Skip to main content
Erschienen in: Quality of Life Research 3/2013

01.04.2013

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

verfasst von: 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

Erschienen in: Quality of Life Research | Ausgabe 3/2013

Einloggen, um Zugang zu erhalten

Abstract

Purpose

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.

Methods

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.

Results

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.

Conclusions

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.
Literatur
1.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
2.
Zurück zum Zitat Dixon-Woods, M., Findlay, M., Young, B., et al. (2001). Parents’ accounts of obtaining a diagnosis of childhood cancer. Lancet, 357, 670–674.PubMedCrossRef Dixon-Woods, M., Findlay, M., Young, B., et al. (2001). Parents’ accounts of obtaining a diagnosis of childhood cancer. Lancet, 357, 670–674.PubMedCrossRef
3.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
4.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
5.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
6.
Zurück zum Zitat 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. 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.
7.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
8.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
9.
Zurück zum Zitat 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.PubMed 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.PubMed
10.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
11.
Zurück zum Zitat 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.CrossRef 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.CrossRef
12.
Zurück zum Zitat 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.CrossRef 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.CrossRef
13.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
14.
Zurück zum Zitat 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.CrossRef 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.CrossRef
15.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
16.
Zurück zum Zitat 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.PubMed 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.PubMed
17.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
18.
Zurück zum Zitat 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.CrossRef 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.CrossRef
19.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
20.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
21.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
22.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
23.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
24.
Zurück zum Zitat Achenbach, T. (1991). Manual for child behavior checklist/4-18. Burlington: University of Vermont. Achenbach, T. (1991). Manual for child behavior checklist/4-18. Burlington: University of Vermont.
25.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
26.
Zurück zum Zitat 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. 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.
27.
Zurück zum Zitat Loyd, B., & Abidin, R. (1985). Revision of the parenting stress index. Journal of Pediatric Psychology, 10, 169–177.PubMedCrossRef Loyd, B., & Abidin, R. (1985). Revision of the parenting stress index. Journal of Pediatric Psychology, 10, 169–177.PubMedCrossRef
28.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
29.
Zurück zum Zitat Garratt, A., Schmidt, L., Mackintosh, A., & Fitzpatrick, R. (2002). Quality of life measurement: Bibliographic study of patient assessed health outcome measures. BMJ, 324, 1417.PubMedCrossRef Garratt, A., Schmidt, L., Mackintosh, A., & Fitzpatrick, R. (2002). Quality of life measurement: Bibliographic study of patient assessed health outcome measures. BMJ, 324, 1417.PubMedCrossRef
31.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
32.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
33.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
34.
Zurück zum Zitat Hollingshead, A. B. (1958). Two factor index of social position. New Haven, CT: Yale University. Hollingshead, A. B. (1958). Two factor index of social position. New Haven, CT: Yale University.
35.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
36.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
37.
Zurück zum Zitat 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.CrossRef 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.CrossRef
38.
Zurück zum Zitat Soliday, E., Grey, S., & Lande, M. B. (1999). Behavioral effects of corticosteroids in steroid-sensitive nephrotic syndrome. Pediatrics, 104, e51.PubMedCrossRef Soliday, E., Grey, S., & Lande, M. B. (1999). Behavioral effects of corticosteroids in steroid-sensitive nephrotic syndrome. Pediatrics, 104, e51.PubMedCrossRef
39.
Zurück zum Zitat 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.CrossRef 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.CrossRef
40.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
41.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
42.
Zurück zum Zitat 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.PubMedCrossRef 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.PubMedCrossRef
Metadaten
Titel
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
verfasst von
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
Publikationsdatum
01.04.2013
Verlag
Springer Netherlands
Erschienen in
Quality of Life Research / Ausgabe 3/2013
Print ISSN: 0962-9343
Elektronische ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-012-0176-9

Weitere Artikel der Ausgabe 3/2013

Quality of Life Research 3/2013 Zur Ausgabe