Occupational status among adult survivors following allogeneic stem cell transplantation in childhood
Corresponding Author
Jeanette Winterling RN, PhD
University Hospital Nurse
Division of Nursing, Department of Neurobiology, Care Sciences, and Society, Karolinska Institutet, Stockholm, Sweden
Center of Haematology, Karolinska University Hospital, Stockholm, Sweden
Correspondence
Jeanette Winterling, Division of Nursing, Department of Neurobiology, Care Sciences, and Society, Karolinska Institutet, Stockholm, Sweden
Email: [email protected]
Search for more papers by this authorEva Johansson RN, PhD, Associate Professor
Senior Lecturer
Division of Nursing, Department of Neurobiology, Care Sciences, and Society, Karolinska Institutet, Stockholm, Sweden
Deceased.Search for more papers by this authorLena Wettergren RN, PhD, Associate Professor
Senior Lecturer
Division of Nursing, Department of Neurobiology, Care Sciences, and Society, Karolinska Institutet, Stockholm, Sweden
Search for more papers by this authorPer Ljungman MD, PhD, Professor
Center of Haematology, Karolinska University Hospital, Stockholm, Sweden
Division of Haematology, Department of Medicine, Karolinska Institutet, Stockholm, Sweden
Search for more papers by this authorKristina Alexanderson BSc, PhD, Professor
Division of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden
Search for more papers by this authorCorresponding Author
Jeanette Winterling RN, PhD
University Hospital Nurse
Division of Nursing, Department of Neurobiology, Care Sciences, and Society, Karolinska Institutet, Stockholm, Sweden
Center of Haematology, Karolinska University Hospital, Stockholm, Sweden
Correspondence
Jeanette Winterling, Division of Nursing, Department of Neurobiology, Care Sciences, and Society, Karolinska Institutet, Stockholm, Sweden
Email: [email protected]
Search for more papers by this authorEva Johansson RN, PhD, Associate Professor
Senior Lecturer
Division of Nursing, Department of Neurobiology, Care Sciences, and Society, Karolinska Institutet, Stockholm, Sweden
Deceased.Search for more papers by this authorLena Wettergren RN, PhD, Associate Professor
Senior Lecturer
Division of Nursing, Department of Neurobiology, Care Sciences, and Society, Karolinska Institutet, Stockholm, Sweden
Search for more papers by this authorPer Ljungman MD, PhD, Professor
Center of Haematology, Karolinska University Hospital, Stockholm, Sweden
Division of Haematology, Department of Medicine, Karolinska Institutet, Stockholm, Sweden
Search for more papers by this authorKristina Alexanderson BSc, PhD, Professor
Division of Insurance Medicine, Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden
Search for more papers by this authorFunding information
This study was financially supported by the Cancer Research Foundations of Radiumhemmet, the Swedish Blood Cancer Society, the Swedish Research Council for Health and Working Life and Welfare
Abstract
This study examined occupational status and factors associated with sick leave and disability pension among adult long-term survivors previously treated with allogeneic stem cell transplantation (allo-SCT) during childhood. Moreover, occupational status was compared to that of a reference group. Data were collected with questionnaires and from medical records. The SCT group included 59 adults (18–45 years old: response rate 63%) treated with allo-SCT in childhood with a median of 17 (range 3–28) years earlier. The reference group included 296 individuals randomly selected from the general population. The results show that 54% of the long-term survivors were working part- or full-time and that 19% were on sick leave or disability pension. A larger proportion of the SCT group was on sick leave or disability pension (19% vs. 6%: p < .001) than of the reference group. The logistic regression analysis revealed that being on sick leave or disability pension among long-term survivors was associated with late effects related to the allo-SCT (OR 12.28: 95% CI 1.3–111.6: p = .03). The results underscore that long-term survivors’ engagement in paid work is influenced many years after treatment and highlights the need to include vocational assistance in the rehabilitation following allo-SCT in childhood.
REFERENCES
- Ahomaki, R., Harila-Saari, A., Matomaki, J., & Lahteenmaki, P. M. (2017). Non-graduation after comprehensive school, and early retirement but not unemployment are prominent in childhood cancer survivors-a Finnish registry-based study. Journal of Cancer Survivivorship, 11, 284–294. https://doi.org/10.1007/s11764-016-0574-z
- Alexanderson, K., & Nordlund, A. (2004). Chapter 1. Aim, background, key concepts, regulations, and reccurent statistics. Scandinavian Journal of Public Health Supplement, 32, 12–30. https://doi.org/10.1080/14034950410021808
10.1080/14034950410021808 Google Scholar
- Armenian, S. H., Sun, C. L., Kawashima, T., Arora, M., Leisenring, W., Sklar, C. A., … Bhatia, S. (2011). Long-term health-related outcomes in survivors of childhood cancer treated with HSCT versus conventional therapy: A report from the Bone Marrow Transplant Survivor Study (BMTSS) and Childhood Cancer Survivor Study (CCSS). Blood, 118, 1413–1420. https://doi.org/10.1182/blood-2011-01-331835
- Baker, K. S., Bresters, D., & Sande, J. E. (2010). The burden of cure: Long-term side effects following hematopoietic stem cell transplantation (HSCT) in children. Pediatric Clinics of North America, 57, 323–342. https://doi.org/10.1016/j.pcl.2009.11.008
- Berbis, J., Reggio, C., Michel, G., Chastagner, P., Bertrand, Y., Kanold, J., … Auquier, P. (2016). Employment in French young adult survivors of childhood leukemia: An LEA study (for Leucemies de l'Enfant et de l'Adolescent-childhood and adolescent leukemia). Journal of Cancer Survivorship: Research and Practice, 10, 1058–1066. https://doi.org/10.1007/s11764-016-0549-0
- Bjelland, I., Dahl, A. A., Haug, T. T., & Neckelmann, D. (2002). The validity of the hospital anxiety and depression scale. An updated literature review. Journal of Psychosomatic Reserach, 52, 69–77. https://doi.org/10.1016/S0022-3999(01)00296-3
- Boman, K. K., Lindblad, F., & Hjern, A. (2010). Long-term outcomes of childhood cancer survivors in Sweden: A population-based study of education, employment, and income. Cancer, 116, 1385–1391. https://doi.org/10.1002/cncr.24840
- Cupit, M. C., Duncan, C., Savani, B. N., & Hashmi, S. K. (2016). Childhood to adult transition and long-term follow-up after blood and marrow transplantation. Bone Marrow Transplantation, 51, 176–181. https://doi.org/10.1038/bmt.2015.228
- De Boer, A. G., Taskila, T. K., Tamminga, S. J., Feuerstein, M., Frings-Dresen, M. H., & Verbeek, J. H. (2015). Interventions to enhance return-to-work for cancer patients. The Cochrane Database Systematic Reviews, 9, CD007569.
- De Boer, A. G., Verbeek, J. H., & Van Dijk, F. J. (2006). Adult survivors of childhood cancer and unemployment: A metaanalysis. Cancer, 107, 1–11. https://doi.org/10.1002/(ISSN)1097-0142
- Dieluweit, U., Debatin, K. M., Grabow, D., Kaatsch, P., Peter, R., Seitz, D. C., & Goldbeck, L. (2011). Educational and vocational achievement among long-term survivors of adolescent cancer in Germany. Pediatric Blood & Cancer, 56, 432–438. https://doi.org/10.1002/pbc.22806
- Dowling, E., Yabroff, K. R., Mariotto, A., Mcneel, T., Zeruto, C., & Buckman, D. (2010). Burden of illness in adult survivors of childhood cancers: Findings from a population-based national sample. Cancer, 116, 3712–3721. https://doi.org/10.1002/cncr.25141
- D'souza, A., Pasquini, M., & Zhu, X. (2016). Current use and outcome of hematopoietic stem cell transplantation: CIBMTR summary slides. Available from: http://www.cibmtr.org (cited 2016).
- Dumas, A., Berger, C., Auquier, P., Michel, G., Fresneau, B., Setcheou Allodji, R., … De Vathaire, F. (2016). Educational and occupational outcomes of childhood cancer survivors 30 years after diagnosis: A French cohort study. British Journal of Cancer, 114, 1060–1068. https://doi.org/10.1038/bjc.2016.62
- Ferry, C., Gemayel, G., Rocha, V., Labopin, M., Esperou, H., Robin, M., … Socie, G. (2007). Long-term outcomes after allogeneic stem cell transplantation for children with hematological malignancies. Bone Marrow Transplantation, 40, 219–224. https://doi.org/10.1038/sj.bmt.1705710
- Freycon, F., Trombert-Paviot, B., Casagranda, L., Frappaz, D., Mialou, V., Armari-Alla, C., … ARCERRA. (2014). Academic difficulties and occupational outcomes of adult survivors of childhood leukemia who have undergone allogeneic hematopoietic stem cell transplantation and fractionated total body irradiation conditioning. Pediatric Hematology and Oncology, 31, 225–236. https://doi.org/10.3109/08880018.2013.829541
- Gerhardt, C. A., Dixon, M., Miller, K., Vannatta, K., Valerius, K. S., Correll, J., & Noll, R. B. (2007). Educational and occupational outcomes among survivors of childhood cancer during the transition to emerging adulthood. Journal of Developmental and Behavioural Pediatrics, 28, 448–455. https://doi.org/10.1097/DBP.0b013e31811ff8e1
- Hayden, P. J., Keogh, F., Ni Conghaile, M., Carroll, M., Crowley, M., Fitzsimon, N., … Mccann, S. R. (2004). A single-centre assessment of long-term quality-of-life status after sibling allogeneic stem cell transplantation for chronic myeloid leukaemia in first chronic phase. Bone Marrow Transplantation, 34, 545–556. https://doi.org/10.1038/sj.bmt.1704638
- Helder, D. I., Bakker, B., De Heer, P., Van Der Veen, F., Vossen, J. M., Wit, J. M., & Kaptein, A. A. (2004). Quality of life in adults following bone marrow transplantation during childhood. Bone Marrow Transplantion, 33, 329–336. https://doi.org/10.1038/sj.bmt.1704345
- Hensel, M., Egerer, G., Schneeweiss, A., Goldschmidt, H., & Ho, A. D. (2002). Quality of life and rehabilitation in social and professional life after autologous stem cell transplantation. Annals of Oncology, 13, 209–217. https://doi.org/10.1093/annonc/mdf031
- Hudson, M. M., Mertens, A. C., Yasui, Y., Hobbie, W., Chen, H., Gurney, J. G., … Oeffinger, K. C. (2003). Health status of adult long-term survivors of childhood cancer: A report from the Childhood Cancer Survivor Study. JAMA, 290, 1583–1592. https://doi.org/10.1001/jama.290.12.1583
- Ishida, Y., Hayashi, M., Inoue, F., & Ozawa, M. (2014). Recent employment trend of childhood cancer survivors in Japan: A cross-sectional survey. International Journal of Clinical Oncology, 19, 973–981. https://doi.org/10.1007/s10147-013-0656-0
- Ishida, Y., Honda, M., Kamibeppu, K., Ozono, S., Okamura, J., Asami, K., … Horibe, K. (2011). Social outcomes and quality of life of childhood cancer survivors in Japan: A cross-sectional study on marriage, education, employment and health-related QOL (SF-36). International Journal of Hematology, 93, 633–644. https://doi.org/10.1007/s12185-011-0843-6
- Jensen, J. N., Gotzsche, F., Heilmann, C., Sengelov, H., Adamsen, L., Christensen, K. B., & Larsen, H. B. (2016). Physical and emotional well-being of survivors of childhood and young adult allo-SCT - A Danish national cohort study. Pediatric Transplantation, 20, 697–706. https://doi.org/10.1111/petr.12713
- Jesudas, R., Malesky, A., Chu, R., Fischer, H., & Kamat, D. (2013). Reviewing the follow-up care of pediatric patients’ status post-hematopoietic stem cell transplantation for the primary care pediatrician. Clinical Pediatrics, 52, 487–495. https://doi.org/10.1177/0009922813483361
- Johannesen, T. B., Langmark, F., Wesenberg, F., & Lote, K. (2007). Prevalence of Norwegian patients diagnosed with childhood cancer, their working ability and need of health insurance benefits. Acta Oncologica, 46, 60–66. https://doi.org/10.1080/02841860600774026
- Johannsdottir, I. M., Hjermstad, M. J., Moum, T., Wesenberg, F., Hjorth, L., Schroder, H., … Loge, J. H. (2010). Social outcomes in young adult survivors of low incidence childhood cancers. Journal of Cancer Survivivorship: Research and Practice, 4, 110–118. https://doi.org/10.1007/s11764-009-0112-3
- Kirchhoff, A. C., Krull, K. R., Ness, K. K., Armstrong, G. T., Park, E. R., Stovall, M., … Leisenring, W. (2011). Physical, mental, and neurocognitive status and employment outcomes in the childhood cancer survivor study cohort. Cancer Epidemiology Biomarkers and Prevention, 20, 1838–1849. https://doi.org/10.1158/1055-9965.EPI-11-0239
- Kirchhoff, A. C., Krull, K. R., Ness, K. K., Park, E. R., Oeffinger, K. C., Hudson, M. M., … Leisenring, W. (2011). Occupational outcomes of adult childhood cancer survivors: A report from the childhood cancer survivor study. Cancer, 117, 3033–3044. https://doi.org/10.1002/cncr.25867
- Kirchhoff, A. C., Leisenring, W., Krull, K. R., Ness, K. K., Friedman, D. L., Armstrong, G. T., … Wickizer, T. (2010). Unemployment among adult survivors of childhood cancer: A report from the childhood cancer survivor study. Medical Care, 48, 1015–1025. https://doi.org/10.1097/MLR.0b013e3181eaf880
- Langeveld, N. E., Grootenhuis, M. A., Voute, P. A., De Haan, R. J., & Van Den Bos, C. (2004). Quality of life, self-esteem and worries in young adult survivors of childhood cancer. Psycho-Oncology, 13, 867–881. https://doi.org/10.1002/pon.800
- Lof, C. M., Winiarski, J., Giesecke, A., Ljungman, P., & Forinder, U. (2009). Health-related quality of life in adult survivors after paediatric allo-SCT. Bone Marrow Transplantation, 43, 461–468. https://doi.org/10.1038/bmt.2008.338
- Lof, C. M., Winiarski, J., Ljungman, P., & Forinder, U. (2011). The socioeconomic and psychosocial circumstances of adult long-term survivors of hematopoietic stem cell transplantation in childhood. Pediatric Transplantation, 15, 691–698. https://doi.org/10.1111/j.1399-3046.2011.01537.x
- Majhail, N. S., & Rizzo, J. D. (2013). Surviving the cure: Long term followup of hematopoietic cell transplant recipients. Bone Marrow Transplantion, 48, 1145–1151. https://doi.org/10.1038/bmt.2012.258
- Mindell, J. S., Giampaoli, S., Goesswald, A., Kamtsiuris, P., Mann, C., Mannisto, S., … HES Response Rate Group. (2015). Sample selection, recruitment and participation rates in health examination surveys in Europe–experience from seven national surveys. BMC Medical Research Methodology, 15, 78. https://doi.org/10.1186/s12874-015-0072-4
- Oeffinger, K. C., Mertens, A. C., Sklar, C. A., Kawashima, T., Hudson, M. M., Meadows, A. T., … Robison, L. L. (2006). Chronic health conditions in adult survivors of childhood cancer. New England Journal of Medicine, 355, 1572–1582. https://doi.org/10.1056/NEJMsa060185
- Pang, J. W., Friedman, D. L., Whitton, J. A., Stovall, M., Mertens, A. C., Robison, L. L., & Weiss, N. S. (2008). Employment status among adult survivors in the Childhood Cancer Survivor Study. Pediatric Blood & Cancer, 50, 104–110. https://doi.org/10.1002/pbc.21226
- Petersson, L. M., Nilsson, M. I., Alexanderson, K., Olsson, M., & Wennman-Larsen, A. (2012). How do women value work shortly after breast cancer surgery and are their valuations associated with being on sick leave? Journal of Occupational Rehabililitation, 23, 391–399.
- Petersson, L. M., Wennman-Larsen, A., Nilsson, M., Olsson, M., & Alexanderson, K. (2011). Work situation and sickness absence in the initial period after breast cancer surgery. Acta Oncologica, 50, 282–288. https://doi.org/10.3109/0284186X.2010.533191
- Phillips-Salimi, C. R., Lommel, K., & Andrykowski, M. A. (2012). Physical and mental health status and health behaviors of childhood cancer survivors: Findings from the 2009 BRFSS survey. Pediatric Blood & Cancer, 58, 964–970. https://doi.org/10.1002/pbc.23359
- Pui, C. H., Cheng, C., Leung, W., Rai, S. N., Rivera, G. K., Sandlund, J. T., … Hudson, M. M. (2003). Extended follow-up of long-term survivors of childhood acute lymphoblastic leukemia. New England Journal of Medicine, 349, 640–649. https://doi.org/10.1056/NEJMoa035091
- Remberger, M., Ackefors, M., Berglund, S., Blennow, O., Dahllof, G., Dlugosz, A., … Ringden, O. (2011). Improved survival after allogeneic hematopoietic stem cell transplantation in recent years. A single-center study. Biology of Blood Marrow Transplantation, 17, 1688–1697. https://doi.org/10.1016/j.bbmt.2011.05.001
- Sanders, J. E., Hoffmeister, P. A., Storer, B. E., Appelbaum, F. R., Storb, R. F., & Syrjala, K. L. (2010). The quality of life of adult survivors of childhood hematopoietic cell transplant. Bone Marrow Transplantion, 45, 746–754. https://doi.org/10.1038/bmt.2009.224
- Sanders, J. E., Woolfrey, A. E., Carpenter, P. A., Storer, B. E., Hoffmeister, P. A., Deeg, H. J., … Storb, R. F. (2011). Late effects among pediatric patients followed for nearly 4 decades after transplantation for severe aplastic anemia. Blood, 118, 1421–1428. https://doi.org/10.1182/blood-2011-02-334953
- Social Insurance Agency. (2016). Social Insurance in Figures 2016. Retrived from: https://www.forsakringskassan.se/statistik/social-insurance-in-figures (cited 2016).
- Spelten, E. R., Sprangers, M. A., & Verbeek, J. H. (2002). Factors reported to influence the return to work of cancer survivors: A literature review. Psycho-Oncology, 11, 124–131. https://doi.org/10.1002/(ISSN)1099-1611
- Sundberg, K. K., Doukkali, E., Lampic, C., Eriksson, L. E., Arvidson, J., & Wettergren, L. (2010). Long-term survivors of childhood cancer report quality of life and health status in parity with a comparison group. Pediatric Blood & Cancer, 55, 337–343. https://doi.org/10.1002/pbc.22492
- Sundberg, K. K., Wettergren, L., Frisk, P., & Arvidson, J. (2013). Self-reported quality of life in long-term survivors of childhood lymphoblastic malignancy treated with hematopoietic stem cell transplantation versus conventional therapy. Pediatric Blood & Cancer, 60, 1382–1387. https://doi.org/10.1002/pbc.24519
- Syrjala, K. L., Martin, P. J., & Lee, S. J. (2012). Delivering care to long-term adult survivors of hematopoietic cell transplantation. Journal of Clinical Oncology, 30, 3746–3751. https://doi.org/10.1200/JCO.2012.42.3038
- Tanzi, E. M. (2011). Health-related quality of life of hematopoietic stem cell transplant childhood survivors: State of the science. Journal of Pediatric Oncology Nursing, 28, 191–202. https://doi.org/10.1177/1043454211408100
- Visentin, S., Auquier, P., Bertrand, Y., Baruchel, A., Tabone, M. D., Pochon, C., … Michel, G. (2016). The impact of donor type on long-term health status and quality of life after allogeneic hematopoietic stem cell transplantation for childhood acute leukemia: A Leucemie de l'Enfant et de L'Adolescent Study. Biology Blood Marrow Transplantation, 22, 2003–2010. https://doi.org/10.1016/j.bbmt.2016.08.004
- Ware, J. E. .Jr, & Sherbourne, C. D. (1992). The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Medical Care, 30, 473–483. https://doi.org/10.1097/00005650-199206000-00002
- Wiberg, M., Friberg, E., Stenbeck, M., Alexanderson, K., Norlund, A., Hillert, J., & Tinghog, P. (2015). Sources and level of income among individuals with multiple sclerosis compared to the general population: A nationwide population-based study. Multiple Sclerosis Journal, 21, 1730–1741. https://doi.org/10.1177/1352458515570767
- Willard, V. W., Leung, W., Huang, Q., Zhang, H., & Phipps, S. (2014). Cognitive outcome after pediatric stem-cell transplantation: Impact of age and total-body irradiation. Journal of Clinical Oncology, 32, 3982–3988. https://doi.org/10.1200/JCO.2014.56.2223
- Winterling, J., Johansson, E., Wennman-Larsen, A., Petersson, L. M., Ljungman, P., & Alexanderson, K. (2014). Occupational status among adult survivors following allo-SCT. Bone Marrow Transplantation, 49, 836–842. https://doi.org/10.1038/bmt.2014.26
- Zigmond, A., & Snaith, R. (1983). The hospital anxiety and depression scale. Acta Psychiatrica Scandinavia, 67, 361–370. https://doi.org/10.1111/j.1600-0447.1983.tb09716.x