Skip to main content
SpringerLink
Log in

Agreement between quality of life assessed using family proxy and child self-reports among children with hematologic malignancy

  • Research
  • Published:
European Journal of Pediatrics Aims and scope Submit manuscript

Abstract

Evidence-based literature recognizes that the different degrees of agreement between a child self-report and a proxy-report depend on the characteristics of the domains, the child’s age and illness, the proxy’s own perspective on QoL, and family attendance during the child’s hospitalization. This study aims to determine the degree of agreement between proxy-reports and child self-reports on quality of life (QoL) for children with hematologic malignancy ranging in age from 5 to 18 years who are undergoing treatment. We retrieved clinical QoL data from a study titled “Dynamic change in QoL for Vietnamese children with hematologic malignancy” from April 2021 to December 2022. To evaluate the magnitude of agreement between self-reports and proxy-reports, intraclass correlation coefficients (ICCs) for 259 pairs of measurements were quantified. Using independent t tests, the mean differences between self-reports and proxy-reports were tested. Moderate agreement was consistent through all age groups for five subscales, including physical, psychosocial, pain, nausea, and procedural anxiety (ICCs ranged from 0.53 to 0.74). The weakest agreement appeared in two groups, subjects aged 5–7 years and 13–18 years on six domains (school, treatment anxiety, worry, cognitive problems, perceived physical appearance, and communication) (-0.01 to 0.49). Child self-rating was consistently higher than that of proxies for the physical, emotional, and nausea domains among children aged 5–7 years and for procedural anxiety, treatment anxiety, and cognitive problems among children aged 8–12 years.

    Conclusion: The agreement level of self-reports and proxy-reports was differently distributed by child age and the PedsQL domains. The proxy children agreement on QoL among children with hematologic malignancy was divergent according to the different age groups, which could potentially be explained by proxy-child bonding at different stages of childhood development. Our recommendation for future studies is to explore children’s age as a potential factor influencing proxy agreement on QoL among children with cancer.

What is Known:

• Children and their proxies may think differently about quality of life (QoL).

• Comparing two sources of data (i.e., child and proxy) on aspects of QoL can help identify the discrepancies between children’s perceptions of their QoL and their parents’ perceptions. This can be useful in terms of identifying potential areas for improvement or concern and may also be helpful in making decisions about treatment and care.

What is New:

• Our study results demonstrated that proxies who comprised children aged 5-7 years or 13-18 years reported differently among domains that cannot be expressed verbally or with body language, including cognitive problems, perceived physical appearance, and communication.

• Children generally perceived their QoL to be better than their proxies. Therefore, a more comprehensive understanding of children’s QoL may require the consideration of multiple sources of data from various perspectives.

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

Access this article

Log in via an institution

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Institutional subscriptions

Similar content being viewed by others

Data availability

No datasets were generated or analysed during the current study.

Abbreviations

QoL :

Quality of life

ICC :

Intraclass correlation coefficients

RFS :

Relapse-free survival

ICD-10 :

International Classification of Diseases 10th

SCT :

Stem cell transplantation

RA :

Research assistant

PedsQL-G :

PedsQL Generic Core Scales

PedsQL-C :

PedsQL Cancer Module

PI :

Primary investigator

References

  1. Vlachioti E, Matziou V, Perdikaris P, Mitsiou M, Stylianou C, Tsoumakas K, Moschovi M (2016) Assessment of quality of life of children and adolescents with cancer during their treatment. Jpn J Clin Oncol 46(5):453–461. https://doi.org/10.1093/jjco/hyw009

    Article  PubMed  Google Scholar 

  2. Meeske K, Katz ER, Palmer SN, Burwinkle T, Varni JW (2004) Parent proxy-reported health-related quality of life and fatigue in pediatric patients diagnosed with brain tumors and acute lymphoblastic leukemia. Cancer 101(9):2116–2125. https://doi.org/10.1002/cncr.20609

    Article  PubMed  Google Scholar 

  3. Xia W, Li HCW, Lam KWK, Chung OKJ, Song P, Chiu SY, Ho KY (2019) The impact of hematologic cancer and its treatment on physical activity level and quality of life among children in mainland China: a descriptive study. Cancer Nurs 42(6):492–500. https://doi.org/10.1097/NCC.0000000000000661

    Article  PubMed  Google Scholar 

  4. Li HCW, Williams PD, Lopez V, Chung JOK, Chiu SY (2013) Relationships among therapy-related symptoms, depressive symptoms, and quality of life in Chinese children hospitalized with cancer: an exploratory study. Cancer Nurs 36(5):346–354. https://doi.org/10.1097/NCC.0b013e31824062ec

    Article  PubMed  Google Scholar 

  5. Wallander JL, Koot HM (2016) Quality of life in children: a critical examination of concepts, approaches, issues, and future directions. Clin Psychol Rev 45:131–143. https://doi.org/10.1016/j.cpr.2015.11.007

    Article  PubMed  Google Scholar 

  6. Parsons SK, Fairclough DL, Wang J, Hinds PS (2012) Comparing longitudinal assessments of quality of life by patient and parent in newly diagnosed children with cancer: the value of both raters’ perspectives. Qual Life Res 21:915–923. https://doi.org/10.1007/s11136-011-9986-4

    Article  PubMed  Google Scholar 

  7. Varni JW, Burwinkle TM, Lane MM (2005) Health-related quality of life measurement in pediatric clinical practice: an appraisal and precept for future research and application. Health Qual Life Outcomes 3:1–9. https://doi.org/10.1186/1477-7525-3-34

    Article  Google Scholar 

  8. Nakajima S, Sato I, Soejima T, Koh K, Kato M, Okamoto Y, Kamibeppu K (2020) Comparison of child and family reports of health-related quality of life in pediatric acute lymphoblastic leukemia patients after induction therapy. BMC Pediatr 20(1):1–11. https://doi.org/10.1186/s12887-020-02287-3

    Article  Google Scholar 

  9. Herrmann DS, Thurber JR, Miles K, Gilbert G (2011) Childhood leukemia survivors and their return to school: a literature review, case study, and recommendations. J Appl School Psychol 27(3):252–275. https://doi.org/10.1080/15377903.2011.590777

    Article  Google Scholar 

  10. Savage E, Riordan AO, Hughes M (2009) Quality of life in children with acute lymphoblastic leukaemia: a systematic review. Eur J Oncol Nurs 13(1):36–48. https://doi.org/10.1016/j.ejon.2008.09.001

    Article  CAS  PubMed  Google Scholar 

  11. Upton P, Lawford J, Eiser C (2008) Parent-child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res 17(6):895–913. https://doi.org/10.1007/s11136-008-9350-5

    Article  PubMed  Google Scholar 

  12. Eiser C, Varni JW (2013) Health-related quality of life and symptom reporting: similarities and differences between children and their parents. Eur J Pediatrics 172:1299–1304. https://doi.org/10.1007/s00431-013-2049-9

    Article  Google Scholar 

  13. Verrips GHW, Vogels AGC, Ouden AD, Paneth N, Verloove-Vanhorick SP (2000) Measuring health‐related quality of life in adolescents: agreement between raters and between methods of administration. Child Care Health Dev 26(6):457–469. https://doi.org/10.1046/j.1365-2214.2000.00181.x

    Article  CAS  PubMed  Google Scholar 

  14. Bowling A (2005) Mode of questionnaire administration can have serious effects on data quality. J Public Health 27(3):281–291. https://doi.org/10.1093/pubmed/fdi031

    Article  Google Scholar 

  15. Landis JR, Koch GG (1977) The measurement of observer agreement for categorical data. Biometrics 33:159–174. https://doi.org/10.2307/2529310

    Article  CAS  PubMed  Google Scholar 

  16. Sneeuw KC, Sprangers MA, Aaronson NK (2002) The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease. J Clin Epidemiol 55:1130–1143. https://doi.org/10.1016/S0895-4356(02)00479-1

    Article  PubMed  Google Scholar 

  17. Eiser C, Vance YH, Horne B, Glaser A, Galvin H (2003) The value of the PedsQLTM in assessing quality of life in survivors of childhood cancer. Child Care Health Dev 29(2):95–102. https://doi.org/10.1046/j.1365-2214.2003.00318.x

    Article  CAS  PubMed  Google Scholar 

  18. Felder-Puig R, Frey E, Proksch K, Varni JW, Gadner H, Topf R (2004) Validation of the German version of the Pediatric Quality of Life Inventory TM (PedsQL TM) in childhood cancer patients off treatment and children with epilepsy. Qual Life Res 13:223–234. https://doi.org/10.1023/B:QURE.0000015305.44181.e3

    Article  CAS  PubMed  Google Scholar 

  19. Terwee CB, Mokkink LB, Knol DL et al (2012) Rating the methodological quality in systematic reviews of studies on measurement properties: a scoring system for the COSMIN checklist. Qual Life Res 21:651–657. https://doi.org/10.1007/s11136-011-9960-1

    Article  PubMed  Google Scholar 

  20. Varni JW, Seid M, Kurtin PS (2001) PedsQLTM 4.0: reliability and validity of the Pediatric Quality of Life Inventory version 4.0 generic core scales in healthy and patient populations. Med Care 39(8):800–812. https://doi.org/10.1177/1359104513488375

    Article  CAS  PubMed  Google Scholar 

  21. Ha NT (2019) Validation of Vietnamese version of pediatric quality of life inventory version 4.0 generic score scale among school children. Southeast Asian J Trop Med Public Health 50(5):942–951

    Google Scholar 

  22. Varni JW, Burwinkle TM, Katz ER, 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. https://doi.org/10.1002/cncr.10428

    Article  PubMed  Google Scholar 

  23. Koot HM (2020) Quality of life in children: the use of parent reports. Dev Med Child Neurol 62(5):545–546. https://doi.org/10.1111/dmcn.14476

    Article  PubMed  PubMed Central  Google Scholar 

  24. Zaki R, Bulgiba A, Ismail R, Ismail NA (2012) Statistical methods used to test for agreement of medical instruments measuring continuous variables in method comparison studies: a systematic review. PLoS ONE 7(5):e37908. https://doi.org/10.1371/journal.pone.0037908

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  25. Schulte F, Wurz A, Reynolds K, Strother D, Dewey D (2016) Quality of life in survivors of pediatric cancer and their siblings: the consensus between parent-proxy and self-reports. Pediatr Blood Cancer 63(4):677–683

    Article  PubMed  Google Scholar 

  26. Ocak E, Yozgat AK, Kacar D, Sucakli IA, Ozbek NY, Uneri OS, Yarali N (2020) Health-related quality of life for children with leukemia: child and parental perceptions. J Pediatr Hematol Oncol 43(1):e56–e63. https://doi.org/10.1097/mph.0000000000001959

    Article  Google Scholar 

  27. Eiser C, Eiser JR (2000) Social comparisons and quality of life among survivors of childhood cancer and their mothers. Psychol Health 15(3):435–450. https://doi.org/10.1080/08870440008402004

    Article  Google Scholar 

  28. Koopman HM, Koetsier JA, Taminiau AH, Hijnen KE, Bresters D, Egeler RM (2005) Health-related quality of life and coping strategies of children after treatment of a malignant bone tumor: a 5‐year follow‐up study. Pediatr Blood Cancer 45(5):694–699. https://doi.org/10.1002/pbc.20408

    Article  PubMed  Google Scholar 

  29. Richters JE (1992) Depressed mothers as informants about their children: a critical review of the evidence for distortion. Psychol Bull 112(3):485–499. https://doi.org/10.1037/0033-2909.112.3.485

    Article  CAS  PubMed  Google Scholar 

  30. Davis E, Nicolas C, Waters E, Cook K, Gibbs L, Gosch A, Ravens-Sieberer U (2007) Parent-proxy and child self-reported health-related quality of life: using qualitative methods to explain the discordance. Qual Life Res 16:863–871. https://doi.org/10.1007/s11136-007-9187-3

    Article  PubMed  Google Scholar 

  31. Wong MYF, Chan SWC (2006) The qualitative experience of Chinese parents with children diagnosed of cancer. J Clin Nurs 15(6):710–717. https://doi.org/10.1111/j.1365-2702.2006.01297.x

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

The completion of this research project would not have been possible without the contributions and support of many individuals and organizations. We also would like to thank the Mapi Research Trust Organization for providing the original PedsQL instruments for this research. The authors would like to express our gratitude to the members of our research team who support in data collection and management, including Huynh Thi My Hanh, Ho Thi Bich Ty, Nguyen Luu Hoang, Tran Thi Nguyen Thuy, Ho Tran Phuong Thao, To Thi Kim Thoa, Huynh Ngoc Yen, Hoang Minh Thanh. Without their hard work and dedication, this project would not have been possible. Finally, we sincerely thank all the participants in our study, who generously shared their time and experiences with us. Their willingness to engage with our research was essential to the success of this project, and we deeply appreciate their participation. Also, we express our appreciation to Ms. Savana Moore for her immense contributions with English editing of the manuscript.

Funding

The authors declare that no funds, grants, or other support were received during the preparation of this manuscript.

Author information

Authors and Affiliations

  1. Faculty of Nursing and Medical Technology, The Pham Ngoc Thach University of Medicine, Ho Chi Minh City, Vietnam

    Thu Hang Tran Thi

  2. Institute of Allied Health Sciences, College of Medicine, National Cheng Kung University, Tainan, Taiwan

    Chung-Ying Lin

  3. Biostatistics Consulting Center, National Cheng Kung University Hospital, College of Medicine, National Cheng Kung University, Tainan, Taiwan

    Chung-Ying Lin

  4. National Tainan Junior College of Nursing, No. 78, Sec. 2, Minzu Rd, Tainan, 700007, Taiwan

    Mei-Chih Huang

  5. Department of Nursing, College of Medicine, National Cheng Kung University, No.1, University Road, Tainan, 701401, Taiwan

    Mei-Chih Huang

Authors
  1. Thu Hang Tran Thi
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Chung-Ying Lin
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Mei-Chih Huang
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

All authors contributed to the study conception and design. Tran Thi, Thu Hang: Individual conceptualization, resources, data curation, writing the original draft, methodology, writing-original draft preparation and editing, software, formal analysis, investigation, and peer review. Lin, Chung-Ying: support in formal analysis, writing- review and editing, and peer review. Huang, Mei-Chih: lead and support in the formal analysis, investigation, writing-review and editing, supervision, and project administration.

Corresponding author

Correspondence to Mei-Chih Huang.

Ethics declarations

Ethics approval

In accordance with the Declaration of Helsinki, the ethical approval for this study was obtained from three hospital ethics committees including: Blood Transfusion and Hematology Hospital (954/TMHH-NCKH), Children’s Hospital 2 (11/BVNĐ2-CĐT), the Oncology Hospital (28/BVUB-CĐT).

Consent to participate

Informed consent was obtained from all individual participants included in the study. Written informed consent was obtained from their parent or legal guardian.

Consent to publish

The authors affirm that no individual person’s data in any form (including any individual details, images or videos) are contained in this manuscript.

Competing interests

The authors declare no competing interests.

Additional information

Communicated by Peter de Winter

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Tran Thi, T.H., Lin, CY. & Huang, MC. Agreement between quality of life assessed using family proxy and child self-reports among children with hematologic malignancy. Eur J Pediatr (2024). https://doi.org/10.1007/s00431-024-05613-4

Download citation

  • Received:

  • Revised:

  • Accepted:

  • Published:

  • DOI: https://doi.org/10.1007/s00431-024-05613-4

Keywords

Search

Navigation