No votes yet
Online Exclusive Article

Fatigue in Young Survivors of Extracranial Childhood Cancer: A Finnish Nationwide Survey

Susanna Mört
Päivi M. Lähteenmäki
Jaakko Matomäki
Toivo T. Salmi
Sanna Salanterä
ONF 2011, 38(6), E445-E454 DOI: 10.1188/11.ONF.E445-E454

Purpose/Objectives: To evaluate self-reports of fatigue by young cancer survivors (aged 11-18 years), to compare young survivors' fatigue scores with the scores of a healthy control group and of the parent proxy evaluation, and to analyze whether demographic or disease-related factors are associated with young survivors' fatigue.

Design: Cross-sectional quantitative study.

Setting: An urban hospital in southwestern Finland.

Sample: 384 survivors diagnosed with an extracranial malignancy at age 16 or younger, who have survived four or more years postdiagnosis, and who are free of cancer. General matched population controls were randomly selected from the Finnish Population Registry.

Methods: Demographic data and a self-report written fatigue questionnaire.

Main Research Variables: Total fatigue (TF), general fatigue (GF), sleep or rest fatigue (SF), and cognitive fatigue.

Findings: The control populations reported significantly more issues with TF, GF, and SF than did the survivor population. In survivors, older age, the need for remedial education at school, and a sarcoma diagnosis were associated with increasing fatigue, whereas female gender, better school grades, and greater health-related quality-of-life (HRQOL) scores were associated with lower fatigue. The study variables explained 49%-65% of the variation in fatigue scores.

Conclusions: Although survivors and their matched controls seem to have similar fatigue, subgroups of survivors do experience excessive fatigue, which may have an impact on their HRQOL.

Implications for Nursing: This study increases the knowledge about fatigue levels of young survivors of extracranial malignancies and identifies the need for instruments specifically designed to assess fatigue in this population. The healthcare team should pay attention to the fatigue level of young survivors, particularly SF.


Aksnes, L.H., Hall, K.S., Jebsen, N., Fosså, S.D., & Dahl, A.A. (2007). Young survivors of malignant bone tumours in the extremities: A comparative study of quality of life, fatigue and mental distress. <i>Supportive Care in Cancer, 15</i>, 1087-1096. doi:10.1007/s00520-007-0227-x

Carskadon, M.A., Acebo, C., & Jenni, O.G. (2004). Regulation of adolescent sleep: Implications for behavior. <i>Annals of the New York Academy of Sciences, 1021</i>, 276-291. doi:10.1196/annals.1308.032

Dahl, R.E., & Lewin, D.S. (2002). Pathways to adolescent health: Sleep regulation and behaviour. <i>Journal of Adolescent Health, 31</i>(Suppl. 6), 175-184. doi:10.1016/S1054-139X(02)00506-2

Davies, B., Whitsett, S.F., Bruce, A., & McCarthy, P. (2002). A typology of fatigue in children with cancer. <i>Journal of Pediatric Oncology Nursing, 19</i>, 12-21. doi:10.1053/jpon.2002.30012

Dewald, J.F., Meijer, A.M., Oort, F.J., Kerkhof, G.A., & Bögels, S.M. (2010). The influence of sleep quality, sleep duration and sleepiness on school performance in children and adolescents: A meta-analytic review. <i>Sleep Medicine Reviews 14</i>, 179-189. doi:10.1016/j.smrv.2009.10.004

Eddy, L., & Cruz, M. (2007). The relationship between fatigue and quality of life in children with chronic health problems: A systematic review. <i>Journal of Specialists in Pediatric Nursing, 12</i>, 105-114. doi:10.1111/j.1744-6155.2007.00099.x

Gatta, G., Zigon, G., Capocaccia, R., Coebergh, J.W., Desandes, E., Kaatsch, P., … Stiller, C.A. (2009). Survival of European children and young adults with cancer diagnosed 1995-2002. <i>European Journal of Cancer, 45</i>, 992-1005. doi:10.1016/j.ejca.2008.11.042

Gibson, F., Garnett, M., Richardson, A., Edwards, J., & Sepion, B. (2005). Heavy to carry: A survey of parents' and healthcare professionals' perceptions of cancer-related fatigue in children and young people. <i>Cancer Nursing, 28</i>, 27-35. doi:10.1097/00002820-200501000-00004

Hinds, P.S., Hockenberry-Eaton, M., Gilger, E., Kline, N., Burleson, C., Bottomley, S., & Quargnenti, A. (1999). Comparing patient, parent, and staff descriptions of fatigue in pediatric oncology patients. <i>Cancer Nursing, 22</i>, 277-289. doi:10.1097/00002820-199908000-00004

Hockenberry, M.J., Hinds, P.S., Barrera, P., Bryant, R., Adams-McNeill, J., Hooke, C., … Manteuffel, B. (2003). Three instruments to assess fatigue in children with cancer: The child, parent and staff perspectives. <i>Journal of Pain and Symptom Management, 25</i>, 319-328. doi:10.1016/S0885-3924(02)00680-2

Hockenberry-Eaton, M., Hinds, P., Howard, V., Gattuso, J., O'Neill, J.B., Alcoser, P., … Euell, K. (1999). Developing a conceptual model for fatigue in children. <i>European Journal of Oncology Nursing, 3</i>, 5-11. doi:10.1016/1462-3889(91)80005-7

Hockenberry-Eaton, M., Hinds, P.S., Alcoser, P., O'Neill, J.B., Euell, K., Howard, V., … Taylor, J. (1998). Fatigue in children and adolescents with cancer. <i>Journal of Pediatric Oncology Nursing, 15</i>, 172-182. doi:10.1177/104345429801500306

Johnston, C.A., Steele, R.G., Herrera, E.A., & Phipps, S. (2003). Parent and child reporting of negative life events: Discrepancy and agreement across pediatric samples. <i>Journal of Pediatric Psychology, 28</i>, 579-588. doi:10.1093/jpepsy/jsg048

Langeveld, N., Ubbink, M., & Smets, E. (2000). "I don't have any energy:" The experience of fatigue in young adult survivors of childhood cancer. <i>European Journal of Oncology Nursing, 4</i>, 20-28. doi:10.1054/ejon.1999.0063

Langeveld, N.E., Grootenhuis, M.A., Voûte, P.A., de Haan, R.J., & van den Bos, C. (2003). No excess fatigue in young adult survivors of childhood cancer. <i>European Journal of Cancer, 39</i>, 204-214. doi:10.1016/S0959-8049(02)00629-9

McCabe, M. (2009). Fatigue in children with long-term conditions: An evolutionary concept analysis. <i>Journal of Advanced Nursing, 65</i>, 1735-1745. doi:10.1111/j.1365-2648.2009.05046.x

Mears, C.J., Taylor, R.R., Jordan, K.M., & Binns, H. (2004). Socio-demographic and symptom correlates of fatigue in an adolescent primary care sample. <i>Journal of Adolescent Health, 35</i>, E21-E26.

Meeske, K., Katz, E.R., Palmer, S.N., Burnwinkle, T., & Varni, J.W. (2004). Parent proxy-reported health-related quality of life and fatigue in pediatric patients diagnosed with brain tumors and acute lymphoblastic leukemia. <i>Cancer, 101</i>, 2116-2125. doi:10.1002/cncr.20609

Meeske, K.A., Patel, S.K., Palmer, S.N., Nelson, M.B., & Parow, A.M. (2007). Factors associated with health-related quality of life in pediatric cancer survivors. <i>Pediatric Blood and Cancer, 49</i>, 298-305. doi:10.1002/pbc.20923

Mulrooney, D.A., Ness, K.K., Neglia, J.P., Whitton, J.A., Green, D.M., Zeltzer, L.K., … Mertens, A.C. (2008). Fatigue and sleep disturbance in adult survivors of childhood cancer: A report from the Childhood Cancer Survivor Study (CCSS). <i>Sleep, 31</i>, 271-281.

Parsons, S.K., & Brown, A.P. (1998). Evaluation of quality of life of childhood cancer survivors: A methodological conundrum. <i>Medical and Pediatric Oncology 1</i>(Suppl. 1), 46-53. doi:10.1002/(SICI)1096-911X(1998)30:1+<46::AID-MPO7>3.0.CO;2-X

Perdikaris, P., Merkouris, A., Patiraki, E., Papadatou, D., Vasilatou-Kosmidis, H., & Matziou, V. (2008). Changes in children's fatigue during the course of treatment for paediatric cancer. <i>International Nursing Review, 55,</i> 412-419. doi:10.1111/j.1466-7657.2008.00644.x

Ruland, C.M., Hamilton, G.A., & Schjødt-Osmo, B. (2009). The complexity of symptoms and problems experienced in children with cancer: A review of the literature. <i>Journal of Pain and Symptom Management, 37</i>, 403-418. doi:10.1016/j.jpainsymman.2008.03.009

Servaes, P., Verhagen, C., & Bleijenberg, G. (2002). Fatigue in cancer patients during and after treatment: Prevalence, correlates and interventions. <i>European Journal of Cancer, 38</i>, 27-43. doi:10.1016/S0959-8049(01)00332-X

Sundberg, K.K., Lampic, C., Björk, O., Arvidson, J., & Wettergren, L. (2009). Positive and negative consequences of childhood cancer influencing the lives of young adults. <i>European Journal of Oncology Nursing, 13</i>, 164-170. doi:10.1016/j.ejon.2008.05.009

ter Wolbeek, M., van Doornen, L.J.P., Kavelaars, A., & Heijnen, C.J. (2006). Severe fatigue in adolescents: A common phenomenon? <i>Pediatrics, 117</i>, E1078-E1086. doi:10.1542/peds.2005-2575

Varni, J., Seid, M., & Rode, C.A. (1999). The PedsQL: Measurement model for the pediatric quality of life inventory. <i>Medical Care, 37</i>, 126-139. doi:10.1097/00005650-199902000-00003

Varni, J.W., Burwinkle, T.M., Katz, E.R., Meeske, K., & Dickinson, P. (2002). The PedsQL in pediatric cancer: Reliability and validity of the Pediatric Quality of Life Inventory Generic Core Scales, Multidimensional Fatigue Scale, and Cancer Module. <i>Cancer, 94</i>, 2090-2106. doi:10.1002/cncr.10428

Whitehead, L. (2009). The measurement of fatigue in chronic illness: A systematic review of unidimensional and multidimensional fatigue measures. <i>Journal of Pain and Symptom Management, 37</i>, 107-128. doi:10.1016/j.jpainsymman.2007.08.019

Whitsett, S.F., Gudmundsdottir, M., Davies, B., McCarthy, P., & Friedman, D. (2008). Chemotherapy-related fatigue in childhood cancer: Correlates, consequences, and coping strategies. <i>Journal of Pediatric Oncology Nursing, 25</i>, 86-96. doi:10.1177/1043454208315546

Wolfson, A.R., & Carskadon, M.A. (1998). Sleep schedules and daytime functioning in adolescents. <i>Child Development, 69</i>, 875-887.

Woodgate, R.L. (2008). Feeling states: A new approach to understanding how children and adolescents with cancer experience symptoms. <i>Cancer Nursing, 31</i>, 229-238. doi:10.1097/01.NCC.0000305731.95839.ca

Zebrack, B.J., & Chesler, M.A. (2002). Quality of life in childhood cancer survivors. <i>Psycho-Oncology, 11</i>, 132-141. doi:10.1002/pon.569

Zelter, L.K., Chen, E., Weiss, R., Guo, M.D., Robison, L.L., & Meatdows, A.T. (1997). Comparison of psychological outcome in adult survivors of childhood acute lymphoblastic leukemia versus sibling controls: A cooperative Children's Cancer Group and National Institutes of Health study. <i>Journal of Clinical Oncology, 15</i>, 547-556.