227
Views
90
CrossRef citations to date
0
Altmetric
Review

Conceptual and methodological advances in child-reported outcomes measurement

, , &
Pages 385-396 | Published online: 09 Jan 2014

References

  • United States Department of Health & Human Services Food and Drug Administration. Guidance for industry patient report outcome measures: use in medical product development to support labeling claims. 15 March (2010).
  • Reeve B, Hays RD, Bjorner J et al. Psychometric evaluation and calibration of health-related quality of life item banks: Plans for the Patient-Reported Outcome Measurement Information System (PROMIS). Med. Care45(5), S22–S31 (2007).
  • National Institutes of Health. Patient-Reported Outcomes Measurement Information System: dynamic tools to measure health outcomes from the patient perspective. 2010(3/15) (2010).
  • Gershon RC, Cella D, Fox NA. Assessment of neurological and behavioural function: the NIH Toolbox. Lancet Neurol.9(2), 138–139 (2010).
  • Neuro-QOL: Quality of life in neurological disorders. 2010(06/2010) (2010).
  • Forrest CB, Martin DP, Holve E, Millman A. Health services research doctoral core competencies. BMC Health Serv. Res.9, 107–111 (2009).
  • Forrest CB, Riley AW. Childhood origins of adult health: a basis for life-course health policy. Health Aff. (Millwood)23(5), 155–164 (2004).
  • Bevans K, Forrest CB. The reliability and validity of children’s self-reported health. In: Economic Evaluation of Child Health. Ungar W (Ed.). Oxford, NY, USA (2010).
  • DeCivita M, Reiger D, Alamgir AH, Anis AH, FitzGerald MJ, Marra CA. Evaluating health-related quality-of-life studies in paediatric populations: some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics23(7), 659–685 (2005).
  • Ravens-Sieberer U, Erhart M, Wille N, Wetzel R, Nickel J, Bullinger M. Generic health-related quality-of-life assessment in children and adolescents: methodological considerations. Pharmacoeconomics24(12), 1199–1220 (2006).
  • Forrest CB, Simpson L, Clancy C. Child health services research: challenges and opportunities. JAMA22, 1787–1793 (1997).
  • Rebok G, Riley A, Forrest C, Starfield B, Green B, Robertson J. Elementary school aged children’s reports of their health: a cognitive interviewing study. Qual. Life Res.10(1), 59–70 (2001).
  • Demetriou A, Raftopoulos A. Modeling the developing mind: from structure to change. Dev. Rev.19, 319–368 (1999).
  • Demetriou A, Efklides A. Structure, development, and dynamics of the mind: a meta-Piagetian theory. In: Mind, intelligence, and Reasoning: Structure and Development. Demetriou A, Efklides A (Eds). Elsevier, Amsterdam, The Netherlands 75–109 (1994).
  • Williams JM, Binnie LM. Children’s concepts of illness: an intervention to improve knowledge. Br. J. Health Psychol.7(2), 129–147 (2002).
  • Solomon GE, Cassimatis NL. On facts and conceptual systems: young children’s intergration of their understandings of germs and contagion. Dev. Psychol.35(1), 113–126 (1999).
  • Piko B. Health-related predictors of self-perceived health in a student population: the importance of physical activity. J. Community Health25(2), 125–137 (2000).
  • Piko BF, Bak J. Children’s perceptions of health and illness: images and lay concepts in preadolescence. Health Educ. Res.21(5), 643–653 (2006).
  • Oakley A, Bendelow G, Barnes J, Buchanan M, Husain OA. Health and cancer prevention: knowledge and beliefs of children and young people. BMJ310(6986), 1029–1033 (1995).
  • Woods SE, Springett J, Porcellato L, Dugdill L. ‘Stop it, it’s bad for you and me’: experiences of and views on passive smoking among primary-school children living in Liverpool. Health Educ. Res.20(6), 645–655 (2005).
  • Piko B. Smoking in adolescence: do attitudes matter? Addict. Behav.26(2), 201–217 (2001).
  • Solans M, Pane S, Estrada MD et al. Health-related quality of life measurement in children and adolescents: a systematic review of generic and disease-specific instruments. Value Health11(4), 742–764 (2007).
  • Shiffman S. Two decades of change for PROs: how patient-reported data collection has been transformed since 1987. Appl. Clin. Trials17(1), 66–66 (2008).
  • Starfield B, Riley A, Breen B, Ensminger M, Ryan S, Kelleher K. The adolescent child health and illness profile: a population-based measure of health. Med. Care33(5), 553–566 (1995).
  • Riley AW, Forrest CB, Rebok GW, Starfield B, Green BF, Robertson JA. The child report form of the CHIP-Child edition: reliability and validity. Med. Care42(3), 221–231 (2004).
  • Bevans KB, Riley AW, Forrest CB. Development of the healthy pathways child-report scales. Qual. Life Res. (In press).
  • Irwin DE, Varni JW, Yeatts K, DeWalt DA. Cognitive interviewing methodology in the development of a pediatric item bank: a patient reported outcomes measurement information system (PROMIS) study. Health Qual. Life Outcomes7, 3 (2009).
  • Walsh TR, Irwin DE, Meier A, Varni JW, DeWalt DA. The use of focus groups in the development of the PROMIS pediatrics item bank. Qual. Life Red.17, 725–735 (2008).
  • Willis GB. Cognitive Interviewing: A Tool for Improving Questionnaire Design. Sage, CA, USA (2005).
  • Rajmil L, Herdman M, Fernandez de Sanmamed MJ et al. Generic health-related quality of life instruments in children and adolescents: a qualitative analysis of content. J. Adolesc. Health34(1), 37–45 (2004).
  • Landgraf JM, Abetz L, Ware JE. Child Health Questionnaire (CHQ): A User’s Manual (Volume 1). The Health Institute, New England Medical Center, MA, USA (1996).
  • Ravens-Sieberer U, Gosch A, Rajmil L, Erhart M, Bruil J, Duer W. KIDSCREEN-52 quality-of-life measure for children and adolescents. Expert Rev. Pharmacoecon. Outcomes Res.5(3), 353–364 (2005).
  • Rajmil L, Alonso J, Berra S, Ravens-Sieberer U, Gosch A, Simeoni M. Use of a children’s questionnaire of health related quality of life (KIDSCREEN) as a measure of need for health care services. J. Adolesc. Health38(5), 511–518 (2006).
  • Varni JW, Burwinkle TM, Seid M. The PedsQL (TM) 4.0 as a school population health measure: feasibility, reliability, and validity. Qual. Life Res.15(2), 203–215 (2006).
  • Waters EB, Salmon LA, Wake M, Wright M, Hesketh KD. A school-based population study of the self-report child health questionnaire. J. Adolesc. Health29, 140–149 (2001).
  • Varni JW, Seid M, Kurtin PS. 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. Care39(8), 800–812 (2001).
  • von Rueden U, Gosch A, Rajmil L, Bisegger C, Ravens-Sieberer U. Socioeconomic determinants of health related quality of life in childhood and adolescence: results from a European study. J. Epidemiol. Community Health60(2), 130–135 (2006).
  • van der Linden WJ, Hambleton RK. Item response theory: brief history, common models, and extensions. In: Handbook of Modern Item Response Theory. Anonymous Springer-Verlag, NY, USA 1–28 (1997).
  • Hambleton RK, Jones RW. Comparison of classical test theory and item response theory and their applications to test development. Educ. Measurement Issues and Practice38–47 (1993).
  • Hambleton RK. Emergence of item response modeling in instrument development and data analysis. Med. Care38(9), II60–II65 (2000).
  • Bjorner JB, Chang CH, Thissen D, Reeve BB. Developing tailored instruments: item banking and computerized adaptive assessment. Qual. Life Res.16(Suppl. 1), 95–108 (2007).
  • Cella D, Gershon R, Lai J, Choi S. The future of outcomes measurement: item banking, tailored short-forms, and computerized adaptive assessment. Qual. Life Res.16, 133–141 (2007).
  • Harter S, Pike R. The pictorial scale of perceive competence and social acceptance for young children. Child Dev.55(6), 1969–1982 (1984).
  • Valla JP, Bergeron L, Bidaut-Russell M, St-George M, Gaudet N. Reliability of the Dominic-R: a young child mental health questionnaire combining visual and auditory stimuli. J. Child. Psychol. Psyc.38(6), 717–724 (1997).
  • Truman J, Robinson K, Evans AL et al. The Strengths and Difficulties Questionnaire: a pilot study of a new computer version of the self-report scale. Eur. Child. Adoles. Psy.12(1), 9–14 (2003).
  • McGrath PA, Seifert CE, Speechley KN, Booth JC, Stitt L, Gibson MC. A new analogue scale for assessing children’s pain: an initial validation study. Pain64(3), 435–443 (1996).
  • Shahinfar A, Fox NA, Leavitt LA. Preschool children’s exposure to violence: relation of behavior problems to parent and child reports. Am. J. Orthopsychiatry1(115), 125 (2000).
  • Jones R. Survey data collection using audio computer assisted self-interview. West. J. Nurs. Res.25(3), 349–358 (2003).
  • Simoes AA, Bastos FI, Moreira RI, Lynch KG, Metzger DS. Acceptability of audio computer-assisted self-interview (ACASI) among substance abusers seeking treatment in Rio de Janeiro, Brazil. Drug Alcohol Depend.82(Suppl. 1), S103–S107 (2006).
  • Villarroel MA, Turner CF, Eggleston E. Same-gender sex in the United States: impact of the T-ACASI on prevalence estimates. Public Opin. Q70(2), 166–196 (2006).
  • Wainer H. Computerized Adaptive Testing: A Primer. Lawrence Erlbaum Associates, NJ, USA (2000).
  • Stone AA, Broderick JE, Schwartz JE, Sfiffman S, Litcher-Kelly L, Calvanese P. Intensive momentary reporting of pain with an electronic diary: reactivity, compliance, and patient satisfaction. Pain104(1–2), 343–351 (2003).
  • Dale O, Hagen KB. Despite technical problems personal digital assistants outperform pen and paper when collecting patient diary data. J. Clin. Epidemiol.60(1), 8–17 (2006).
  • Palermo TM, Valenzuela D, Stork PP. A randomized trial of electronic versus paper pain diaries in children: impact on compliance, accuracy, and acceptability. Pain107(3), 213–219 (2004).
  • Deutsch JE, Borbely M, Filler J, Huhn K, Guarrera-Bowlby P. Use of a low-cost, commercially available gaming console (Wii) for rehabilitation of an adolescent with cerebral palsy. Phys. Ther.88(10), 1196–1207 (2008).
  • 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.17(6), 895–913 (2008).
  • Barker ET, Bornstein MH, Putnick DL, Hendricks C, Suwalsky JT. Adolescent-mother agreement about adolescent problem behaviors: direction and predictors of disagreement. J. Youth Adolesc.36, 950–962 (2007).
  • Davis E, Nicolas C, Waters E et al. Parent-proxy and child self-report health-related quality of life: using qualitative methods to explain the discordance. Qual. Life Res.16, 863–871 (2007).
  • Bland JM, Altman DG. Statistics notes: Cronbach’s a. BMJ314(7077), 572–574 (1997).

Reprints and Corporate Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

To request a reprint or corporate permissions for this article, please click on the relevant link below:

Academic Permissions

Please note: Selecting permissions does not provide access to the full text of the article, please see our help page How do I view content?

Obtain permissions instantly via Rightslink by clicking on the button below:

If you are unable to obtain permissions via Rightslink, please complete and submit this Permissions form. For more information, please visit our Permissions help page.