Quality of Life Research

, Volume 22, Issue 3, pp 625–634 | Cite as

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

  • Ming-Horng Tsai
  • Jen-Fu Hsu
  • Wen-Jiun Chou
  • Chao-Ping Yang
  • Tang-Her Jaing
  • Iou-Jih Hung
  • Hwey-Fang Liang
  • Hsuan-Rong Huang
  • Yu-Shu Huang



To evaluate caregiver-reported psychosocial adjustment and health-related quality of life (HrQoL) of Taiwanese children with newly diagnosed cancer and their caregivers during the first 6 months of treatment.


Caregivers of 89 newly diagnosed children completed the child behavior checklist, the pediatric quality of life inventory (PedsQL 4.0), the Parenting Stress Index, and the SF-36 questionnaire at diagnosis, and again 3 and 6 months into treatment. They were compared with a group of age- and sex-matched controls from general community.


Significantly worse HrQoL in both children and their caregivers and greater parenting stress were noted in the cancer group than the controls during the first 6 months. Children with cancer were found to have significantly more internalizing behavioral problems and somatic complaints, especially those younger than 12 years old. After starting chemotherapy, significant decrease in parenting stress and improvements of both caregivers and children’s HrQoL were noted within the first 6 months, although not to the level comparable with normal controls.


Although children and their caregivers can adjust themselves gradually during the first 6 months after diagnosis of cancer, intervention and efforts aimed at reducing their distress and promoting adjustments are still required during this period.


Psychosocial adjustment Quality of life Children Cancer Stress 



Health-related quality of life


The child behavior checklist


Parenting stress index


Socioeconomic status

PedsQL 4.0

The pediatric quality of life inventory version 4.0



Statistical analyses were done by Pro. Chang Chee-Jen ( We declared no conflict of interest for each authors and no funding about this work. We thank all nursing staff working in our Pediatric Hematology/Oncology ward for taking care of these patients.

Conflict of interest

None of the sponsors played any role in the study design, the collection, analysis, or interpretation of data, the writing of the manuscript, or in the decision to submit it for publication.


  1. 1.
    Sawyer, M. G., Streiner, D. L., Antoniou, G., et al. (1997). Childhood cancer: A two-year prospective study of the psychological adjustment of children and parents. Journal of the American Academy of Child and Adolescent Psychiatry, 36, 1736–1743.PubMedCrossRefGoogle Scholar
  2. 2.
    Dixon-Woods, M., Findlay, M., Young, B., et al. (2001). Parents’ accounts of obtaining a diagnosis of childhood cancer. Lancet, 357, 670–674.PubMedCrossRefGoogle Scholar
  3. 3.
    Boman, K. K., Viksten, J., Kogner, P., et al. (2004). Serious illness in childhood: The different threats of cancer and diabetes from a parent perspective. Journal of Pediatrics, 145, 373–379.PubMedCrossRefGoogle Scholar
  4. 4.
    Sawyer, M., Antoniou, G., Toogood, I., et al. (2000). Childhood cancer: A 4-year prospective study of the psychological adjustment of children and parents. Journal of Pediatric Hematology/oncology, 22, 214–220.PubMedCrossRefGoogle Scholar
  5. 5.
    Hedström, M., Ljungman, G., & von Essen, L. (2005). Perceptions of distress among adolescents recently diagnosed with cancer. Journal of Pediatric Hematology/oncology, 27, 15–22.PubMedCrossRefGoogle Scholar
  6. 6.
    National Cancer Policy Board (U.S.), Weiner, S. L., & Simone, J. V. (2003). Childhood cancer survivorship: improving care and quality of life. Washington, DC: National Academies Press.Google Scholar
  7. 7.
    Kato, P. M., Cole, S. W., Bradlyn, A. S., & Pollock, B. H. (2008). A video game improves behavioral outcomes in adolescents and young adults with cancer: A randomized trial. Pediatrics, 122, e305–e317.PubMedCrossRefGoogle Scholar
  8. 8.
    Malbasa, T., Kodish, E., & Santacroce, S. J. (2007). Adolescent adherence to oral therapy for leukemia: A focus group study. Journal of Pediatric Oncology Nursing, 24, 139–151.PubMedCrossRefGoogle Scholar
  9. 9.
    Schmiegelow, K., Schroder, H., Gustafsson, G., et al. (1995). Risk of relapse in childhood acute lymphoblastic leukemia is related to RBC methotrexate and mercaptopurine metabolites during maintenance chemotherapy. Journal of Clinical Oncology, 13, 345–351.PubMedGoogle Scholar
  10. 10.
    Festa, R. S., Tamaroff, M. H., Chasalow, F., & Lanzkowsky, P. (1992). Therapeutic adherence to oral medication regimens by adolescents with cancer: Laboratory assessment. Journal of Pediatrics, 120, 807–811.PubMedCrossRefGoogle Scholar
  11. 11.
    Stam, H., Grootenhuis, M. A., Brons, P. P., et al. (2006). Health-related quality of life in children and emotional reactions of parents following completion of cancer treatment. Pediatric Blood & Cancer, 47, 312–319.CrossRefGoogle Scholar
  12. 12.
    Koopman, H. M., Koetsier, J. A., Taminiau, A. H., et al. (2005). Health-related quality of life and coping strategies of children after treatment of a malignant bone tumor: A 5-year follow-up study. Pediatric Blood & Cancer, 45, 694–699.CrossRefGoogle Scholar
  13. 13.
    Meeske, K., Katz, E. R., Palmer, S. N., et al. (2004). Parent proxy-reported health-related quality of life and fatigue in pediatric patients diagnosed with brain tumors and acute lymphoblastic leukemia. Cancer, 101, 2116–2125.PubMedCrossRefGoogle Scholar
  14. 14.
    Meeske, K. A., Patel, S. K., Palmer, S. N., et al. (2007). Factors associated with health-related quality of life in pediatric cancer survivors. Pediatric Blood & Cancer, 49, 298–305.CrossRefGoogle Scholar
  15. 15.
    Shankar, S., Robison, L., Jenney, M. E., et al. (2005). Health-related quality of life in young survivors of childhood cancer using the Minneapolis-manchester quality of life-youth form. Pediatrics, 115, 435–442.PubMedCrossRefGoogle Scholar
  16. 16.
    Mulhern, R. K., Wasserman, A. L., Friedman, A. G., et al. (1989). Social competence and behavioral adjustment of children who are long-term survivors of cancer. Pediatrics, 83, 18–25.PubMedGoogle Scholar
  17. 17.
    Landolt, M. A., Vollrath, M., Niggli, F. K., et al. (2006). Health-related quality of life in children with newly diagnosed cancer: A one year follow-up study. Health Qual Life Outcomes, 4, 63.PubMedCrossRefGoogle Scholar
  18. 18.
    Sung, L., Yanofsky, R., Klaassen, R. J., et al. (2011). Quality of life during active treatment for pediatric acute lymphoblastic leukemia. International Journal of Cancer, 128, 1213–1220.CrossRefGoogle Scholar
  19. 19.
    Kazak, A. E., Boeving, C. A., Alderfer, M. A., Hwang, W. T., & Reilly, A. (2005). Posttraumatic stress symptoms during treatment in parents of children with cancer. Journal of Clinical Oncology, 23, 7405–7410.PubMedCrossRefGoogle Scholar
  20. 20.
    Klassen, A. F., Klaassen, R., Dix, D., Pritchard, S., Yanofsky, R., O’Donnell, M., et al. (2008). Impact of caring for a child with cancer on parents’ health-related quality of life. Journal of Clinical Oncology, 26, 5884–5889.PubMedCrossRefGoogle Scholar
  21. 21.
    Dolgin, M. J., Phipps, S., Fairclough, D. L., Sahler, O. J., Askins, M., Noll, R. B., et al. (2007). Trajectories of adjustment in mothers of children with newly diagnosed cancer: A natural history investigation. Journal of Pediatric Psychology, 32, 771–782.PubMedCrossRefGoogle Scholar
  22. 22.
    Sawyer, M. G., Streiner, D. L., Antoniou, G., Toogood, I., & Rice, M. (1998). Influence of parental and family adjustment on the later psychological adjustment of children treated for cancer. Journal of the American Academy of Child and Adolescent Psychiatry, 37, 815–822.PubMedCrossRefGoogle Scholar
  23. 23.
    Robinson, K. E., Gerhardt, C. A., Vannatta, K., & Noll, R. B. (2007). Parent and family factors associated with child adjustment to pediatric cancer. Journal of Pediatric Psychology, 32, 400–410.PubMedCrossRefGoogle Scholar
  24. 24.
    Achenbach, T. (1991). Manual for child behavior checklist/4-18. Burlington: University of Vermont.Google Scholar
  25. 25.
    Yang, H. J., Soong, W. T., Chiang, C. N., & Chen, W. J. (2000). Competence and behavioral/emotional problems among Taiwanese adolescents as reported by parents and teachers. Journal of the American Academy of Child and Adolescent Psychiatry, 39, 232–239.PubMedCrossRefGoogle Scholar
  26. 26.
    Huang, H. L., Chuang, S. F., & Wang, Y. C. (1994). Developing the multiaxial behavioral assessment of children in Taiwan. In: Chinese Assessment Association (Ed.), Psychological assessment in Chinese-speaking society (pp. 259–310). Taipei, Taiwan: Psychology Press.Google Scholar
  27. 27.
    Loyd, B., & Abidin, R. (1985). Revision of the parenting stress index. Journal of Pediatric Psychology, 10, 169–177.PubMedCrossRefGoogle Scholar
  28. 28.
    Yeh, C. H., Chen, M. L., Li, W., & Chuang, H. L. (2001). The Chinese version of the parenting stress index: A psychometric study. Acta Paediatrica, 90, 1470–1477.PubMedCrossRefGoogle Scholar
  29. 29.
    Garratt, A., Schmidt, L., Mackintosh, A., & Fitzpatrick, R. (2002). Quality of life measurement: Bibliographic study of patient assessed health outcome measures. BMJ, 324, 1417.PubMedCrossRefGoogle Scholar
  30. 30.
    Ware, J. E. (2000). SF-36 health survey update. Spine, 25, 3130–3139.PubMedCrossRefGoogle Scholar
  31. 31.
    Varni, J. W., Seid, M., & Rode, C. A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. Medical Care, 37, 126–139.PubMedCrossRefGoogle Scholar
  32. 32.
    Varni, J. W., Seid, M., & Kurtin, P. S. (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, 800–812.PubMedCrossRefGoogle Scholar
  33. 33.
    Hao, Y., Tian, Q., Lu, Y., Chai, Y., & Rao, S. (2010). Psychometric properties of the Chinese version of the pediatric quality of life inventory 4.0 generic core scales. Quality of Life Research, 19, 1229–1233.PubMedCrossRefGoogle Scholar
  34. 34.
    Hollingshead, A. B. (1958). Two factor index of social position. New Haven, CT: Yale University.Google Scholar
  35. 35.
    Pai, A. L., Greenley, R. N., Lewandowski, A., Drotar, D., Youngstrom, E., & Peterson, C. C. (2007). A meta-analytic review of the influence of pediatric cancer on parent and family functioning. Journal of Family Psychology, 21, 407–415.PubMedCrossRefGoogle Scholar
  36. 36.
    Sung, L., Klaassen, R. J., Dix, D., et al. (2009). Identification of paediatric cancer patients with poor quality of life. British Journal of Cancer, 100, 82–88.PubMedCrossRefGoogle Scholar
  37. 37.
    Hall, A. S., Thorley, G., & Houtman, P. N. (2003). The effects of corticosteroids on behavior in children with nephrotic syndrome. Pediatric Nephrology (Berlin, Germany), 18, 1220–1223.CrossRefGoogle Scholar
  38. 38.
    Soliday, E., Grey, S., & Lande, M. B. (1999). Behavioral effects of corticosteroids in steroid-sensitive nephrotic syndrome. Pediatrics, 104, e51.PubMedCrossRefGoogle Scholar
  39. 39.
    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 Qual Life Outcomes, 30, 58.CrossRefGoogle Scholar
  40. 40.
    Jurbergs, N., Russell, K. M., Long, A., & Phipps, S. (2008). Adaptive style and differences in parent and child report of health-related quality of life in children with cancer. Psychooncology, 17, 83–90.PubMedCrossRefGoogle Scholar
  41. 41.
    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, 2267–2274.PubMedCrossRefGoogle Scholar
  42. 42.
    Riley, A. W., Forrest, C. B., Starfield, B., et al. (2004). The parent report form of the CHIP-Child edition. Reliability and validity. Medical Care, 42, 210–220.PubMedCrossRefGoogle Scholar

Copyright information

© Springer Science+Business Media B.V. 2012

Authors and Affiliations

  • Ming-Horng Tsai
    • 1
    • 5
    • 6
  • Jen-Fu Hsu
    • 5
  • Wen-Jiun Chou
    • 2
  • Chao-Ping Yang
    • 1
    • 5
  • Tang-Her Jaing
    • 1
    • 5
  • Iou-Jih Hung
    • 1
    • 5
  • Hwey-Fang Liang
    • 6
  • Hsuan-Rong Huang
    • 5
  • Yu-Shu Huang
    • 3
    • 4
    • 5
  1. 1.Division of Pediatric Hematology/Oncology, Department of PediatricsChang Gung Memorial HospitalTaoyuanTaiwan
  2. 2.Division of Child PsychiatryChang Gung Memorial HospitalKaohsiungTaiwan
  3. 3.Division of Pediatric PsychiatryChang Gung Memorial HospitalTaoyuanTaiwan
  4. 4.Department of Child Psychiatry and Sleep CenterChang Gung Memorial HospitalKwei-ShanTaiwan
  5. 5.College of Medicine, Chang Gung UniversityTaoyuanTaiwan
  6. 6.Chang Gung Institute of TechnologyChiayiTaiwan

Personalised recommendations