Langerhans cell histiocytosis. Pediatr Blood Cancer 2009, 52:116-122. 10.1002/pbc.21740, 18819122.
7. Sawyer MG, Reynolds KE, Couper JJ, French DJ, Kennedy D, Martin J, Staugas R, Baghurst PA. A two-year prospective study of the health-related quality of life of children with chronic illness-the parents' perspective. Qual Life Res 2005, 14:395-405. 10.1007/s11136-004-0786-y, 15892428.
8. Klassen AF, Miller A, Fine S. Health-related quality of life in children and adolescents who have a diagnosis of attention-deficit/hyperactivity disorder. Pediatrics 2004, 114:541-547.
9. Solans M, Pane S, Estrada MD, Serra-Sutton V, Berra S, Herdman M, Alonso J, Rajmil L. Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value Health 2008, 11:742-764. 10.1111/j.1524-4733.2007.00293.x, 18179668.
10. White-Koning M, Grandjean H, Colver A, Arnaud C. Parent and professional reports of the quality of life of children with cerebral palsy and associated intellectual impairment. Dev Med Child Neurol 2008, 50:618-624. 10.1111/j.1469-8749.2008.03026.x, 18754901.
11. Shaw KL, Southwood TR, McDonagh JE. Growing up and moving on in rheumatology: parents as proxies of adolescents with juvenile idiopathic arthritis. Arthritis Rheum 2006, 55:189-198. 10.1002/art.21834, 16583398.
12. White-Koning M, Arnaud C, Dickinson HO, Thyen U, Beckung E, Fauconnier J, McManus V, Michelsen SI, Parkes J, Parkinson K, Schirripa G, Colver A. Determinants of child-parent agreement in quality-of-life reports: a European study of children with cerebral palsy. Pediatrics 2007, 120:804-814.
13. Janse AJ. Quality of life of chronically ill children. Perception of patients, parents and physicians 2005, Enschede: Febodruk Enschede.
14. Janse AJ, Uiterwaal CS, Gemke RJ, Kimpen JL, Sinnema G. A difference in perception of quality of life in chronically ill children was found between parents and pediatricians. J Clin Epidemiol 2005, 58:495-502. 10.1016/j.jclinepi.2004.09.010, 15845336.
15. Arrington-Sanders R, Yi MS, Tsevat J, Wilmott RW, Mrus JM, Britto MT. Gender differences in health-related quality of life of adolescents with cystic fibrosis. Health Qual Life Outcomes 2006, 4:5. 10.1186/1477-7525-4-5, 1402258, 16433917.
16. Britto MT, Kotagal UR, Chenier T, Tsevat J, Atherton HD, Wilmott RW. Differences between adolescents' and parents' reports of health-related quality of life in cystic fibrosis. Pediatr Pulmonol 2004, 37:165-171. 10.1002/ppul.10436, 14730662.
17. Youngblade LM, Shenkman EA. Congruence between parents' and adolescents' reports of special health care needs in a Title XXI program. J Pediatr Psychol 2003, 28:393-401. 10.1093/jpepsy/jsg029, 12904451.
18. Viner RM. Transition of care from paediatric to adult services: one part of improved health services for adolescents. Arch Dis Child 2008, 93:160-163. 10.1136/adc.2006.103721, 17942588.
19. van Staa AL, van der Stege HA, Jedeloo S, Moll HA, Hilberink SR. Readiness to transfer to adult care of adolescents with chronic conditions: exploration of associated factors. J Adolesc Health 2011, 48:295-302. 10.1016/j.jadohealth.2010.07.009, 21338902.
20. van Staa AL, . On Your Own Feet Research Group Unraveling triadic communication in hospital consultations with adolescents with chronic conditions: The added value of mixed methods research. Patient Educ Couns 2011, 82:455-464. 10.1016/j.pec.2010.12.001, 21194872, On Your Own Feet Research Group.
21. The KIDSCREEN Group Europe The KIDSCREEN Questionnaires-Quality of life Questionnaires for children and adolescents. Handbook 2006, Lengerich: Pabst Science Publishers, The KIDSCREEN Group Europe.
22. Bullinger M, Schmidt S, Petersen C. Assessing quality of life of children with chronic health conditions and disabilities: a European approach. Int J Rehabil Res 2002, 25:197-206. 10.1097/00004356-200209000-00005, 12352173.
23. Petersen C, Schmidt S, Power M, Bullinger M. Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: a European perspective. Qual Life Res 2005, 14:1065-1077. 10.1007/s11136-004-2575-z, 16041902.
24. Ravens-Sieberer U, Gosch A, Rajmil L, Erhart M, Bruil J, Duer W, Auquier P, Power M, Abel T, Czemy L, Mazur J, Czimbalmos A, Tountas Y, Hagguist Kilroe J, . the European KIDSCREEN Group KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Rev Pharmacoecon Outcomes Res 2005, 5:353-364. 10.1586/14737167.5.3.353, 19807604, the European KIDSCREEN Group.
25. Schmidt S, Peterson C, Mühlan H. The DISABKIDS Questionnaires-Handbook incl. CD-Rom 2006, Lengerich: Pabst Science Publishers.
26. Fiscella K, Fremont AM. Use of geocoding in surname analysis to estimate race and ethnicity. Health Serv Res 2006, 4:1482-14500.
27. Bouwhuis CB, Moll HA. Determination of ethnicity in children in The Netherlands: two methods compared. Eur J Epidemiol 2003, 5:385-388.
28. de Klerk M, Iedema J, van Campen C. SCP-maat voor lichamelijke beperkingen op basis van AVO 2003 [SPC measure for physical limitations based on AVO 2003] 2006, Den Haag: Sociaal Cultureel Planbureau.
29. Norman GR, Sloan JA, Wyrwich KW. Interpretation of changes in health-related quality of life: the remarkable universality of half a standard deviation. Med Care 2003, 41:582-592.
30. Bland JM, Altman DG. Statistical methods for assessing agreement between two methods of clinical measurement. Lancet 1986, 327:307-310.
31. Ylimainen K, Nachemson A, Sommerstein K, Stockselius A, Norling Hermansson L. Health-related quality of life in Swedish children and adolescents with limb reduction deficiency. Acta Paediatr 2010, 99:1550-1555. 10.1111/j.1651-2227.2010.01855.x, 20456269.
32. Verrips GH, Vogels AG, den Ouden AL, Paneth N, Verloove-Vanhorick SP. Measuring health-related quality of life in adolescents: agreement between raters and between methods of administration. Child Care Health Dev 2000, 26:457-469. 10.1046/j.1365-2214.2000.00181.x, 11091262.
33. Cremeens J, Eiser C, Blades M. Factors influencing agreement between child self-report and parent proxy-reports on the Pediatric Quality of Life Inventory 4.0 (PedsQL) generic core scales. Health Qual Life Outcomes 2006, 4:58. 10.1186/1477-7525-4-58, 1564004, 16942613.
34. Majnemer A, Shevell M, Law M, Poulin C, Rosenbaum P. Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy. Qual Life Res 2008, 17:1163-1171. 10.1007/s11136-008-9394-6, 18821030.
35. Waters E, Stewart-Brown S, Fitzpatrick R. Agreement between adolescent self-report and parent reports of health and well-being: results of an epidemiological study. Child Care Health Dev 2003, 29:501-509. 10.1046/j.1365-2214.2003.00370.x, 14616908.
36. Gates P, Otsuka N, Sanders J, McGee-Brown J. Functioning and health-related quality of life of adolescents with cerebral palsy: self versus parent perspectives. Dev Med Child Neurol 2010, 52:843-849. 10.1111/j.1469-8749.2010.03666.x, 20477836.
37. Oeffinger D, Gorton G, Bagley A, Nicholson D, Barnes D, Calmes J, Abel M, Damiano D, Kryscio R, Rogers S, Tylkowski C. Outcome assessments in children with cerebral palsy, part I: descriptive characteristics of GMFCS Levels I to III. Dev Med Child Neurol 2007, 49:843-849.
38. Hatzmann J, Heymans HS, Ferrer-i-Carbonell A, van Praag BMG, Grootenhuis MA. Hidden consequences of success in paediatrics: parental health-related quality of life--results from the Care Project. Pediatrics 2008, 122:e1030-1038. 10.1542/peds.2008-0582, 18852185.
39. Albrecht GL, Devlieger PJ. The disability paradox: high quality of life against all odds. Soc Sci Med 1999, 48:977-988. 10.1016/S0277-9536(98)00411-0, 10390038.
40. Sprangers MAG, Schwartz CE. Integrating response shift into health-related quality of life research: A theoretical model. Social Science & Medicine 1999, 48:1507-1515. 10.1016/S0277-9536(99)00045-3, 22287672.
41. Sawyer SM, Drew S, Yeo MS, Britto MT. Adolescents with a chronic condition: challenges living, challenges treating. Lancet 2007, 369:1481-1489. 10.1016/S0140-6736(07)60370-5, 17467519.
42. Giannakopoulos G, Dimitrakaki C, Pedeli X, Kolaitis G, Rotsika V, Ravens-Sieberer U, Tountas Y. Adolescents' wellbeing and functioning: relationships with parents' subjective general physical and mental health. Health Qual Life Outcomes 2009, 7:100. 10.1186/1477-7525-7-100, 2804705, 20003508.
43. van Dijk J, Huisman J, Moll CM, Schouten-van Meeteren AYN, Bezemer PD, Ringens PJ, Cohen-Kettenis PT, Imhof SM. Health-related quality of life of child and adolescent retinoblastoma survivors in the Netherlands. Health Qual Life Outcomes 2007, 5:65. 10.1186/1477-7525-5-65, 2219958, 18053178.
44. Hoopman R, Terwee CB, Muller MJ, Ory FG, Aaronson NK. Methodological challenges in quality of life research among Turkish and Moroccan ethnic minority cancer patients: translation, recruitment and ethical issues. Ethn Health 2009, 14:237-253. 10.1080/13557850802398832, 19012066.