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Gepubliceerd 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

Auteurs: 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

Gepubliceerd in: Quality of Life Research | Uitgave 3/2013

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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.
Literatuur
1.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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.
go back to reference 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
Metagegevens
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
Auteurs
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
Publicatiedatum
01-04-2013
Uitgeverij
Springer Netherlands
Gepubliceerd in
Quality of Life Research / Uitgave 3/2013
Print ISSN: 0962-9343
Elektronisch ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-012-0176-9

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