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Supportive Care in Cancer

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01-12-2021 | Pediatric Cancer | Original Article

Self-reported late effect symptom clusters among young pediatric cancer survivors

Authors: Rebecca Williamson Lewis, Karen E. Effinger, Karen Wasilewski-Masker, Ann Mertens, Canhua Xiao

Published in: Supportive Care in Cancer | Issue 12/2021

Abstract

Purpose

Most survivors of childhood cancer experience subsequent chronic conditions but little is known about concurrent symptoms. This study seeks to identify late effect symptom clusters among young pediatric cancer survivors.

Methods

Survivors ≥ 18 or parents of survivors < 18 years enrolled in an institutional cohort study indicated (yes/no) if they experienced certain symptoms after treatment. The sample was randomly divided in half for exploratory factor analyses to identify symptom clusters followed by confirmatory factor analyses. Symptoms with ≥ 10% prevalence were included. Cluster structure generalizability across subgroups was examined using congruence coefficients.

Results

The sample included 579 survivors (74% non-Hispanic white, 45% leukemia, 12.8 ± 4.5 years at survey, 5.9 ± 3.5 years since therapy). Respondents averaged three symptoms. Three clusters were identified: (1) gastrointestinal: abdominal pain, diarrhea, constipation, nausea, vomiting (Cronbach’s α = 0.74); (2) psychological: depression, anxiety, memory problems, anger management problems, sleep problems (α = 0.71); and (3) neurologic: problems walking, numbness/tingling, fatigue, back pain, chronic pain, weakness/inability to move legs (α = 0.71). Confirmatory factor analysis confirmed the three-cluster structure (standardized root mean square residual: 0.09; parsimonious goodness of fit: 0.96; Bentler-Bonett normed fit index: 0.95). The gastrointestinal and psychological clusters were generalizable across most subgroups while the neurologic cluster varied across age and race/ethnicity subgroups.

Conclusion

Three distinct late effect symptom clusters were identified in young childhood cancer survivors with gastrointestinal and psychological clusters remaining relatively stable across subgroups. Future studies should focus on the characteristics of patients who experience these symptoms, especially those with high symptom burden, and the synergistic impact on quality of life.

Howlader N, Noone A, Krapcho M, Miller D, Brest A, Yu M, Ruhl J, Tatalovich Z, Mariotto A, Lewis D, Chen H, Feuer E, Cronin K (April 2020) SEER Cancer Statistics Review, 1975–2017. National Cancer Institute. https://seer.cancer.gov/csr/1975_2017/, based on November 2019 SEER data submission

Oeffinger KC, Mertens AC, Sklar CA, Kawashima T, Hudson MM, Meadows AT, Friedman DL, Marina N, Hobbie W, Kadan-Lottick NS, Schwartz CL, Leisenring W, Robison LL, Childhood Cancer Survivor S (2006) Chronic health conditions in adult survivors of childhood cancer. N Engl J Med 355(15):1572–1582. https://doi.org/10.1056/NEJMsa060185CrossRefPubMed

Hudson MM, Ness KK, Gurney JG, Mulrooney DA, Chemaitilly W, Krull KR, Green DM, Armstrong GT, Nottage KA, Jones KE, Sklar CA, Srivastava DK, Robison LL (2013) Clinical ascertainment of health outcomes among adults treated for childhood cancer. JAMA 309(22):2371–2381. https://doi.org/10.1001/jama.2013.6296CrossRefPubMedPubMedCentral

Bhakta N, Liu Q, Ness KK, Baassiri M, Eissa H, Yeo F, Chemaitilly W, Ehrhardt MJ, Bass J, Bishop MW, Shelton K, Lu L, Huang S, Li Z, Caron E, Lanctot J, Howell C, Folse T, Joshi V, Green DM, Mulrooney DA, Armstrong GT, Krull KR, Brinkman TM, Khan RB, Srivastava DK, Hudson MM, Yasui Y, Robison LL (2017) The cumulative burden of surviving childhood cancer: an initial report from the St Jude Lifetime Cohort Study (SJLIFE). Lancet 390(10112):2569–2582. https://doi.org/10.1016/S0140-6736(17)31610-0CrossRefPubMedPubMedCentral

Children's Onocology Group (2018) Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers, Version 5.0 www.survivorshipguidelines.org

Withycombe JS, Haugen M, Zupanec S, Macpherson CF, Landier W (2019) Consensus recommendations from the Children’s Oncology Group Nursing Discipline’s State of the Science Symposium: symptom assessment during childhood cancer treatment. J Pediatr Oncol Nurs 36(4):294–299. https://doi.org/10.1177/1043454219854983CrossRefPubMedPubMedCentral

Dodd M, Janson S, Facione N, Faucett J, Froelicher ES, Humphreys J, Lee K, Miaskowski C, Puntillo K, Rankin S, Taylor D (2001) Advancing the science of symptom management. J Adv Nurs 33(5):668–676. https://doi.org/10.1046/j.1365-2648.2001.01697.xCrossRefPubMed

Kim HJ, McGuire DB, Tulman L, Barsevick AM (2005) Symptom clusters: concept analysis and clinical implications for cancer nursing. Cancer Nurs 28(4):270–282. https://doi.org/10.1097/00002820-200507000-00005 (quiz 283-274)CrossRefPubMed

Xiao C, Bruner DW, Jennings BM, Hanlon AL (2014) Methods for examining cancer symptom clusters over time. Res Nurs Health 37(1):65–74. https://doi.org/10.1002/nur.21572CrossRefPubMed

10.

Atay S (2011) Symptom characteristics and clustering in children and adolescents undergoing or being off cancer chemotherapy. J BUON 16(4):751–758PubMed

11.

Yeh CH, Chiang YC, Chien LC, Lin L, Yang CP, Chuang HL (2008) Symptom clustering in older Taiwanese children with cancer. Oncol Nurs Forum 35(2):273–281. https://doi.org/10.1188/08.ONF.273-281CrossRefPubMed

12.

Buckner TW, Wang J, DeWalt DA, Jacobs S, Reeve BB, Hinds PS (2014) Patterns of symptoms and functional impairments in children with cancer. Pediatr Blood Cancer 61(7):1282–1288. https://doi.org/10.1002/pbc.25029CrossRefPubMedPubMedCentral

13.

Desaulniers GA, Riley L, Vangle K, Gilleland J, Higgins M, Wasilewski-Masker K (2015) Self-reported sleep problems in adolescent survivors of childhood cancer. Clin J Oncol Nurs 19(1):81–88. https://doi.org/10.1188/15.CJON.81-88CrossRefPubMed

14.

Elchuri SV, Patterson BC, Wasilewski-Masker K, Mertens AC, Record E, Meacham LR (2014) Perceptions of body mass index (BMI) in pediatric cancer survivors and their providers. Pediatr Blood Cancer 61(8):1445–1450. https://doi.org/10.1002/pbc.25020CrossRefPubMed

15.

George SA, Williamson Lewis R, McKenzie L, Cherven B, Patterson BC, Effinger KE, Mertens AC, Meacham LR (2019) Assessment of ovarian function in adolescents and young adults after childhood cancer treatment-How accurate are young adult/parent proxy-reported outcomes? Pediatr Blood Cancer 66(12):e27981. https://doi.org/10.1002/pbc.27981CrossRefPubMed

16.

Harris PA, Taylor R, Minor BL, Elliott V, Fernandez M, O’Neal L, McLeod L, Delacqua G, Delacqua F, Kirby J, Duda SN, Consortium RE (2019) The REDCap consortium: building an international community of software platform partners. J Biomed Inform 95:103208. https://doi.org/10.1016/j.jbi.2019.103208CrossRefPubMedPubMedCentral

17.

Wasilewski-Masker K, Mertens AC, Patterson B, Meacham LR (2010) Severity of health conditions identified in a pediatric cancer survivor program. Pediatr Blood Cancer 54(7):976–982. https://doi.org/10.1002/pbc.22431CrossRefPubMed

18.

Children's Onocology Group (2006) Long-term follow-up guidelines for survivors of childhood, adolescent, and young adult cancers, Version 2.0 www.survivorshipguidelines.org

19.

UCLA: Statistical Consulting Group How can I perform a factor analysis with categorical (or categorical and continuous) variables? https://stats.idre.ucla.edu/stata/faq/how-can-i-perform-a-factor-analysis-with-categorical-or-categorical-and-continuous-variables/. Accessed July 1 2020

20.

SAS Support (2017) Usage Note 22529: can PROC CALIS analyze categorical data? https://support.sas.com/kb/22/529.html. Accessed Jul 1 2020

21.

Cattell R (1966) the screen test for the number of factors. Multivar Behav Res 1:245–276CrossRef

22.

Kaiser H (1960) The application of electronic computers to factor analysis. Educ Psychol Measur 20:141–151CrossRef

23.

Xiao C, Hanlon A, Zhang Q, Ang K, Rosenthal DI, Nguyen-Tan PF, Kim H, Movsas B, Bruner DW (2013) Symptom clusters in patients with head and neck cancer receiving concurrent chemoradiotherapy. Oral Oncol 49(4):360–366. https://doi.org/10.1016/j.oraloncology.2012.10.004CrossRefPubMed

24.

Fabrigar L, Wegener D, MacCallum R, Strahan E (1999) Evaluating the use of exploratory factor analysis in psychological research. Psychol Methods 4(3):272–299CrossRef

25.

Velicer W, Peacock A, Jackson D (1982) A comparison of factor patterns: a Monte Carlo approach. Multivar Behav Res 17:371–388CrossRef

26.

Wood J, Tataryn D, Gorsuch R (1996) Effects of under- and overextraction on principal axis factor analysis with varimax rotation. Psychol Methods 1(4):354–365CrossRef

27.

Yates A (1987) Multivariate exploratory data analysis: a perspective on exploratory factor analysis. State University of New York Press, Albany

28.

O'Rourke N, Hatcher L (2013) A step-by-step approach to using SAS® for factor analysis and structural equation modeling

29.

Guadagnoli E, Velicer W (1991) A comparison of pattern matching indices. Multivariate Behav Res 26(2):323–343. https://doi.org/10.1207/s15327906mbr2602_7CrossRefPubMed

30.

Miaskowski C, Barsevick A, Berger A, Casagrande R, Grady PA, Jacobsen P, Kutner J, Patrick D, Zimmerman L, Xiao C, Matocha M, Marden S (2017) Advancing symptom science through symptom cluster research: expert panel proceedings and recommendations. J Natl Cancer Inst 109(4). https://doi.org/10.1093/jnci/djw253

31.

Cassidy LJ, Jellinek MS (1998) Approaches to recognition and management of childhood psychiatric disorders in pediatric primary care. Pediatr Clin North Am 45(5):1037–1052. https://doi.org/10.1016/s0031-3955(05)70061-4CrossRefPubMed

32.

Ressler KJ, Nemeroff CB (2000) Role of serotonergic and noradrenergic systems in the pathophysiology of depression and anxiety disorders. Depress Anxiety 12(Suppl 1):2–19. https://doi.org/10.1002/1520-6394(2000)12:1+%3c2::AID-DA2%3e3.0.CO;2-4CrossRefPubMed

33.

Cherwin CH (2012) Gastrointestinal symptom representation in cancer symptom clusters: a synthesis of the literature. Oncol Nurs Forum 39(2):157–165. https://doi.org/10.1188/12.ONF.157-165CrossRefPubMedPubMedCentral

34.

Miller E, Jacob E, Hockenberry MJ (2011) Nausea, pain, fatigue, and multiple symptoms in hospitalized children with cancer. Oncol Nurs Forum 38(5):E382-393. https://doi.org/10.1188/11.ONF.E382-E393CrossRefPubMed

35.

Rodgers CC, Hooke MC, Hockenberry MJ (2013) Symptom clusters in children. Curr Opin Support Palliat Care 7(1):67–72. https://doi.org/10.1097/SPC.0b013e32835ad551CrossRefPubMed

36.

Dodd M, Miaskowski C, Lee K (2004) Occurence of symptom clusters. J Natl Cancer Inst Monogr 32:76–78CrossRef

37.

Doong SH, Dhruva A, Dunn LB, West C, Paul SM, Cooper BA, Elboim C, Abrams G, Merriman JD, Langford DJ, Leutwyler H, Baggott C, Kober K, Aouizerat BE, Miaskowski C (2015) Associations between cytokine genes and a symptom cluster of pain, fatigue, sleep disturbance, and depression in patients prior to breast cancer surgery. Biol Res Nurs 17(3):237–247. https://doi.org/10.1177/1099800414550394CrossRefPubMed

38.

Illi J, Miaskowski C, Cooper B, Levine JD, Dunn L, West C, Dodd M, Dhruva A, Paul SM, Baggott C, Cataldo J, Langford D, Schmidt B, Aouizerat BE (2012) Association between pro- and anti-inflammatory cytokine genes and a symptom cluster of pain, fatigue, sleep disturbance, and depression. Cytokine 58(3):437–447. https://doi.org/10.1016/j.cyto.2012.02.015CrossRefPubMedPubMedCentral

39.

Mora E, Smith EM, Donohoe C, Hertz DL (2016) Vincristine-induced peripheral neuropathy in pediatric cancer patients. Am J Cancer Res 6(11):2416–2430PubMedPubMedCentral

40.

Finnegan L, Campbell RT, Ferrans CE, Wilbur J, Wilkie DJ, Shaver J (2009) Symptom cluster experience profiles in adult survivors of childhood cancers. J Pain Symptom Manage 38(2):258–269. https://doi.org/10.1016/j.jpainsymman.2008.09.010CrossRefPubMedPubMedCentral

41.

Huang IC, Brinkman TM, Kenzik K, Gurney JG, Ness KK, Lanctot J, Shenkman E, Robison LL, Hudson MM, Krull KR (2013) Association between the prevalence of symptoms and health-related quality of life in adult survivors of childhood cancer: a report from the St Jude Lifetime Cohort study. J Clin Oncol 31(33):4242–4251. https://doi.org/10.1200/JCO.2012.47.8867CrossRefPubMedPubMedCentral

42.

Collins JJ, Byrnes ME, Dunkel IJ, Lapin J, Nadel T, Thaler HT, Polyak T, Rapkin B, Portenoy RK (2000) The measurement of symptoms in children with cancer. J Pain Symptom Manage 19(5):363–377. https://doi.org/10.1016/s0885-3924(00)00127-5CrossRefPubMed

43.

Portenoy RK, Thaler HT, Kornblith AB, Lepore JM, Friedlander-Klar H, Kiyasu E, Sobel K, Coyle N, Kemeny N, Norton L et al (1994) The Memorial Symptom Assessment Scale: an instrument for the evaluation of symptom prevalence, characteristics and distress. Eur J Cancer 30A(9):1326–1336. https://doi.org/10.1016/0959-8049(94)90182-1CrossRefPubMed

44.

Rodgers C, Hooke MC, Ward J, Linder LA (2016) Symptom clusters in children and adolescents with cancer. Semin Oncol Nurs 32(4):394–404. https://doi.org/10.1016/j.soncn.2016.08.005CrossRefPubMed

45.

Baggott C, Cooper BA, Marina N, Matthay KK, Miaskowski C (2012) Symptom cluster analyses based on symptom occurrence and severity ratings among pediatric oncology patients during myelosuppressive chemotherapy. Cancer Nurs 35(1):19–28. https://doi.org/10.1097/NCC.0b013e31822909fdCrossRefPubMedPubMedCentral

46.

Zhukovsky DS, Rozmus CL, Robert RS, Bruera E, Wells RJ, Chisholm GB, Allo JA, Cohen MZ (2015) Symptom profiles in children with advanced cancer: patient, family caregiver, and oncologist ratings. Cancer 121(22):4080–4087. https://doi.org/10.1002/cncr.29597CrossRefPubMed

47.

Eiser C, Varni JW (2013) Health-related quality of life and symptom reporting: similarities and differences between children and their parents. Eur J Pediatr 172(10):1299–1304. https://doi.org/10.1007/s00431-013-2049-9CrossRefPubMed

Title: Self-reported late effect symptom clusters among young pediatric cancer survivors
Authors: Rebecca Williamson Lewis
Karen E. Effinger
Karen Wasilewski-Masker
Ann Mertens
Canhua Xiao
Publication date: 01-12-2021
Publisher: Springer Berlin Heidelberg
Keyword: Pediatric Cancer
Published in: Supportive Care in Cancer / Issue 12/2021
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI: https://doi.org/10.1007/s00520-021-06332-4

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