Skip to main content
Log in

Perspectives of children, family caregivers, and health professionals about pediatric oncology symptoms: a systematic review

  • Review Article
  • Published:
Supportive Care in Cancer Aims and scope Submit manuscript

Abstract

Objectives

To evaluate the existing body of evidence to determine the current state of knowledge regarding the perspectives of the following groups: (1) children with cancer, (2) family caregivers, and (3) healthcare professionals, about symptoms, as well as factors that may influence the symptom reports.

Methods

A systematic search was performed for all types of studies that included the perspectives of at least two groups of participants’ symptom reports. Children included anyone younger than 19 years of age who was diagnosed with any type of cancer. Electronic searches were conducted in five English databases and four Chinese databases. The appraisal of methodological quality was conducted using the GRADE criteria. Data were extracted into matrix tables.

Results

Thirty-three studies were included. The pediatric oncology symptoms reported by children, family caregivers, and healthcare professionals were synthesized. Findings suggested that family caregivers’ symptom reports were more closely aligned with children’s reports than with the healthcare professionals’ reports. Influencing factors on the different symptom reports included the children’s diagnosis, symptom characteristics, social-demographic factors, and family caregivers’ psychosocial status.

Conclusions

Children with cancer should be the primary reporters for their symptoms. When there are reporters other than the children, the potential discrepancy between the different perspectives needs to be carefully considered.

This is a preview of subscription content, log in via an institution to check access.

Access this article

Price excludes VAT (USA)
Tax calculation will be finalised during checkout.

Instant access to the full article PDF.

Fig. 1

Similar content being viewed by others

References

  1. 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.29597

    Article  PubMed  PubMed Central  Google Scholar 

  2. Baggott C, Dodd M, Kennedy C, Marina N, Miaskowski C (2009) Multiple symptoms in pediatric oncology patients: a systematic review. J Pediatr Oncol Nurs : Off J Assoc Pediatr Oncol Nurses 26(6):325–239. https://doi.org/10.1177/1043454209340324

    Article  Google Scholar 

  3. Varni JW, Limbers C, Burwinkle TM (2007) Literature review: health-related quality of life measurement in pediatric oncology: hearing the voices of the children. J Pediatr Psychol 32(9):1151–1163. https://doi.org/10.1093/jpepsy/jsm008

    Article  PubMed  Google Scholar 

  4. Linder LA (2008) Developmental diversity in symptom research involving children and adolescents with cancer. J Pediatr Nurs 23(4):296–309. https://doi.org/10.1016/j.pedn.2007.10.003

    Article  PubMed  Google Scholar 

  5. Baggott C, Cooper BA, Marina N, Matthay KK, Miaskowski C (2014) Symptom assessment in pediatric oncology: how should concordance between children’s and parents’ reports be evaluated? Cancer Nurs 37(4):252–262. https://doi.org/10.1097/ncc.0000000000000111

    Article  PubMed  Google Scholar 

  6. Hinds PS, Menard JC, Jacobs SS (2012) The child’s voice in pediatric palliative and end-of-life care. Progress Palliative Care 20(6):337–342. https://doi.org/10.1179/1743291X12Y.0000000035

    Article  Google Scholar 

  7. Moher D, Liberati A, Tetzlaff J, Altman DG (2010) Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. Int J Surg (London, England) 8(5):336–341. https://doi.org/10.1016/j.ijsu.2010.02.007

    Article  Google Scholar 

  8. Guyatt G, Oxman AD, Akl EA, Kunz R, Vist G, Brozek J, Norris S, Falck-Ytter Y, Glasziou P, DeBeer H, Jaeschke R, Rind D, Meerpohl J, Dahm P, Schunemann HJ (2011) GRADE guidelines: 1. Introduction-GRADE evidence profiles and summary of findings tables. J Clin Epidemiol 64(4):383–394. https://doi.org/10.1016/j.jclinepi.2010.04.026

    Article  PubMed  Google Scholar 

  9. Andrews J, Guyatt G, Oxman AD, Alderson P, Dahm P, Falck-Ytter Y, Nasser M, Meerpohl J, Post PN, Kunz R, Brozek J, Vist G, Rind D, Akl EA, Schunemann HJ (2013) GRADE guidelines: 14. Going from evidence to recommendations: the significance and presentation of recommendations. J Clin Epidemiol 66(7):719–725. https://doi.org/10.1016/j.jclinepi.2012.03.013

    Article  PubMed  Google Scholar 

  10. Matziou V, Vlachioti E, Megapanou E, Ntoumou A, Dionisakopoulou C, Dimitriou V, Tsoumakas K, Matziou T, Perdikaris P (2016) Perceptions of children and their parents about the pain experienced during their hospitalization and its impact on parents’ quality of life. Jpn J Clin Oncol 46(9):862–870. https://doi.org/10.1093/jjco/hyw074

    Article  PubMed  Google Scholar 

  11. Zernikow B, Meyerhoff U, Michel E, Wiesel T, Hasan C, Janssen G, Kuhn N, Kontny U, Fengler R, Gortitz I, Andler W (2005) Pain in pediatric oncology—children’s and parents’ perspectives. Eur J Pain (London, England) 9(4):395–406. https://doi.org/10.1016/j.ejpain.2004.09.008

    Article  Google Scholar 

  12. Hechler T, Chalkiadis GA, Hasan C, Kosfelder J, Meyerhoff U, Vocks S, Zernikow B (2009) Sex differences in pain intensity in adolescents suffering from cancer: differences in pain memories? J Pain : Off J Am Pain Soc 10(6):586–393. https://doi.org/10.1016/j.jpain.2008.11.011

    Article  Google Scholar 

  13. Collins JJ, Devine TD, Dick GS, Johnson EA, Kilham HA, Pinkerton CR, Stevens MM, Thaler HT, Portenoy RK (2002) The measurement of symptoms in young children with cancer: the validation of the memorial symptom assessment scale in children aged 7-12. J Pain Symptom Manag 23(1):10–16. https://doi.org/10.1016/S0885-3924(01)00375-X

    Article  Google Scholar 

  14. Hinds PS, Gattuso JS, Billups CA, West NK, Wu JR, Rivera C, Quintana J, Villarroel M, Daw NC (2009) Aggressive treatment of non-metastatic osteosarcoma improves health-related quality of life in children and adolescents. Eur J Cancer 45(11):2007–2014. https://doi.org/10.1016/j.ejca.2009.04.020

    Article  PubMed  PubMed Central  Google Scholar 

  15. 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 Manag 19(5):363–377. https://doi.org/10.1016/S0885-3924(00)00127-5

    Article  CAS  Google Scholar 

  16. 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 (2014) Cancer-specific health-related quality of life in children with brain tumors. Qual Life Res: An Int J Qual Life Asp Treat Care Rehabil 23(4):1059–1068. https://doi.org/10.1007/s11136-013-0555-x

    Article  Google Scholar 

  17. Liossi C, White P, Franck L, Hatira P (2007) Parental pain expectancy as a mediator between child expected and experienced procedure-related pain intensity during painful medical procedures. Clin J Pain 23(5):392–399. https://doi.org/10.1097/AJP.0b013e31804ac00c

    Article  PubMed  Google Scholar 

  18. Van Cleve L, Munoz CE, Riggs ML, Bava L, Savedra M (2012) Pain experience in children with advanced cancer. J Pediatr Oncol Nurs 29(1):28–36. https://doi.org/10.1177/1043454211432295

    Article  PubMed  Google Scholar 

  19. Van Cleve L, Munoz CE, Savedra M, Riggs M, Bossert E, Grant M, Adlard K (2012) Symptoms in children with advanced cancer child and nurse reports. Cancer Nurs 35(2):115–125. https://doi.org/10.1097/NCC.0b013e31821aedba

    Article  PubMed  PubMed Central  Google Scholar 

  20. Pu X, Ye Q, Liu K, You L (2015) The application of Chinese version of PedsQLTMMultidimensional fatigue scale in children with leukemia. Chin J Pract Nurs 31(5):323–326

    Google Scholar 

  21. Gerçeker GO, Yilmaz HB (2012) Reliability and validity of Turkish versions of the child, parent and staff cancer fatigue scales. Asian Pac J Cancer Prev: APJCP 13(7):3135–3141. https://doi.org/10.7314/APJCP.2012.13.7.3135

    Article  PubMed  Google Scholar 

  22. Whitsett SF, Gudmundsdottir M, Davies B, McCarthy P, Friedman D (2008) Chemotherapy-related fatigue in childhood cancer: correlates, consequences, and coping strategies. J Pediatr Oncol Nurs 25(2):86–96. https://doi.org/10.1177/1043454208315546

    Article  PubMed  Google Scholar 

  23. Hockenberry MJ, Hinds PS, Barrera P, Bryant R, Adams-McNeill J, Hooke C, Rasco-Baggott C, Patterson-Kelly K, Gattuso JS, Manteuffel B (2003) Three instruments to assess fatigue in children with cancer: the child, parent and staff perspectives. J Pain Symptom Manag 25(4):319–328. https://doi.org/10.1016/S0885-3924(02)00680-2

    Article  Google Scholar 

  24. Hinds PS, Hockenberry M, Tong X, Rai SN, Gattuso JS, McCarthy K, Pui CH, Srivastava DK (2007) Validity and reliability of a new instrument to measure cancer-related fatigue in adolescents. J Pain Symptom Manag 34(6):607–618. https://doi.org/10.1016/j.jpainsymman.2007.01.009

    Article  Google Scholar 

  25. Yilmaz HB, Gerçeker GO, Muslu GK (2016) Evaluating the cancer related fatigue by children, mothers, and nurses in Turkish pediatric oncology patients. Eur J Oncol Nurs 23:66–71. https://doi.org/10.1016/j.ejon.2016.05.002

    Article  PubMed  Google Scholar 

  26. Nascimento LC, Nunes MDR, Rocha EL, Bomfim EO, Floria-Santos M, dos Santos CB, dos Santos D, de Lima RAG (2015) High validity and reliability of the PedsQL (TM) multidimensional fatigue scale for Brazilian children with cancer. J Pediatr Oncol Nurs 32(1):57–64. https://doi.org/10.1177/1043454214554656

    Article  PubMed  Google Scholar 

  27. Yeh CH, Chiang YC, Lin L, Yang CP, Chien LC, Weaver MA, Chuang HL (2008) Clinical factors associated with fatigue over time in paediatric oncology patients receiving chemotherapy. Br J Cancer 99(1):23–29. https://doi.org/10.1038/sj.bjc.6604434

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  28. Hinds PS, 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. Cancer Nurs 22(4):277–289. https://doi.org/10.1097/00002820-199908000-00004

    Article  PubMed  CAS  Google Scholar 

  29. Tyc VL, Mulhern RK, Fairclough D, Ward PM, Relling MV, Longmire W (1993) Chemotherapy induced nausea and emesis in pediatric cancer patients: external validity of child and parent emesis ratings. J Dev Behav Pediatr 14(4):236–241

    Article  PubMed  CAS  Google Scholar 

  30. Lo LH, Hayman LL (1999) Parents associated with children in measuring acute and delayed nausea and vomiting. Nurs Health Sci 1(3):155–161. https://doi.org/10.1046/j.1442-2018.1999.00020.x

    Article  PubMed  CAS  Google Scholar 

  31. Rodgers C, Kollar D, Taylor O, Bryant R, Crockett K, Gregurich MA, Hockenberry M (2012) Nausea and vomiting perspectives among children receiving moderate to highly emetogenic chemotherapy treatment. Cancer Nurs 35(3):203–210. https://doi.org/10.1097/NCC.0b013e3182281493

    Article  PubMed  Google Scholar 

  32. Walco GA, Conte PM, Labay LE, Engel R, Zeltzer LK (2005) Procedural distress in children with cancer: self-report, behavioral observations, and physiological parameters. Clin J Pain 21(6):484–490

    Article  PubMed  Google Scholar 

  33. Zhou Y, Lou J, Feng F (2013) The difference in assessment of quality of life between child self-report and parent proxy-report on the pediatric quality of life inventory measurement. Shanghai Nursing 13(1):18–21

    Google Scholar 

  34. Bemis H, Yarboi J, Gerhardt CA, Vannatta K, Desjardins L, Murphy LK, Rodriguez EM, Compas BE (2015) Childhood cancer in context: sociodemographic factors, stress, and psychological distress among mothers and children. J Pediatr Psychol 40(8):733–743. https://doi.org/10.1093/jpepsy/jsv024

    Article  PubMed  PubMed Central  Google Scholar 

  35. Mulhern RK, Fairclough DL, Smith B, Douglas SM (1992) Maternal depression, assessment methods, and physical symptoms affect estimates of depressive symptomatology among children with cancer. J Pediatr Psychol 17(3):313–326. https://doi.org/10.1093/jpepsy/17.3.313

    Article  PubMed  CAS  Google Scholar 

  36. Eiser C, Havermans T, Craft A, Kernahan J (1995) Development of a measure to assess the perceived illness experience after treatment for cancer. Arch Dis Child 72(4):302–307

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  37. Varni JW, Seid M, Rode CA (1999) The PedsQL (TM): measurement model for the pediatric quality of life inventory. Med Care 37(2):126–139. https://doi.org/10.1097/00005650-199902000-00003

    Article  PubMed  CAS  Google Scholar 

  38. Levine DR, Mandrell BN, Sykes A, Pritchard M, Gibson D, Symons HJ, Wendler D, Baker JN (2017) Patients’ and parents’ needs, attitudes, and perceptions about early palliative care integration in pediatric oncology. JAMA Oncol 3:1214–1220. https://doi.org/10.1001/jamaoncol.2017.0368

    Article  PubMed  PubMed Central  Google Scholar 

  39. Baggott C, Baird J, Hinds P, Ruland CM, Miaskowski C (2015) Evaluation of Sisom: a computer-based animated tool to elicit symptoms and psychosocial concerns from children with cancer. Eur J Oncol Nurs 19(4):359–369. https://doi.org/10.1016/j.ejon.2015.01.006

    Article  PubMed  Google Scholar 

  40. Hedström M, Haglund K, Skolin I, von Essen L (2003) Distressing events for children and adolescents with cancer: child, parent, and nurse perceptions. J Pediatr Oncol Nurs 20(3):120–132

    Article  PubMed  Google Scholar 

  41. O'Sullivan C, Dupuis LL, Gibson P, Johnston DL, Baggott C, Portwine C, Spiegler B, Kuczynski S, Tomlinson D, Tomlinson GA, Sung L (2016) Evaluation of the electronic self-report symptom screening in pediatrics tool (SSPedi). BMJ Support Palliat Care 8:110–116. https://doi.org/10.1136/bmjspcare-2015-001084

    Article  PubMed  Google Scholar 

  42. Dupuis LL, Johnston DL, Baggott C, Hyslop S, Tomlinson D, Gibson P, Orsey A, Dix D, Price V, Vanan M, Portwine C, Kuczynski S, Spiegler B, Tomlinson GA, Sung L (2017) Validation of the symptom screening in pediatrics tool in children receiving Cancer treatments. J Natl Cancer Inst. https://doi.org/10.1093/jnci/djx250

  43. Ameringer S, Erickson JM, Macpherson CF, Stegenga K, Linder LA (2015) Symptoms and symptom clusters identified by adolescents and young adults with cancer using a symptom heuristics app. Res Nursing Health 38(6):436–448. https://doi.org/10.1002/nur.21697

    Article  Google Scholar 

  44. Vatne TM, Slaugther L, Ruland CM (2010) How children with cancer communicate and think about symptoms. J Pediatr Oncol Nurs : Off J Assoc Pediatr Oncol Nurses 27(1):24–32. https://doi.org/10.1177/1043454209349358

    Article  Google Scholar 

Download references

Acknowledgements

The authors would like to thank Jamie Conklin, MSLIS, Prof Library Staff, Medical Center Library and Archives, School of Medicine, Duke University for her invaluable assistance with the literature search strategy and Marion. E. Broome PhD, RN, FAAN, Dean and Ruby F. Wilson Professor of Nursing, School of Nursing, Duke University, for her thoughtful comments and constructive suggestions during the preparation of this manuscript.

Author information

Authors and Affiliations

Authors

Corresponding author

Correspondence to Lei Cheng.

Ethics declarations

Conflict of interest

The authors declare that they have no conflicts of interest.

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Cheng, L., Wang, L., He, M. et al. Perspectives of children, family caregivers, and health professionals about pediatric oncology symptoms: a systematic review. Support Care Cancer 26, 2957–2971 (2018). https://doi.org/10.1007/s00520-018-4257-3

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-018-4257-3

Keywords

Navigation