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Measuring the health-related quality of life (HRQoL) of young children in resource-limited settings: a review of existing measures

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Abstract

Purpose

This review sought to identify and summarize the instruments adapted or developed for measuring HRQoL among young children (<8 years) living in resource-limited settings.

Methods

A review of the literature was conducted in two phases. Phase one searched the PubMed, PsycInfo, Web of Knowledge (Web of Science), African Index Medicus, and SocINDEX databases and identified widely used child HRQoL instruments. Phase two reviewed the articles using the selected HRQoL instruments and extracted information on their use in resource-limited settings including adaption processes.

Results

Seven instruments were identified that measured the HRQoL of young children. Six had been used in resource-limited settings. Of the 452 articles using these instruments, a total of 23 (5 %) studies used one of the identified HRQoL instruments in a resource-limited setting. Among these studies, 39 % employed an adaptation process for the use of that instrument. No instruments had been developed specifically for measuring the HRQoL of young children in resource-limited settings.

Conclusions

If pediatric HRQoL instruments are to be used in resource-limited settings, it is critical that they be developed and adequately adapted to those settings. Only then will interventions lead to larger increases in the overall HRQoL and well-being of children.

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Abbreviations

CHIP-CE:

Child Health and Illness Profile-Child Edition

CHQ:

Child Health Questionnaire

HRQoL:

Health-related Quality of Life

PedsQL:

Pediatric Quality of Life Inventory

ITQoL:

Infant Toddler Quality of Life

TNO-AZL:

The Netherlands Organization for Applied Scientific Research Academic Medical Center

TAPQoL:

TNO-AZL Preschool Quality of Life

TACQoL:

TNO-AZL Child Quality of Life

References

  1. World Health Organization. (2011). World Health Statistics: 2011. http://www.who.int/whosis/whostat/EN_WHS2011_Full.pdf. Accessed 20 August 2012.

  2. Bullinger, M., Anderson, R., Cella, D., & Aaronson, N. (1993). Developing and evaluating cross-cultural instruments from minimum requirements to optimal models. Quality of Life Research, 2(6), 451–459.

    Article  PubMed  CAS  Google Scholar 

  3. World Health Organization. (1948). Preamble to the Constitution of the World Health Organization as adopted by the international health conference. New York, 19–22 June, 1946; signed on 22 July 1946 by the representatives of 61 States (Official Records of the World Health Organization, no. 2, p. 100) and entered into force on 7 April 1948. http://www.who.int/governance/eb/who_constitution_en.pdf. Accessed 20 August 2012.

  4. World Health Organization. (2008). The global burden of disease: 2004 Update. http://www.who.int/healthinfo/global_burden_disease/GBD_report_2004update_full.pdf. Accessed 20 August 2012.

  5. Irwin, L. G., Siddiqi, A., & Hertmann, C. (2007). Early child development: A powerful equalizer. World Health Organization. http://www.who.int/social_determinants/resources/ecd_kn_report_07_2007.pdf. Accessed 20 August 2012.

  6. Eiser, C., Mohay, H., & Morse, R. (2000). The measurement of quality of life in young children. Child: Care, Health and Development, 26(5), 401–414.

    Article  CAS  Google Scholar 

  7. United Nations. (2012). The millennium development goals report 2012. United Nations, New York. http://mdgs.un.org/unsd/mdg/Resources/Static/Products/Progress2012/English2012.pdf. Accessed 20 August 2012.

  8. Banerjee, A., & Duflo, E. (2007). The economic lives of the poor. Journal of Economic Perspectives, 21(1), 141–167.

    Article  PubMed  Google Scholar 

  9. Rodrigue, J., Geffken, G., & Streisand, R. (1999). Child health assessment: A handbook of measurement techniques (1st ed.). Needham Heights, MA: Allyn & Bacon.

    Google Scholar 

  10. 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 Psychology & Psychotherapy, 8(2), 79–96.

    Article  Google Scholar 

  11. Schmidt, L. J., Garratt, A. M., & Fitzpatrick, R. (2002). Child/parent-assessed population health outcome measures: A structured review. Child: Care, Health and Development, 28(3), 227–237.

    Article  CAS  Google Scholar 

  12. Ravens-Sieberer, U., Erhart, M., Wille, N., Wetzel, R., Nickel, J., & Bullinger, M. (2006). Generic health-related quality-of-life assessment of children and adolescents: Methodological considerations. PharmacoEconomics, 24(12), 1199–1220.

    Article  PubMed  Google Scholar 

  13. Solans, M., Pane, S., Estrada, M. D., Serra-Sutton, V., Berra, S., 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.

    Article  PubMed  Google Scholar 

  14. Garvie, P. A., Lawford, J., Banet, M. S., & West, R. L. (2009). Quality of life measurement in paediatric and adolescent populations with HIV: A review of the literature. Child: Care, Health and Development, 35(4), 440–453.

    Article  CAS  Google Scholar 

  15. Davis, E., Waters, E., Mackinnon, A., Reddihough, D., Graham, H. K., 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.

    Article  PubMed  Google Scholar 

  16. Rajmil, L., Herdman, M., Fernandez de Sanmamed, M., 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.

    Article  PubMed  Google Scholar 

  17. Eiser, C., & Morse, R. (2001). A review of measures of quality of life for children with chronic illness. Archives of Disease in Childhood, 84(3), 205–211.

    Article  PubMed  CAS  Google Scholar 

  18. Wallander, J. L., Schmitt, M., & Koot, H. M. (2001). Quality of life measurement in children and adolescents: Issues, instruments, and applications. Journal of Clinical Psychology, 57(4), 571–585.

    Article  PubMed  CAS  Google Scholar 

  19. Connolly, M. A., & Johnson, J. A. (1999). Measuring quality of life in paediatric patients. PharmacoEconomics, 16(6), 605–625.

    Article  PubMed  CAS  Google Scholar 

  20. Titman, P., Smith, M., & Graham, P. (1997). Assessment of the quality of life of children. Clinical Child Psychology and Psychiatry, 2(4), 597–606.

    Article  Google Scholar 

  21. Varni, J., Seid, M., & Kurtin, P. (1999). Pediatric health-related quality of life measurement technology: A guide for health care decision makers. Journal of Clinical Outcomes Management, 6(4), 33–40.

    Google Scholar 

  22. Landgraf, J., & Abetz, L. (1996). Chapter 83: Measuring health outcomes in pediatric populations: Issues in psychometrics and application. In B. Spiker (Ed.), Quality of life and PharmacoEconomics in clinical trials (2nd ed., pp. 793–802). Philadelphia: Lippencott-Raven Publishers.

    Google Scholar 

  23. Spieth, L. E., & Harris, C. V. (1996). Assessment of health-related quality of life in children and adolescents: An integrative review. Journal of Pediatric Psychology, 21(2), 175–193.

    Article  PubMed  CAS  Google Scholar 

  24. Jordan, T. (1993). Estimating the quality of life for children around the world NICQL’92. Social Indicators Research, 30(1), 17–38.

    Article  Google Scholar 

  25. Gladstone, M., Lancaster, G., Umar, E., Nyirenda, M., Kayira, E., van den Broek, N., et al. (2010). Perspectives of normal child development in rural Malawi—A qualitative analysis to create a more culturally appropriate developmental assessment tool. Child: Care, Health and Development, 36(3), 346–353.

    Article  CAS  Google Scholar 

  26. Gladstone, M. J., Lancaster, G. A., Jones, A. P., Maleta, K., Mtitimila, E., Ashorn, P., et al. (2008). Can Western developmental screening tools be modified for use in a rural Malawian setting? Archives of Disease in Childhood, 93(1), 23–29.

    Article  PubMed  CAS  Google Scholar 

  27. De Civita, M., Regier, D., Alamgir, A. H., Anis, 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.

    Article  PubMed  Google Scholar 

  28. Kambalametore, S., Hartley, S., & Landsdown, R. (2000). An exploration of the Malawian perspective on children’s everyday skills: Implications for assessment. Disability and Rehabilitation, 22(17), 02–807.

    Google Scholar 

  29. Fox-Rushby, J., Mwenesi, H., Parker, M., Amuyunzu, M., Egesah, O., Johnson, K., et al. (1995). Questioning premises: Health-related quality of life in Kenya. Quality of Life Research, 4(5), 428–429. doi:10.1007/BF00518459.

    Google Scholar 

  30. Barnes, L. L., Plotnikoff, G. A., Fox, K., & Pendleton, S. (2000). Spirituality, religion, and pediatrics: Intersecting worlds of healing. Pediatrics, 106(Suppl 4), 899–908.

    PubMed  CAS  Google Scholar 

  31. Herdman, M., Fox-Rushby, J., & Badia, X. (1998). A model of equivalence in the cultural adaptation of HRQoL instruments: The Universalist approach. Quality of Life Research, 7(4), 323–335.

    Article  PubMed  CAS  Google Scholar 

  32. Bevans, K. B., Riley, A. W., Moon, J., & Forrest, C. B. (2010). Conceptual and methodological advances in child-reported outcomes measurement. Expert Review of PharmacoEconomics and Outcomes Research, 10(4), 385–396.

    Article  PubMed  Google Scholar 

  33. White, H., Leavy, J., & Masters, A. (1977). Comparative perspectives on child poverty: A review of poverty measures. Journal of Human Development, 4(3), 379–396.

    Article  Google Scholar 

  34. Bronfrenbrenner, U. (1977). Toward an experimental ecology of human development. American Psychologist, 32, 513–531.

    Article  Google Scholar 

  35. Riley, A. W., Forrest, C. B., Rebok, G. W., Starfield, B., Green, B. F., Robertson, J. A., et al. (2004). The child report form of the CHIP-child edition. Medical Care, 42(3), 221–231.

    Article  PubMed  Google Scholar 

  36. Riley, A. W., Forrest, C. B., Starfield, B., Rebok, G. W., Robertson, J. A., & Green, B. F. (2004). The parent report form of the CHIP-child edition: Reliability and validity. Medical Care, 42(3), 210–220.

    Google Scholar 

  37. Starfield, B., Riley, A., Green, B., Ensminger, M., Ryan, S., Kelleher, K., et al. (1995). The adolescent child health and illness profile: A population-based measure of health. Medical Care, 33(5), 553–566.

    Article  PubMed  CAS  Google Scholar 

  38. Landgraf, J. M., & Abetz, L. N. (1997). Functional status and well-being of children representing three cultural groups: Initial self-reports using the chq-cf87. Psychology & Health, 12(6), 839–854.

    Article  Google Scholar 

  39. Landgraf, J. M., Maunsell, E., Speechley, K. N., Bullinger, M., Campbell, S., Abetz, L., et al. (1998). Canadian-French, German and UK versions of the Child Health Questionnaire: Methodology and preliminary item scaling results. Quality of Life Research, 7(5), 433–445.

    Article  PubMed  CAS  Google Scholar 

  40. Ruperto, N., Ravelli, A., Pistorio, A., Malattia, C., Cavuto, S., Gado-West, L., et al. (2001). Cross-cultural adaptation and psychometric evaluation of the Childhood Health Assessment Questionnaire (CHAQ) and the Child Health Questionnaire (CHQ) in 32 countries. Review of the general methodology. Clinical and Experimental Rheumatology, 19(4 Suppl 23), S1–S9.

    PubMed  CAS  Google Scholar 

  41. Raat, H., Landgraf, J. M., Oostenbrink, R., Moll, H. A., & Essink-Bot, M.-L. (2007). Reliability and validity of the Infant and Toddler Quality of Life Questionnaire (ITQOL) in a general population and respiratory disease sample. Quality of Life Research, 16(3), 445–460.

    Article  PubMed  Google Scholar 

  42. Klassen, A. F., Landgraf, J. M., Lee, S. K., Barer, M., Raina, P., Chan, H. W. P., et al. (2003). Health related quality of life in 3 and 4 year old children and their parents: Preliminary findings about a new questionnaire. Health and Quality of Life Outcomes, 1, 81.

    Article  PubMed  Google Scholar 

  43. Ravens-Sieberer, U., & Bullinger, M. (1998). Assessing health-related quality of life in chronically ill children with the German KINDL: First psychometric and content analytical results. Quality of Life Research, 7(5), 399–407.

    Article  PubMed  CAS  Google Scholar 

  44. Wee, H. L., Lee, W. W. R., Ravens-Sieberer, U., Erhart, M., & Li, S. C. (2005). Validation of the English version of the KINDL® generic children’s health-related quality of life instrument for an Asian population—Results from a pilot test. Quality of Life Research, 14(4), 1193–1200.

    Article  PubMed  CAS  Google Scholar 

  45. Erhart, M., Ellert, U., Kurth, B. M., & Ravens-Sieberer, U. (2009). Measuring adolescents’ HRQoL via self-reports and parent proxy reports: An evaluation of the psychometric properties of both versions of the KINDL-R instrument. Health and Quality of Life Outcomes, 7, 77.

    Article  PubMed  Google Scholar 

  46. Varni, J., Seid, M., & Kurtin, P. (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. Medical Care, 39(8), 800–812.

    Article  PubMed  CAS  Google Scholar 

  47. Massad, S. G., Nieto, F. J., Palta, M., Smith, M., Clark, R., & Thabet, A.-A. (2011). Health-related quality of life of Palestinian preschoolers in the Gaza Strip: A cross-sectional study. BMC Public Health, 11, 253.

    Article  PubMed  Google Scholar 

  48. Roizen, M., Rodríguez, S., Bauer, G., Medin, G., Bevilacqua, S., Varni, J. W., et al. (2008). Initial validation of the Argentinean Spanish version of the PedsQL 4.0 generic core scales in children and adolescents with chronic diseases: Acceptability and comprehensibility in low-income settings. Health and Quality of Life Outcomes, 6, 59.

    Article  PubMed  Google Scholar 

  49. Verrips, E. G., Vogels, T. G., Koopman, H. M., Theunissen, N. C., Kamphuis, R., Fekkes, M., et al. (1999). Measuring health-related quality of life in a child population. The European Journal of Public Health, 9(3), 188–193.

    Article  Google Scholar 

  50. Soori, H. (2004). Measuring health-related quality of life among primary school children in Ahwaz, Iran. The Journal of Primary Prevention, 25(1), 125–132.

    Article  Google Scholar 

  51. Bunge, E. M., Essink-Bot, M-L., Kobussen, M. P. H. M., van Suijlekom-Smit, L. W. A., Moll, H. A., & Raat, H. (2005). Reliability and validity of health status measurement by the TAPQOL. Archives of Disease in Childhood, 90(4), 351–358.

    Google Scholar 

  52. Fekkes, M., Theunissen, N. C. M., Brugman, E., Veen, S., Verrips, E. G. H., Koopman, H. M., et al. (2000). Development and psychometric evaluation of the TAPQOL: A health-related quality of life instrument for 1–5 year-old children. Quality of Life Research, 9(8), 961–972.

    Article  PubMed  CAS  Google Scholar 

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Acknowledgments

This research was carried out through the FACES (Families and Children Everywhere Deserve Support) Initiative of the University of Wisconsin-Madison Global Health Institute, with supporting grants from the Wisconsin Partnership Program of the University of Wisconsin School of Medicine and Public Health and the University of Wisconsin Division of International Studies. We would also like to thank the members of the Life Course Epidemiology and Family Health (LEAF) Lab, Department of Population Health Sciences at the School Medicine and Public Health, University of Wisconsin–Madison for their comments on the drafts of the paper.

Conflict of interest

None of the authors has a conflict of interest with this research.

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  1. Department of Population Health Sciences, School of Medicine and Public Health, University of Wisconsin–Madison, 610 North Walnut Street, Office 503, Madison, WI, 53726, USA

    Jason Paltzer, Emily Barker & Whitney P. Witt

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  1. Jason Paltzer
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Correspondence to Whitney P. Witt.

Appendix: Young child health-related quality of life instrument descriptions

Appendix: Young child health-related quality of life instrument descriptions

Child Health and Illness Profile-Child Edition

The Child Health and Illness Profile-Child Edition (CHIP-CE) includes forms for both child- and parent-report covering five domains: satisfaction with self and health, emotional and physical comfort, resilience, risk avoidance, and achievement [35]. The series of CHIP instruments (adolescent and child versions) is theoretically based on the integration of self-perceived concepts of health, comforts, physical limitations, current health status, social achievement, and environment and behavioral characteristics known to influence health [37]. The instrument was developed using cognitive interviewing among elementary students and has been validated among low-to-middle socioeconomic groups as well as various racial/ethnic groups in the United States and Europe [35]. The CHIP-CE has also been translated into several European and Asian languages including Arabic, Chinese, Taiwanese, and Russian (www.childhealthprofile.org accessed October 7th, 2011). A key strength of the CHIP-CE is its foundation on the same theoretical model as the CHIP-AE (adolescent ages 12–18) allowing for comparable self-reported health from age 6 to 18 (CE = 6–11 years and AE = 12–18 years). The CHIP-CE has been found to have acceptable psychometric properties with a Cronbach’s α of 0.70–0.82 and an intraclass coefficient (ICC) of 0.63–0.76. The CHIP-CE has moderate-to-high criterion validity and as well as adequate construct and convergent validity [35, 36].

Child Health Questionnaire-PF50

The Child Health Questionnaire-Parent Form 50 (CHQ-PF50) is a shortened form of the original 98-item questionnaire. A child version also exists comprised of 87 items [38]. The domains covered in the CHQ-PF50 are divided into child- and family-related HRQoL concepts. Direct child-related concepts include physical functioning, bodily pain, school-related and social limitations due to physical health, school-related and social limitations due to emotional or behavioral difficulties, mental health, general health perceptions, health status changes, and self-esteem [39]. Family-related concepts include limitations in personal time due to the child’s health, limitations in family activities, and family cohesion. The instrument has been used broadly in over 50 languages including numerous Asian and African languages (http://www.healthact.com/translation-chq.php; accessed December 27th, 2011) [40]. The CHQ-PF50 has been found to have acceptable psychometric properties as demonstrated by an internal consistency, measured by Cronbach’s α, of 0.59–0.93 [39].

Infant Toddler Quality of Life Questionnaire

The Infant Toddler Quality of Life Questionnaire (ITQoL) was developed for children ages 0–5 years and contains 12 scales to obtain a health profile measure of child HRQoL [41, 42]. The instrument is one of the longer instruments (103 items) and its domains cover physical functioning, temperament and moods, social functioning, general health perceptions, and the impact of child health on parents’ time and family cohesion. It has been translated into simplified Chinese, Spanish, Dutch, and Norwegian (http://www.healthact.com/translation-chq.php; accessed December 27th, 2011). The ITQoL has adequate internal reliability with α ranging between 0.72 and 0.94 [41]. The instrument showed moderate concurrent and discriminative validity.

KINDL

The KINDL questionnaire comes in four versions: 4–7 years (Kiddy), 8–12 years (Kid), 13–16 years (Kiddo), and parents (proxy report) (www.kindl.org accessed October 10th, 2011). The questionnaire consists of 24 items and is based on a theoretical model involving dimensions of physical, psychological, social, family, and school functioning [43]. The instrument has been adapted among diverse populations in Western and Asian countries and includes a computer animated version [44]. Cronbach’s α for the KINDL ranged between 0.90 and 0.95 and showed adequate construct and convergent validity [43, 45].

PedsQL 4.0

The Pediatric Quality of Life Inventory (PedsQL) 4.0 is a 23-item instrument and was developed as a generic health-related quality of life measure for children. The PedsQL 4.0 theoretically divides the concept of HRQoL into four domains: physical, social, emotional, and school functioning [46]. Focus groups and cognitive interviewing were used to generate the items in the instrument, which has since been using diverse low-income populations in South America, Africa, the Middle East, and Asia [47, 48]. The PedsQL 4.0 involves forms for measuring parent proxy report for children aged 2–18 years and child self-report for children aged 5–18 years. Cronbach’s α for the PedsQL 4.0 total score ranged between 0.85 and 0.90 with similar total scores for both the child and parent forms (0.88 and 0.90, respectively) [46].

TNO-AZL Child Quality of Life

The TNO-AZL (Netherlands Organization of Applied Scientific Research Academic Medical Center) Child Quality of Life questionnaire (TACQoL) is a generic measurement of HRQoL based on the theoretical concept that quality of life is the result of a certain health status and the child’s emotional response to health-related problems [49]. It was developed to measure the HRQoL of children aged 5–15 years and consists of both a child (8–15 years) and parent (5–11 years) questionnaire each containing 56 items [49]. The instrument has been validated among low-income children in Iran [50]. A unique aspect of the instrument is its potential to differentiate between the child’s functioning and his/her affective response to problems associated with functioning. The TACQoL covers seven domains including physical functioning, social functioning, daily living, and psychological functioning. Cronbach’s α for the TACQoL ranged between 0.65 and 0.84 [49].

TNO-AZL Preschool Children Quality of Life

The TNO-AZL (Netherlands Organization of Applied Scientific Research Academic Medical Center) Preschool Children Quality of Life (TAPQoL) is based on the same theoretical framework as the TNO-AZL child instrument and is one of the first multi-dimensional instruments developed to assess HRQoL in preschool and infant children, aged 0–5 years [51]. The instrument used a proxy to answer the 43-item questionnaire covering physical, social, cognitive, and emotional functioning domains. The TAPQoL Cronbach’s α ranged from 0.66 to 0.88 for pre-term children and 0.43–0.84 for the general population and showed adequate concurrent and discriminative validity [52].

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Paltzer, J., Barker, E. & Witt, W.P. Measuring the health-related quality of life (HRQoL) of young children in resource-limited settings: a review of existing measures. Qual Life Res 22, 1177–1187 (2013). https://doi.org/10.1007/s11136-012-0260-1

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