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Published in: Quality of Life Research 2/2018

Open Access 01-02-2018

Health-related quality of life and psychological distress in young adult survivors of childhood cancer and their association with treatment, education, and demographic factors

Authors: Janne F. Halvorsen, Anne Mari Sund, Lonnie Zeltzer, Marian Ådnanes, Heidi Jensberg, Terje A. Eikemo, Bendik Lund, Odin Hjemdal, Trude Reinfjell

Published in: Quality of Life Research | Issue 2/2018

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Abstract

Purpose

This study investigated health-related quality of life (HRQOL) and psychological distress among young adult (YA) survivors of childhood cancer and the association of these measures with treatment, education, and demographic factors ≥ 5 years post diagnosis.

Methods

Participants included cancer survivors (n = 91) recruited through the Cancer Registry of Norway (CRN) and healthy controls (n = 223) recruited from a student population. All participants completed self-report questionnaires, and the Pediatric Quality of Life Inventory (PedsQL™) 4.0 and the Hopkins Symptom Checklist-10 (HSCL-10) as a measure of HRQOL and distress, respectively.

Results

Survivors reported HRQOL at the same level as controls, except for poorer physical functioning. Survivors in general, and female survivors specifically, had higher odds than controls of reporting symptoms of distress above cut-off, but survivors did not have higher mean levels of distress compared to controls. Survivors reporting distress levels above the cut-off had significantly poorer HRQOL regarding physical functioning and lower total PedsQL scores than controls scoring above the cut-off. Age (for HRQOL only), female gender, low educational level, and perceived low economic status significantly predicted HRQOL and distress. Education interacted with the effect of cranial radiation in predicting HRQOL.

Conclusions

Survivors reported similar mean levels of HRQOL and distress as controls, except for physical functioning. For cancer survivors, demographic variables predicted HRQOL and distress. Some groups of survivors require closer follow-up, and more attention should be paid to factors associated with poor HRQOL and psychological distress in survivors, including female gender, lower education level, and lower income. Survivors treated with cranial radiation may be particular vulnerable in combination with low education regarding HRQOL.
Literature
1.
go back to reference Oeffinger, K. C., Mertens, A. C., Hudson, M. M., Gurney, J. G., Casillas, J., Chen, H., et al. (2004). Health care of young adult survivors of childhood cancer: A report from the childhood cancer survivor study. The Annals of Family Medicine, 2, 61–70. doi:10.1370/afm.26.CrossRefPubMed Oeffinger, K. C., Mertens, A. C., Hudson, M. M., Gurney, J. G., Casillas, J., Chen, H., et al. (2004). Health care of young adult survivors of childhood cancer: A report from the childhood cancer survivor study. The Annals of Family Medicine, 2, 61–70. doi:10.​1370/​afm.​26.CrossRefPubMed
3.
go back to reference Casillas, J., Kahn, K. L., Doose, M., Landier, W., Bhatia, S., Hernandez, J., et al. (2010). Transitioning childhood cancer survivors to adult-centered healthcare: Insights from parents, adolescent, and young adult survivors. Psycho-Oncology, 19, 982–990. doi:10.1002/pon.1650.CrossRefPubMed Casillas, J., Kahn, K. L., Doose, M., Landier, W., Bhatia, S., Hernandez, J., et al. (2010). Transitioning childhood cancer survivors to adult-centered healthcare: Insights from parents, adolescent, and young adult survivors. Psycho-Oncology, 19, 982–990. doi:10.​1002/​pon.​1650.CrossRefPubMed
4.
go back to reference Oeffinger, K. C., & Hudson, M. M. (2004). Long-term complications following childhood and adolescent cancer: Foundations for providing risk-based health care for survivors. CA: A Cancer Journal for Clinicians, 54, 208–236. doi:10.3322/canjclin.54.4.208. Oeffinger, K. C., & Hudson, M. M. (2004). Long-term complications following childhood and adolescent cancer: Foundations for providing risk-based health care for survivors. CA: A Cancer Journal for Clinicians, 54, 208–236. doi:10.​3322/​canjclin.​54.​4.​208.
6.
go back to reference Zeltzer, L. K., Lu, Q., Leisenring, W., Tsao, J. C. I., Recklitis, C., Armstrong, G., et al. (2008). Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: A report from the childhood cancer survivor study. Cancer Epidemiology Biomarkers & Prevention, 17, 435–446. doi:10.1158/1055-9965.EPI-07-2541.CrossRef Zeltzer, L. K., Lu, Q., Leisenring, W., Tsao, J. C. I., Recklitis, C., Armstrong, G., et al. (2008). Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: A report from the childhood cancer survivor study. Cancer Epidemiology Biomarkers & Prevention, 17, 435–446. doi:10.​1158/​1055-9965.​EPI-07-2541.CrossRef
10.
go back to reference Bullinger, M. (2002). Assessing health related quality of life in medicine. An overview over concepts, methods and applications in international research. Restorative Neurology and Neuroscience, 20, 93–101.PubMed Bullinger, M. (2002). Assessing health related quality of life in medicine. An overview over concepts, methods and applications in international research. Restorative Neurology and Neuroscience, 20, 93–101.PubMed
11.
go back to reference Blaauwbroek, R., Stant, A. D., Groenier, K. H., Kamps, W. A., Meyboom, B., & Postma, A. (2007). Health-related quality of life and adverse late effects in adult (very) long-term childhood cancer survivors. European Journal of Cancer, 43, 122–130. doi:10.1016/j.ejca.2006.08.003.CrossRefPubMed Blaauwbroek, R., Stant, A. D., Groenier, K. H., Kamps, W. A., Meyboom, B., & Postma, A. (2007). Health-related quality of life and adverse late effects in adult (very) long-term childhood cancer survivors. European Journal of Cancer, 43, 122–130. doi:10.​1016/​j.​ejca.​2006.​08.​003.CrossRefPubMed
12.
go back to reference Chan, C. W. H., Choi, K. C., Chien, W. T., Cheng, K. K. F., Goggins, W., So, W. K. W., et al. (2014). Health-related quality-of-life and psychological distress of young adult survivors of childhood cancer in Hong Kong. Psycho-Oncology, 23, 229–236. doi:10.1002/pon.3396.CrossRefPubMed Chan, C. W. H., Choi, K. C., Chien, W. T., Cheng, K. K. F., Goggins, W., So, W. K. W., et al. (2014). Health-related quality-of-life and psychological distress of young adult survivors of childhood cancer in Hong Kong. Psycho-Oncology, 23, 229–236. doi:10.​1002/​pon.​3396.CrossRefPubMed
13.
go back to reference Reulen, R. C., Winter, D. L., Lancashire, E. R., Zeegers, M. P., Jenney, M. E., Walters, S. J., et al. (2007). Health-status of adult survivors of childhood cancer: A large-scale population-based study from the British childhood cancer survivor study. International Journal of Cancer, 121, 633–640. doi:10.1002/ijc.22658.CrossRefPubMed Reulen, R. C., Winter, D. L., Lancashire, E. R., Zeegers, M. P., Jenney, M. E., Walters, S. J., et al. (2007). Health-status of adult survivors of childhood cancer: A large-scale population-based study from the British childhood cancer survivor study. International Journal of Cancer, 121, 633–640. doi:10.​1002/​ijc.​22658.CrossRefPubMed
14.
go back to reference Tremolada, M., Bonichini, S., Basso, G., & Pillon, M. (2016). Perceived social support and health-related quality of life in AYA cancer survivors and controls. Psycho-Oncology. doi:10.1002/pon.4072.PubMed Tremolada, M., Bonichini, S., Basso, G., & Pillon, M. (2016). Perceived social support and health-related quality of life in AYA cancer survivors and controls. Psycho-Oncology. doi:10.​1002/​pon.​4072.PubMed
15.
go back to reference Barnett, M., McDonnell, G., DeRosa, A., Schuler, T., Philip, E., Peterson, L., et al. (2016). Psychosocial outcomes and interventions among cancer survivors diagnosed during adolescence and young adulthood (AYA): A systematic review. Journal of Cancer Survivorship, 1–18, doi:10.1007/s11764-016-0527-6. Barnett, M., McDonnell, G., DeRosa, A., Schuler, T., Philip, E., Peterson, L., et al. (2016). Psychosocial outcomes and interventions among cancer survivors diagnosed during adolescence and young adulthood (AYA): A systematic review. Journal of Cancer Survivorship, 1–18, doi:10.​1007/​s11764-016-0527-6.
16.
go back to reference Lund, L. W., Winther, J. F., Cederkvist, L., Andersen, K. K., Dalton, S. O., Appel, C. W., et al. (2015). Increased risk of antidepressant use in childhood cancer survivors: A Danish population-based cohort study. European Journal of Cancer, 51, 675–684. doi:10.1016/j.ejca.2015.01.001.CrossRefPubMed Lund, L. W., Winther, J. F., Cederkvist, L., Andersen, K. K., Dalton, S. O., Appel, C. W., et al. (2015). Increased risk of antidepressant use in childhood cancer survivors: A Danish population-based cohort study. European Journal of Cancer, 51, 675–684. doi:10.​1016/​j.​ejca.​2015.​01.​001.CrossRefPubMed
17.
go back to reference Deyell, R. J., Lorenzi, M., Ma, S., Rassekh, S. R., Collet, J.-P., Spinelli, J. J., et al. (2013). Antidepressant use among survivors of childhood, adolescent and young adult cancer: A report of the childhood, adolescent and young adult cancer survivor (CAYACS) research program. Pediatric Blood & Cancer, 60, 816–822. doi:10.1002/pbc.24446.CrossRef Deyell, R. J., Lorenzi, M., Ma, S., Rassekh, S. R., Collet, J.-P., Spinelli, J. J., et al. (2013). Antidepressant use among survivors of childhood, adolescent and young adult cancer: A report of the childhood, adolescent and young adult cancer survivor (CAYACS) research program. Pediatric Blood & Cancer, 60, 816–822. doi:10.​1002/​pbc.​24446.CrossRef
18.
go back to reference Tremolada, M., Bonichini, S., Basso, G., & Pillon, M. (2016). Perceived social support and health-related quality of life in AYA cancer survivors and controls. Psycho-Oncology, 25(12), 1408–1417. doi:10.1002/pon.4072.CrossRefPubMed Tremolada, M., Bonichini, S., Basso, G., & Pillon, M. (2016). Perceived social support and health-related quality of life in AYA cancer survivors and controls. Psycho-Oncology, 25(12), 1408–1417. doi:10.​1002/​pon.​4072.CrossRefPubMed
20.
go back to reference Norway, C. R. o. (2015). Cancer in Norway 2014 - Cancer incidence, mortality, survival and prevalence in Norway. Oslo: Cancer Registry of Norway. Norway, C. R. o. (2015). Cancer in Norway 2014 - Cancer incidence, mortality, survival and prevalence in Norway. Oslo: Cancer Registry of Norway.
21.
go back to reference Varni, J. W., Seid, M., & Rode, C. (1999). The PedsQL™: Measurement model for the pediatric quality of life inventory. Medical Care, 37, 126–139.CrossRefPubMed Varni, J. W., Seid, M., & Rode, C. (1999). The PedsQL™: Measurement model for the pediatric quality of life inventory. Medical Care, 37, 126–139.CrossRefPubMed
22.
go back to reference Varni, J. W., & Limbers, C. A. (2009). The PedsQL™ 4.0 generic core scales young adult version feasibility, reliability and validity in a university student population. Journal of Health Psychology, 14, 611–622. doi:10.1177/1359105309103580.CrossRefPubMed Varni, J. W., & Limbers, C. A. (2009). The PedsQL™ 4.0 generic core scales young adult version feasibility, reliability and validity in a university student population. Journal of Health Psychology, 14, 611–622. doi:10.​1177/​1359105309103580​.CrossRefPubMed
23.
go back to reference Reinfjell, T., Diseth, T. H., Veenstra, M., & Vikan, A. (2006). Measuring health-related quality of life in young adolescents: Reliability and validity in the Norwegian version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL) generic core scales. Health and Quality of Life Outcomes, 4, 61. doi:10.1186/1477-7525-4-61.CrossRefPubMedPubMedCentral Reinfjell, T., Diseth, T. H., Veenstra, M., & Vikan, A. (2006). Measuring health-related quality of life in young adolescents: Reliability and validity in the Norwegian version of the Pediatric Quality of Life Inventory™ 4.0 (PedsQL) generic core scales. Health and Quality of Life Outcomes, 4, 61. doi:10.​1186/​1477-7525-4-61.CrossRefPubMedPubMedCentral
24.
go back to reference Lien, L., Haavet, O. R., & Dalgard, F. (2010). Do mental health and behavioural problems of early menarche persist into late adolescence? A three year follow-up study among adolescent girls in Oslo, Norway. Social Science & Medicine, 71, 529–533. doi:10.1016/j.socscimed.2010.05.003.CrossRef Lien, L., Haavet, O. R., & Dalgard, F. (2010). Do mental health and behavioural problems of early menarche persist into late adolescence? A three year follow-up study among adolescent girls in Oslo, Norway. Social Science & Medicine, 71, 529–533. doi:10.​1016/​j.​socscimed.​2010.​05.​003.CrossRef
25.
go back to reference Strand, B. H., Dalgard, O. S., Tambs, K., & Rognerud, M. (2003). Measuring the mental health status of the Norwegian population: A comparison of the instruments SCL-25, SCL-10, SCL-5 and MHI-5 (SF-36). Nordic Journal of Psychiatry, 57, 113–118. doi:10.1080/08039480310000932.CrossRefPubMed Strand, B. H., Dalgard, O. S., Tambs, K., & Rognerud, M. (2003). Measuring the mental health status of the Norwegian population: A comparison of the instruments SCL-25, SCL-10, SCL-5 and MHI-5 (SF-36). Nordic Journal of Psychiatry, 57, 113–118. doi:10.​1080/​0803948031000093​2.CrossRefPubMed
26.
go back to reference Field, A. (2013). Discovering Statistics Using IBM SPSS Statistics (4th edn.). London: SAGE Publications Ltd. Field, A. (2013). Discovering Statistics Using IBM SPSS Statistics (4th edn.). London: SAGE Publications Ltd.
28.
go back to reference Schwartz, C. E., & Sprangers, M. A. G. (1999). Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research. Social Science & Medicine, 48, 1531–1548. doi:10.1016/S0277-9536(99)00047-7.CrossRef Schwartz, C. E., & Sprangers, M. A. G. (1999). Methodological approaches for assessing response shift in longitudinal health-related quality-of-life research. Social Science & Medicine, 48, 1531–1548. doi:10.​1016/​S0277-9536(99)00047-7.CrossRef
29.
31.
go back to reference Nedregård, T., & Olsen, R. (2014). SHoT 2014 Studentenes helse- og trivselsundersøkelse (p. 142). Trondheim/Oslo: TNS Gallup. Nedregård, T., & Olsen, R. (2014). SHoT 2014 Studentenes helse- og trivselsundersøkelse (p. 142). Trondheim/Oslo: TNS Gallup.
32.
go back to reference Hudson, M. M., Oeffinger, K. C., Jones, K., Brinkman, T. M., Krull, K. R., Mulrooney, D. A., et al. (2015). Age-dependent changes in health status in the childhood cancer survivor cohort. Journal of Clinical Oncology, 33, 479–491. doi:10.1200/JCO.2014.57.4863.CrossRefPubMed Hudson, M. M., Oeffinger, K. C., Jones, K., Brinkman, T. M., Krull, K. R., Mulrooney, D. A., et al. (2015). Age-dependent changes in health status in the childhood cancer survivor cohort. Journal of Clinical Oncology, 33, 479–491. doi:10.​1200/​JCO.​2014.​57.​4863.CrossRefPubMed
33.
go back to reference Smith, A. W., Bellizzi, K. M., Keegan, T. H. M., Zebrack, B., Chen, V. W., Neale, A. V., et al. (2013). Health-related quality of life of adolescent and young adult patients with cancer in the United States: The adolescent and young adult health outcomes and patient experience study. Journal of Clinical Oncology. doi:10.1200/JCO.2012.47.3173. Smith, A. W., Bellizzi, K. M., Keegan, T. H. M., Zebrack, B., Chen, V. W., Neale, A. V., et al. (2013). Health-related quality of life of adolescent and young adult patients with cancer in the United States: The adolescent and young adult health outcomes and patient experience study. Journal of Clinical Oncology. doi:10.​1200/​JCO.​2012.​47.​3173.
34.
go back to reference Gunnes, M. W., Lie, R. T., Bjørge, T., Syse, A., Ruud, E., Wesenberg, F., et al. (2016). Economic independence in survivors of cancer diagnosed at a young age: A Norwegian national cohort study. Cancer. doi:10.1002/cncr.30253.PubMedPubMedCentral Gunnes, M. W., Lie, R. T., Bjørge, T., Syse, A., Ruud, E., Wesenberg, F., et al. (2016). Economic independence in survivors of cancer diagnosed at a young age: A Norwegian national cohort study. Cancer. doi:10.​1002/​cncr.​30253.PubMedPubMedCentral
Metadata
Title
Health-related quality of life and psychological distress in young adult survivors of childhood cancer and their association with treatment, education, and demographic factors
Authors
Janne F. Halvorsen
Anne Mari Sund
Lonnie Zeltzer
Marian Ådnanes
Heidi Jensberg
Terje A. Eikemo
Bendik Lund
Odin Hjemdal
Trude Reinfjell
Publication date
01-02-2018
Publisher
Springer International Publishing
Published in
Quality of Life Research / Issue 2/2018
Print ISSN: 0962-9343
Electronic ISSN: 1573-2649
DOI
https://doi.org/10.1007/s11136-017-1716-0

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