Skip to main content
Top
Gepubliceerd in: Quality of Life Research 8/2011

01-10-2011

Health status and QOL instruments used in childhood cancer research: deciphering conceptual content using World Health Organization definitions

Auteurs: Nora Fayed, Vero Schiariti, Cristina Bostan, Alarcos Cieza, Anne Klassen

Gepubliceerd in: Quality of Life Research | Uitgave 8/2011

Log in om toegang te krijgen
share
DELEN

Deel dit onderdeel of sectie (kopieer de link)

  • Optie A:
    Klik op de rechtermuisknop op de link en selecteer de optie “linkadres kopiëren”
  • Optie B:
    Deel de link per e-mail

Abstract

Purpose

The impact of cancer on children can be assessed through various concepts including mental and physical health status and most significantly quality of life (QOL). It has been difficult to compare data collected through these instruments due to a lack of continuity or understanding of overlaps and gaps between them. To delineate the content of the most commonly used instruments in childhood cancer on an item-by-item basis, this study used standardized methods to link health information to the International Classification of Functioning, Disability, and Health (ICF) as well as World Health Organization (WHO) standard definitions of health and quality of life.

Method

MEDLINE, CINAHL, EMBASE, PsycINFO, Cancerlit, and Sociological Abstracts were searched from the inception of each database to June 15th, 2009 for health status and quality of life instruments. The six most common cancer-specific and generic instruments employed in primary research in childhood cancer were analyzed on an item-by-item basis by two content assessors specializing in ICF linking and WHO definitions of health and QOL, using a standardized iterative technique developed at the ICF Research Branch.

Results

We report the extent to which health status and QOL are represented in each instrument. Most measures emphasize a majority health status perspective according to WHO definitions of health. The generic instruments stress activities and participation domains over body functions or environment factors according to the ICF while cancer-specific instruments vary in their emphasis. Initial phase of coding agreement between assessors was in the substantial range (0.6–0.8 using Cohen’s kappa).

Conclusion

A comprehensive and systematic content analysis of the most commonly employed health status and QOL instruments was conducted for this review. Two criteria were described as follows: the perspectives of the instruments (i.e., health vs. QOL) and the health content (according to ICF components). No single instrument demonstrated an ideal balance of content characteristics according to these criteria, and thus, each must be considered carefully relative to one’s particular research or clinical evaluative purpose.
Literatuur
1.
go back to reference Ries, L. A. G., Kosary, C. L., Hankey, B. F., Miller, B. A., Clegg, L., & Edwards, B. K. (1998). SEER cancer statistics review. Resource document. National cancer institute. http://www-seer.ims.nci.nih.gov. Accessed 11 Dec 2009. Ries, L. A. G., Kosary, C. L., Hankey, B. F., Miller, B. A., Clegg, L., & Edwards, B. K. (1998). SEER cancer statistics review. Resource document. National cancer institute. http://​www-seer.​ims.​nci.​nih.​gov. Accessed 11 Dec 2009.
3.
go back to reference Langeveld, N. E., Stam, H., Grootenhuis, M. A., & Last, B. F. (2002). Quality of life in young adult survivors of childhood cancer. Supportive Care in Cancer, 10, 579–600.PubMedCrossRef Langeveld, N. E., Stam, H., Grootenhuis, M. A., & Last, B. F. (2002). Quality of life in young adult survivors of childhood cancer. Supportive Care in Cancer, 10, 579–600.PubMedCrossRef
4.
go back to reference Hinds, P. S. (1990). Quality of life in children and adolescents with cancer. Seminars in Oncology Nursing, 6(4), 285–291.PubMedCrossRef Hinds, P. S. (1990). Quality of life in children and adolescents with cancer. Seminars in Oncology Nursing, 6(4), 285–291.PubMedCrossRef
5.
go back to reference Hinds, P. S., Gattuso, J. S., Fletcher, A., Baker, E., Coleman, B., Jackson, T., et al. (2004). Quality of life as conveyed by paediatric patients with cancer. Quality of Life Research, 13(4), 761–772.PubMedCrossRef Hinds, P. S., Gattuso, J. S., Fletcher, A., Baker, E., Coleman, B., Jackson, T., et al. (2004). Quality of life as conveyed by paediatric patients with cancer. Quality of Life Research, 13(4), 761–772.PubMedCrossRef
6.
go back to reference Wilson, I. B., & Cleary, P. D. (1995). Linking clinical variables with health-related quality of life. JAMA, 273(1), 59–65.PubMedCrossRef Wilson, I. B., & Cleary, P. D. (1995). Linking clinical variables with health-related quality of life. JAMA, 273(1), 59–65.PubMedCrossRef
7.
8.
go back to reference McGrath, C., Rofail, D., Gargon, E., & Abetz, L. (2010). Using qualitative methods to inform the trade-off between content validity and consistency in utility assessment: the example of type 2 diabetes and Alzheimer’s disease. Health and Quality of Life Outcomes, 8, 23–27.PubMedCrossRef McGrath, C., Rofail, D., Gargon, E., & Abetz, L. (2010). Using qualitative methods to inform the trade-off between content validity and consistency in utility assessment: the example of type 2 diabetes and Alzheimer’s disease. Health and Quality of Life Outcomes, 8, 23–27.PubMedCrossRef
9.
go back to reference Bradley, C. (2001). Importance of differentiating health status from quality of life. Lancet, 357, 7–8.PubMedCrossRef Bradley, C. (2001). Importance of differentiating health status from quality of life. Lancet, 357, 7–8.PubMedCrossRef
10.
go back to reference World Health Organization. (2005). International classification of functioning disability and health: Children and youth. Geneva: WHO. World Health Organization. (2005). International classification of functioning disability and health: Children and youth. Geneva: WHO.
11.
go back to reference World Health Organization. (1998). WHOQOL user manual. Geneva: WHO. World Health Organization. (1998). WHOQOL user manual. Geneva: WHO.
12.
go back to reference Norman, G. R., & Streiner, D. L. (2008). Health measurement scales: A practical guide to their development and use (4th ed.). Oxford: Oxford University Press. Norman, G. R., & Streiner, D. L. (2008). Health measurement scales: A practical guide to their development and use (4th ed.). Oxford: Oxford University Press.
13.
go back to reference Hobart, J. C., Cano, S. J., Zajicek, J. P., & Thompson, A. J. (2007). Rating scales as outcome measures for clinical trials in neurology: Problems, solutions, and recommendations. Lancet Neurology, 6, 1094–1105.PubMedCrossRef Hobart, J. C., Cano, S. J., Zajicek, J. P., & Thompson, A. J. (2007). Rating scales as outcome measures for clinical trials in neurology: Problems, solutions, and recommendations. Lancet Neurology, 6, 1094–1105.PubMedCrossRef
14.
go back to reference Fayed, N., Bickenbach, J. E. & Cieza, A. (2011). Linking health and health-related information to the ICF: A systematic review of the literature from 2001 to 2008. Disability and Rehabilitation (accepted). Fayed, N., Bickenbach, J. E. & Cieza, A. (2011). Linking health and health-related information to the ICF: A systematic review of the literature from 2001 to 2008. Disability and Rehabilitation (accepted).
15.
go back to reference Cieza, A., Brockow, T., Ewert, T., Amman, E., Kollerits, B., Chatterji, S., et al. (2002). Linking health-status measurements to the international classification of functioning, disability and health. Journal of Rehabilitation Medicine, 34(5), 205–210.PubMedCrossRef Cieza, A., Brockow, T., Ewert, T., Amman, E., Kollerits, B., Chatterji, S., et al. (2002). Linking health-status measurements to the international classification of functioning, disability and health. Journal of Rehabilitation Medicine, 34(5), 205–210.PubMedCrossRef
16.
go back to reference Cieza, A., Geyh, S., Chatterji, S., Kostanjsek, N., Ustun, B., & Stucki, G. (2005). ICF linking rules: An update based on lessons learned. Journal of Rehabilitation Medicine, 37(4), 212–218.PubMedCrossRef Cieza, A., Geyh, S., Chatterji, S., Kostanjsek, N., Ustun, B., & Stucki, G. (2005). ICF linking rules: An update based on lessons learned. Journal of Rehabilitation Medicine, 37(4), 212–218.PubMedCrossRef
17.
go back to reference Fayed, N., & Kerr, E. (2009). Comparing quality of life scales in childhood epilepsy: What’s in the measures? International Journal of Disability and Community Rehabilitation, 8(3), 1–11. Fayed, N., & Kerr, E. (2009). Comparing quality of life scales in childhood epilepsy: What’s in the measures? International Journal of Disability and Community Rehabilitation, 8(3), 1–11.
18.
go back to reference Waters, E., Davis, E., Ronen, G., Rosenbaum, P., Livingston, M., & Saigal, S. (2009). Quality of life instruments for children and adolescents with neurodisabilities: How to choose the appropriate instrument. Developmental Medicine and Child Neurology, 51, 660–669.PubMedCrossRef Waters, E., Davis, E., Ronen, G., Rosenbaum, P., Livingston, M., & Saigal, S. (2009). Quality of life instruments for children and adolescents with neurodisabilities: How to choose the appropriate instrument. Developmental Medicine and Child Neurology, 51, 660–669.PubMedCrossRef
19.
go back to reference Clarke, S. A., & Eiser, C. (2004). The measurement of health-related quality of life in paediatric clinical trials: A systematic review. Health and Quality of Life Outcomes, 2(1), 66.PubMedCrossRef Clarke, S. A., & Eiser, C. (2004). The measurement of health-related quality of life in paediatric clinical trials: A systematic review. Health and Quality of Life Outcomes, 2(1), 66.PubMedCrossRef
20.
go back to reference Davis, E., Waters, E., Mackinnon, A., Reddihough, D., Kerr-Graham, H., Mehmet-Radji, O., et al. (2006). Paediatric quality of life instruments: A review of the impact of the conceptual framework on outcomes. Developmental Medicine and Child Neurology, 48(4), 311–318.PubMedCrossRef Davis, E., Waters, E., Mackinnon, A., Reddihough, D., Kerr-Graham, H., Mehmet-Radji, O., et al. (2006). Paediatric quality of life instruments: A review of the impact of the conceptual framework on outcomes. Developmental Medicine and Child Neurology, 48(4), 311–318.PubMedCrossRef
21.
go back to reference De Civita, M., Regier-Evaluat, D., Alamgir, A. H., Aslam, A. H., Fitzgerald, M. J., & Marra, C. A. (2005). Evaluating health-related quality of life studies in paediatric populations: Some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics, 23(7), 659–685.PubMedCrossRef De Civita, M., Regier-Evaluat, D., Alamgir, A. H., Aslam, A. H., Fitzgerald, M. J., & Marra, C. A. (2005). Evaluating health-related quality of life studies in paediatric populations: Some conceptual, methodological and developmental considerations and recent applications. Pharmacoeconomics, 23(7), 659–685.PubMedCrossRef
22.
go back to reference Eiser, C., & Morse, R. (2001). A review of measures of quality of life for children with chronic illness. Archives of the Disabled Child, 84, 205–211.CrossRef Eiser, C., & Morse, R. (2001). A review of measures of quality of life for children with chronic illness. Archives of the Disabled Child, 84, 205–211.CrossRef
23.
go back to reference Harding, L. (2001). Children’s quality of life assessments: A review of generic and health related quality of life measures completed by children and adolescents. Clinical Psycholology & Psychotherapy, 8, 79–96.CrossRef Harding, L. (2001). Children’s quality of life assessments: A review of generic and health related quality of life measures completed by children and adolescents. Clinical Psycholology & Psychotherapy, 8, 79–96.CrossRef
24.
go back to reference Rajmil, L., Herdman, M., Fernandez de Sanmamed, M. J., Detmar, S., Bruil, J., Ravens-Sieberer, U., et al. (2004). Generic health-related quality of life instruments in children and adolescents: A qualitative analysis of content. Journal of Adolescent Health, 34(1), 37–45.PubMedCrossRef Rajmil, L., Herdman, M., Fernandez de Sanmamed, M. J., Detmar, S., Bruil, J., Ravens-Sieberer, U., et al. (2004). Generic health-related quality of life instruments in children and adolescents: A qualitative analysis of content. Journal of Adolescent Health, 34(1), 37–45.PubMedCrossRef
25.
go back to reference Ravens-Sieberer, U., Erhart, M., & Wille, N. (2006). Generic health-related quality of life assessment in children and adolescents: Methodological considerations. Pharmacoeconomics, 24(12), 1199–1220.PubMedCrossRef Ravens-Sieberer, U., Erhart, M., & Wille, N. (2006). Generic health-related quality of life assessment in children and adolescents: Methodological considerations. Pharmacoeconomics, 24(12), 1199–1220.PubMedCrossRef
26.
go back to reference Matza, L. S., Swensen, A. R., Flood, E. M., et al. (2004). Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issues. Value in Health, 7, 79–92.PubMedCrossRef Matza, L. S., Swensen, A. R., Flood, E. M., et al. (2004). Assessment of health-related quality of life in children: A review of conceptual, methodological, and regulatory issues. Value in Health, 7, 79–92.PubMedCrossRef
27.
go back to reference Solans, M., Pane, S., Estrada, M. D., Serra-Sutton, V., Berra, B., Herdman, M., et al. (2008). Health-related quality of life measurement in children and adolescents: A systematic review of generic and disease-specific instruments. Value in Health, 11(4), 742–764.PubMedCrossRef Solans, M., Pane, S., Estrada, M. D., Serra-Sutton, V., Berra, B., Herdman, M., et al. (2008). Health-related quality of life measurement in children and adolescents: A systematic review of generic and disease-specific instruments. Value in Health, 11(4), 742–764.PubMedCrossRef
28.
go back to reference Klassen, A. F., Strohm, S. J., Maurice-Stam, H., & Grootenhuis, M. (2009). Quality of life questionnaires for children and childhood cancer survivors: A comparison of available measures. Supportive Care in Cancer, 18(9), 1207–1217.PubMedCrossRef Klassen, A. F., Strohm, S. J., Maurice-Stam, H., & Grootenhuis, M. (2009). Quality of life questionnaires for children and childhood cancer survivors: A comparison of available measures. Supportive Care in Cancer, 18(9), 1207–1217.PubMedCrossRef
29.
go back to reference Pickard, A. S., Topfer, L., & Feeney, D. H. (2004). A structured review of studies of health-related quality of life and economic evaluation in paediatric acute lymphoblastic leukemia. Journal of Natl Cancer Inst Monographs, 33, 102–124.CrossRef Pickard, A. S., Topfer, L., & Feeney, D. H. (2004). A structured review of studies of health-related quality of life and economic evaluation in paediatric acute lymphoblastic leukemia. Journal of Natl Cancer Inst Monographs, 33, 102–124.CrossRef
30.
go back to reference Landgraf, J. M., Abetz, L., & Ware, J. E. (1996). Child health questionnaire (CHQ): A user’s manual. Boston: The Health Institute, New England Medical. Landgraf, J. M., Abetz, L., & Ware, J. E. (1996). Child health questionnaire (CHQ): A user’s manual. Boston: The Health Institute, New England Medical.
31.
go back to reference Varni, J. W., Seid, M., & Rhode, C. A. (1999). The PedsQL™: Measurement model for the paediatric quality of life inventory. Medical Care, 37(2), 126–139.PubMedCrossRef Varni, J. W., Seid, M., & Rhode, C. A. (1999). The PedsQL: Measurement model for the paediatric quality of life inventory. Medical Care, 37(2), 126–139.PubMedCrossRef
32.
go back to reference Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0™: Reliability and validity of the paediatric quality of life inventory version 4.0™ generic core scales in healthy and patient population. Medical Care, 39(8), 800–812.PubMedCrossRef Varni, J. W., Seid, M., & Kurtin, P. S. (2001). PedsQL 4.0™: Reliability and validity of the paediatric quality of life inventory version 4.0 generic core scales in healthy and patient population. Medical Care, 39(8), 800–812.PubMedCrossRef
33.
go back to reference Furlong, W., Boyle, M., & Torrance, G. W. (1995). Multi-attribute health status classification systems. Health utilities index. Pharmacoeconomics, 7(6), 490–502.PubMedCrossRef Furlong, W., Boyle, M., & Torrance, G. W. (1995). Multi-attribute health status classification systems. Health utilities index. Pharmacoeconomics, 7(6), 490–502.PubMedCrossRef
34.
go back to reference Feeny, D. H., Torrance, G., & Furlong, W. (1996). In B. Spilker (Ed.), Health Utilities Index in quality of life and pharmacoeconomics in clinical trials, 2nd ed. Philadelphia: Lippincott-Raven. Feeny, D. H., Torrance, G., & Furlong, W. (1996). In B. Spilker (Ed.), Health Utilities Index in quality of life and pharmacoeconomics in clinical trials, 2nd ed. Philadelphia: Lippincott-Raven.
35.
go back to reference Bhatia, S., Jenney, M. E. M., Bogue, M. K., Rockwood, T. H., Feusner, J. H., Friedman, D. L., et al. (2002). The minneapolis-manchester quality of life instrument: Reliability and validity of the adolescent form. Journal of Clinical Oncology, 20, 4692–4698.PubMedCrossRef Bhatia, S., Jenney, M. E. M., Bogue, M. K., Rockwood, T. H., Feusner, J. H., Friedman, D. L., et al. (2002). The minneapolis-manchester quality of life instrument: Reliability and validity of the adolescent form. Journal of Clinical Oncology, 20, 4692–4698.PubMedCrossRef
36.
go back to reference Bhatia, S., Jenney, M. E. M., Wu, E., Bogue, M. K., Rockwood, T. H., Feusner, J. H., et al. (2004). The Minneapolis-Manchester quality of life instrument: Reliability and validity of the youth form. Journal of Clinical Oncology, 145, 39–46. Bhatia, S., Jenney, M. E. M., Wu, E., Bogue, M. K., Rockwood, T. H., Feusner, J. H., et al. (2004). The Minneapolis-Manchester quality of life instrument: Reliability and validity of the youth form. Journal of Clinical Oncology, 145, 39–46.
37.
go back to reference Varni, J. W., Katz, E. R., Seid, M., Quiggin, D. J. L., Friedman-Bender, A., & Castro, C. M. (1998). The paediatric cancer quality of life inventory (PCQL): Instrument development‚ descriptive statistics‚ and cross-informant variance. Journal of Behavioral Medicine, 21(2), 179–204.PubMedCrossRef Varni, J. W., Katz, E. R., Seid, M., Quiggin, D. J. L., Friedman-Bender, A., & Castro, C. M. (1998). The paediatric cancer quality of life inventory (PCQL): Instrument development‚ descriptive statistics‚ and cross-informant variance. Journal of Behavioral Medicine, 21(2), 179–204.PubMedCrossRef
38.
go back to reference Goodwin, D. A. J., Boggs, S. R., & Graham-Pole, J. (1994). Development and validation of the paediatric oncology quality of life scale. Psychological Assessment, 6(4), 321–328.CrossRef Goodwin, D. A. J., Boggs, S. R., & Graham-Pole, J. (1994). Development and validation of the paediatric oncology quality of life scale. Psychological Assessment, 6(4), 321–328.CrossRef
39.
go back to reference Sandelowski, M. (2000). What ever happened to qualitative description? Research in Nursing and Health, 23, 334–340.PubMedCrossRef Sandelowski, M. (2000). What ever happened to qualitative description? Research in Nursing and Health, 23, 334–340.PubMedCrossRef
40.
go back to reference Grill, E., Mansmann, U., Cieza, A., & Stucki, G. (2007). Assessing observer agreement when describing and classifying functioning with the international classification of functioning, disability and health. Journal of Rehabilitation Medicine, 39(1), 71–76.PubMedCrossRef Grill, E., Mansmann, U., Cieza, A., & Stucki, G. (2007). Assessing observer agreement when describing and classifying functioning with the international classification of functioning, disability and health. Journal of Rehabilitation Medicine, 39(1), 71–76.PubMedCrossRef
41.
go back to reference Woodgate, R. L., Degner, L. F., & Yanofsky, R. (2003). A different perspective to approaching cancer symptoms in children. Journal of Pain and Symptom Management, 26(3), 800–817.PubMedCrossRef Woodgate, R. L., Degner, L. F., & Yanofsky, R. (2003). A different perspective to approaching cancer symptoms in children. Journal of Pain and Symptom Management, 26(3), 800–817.PubMedCrossRef
42.
go back to reference Heritage, J. (2002). The limits of questioning: negative interrogatives and hostile question content. Journal of Pragmatics, 34(10–11), 1427–1446.CrossRef Heritage, J. (2002). The limits of questioning: negative interrogatives and hostile question content. Journal of Pragmatics, 34(10–11), 1427–1446.CrossRef
43.
go back to reference Swartz, N. (1999). How the questions shape the answers. American Psychologist, 44(2), 93–105. Swartz, N. (1999). How the questions shape the answers. American Psychologist, 44(2), 93–105.
44.
go back to reference van Achterberg, T., Holleman, G., Heijnen-Kaales, Y., van-der-Brug, Y., Roodbol, G., Stallinga-Hillegonda, A., et al. (2005). Using a multidisciplinary classification in nursing: The international classification of functioning disability and health. Journal of Advanced Nursing, 49(4), 432–441.PubMedCrossRef van Achterberg, T., Holleman, G., Heijnen-Kaales, Y., van-der-Brug, Y., Roodbol, G., Stallinga-Hillegonda, A., et al. (2005). Using a multidisciplinary classification in nursing: The international classification of functioning disability and health. Journal of Advanced Nursing, 49(4), 432–441.PubMedCrossRef
45.
go back to reference Soberg, H. L., Sandvik, L., & Ostensjo, S. (2008). Reliability and applicability of the ICF in coding problems, resources and goals of persons with multiple injuries. Disability and Rehabilitation, 30(2), 98–106.PubMedCrossRef Soberg, H. L., Sandvik, L., & Ostensjo, S. (2008). Reliability and applicability of the ICF in coding problems, resources and goals of persons with multiple injuries. Disability and Rehabilitation, 30(2), 98–106.PubMedCrossRef
Metagegevens
Titel
Health status and QOL instruments used in childhood cancer research: deciphering conceptual content using World Health Organization definitions
Auteurs
Nora Fayed
Vero Schiariti
Cristina Bostan
Alarcos Cieza
Anne Klassen
Publicatiedatum
01-10-2011
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 8/2011
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-011-9851-5

Andere artikelen Uitgave 8/2011

Quality of Life Research 8/2011 Naar de uitgave