Abstract
Objective
The study’s objective was to summarize the psychometric evaluation of self-report symptom instruments used in children with cancer younger than 8 years of age.
Methods
We conducted electronic searches of Ovid Medline, EMBASE, PsycInfo, Science Citation, Social Science Citation (Web of Science), and CINAHL. We included studies of children with cancer in which their self-report symptoms had been quantified and in which results were described for those younger than 8 years of age. The search was restricted to publications in English. Two reviewers screened studies and abstracted all data in duplicate. Descriptive analysis of reliability and validity was performed.
Results
Thirteen studies were included. Only one study recruited children <8 years alone. Most studies described reliability and validity in a wider age range cohort in which most children were older than 8 years of age. Of the eight studies that evaluated reliability within the younger age group, six raised concerns about poor internal consistency with Cronbach’s alpha <0.7 in at least one dimension. Concerns about test re-test reliability and inter-rater reliability were also observed. None of the studies evaluated validity.
Conclusions
We failed to demonstrate that currently available instruments to measure self-report symptoms are reliable or valid specifically for children with cancer younger than 8 years of age. Development of psychometrically robust instruments for younger children should be a priority.
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References
O’Sullivan C, Dupuis LL, Gibson P, Johnston DL, Baggott C, Portwine C, Spiegler B, Kuczynski S, Tomlinson D, de Mol Van Otterloo S, Tomlinson GA, Sung L (2014) Refinement of the symptom screening in pediatrics tool (SSPedi). Br J Cancer 111(7):1262–1268. doi:10.1038/bjc.2014.1445
Tomlinson D, Dupuis LL, Gibson P, Johnston DL, Portwine C, Baggott C, Zupanec S, Watson J, Spiegler B, Kuczynski S, Macartney G, Sung L (2014) Initial development of the Symptom Screening in Pediatrics Tool (SSPedi). Support Care Cancer 22(1):71–75. doi:10.1007/s00520-00013-01945-x
Jacobs S, Baggott C, Agarwal R, Hesser T, Schechter T, Judd P, Tomlinson D, Beyene J, Sung L (2013) Validation of the Children’s International Mucositis Evaluation Scale (ChIMES) in paediatric cancer and SCT. Br J Cancer 109(10):2515–2522. doi:10.1038/bjc.2013.618
Tomlinson D, Gibson F, Treister N, Baggott C, Judd P, Hendershot E, Maloney AM, Doyle J, Feldman B, Kwong K, Sung L (2010) Refinement of the Children’s International Mucositis Evaluation Scale (ChIMES): child and parent perspectives on understandability, content validity and acceptability. Eur J Oncol Nurs 14(1):29–41. doi:10.1016/j.ejon.2009.10.004
Tomlinson D, Hesser T, Maloney AM, Ross S, Naqvi A, Sung L (2014) Development and initial evaluation of electronic Children’s International Mucositis Evaluation Scale (eChIMES) for children with cancer. Support Care Cancer 22(1):115–119. doi:10.1007/s00520-013-1953-x
Tomlinson D, von Baeyer CL, Stinson JN, Sung L (2010) A systematic review of faces scales for the self-report of pain intensity in children. Pediatrics 126(5):e1168–e1198. doi:10.1542/peds.2010-1609
Dupuis LL, Milne-Wren C, Cassidy M, Barrera M, Portwine C, Johnston DL, Silva MP, Sibbald C, Leaker M, Routh S, Sung LL (2010) Symptom assessment in children receiving cancer therapy: the parents’ perspective. Support Care Cancer 18(3):281–299
Dobrozsi SK, Panepinto JA (2015) Patient-reported outcome measures identify impairment better than clinician documentation during pediatric cancer treatment. Blood 126(23):3291
Twycross A, Voepel-Lewis T, Vincent C, Franck LS, von Baeyer CL (2015) A debate on the proposition that self-report is the gold standard in assessment of pediatric pain intensity. Clin J Pain 31(8):707–712. doi:10.1097/AJP.0000000000000165
Gordijn MS, van Litsenburg RR, Gemke RJ, Huisman J, Bierings MB, Hoogerbrugge PM, Kaspers GJ (2013) Sleep, fatigue, depression, and quality of life in survivors of childhood acute lymphoblastic leukemia. Pediatr Blood Cancer 60(3):479–485. doi:10.1002/pbc.24261
Schulte F, Wurz A, Reynolds K, Strother D, Dewey D (2016) Quality of life in survivors of pediatric cancer and their siblings: the consensus between parent-proxy and self-reports. Pediatr Blood Cancer 63(4):677–683. doi:10.1002/pbc.25868
Yeh CH, Chang CW, Chang PC (2005) Evaluating quality of life in children with cancer using children’s self-reports and parent-proxy reports. Nurs Res 54(5):354–362
DeWalt DA, Gross HE, Gipson DS, Selewski DT, DeWitt EM, Dampier CD, Hinds PS, Huang IC, Thissen D, Varni JW (2015) PROMIS pediatric self-report scales distinguish subgroups of children within and across six common pediatric chronic health conditions. Qual Life Res 24(9):2195–2208. doi:10.1007/s11136-015-0953-3
Hilgard JR, LeBaron S (1982) Relief of anxiety and pain in children and adolescents with cancer: quantitative measures and clinical observations. Int J Clin Exp Hypn 30(4):417–442
von Baeyer CL, Uman LS, Chambers CT, Gouthro A (2011) Can we screen young children for their ability to provide accurate self-reports of pain? Pain 152(6):1327–1333. doi:10.1016/j.pain.2011.02.013
Chambers CT, Johnston C (2002) Developmental differences in children’s use of rating scales. J Pediatr Psychol 27(1):27–36
Stinson JN, Kavanagh T, Yamada J, Gill N, Stevens B (2006) Systematic review of the psychometric properties, interpretability and feasibility of self-report pain intensity measures for use in clinical trials in children and adolescents. Pain 125(1–2):143–157
Moher D, Liberati A, Tetzlaff J, Altman DG (2009) Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Ann Intern Med 151(4):264–269 W264
Hooke MC, Gilchrist L, Foster L, Langevin M, Lee J (2016) Yoga for children and adolescents after completing cancer treatment. J Pediatr Oncol Nurs 33(1):64–73 10. doi:10.1177/1043454214563936
Dupuis LL, Ethier MC, Tomlinson D, Hesser T, Sung L (2012) A systematic review of symptom assessment scales in children with cancer. BMC Cancer 12:430. doi:10.1186/1471-2407-12-430
Nunally J, Bernstein I (1994) Psychometric theory. McGraw-Hill, Inc., New York
Bartko JJ (1966) The intraclass correlation coefficient as a measure of reliability. Psychol Rep 19(1):3–11. doi:10.2466/pr0.1966.19.1.3
Landis JR, Koch GG (1977) The measurement of observer agreement for categorical data. Biometrics 33(1):159–174
Badr Zahr LK, Puzantian H, Abboud M, Abdallah A, Shahine R (2006) Assessing procedural pain in children with cancer in Beirut, Lebanon. J Pediatr Oncol Nurs 23(6):311–320
Dunitz M, Scheer PJ, Wurst L, Grientschnigg G, Urban EC (1991) Depression in children with cancer. Padiatr Padol 26(6):267–270
Dupuis LL, Lau R, Greenberg ML (2001) Delayed nausea and vomiting in children receiving antineoplastics. Med Pediatr Oncol 37(2):115–121
Hermont AP, Scarpelli AC, Paiva SM, Auad SM, Pordeus IA (2015) Anxiety and worry when coping with cancer treatment: agreement between patient and proxy responses. Qual Life Res 24(6):1389–1396. doi:10.1007/s11136-014-0869-3
Ji Y, Chen S, Li K, Xiao N, Yang X, Zheng S, Xiao X (2011) Measuring health-related quality of life in children with cancer living in Mainland China: feasibility, reliability and validity of the Chinese Mandarin version of PedsQL 4.0 Generic Core Scales and 3.0 Cancer Module. Health Qual Life Outcomes 9:103. doi:10.1186/1477-7525-9-103
Kuhlthau KA, Pulsifer MB, Yeap BY, Rivera Morales D, Delahaye J, Hill KS, Ebb D, Abrams AN, Macdonald SM, Tarbell NJ, Yock TI (2012) Prospective study of health-related quality of life for children with brain tumors treated with proton radiotherapy. J Clin Oncol 30(17):2079–2086. doi:10.1200/JCO.2011.37.0577
Lau JTF, Yu XN, Chu Y, Shing MMK, Wong EMC, Leung TF, Li CK, Fok TF, Mak WWS (2010) Validation of the Chinese version of the Pediatric Quality of Life Inventory™ (PedsQL™) Cancer Module. J Pediatr Psychol 35(1):99–109
Parsons SK, Fairclough DL, Wang J, Hinds PS (2012) Comparing longitudinal assessments of quality of life by patient and parent in newly diagnosed children with cancer: the value of both raters’ perspectives. Qual Life Res 21(5):915–923
San Juan AF, Fleck SJ, Chamorro-Vina C, Mate-Munoz JL, Moral S, Perez M, Cardona C, Del Valle MF, Hernandez M, Ramirez M, Madero L, Lucia A (2007) Effects of an intrahospital exercise program intervention for children with leukemia. Med Sci Sports Exerc 39(1):13–21
Sato I, Higuchi A, Yanagisawa T, Mukasa A, Ida K, Sawamura Y, Sugiyama K, Saito N, Kumabe T, Terasaki M, Nishikawa R, Ishida Y, Kamibeppu K (2013) Factors influencing self- and parent-reporting health-related quality of life in children with brain tumors. Qual Life Res 22(1):185–201. doi:10.1007/s11136-012-0137-3
Scarpelli AC, Paiva SM, Pordeus IA, Ramos-Jorge ML, Varni JW, Allison PJ (2008) Measurement properties of the Brazilian version of the Pediatric Quality of Life Inventory (PedsQL) cancer module scale. Health Qual Life Outcomes 6:7. doi:10.1186/1477-7525-6-7
Tsuji N, Kakee N, Ishida Y, Asami K, Tabuchi K, Nakadate H, Iwai T, Maeda M, Okamura J, Kazama T, Terao Y, Ohyama W, Yuza Y, Kaneko T, Manabe A, Kobayashi K, Kamibeppu K, Matsushima E (2011) Validation of the Japanese version of the Pediatric Quality of Life Inventory (PedsQL) cancer module. Health Qual Life Outcomes 9:22. doi:10.1186/1477-7525-9-22
Varni JW, Burwinkle TM, Katz ER, 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. Cancer 94(7):2090–2106
Felder-Puig R, Frey E, Proksch K, Varni JW, Gadner H, Topf R (2004) Validation of the German version of the Pediatric Quality of Life Inventory (PedsQL) in childhood cancer patients off treatment and children with epilepsy. Qual Life Res 13(1):223–234
Dupuis LL, Taddio A, Kerr EN, Kelly A, MacKeigan L (2006) Development and validation of the pediatric nausea assessment tool for use in children receiving antineoplastic agents. Pharmacotherapy 26(9):1221–1231. doi:10.1592/phco.26.9.1221
Acknowledgements
We would like to thank Tamsin Adams-Webber, Library and Archives Manager, Hospital for Sick Children, Toronto, for her invaluable assistance with the literature search strategy.
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Tomlinson, D., Tigelaar, L., Hyslop, S. et al. Self-report of symptoms in children with cancer younger than 8 years of age: a systematic review. Support Care Cancer 25, 2663–2670 (2017). https://doi.org/10.1007/s00520-017-3740-6
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DOI: https://doi.org/10.1007/s00520-017-3740-6