SpringerLink
Log in

Anxiety and worry when co** with cancer treatment: agreement between patient and proxy responses

  • Published:
Quality of Life Research Aims and scope Submit manuscript

Abstract

Purpose

Assess agreement between proxy respondents (caregivers) and children/adolescents related to the impact of cancer on children’s/adolescents’ health-related quality of life, with respect to anxiety and worry issues.

Methods

A cross-sectional study was conducted among 83 Brazilian children/adolescents, of both genders, diagnosed with cancer, aged 5–18 years and their proxy respondents. Anxiety and worry were assessed through items of the instrument Pediatric Quality of Life Inventory™ Cancer Module Scale. Participants were recruited from the pediatric hematology/oncology centers at two public hospitals. All individuals were receiving medical care. Descriptive statistics were performed as well as a weighted kappa coefficient, Spearman’s correlation coefficient, Wilcoxon signed-rank test and Bland–Altman plots. The magnitude of the difference between the mean scores obtained from children/adolescents and that of their proxy respondents was evaluated through effect size.

Results

The proxy respondents underestimated the feelings of worry among children (8–12 years) (p < 0.001; effect size 0.71) and overestimated adolescents’ (13–18 years) treatment anxiety (p < 0.05; effect size 0.57). The comparison between the three age groups (5–7, 8–12, 13–18 years) showed a tendency for children/adolescents to report increasing feelings of worry as they got older. In the ‘treatment anxiety’ subscale, there was a tendency for proxy respondents to present higher mean scores, revealing that proxy respondents believed the children’s/adolescents’ treatment anxiety decreased as they aged.

Conclusions

Discrepancies between the reports of children/adolescents and their proxy respondents were observed. Children’s/adolescents’ reports should not be ignored nor replaced by proxy reports; both reports should be analyzed together.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Log in via an institution

Subscribe and save

Springer+ Basic
EUR 32.99 /Month
  • Get 10 units per month
  • Download Article/Chapter or Ebook
  • 1 Unit = 1 Article or 1 Chapter
  • Cancel anytime
Subscribe now

Buy Now

Price includes VAT (Germany)

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1

Similar content being viewed by others

References

  1. Rodriguez-Galindo, C., Friedrich, P., Morrissey, L., & Frazier, L. (2013). Global challenges in pediatric oncology. Current Opinion in Pediatrics, 25(1), 3–15.

    Article  PubMed  Google Scholar 

  2. Mavrides, N., & Pao, M. (2014). Updates in paediatric psycho-oncology. International Review of Psychiatry, 26(1), 63–73.

    Article  PubMed  Google Scholar 

  3. http://www.inca.gov.br/estimativa/2014/sintese-de-resultados-comentarios.asp. Accessed 20 Oct 2014.

  4. de Camargo, B., de Oliveira, S. M., Rebelo, M. S., de Souza, R. R., Ferman, S., Noronha, C. P., et al. (2010). Cancer incidence among children and adolescents in Brazil: First report of 14 population-based cancer registries. International Journal of Cancer, 126(3), 715–720.

    Article  Google Scholar 

  5. Kaatsch, P. (2010). Epidemiology of childhood cancer. Cancer Treatment Reviews, 36(4), 277–285.

    Article  PubMed  Google Scholar 

  6. Varni, J. W., Katz, E. R., Seid, M., Quiggins, D. J., & Friedman-Bender, A. (1998). The pediatric cancer quality of life inventory-32 (PCQL-32): I. Reliability and validity. Cancer, 82(6), 1184–1196.

    Article  CAS  PubMed  Google Scholar 

  7. Mulhern, R. K., & Palmer, S. L. (2003). Neurocognitive late effects in pediatric cancer. Current Problems in Cancer, 27(4), 177–197.

    Article  PubMed  Google Scholar 

  8. Sattoe, J. N., van Staa, A., & Moll, H. A. (2012). The proxy problem anatomized: Child–parent disagreement in health related quality of life reports of chronically ill adolescents. Health and Quality of Life Outcomes, 10, 10.

    Article  PubMed Central  PubMed  Google Scholar 

  9. Eiser, C., & Morse, R. (2001). Can parents rate their child’s health-related quality of life? Results of a systematic review. Quality of Life Research, 10(4), 347–357.

    Article  CAS  PubMed  Google Scholar 

  10. Theunissen, N. C., Vogels, T. G., Koopman, H. M., Verrips, G. H., Zwinderman, K. A., Verloove-Vanhorick, S. P., et al. (1998). The proxy problem: Child report versus parent report in health-related quality of life research. Quality of Life Research, 7(5), 387–397.

    Article  CAS  PubMed  Google Scholar 

  11. Ravelli, A., Viola, S., Migliavacca, D., Pistorio, A., Ruperto, N., & Martini, A. (2001). Discordance between proxy-reported and observed assessment of functional ability of children with juvenile idiopathic arthritis. Rheumatology (Oxford), 40(8), 914–919.

    Article  CAS  Google Scholar 

  12. Taylor, R. M., Grieve, A., Gibson, F., Dhawan, A., & Franck, L. S. (2011). Parental assessment of adolescent quality of life: Can it replace self-assessment? Quality of Life Research, 20(10), 1715–1720.

    Article  PubMed  Google Scholar 

  13. Eiser, C., & Jenney, M. E. (1996). Measuring symptomatic benefit and quality of life in paediatric oncology. British Journal of Cancer, 73(11), 1313–1316.

    Article  CAS  PubMed Central  PubMed  Google Scholar 

  14. Wallander, J. L., & Varni, J. W. (1998). Effects of pediatric chronic physical disorders on child and family adjustment. Journal of Child Psychology and Psychiatry, 39(1), 29–46.

    Article  CAS  PubMed  Google Scholar 

  15. Goldbeck, L. (2006). The impact of newly diagnosed chronic paediatric conditions on parental quality of life. Quality of Life Research, 15(7), 1121–1131.

    Article  PubMed  Google Scholar 

  16. Speyer, E., Herbinet, A., Vuillemin, A., Chastagner, P., & Briancon, S. (2009). Agreement between children with cancer and their parents in reporting the child’s health-related quality of life during a stay at the hospital and at home. Child: Care, Health and Development, 35(4), 489–495.

    CAS  Google Scholar 

  17. Russell, K. M., Hudson, M., Long, A., & Phipps, S. (2006). Assessment of health-related quality of life in children with cancer: Consistency and agreement between parent and child reports. Cancer, 106(10), 2267–2274.

    Article  PubMed  Google Scholar 

  18. Chang, P. C., & Yeh, C. H. (2005). Agreement between child self-report and parent proxy-report to evaluate quality of life in children with cancer. Psycho-Oncology, 14(2), 125–134.

    Article  PubMed  Google Scholar 

  19. Parsons, S. K., Fairclough, D. L., Wang, J., & Hinds, P. S. (2012). Comparing longitudinal assessments of quality of life by patient and parent in newly diagnosed children with cancer: The value of both raters’ perspectives. Quality of Life Research, 21(5), 915–923.

    Article  PubMed  Google Scholar 

  20. http://cidades.ibge.gov.br/xtras/perfil.php?lang=&codmun=310620. Accessed 21 June 2014.

  21. Varni, J. W., Burwinkle, T. M., Katz, E. R., Meeske, K., & Dickinson, P. (2002). The PedsQL in pediatric cancer: Reliability and validity of the pediatric quality of life inventory generic core scales, multidimensional fatigue scale, and cancer module. Cancer, 94(7), 2090–2106.

    Article  PubMed  Google Scholar 

  22. Varni, J. W., Katz, E. R., Seid, M., Quiggins, D. J., Friedman-Bender, A., & Castro, C. M. (1998). The pediatric cancer quality of life inventory (PCQL). I. Instrument development, descriptive statistics, and cross-informant variance. Journal of Behavioral Medicine, 21(2), 179–204.

    Article  CAS  PubMed  Google Scholar 

  23. Scarpelli, A. C., Paiva, S. M., Pordeus, I. A., Ramos-Jorge, M. L., Varni, J. W., & Allison, P. J. (2008). Measurement properties of the Brazilian version of the pediatric quality of life inventory (PedsQL) cancer module scale. Health and Quality of Life Outcomes, 6, 7.

    Article  PubMed Central  PubMed  Google Scholar 

  24. Cohen, J. (1988). Statistical power analysis for the behavioral sciences (2nd ed.). Hillsdale: Lawrence Erlbaum.

    Google Scholar 

  25. Chaudhry, Z., & Siddiqui, S. (2012). Health related quality of life assessment in Pakistani paediatric cancer patients using PedsQL 4.0 generic core scale and PedsQL cancer module. Health and Quality of Life Outcomes, 10, 52.

    Article  PubMed Central  PubMed  Google Scholar 

  26. Buck, D. (2012). The PedsQL as a measure of parent-rated quality of life in healthy UK toddlers: Psychometric properties and cross-cultural comparisons. Journal of Child Health Care, 16(4), 331–338.

    PubMed  Google Scholar 

  27. Knoester, H., Grootenhuis, M. A., & Bos, A. P. (2007). Outcome of paediatric intensive care survivors. European Journal of Pediatrics, 166(11), 1119–1128.

    Article  PubMed Central  PubMed  Google Scholar 

  28. Colville, G. A., & Pierce, C. M. (2013). Children’s self-reported quality of life after intensive care treatment. Pediatric Critical Care Medicine, 14(2), 85–92.

    Article  Google Scholar 

  29. Rosenberg, A. R., Dussel, V., Kang, T., Geyer, J. R., Gerhardt, C. A., Feudtner, C., et al. (2013). Psychological distress in parents of children with advanced cancer. JAMA Pediatrics, 167(6), 537–543.

    Article  PubMed Central  PubMed  Google Scholar 

  30. Kurtz, B. P., & Abrams, A. N. (2010). Psychiatric aspects of pediatric cancer. Child and Adolescent Psychiatric Clinics of North America, 19(2), 401–421.

    Article  PubMed  Google Scholar 

  31. Peterson, A. M., Harper, F. W., Albrecht, T. L., Taub, J. W., Orom, H., Phipps, S., et al. (2014). Parent caregiver self-efficacy and child reactions to pediatric cancer treatment procedures. Journal of Pediatric Oncology Nursing, 31(1), 18–27.

    Article  PubMed Central  PubMed  Google Scholar 

  32. Upton, P., Lawford, J., & Eiser, C. (2008). Parent-child agreement across child health-related quality of life instruments: A review of the literature. Quality of Life Research, 17(6), 895–913.

    Article  PubMed  Google Scholar 

  33. Lin, C. Y., Luh, W. M., Cheng, C. P., Yang, A. L., Su, C. T., & Ma, H. I. (2013). Measurement equivalence across child self-reports and parent-proxy reports in the chinese version of the pediatric quality of life inventory version 4.0. Child Psychiatry and Human Development, 44(5), 583–590.

    Article  PubMed  Google Scholar 

  34. Cremeens, J., Eiser, C., & Blades, M. (2006). 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 and Quality of Life Outcomes, 4, 58.

    Article  PubMed Central  PubMed  Google Scholar 

  35. Bland, J. M., & Altman, D. G. (1986). Statistical methods for assessing agreement between two methods of clinical measurement. Lancet, 1(8476), 307–310.

    Article  CAS  PubMed  Google Scholar 

  36. Majnemer, A., Shevell, M., Law, M., Poulin, C., & Rosenbaum, P. (2008). Reliability in the ratings of quality of life between parents and their children of school age with cerebral palsy. Quality of Life Research, 17(9), 1163–1171.

    Article  PubMed  Google Scholar 

  37. Tsai, M. H., Hsu, J. F., Chou, W. J., Yang, C. P., Jaing, T. H., Hung, I. J., et al. (2013). Psychosocial and emotional adjustment for children with pediatric cancer and their primary caregivers and the impact on their health-related quality of life during the first 6 months. Quality of Life Research, 22(3), 625–634.

    Article  PubMed  Google Scholar 

  38. Applebaum, A. J., & Breitbart, W. (2013). Care for the cancer caregiver: A systematic review. Palliative & Supportive Care, 11(3), 231–252.

    Article  Google Scholar 

Download references

Acknowledgments

This study was supported by the Research Foundation of the State of Minas Gerais (FAPEMIG), the National Council of Technological and Scientific Development (CNPq) and the Brazilian Coordination of Higher Education, Brazilian Ministry of Education (CAPES).

Ethical standards

The study received approval from the Research Ethics Committees of the institutions involved. The participants’ rights were protected, and all persons gave their informed consent prior to their inclusion in the study.

Conflict of interest

The authors declare that they have no competing interests.

Author information

Authors and Affiliations

  1. Department of Pediatric Dentistry and Orthodontics, Faculty of Dentistry, Universidade Federal de Minas Gerais, Av. Antônio Carlos 6627, Belo Horizonte, MG, 31270-901, Brazil

    Ana Paula Hermont, Ana Carolina Scarpelli, Saul M. Paiva, Sheyla M. Auad & Isabela A. Pordeus

Authors
  1. Ana Paula Hermont
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Ana Carolina Scarpelli
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Saul M. Paiva
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Sheyla M. Auad
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Isabela A. Pordeus
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Ana Paula Hermont.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Hermont, A.P., Scarpelli, A.C., Paiva, S.M. et al. Anxiety and worry when co** with cancer treatment: agreement between patient and proxy responses. Qual Life Res 24, 1389–1396 (2015). https://doi.org/10.1007/s11136-014-0869-3

Download citation

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s11136-014-0869-3

Keywords

Search

Navigation