Top

Supportive Care in Cancer

Published in:

01-09-2018 | Review Article

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

Authors: Lei Cheng, Liying Wang, Mengxue He, Sheng Feng, Yehui Zhu, Cheryl Rodgers

Published in: Supportive Care in Cancer | Issue 9/2018

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.

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 CrossRefPubMedPubMedCentral

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 CrossRef

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 CrossRefPubMed

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 CrossRefPubMed

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 CrossRefPubMed

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 CrossRef

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 CrossRef

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 CrossRefPubMed

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 CrossRefPubMed

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 CrossRefPubMed

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 CrossRef

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 CrossRef

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 CrossRef

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 CrossRefPubMedPubMedCentral

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 CrossRef

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 CrossRef

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 CrossRefPubMed

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 CrossRefPubMed

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 CrossRefPubMedPubMedCentral

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

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 CrossRefPubMed

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 CrossRefPubMed

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 CrossRef

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 CrossRef

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 CrossRefPubMed

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 CrossRefPubMed

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 CrossRefPubMedPubMedCentral

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 CrossRefPubMed

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):236–241CrossRefPubMed

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 CrossRefPubMed

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 CrossRefPubMed

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):484–490CrossRefPubMed

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

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 CrossRefPubMedPubMedCentral

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 CrossRefPubMed

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):302–307CrossRefPubMedPubMedCentral

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 CrossRefPubMed

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 CrossRefPubMedPubMedCentral

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 CrossRefPubMed

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):120–132CrossRefPubMed

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 CrossRefPubMed

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 CrossRef

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 CrossRef

Title: Perspectives of children, family caregivers, and health professionals about pediatric oncology symptoms: a systematic review
Authors: Lei Cheng
Liying Wang
Mengxue He
Sheng Feng
Yehui Zhu
Cheryl Rodgers
Publication date: 01-09-2018
Publisher: Springer Berlin Heidelberg
Published in: Supportive Care in Cancer / Issue 9/2018
Print ISSN: 0941-4355
Electronic ISSN: 1433-7339
DOI: https://doi.org/10.1007/s00520-018-4257-3

Webinar | 19-02-2024 | 17:30 (CET)

Keynote webinar | Spotlight on antibody–drug conjugates in cancer

Watch now

Antibody–drug conjugates (ADCs) are novel agents that have shown promise across multiple tumor types. Explore the current landscape of ADCs in breast and lung cancer with our experts, and gain insights into the mechanism of action, key clinical trials data, existing challenges, and future directions.

Dr. Véronique Diéras

Prof. Fabrice Barlesi

Developed by: Springer Medicine

Keynote webinar | Spotlight on medication adherence

Springer Medicine

Abstract

Objectives

Methods

Results

Conclusions

Please log in to get access to this content

Other articles of this Issue 9/2018

Pictorial Representation of Illness and Self Measure-Revised 2 (PRISM-R2): an effective tool to assess perceived burden of thyroid cancer in mainland China

A qualitative analysis of oncology clinicians’ perceptions and barriers for physical activity counseling in breast cancer survivors

The effect of nabilone on appetite, nutritional status, and quality of life in lung cancer patients: a randomized, double-blind clinical trial

Comparing a genetic and a psychological factor as correlates of anxiety, depression, and chronic stress in men with prostate cancer

Addition of doxycycline to ciprofloxacin for infection prophylaxis during autologous stem cell transplants for multiple myeloma

Can early palliative care with anticancer treatment improve overall survival and patient-related outcomes in advanced lung cancer patients? A review of the literature

Keynote webinar | Spotlight on antibody–drug conjugates in cancer