Skip to main content

Advertisement

SpringerLink
Log in

Difficulties encountered by physicians and mental health professionals in evaluating and caring for affective and behavioral problems in pediatric brain tumor survivors

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

Abstract

Background

Pediatric brain tumor survivors (PBTS) present a high risk for emotional and behavioral disorders. When addressing these difficulties, differences in study designs; variety of and disagreement about diagnoses; and intricate links of emotional, behavioral, and cognitive issues may complicate the interpretation of studies and probably also the work of clinicians. We aimed to survey the difficulties perceived by physicians and mental health professionals in their practice and their interest in developing a new evaluative tool.

Methodology

We surveyed 29 health professionals involved in the follow-up of this population. They completed questionnaires about their clinical practice (difficulties, needs, activities) and indicated diagnosis hypotheses and treatment plans on a clinical case developed for this study.

Results

Emotional and behavioral disorders were reported as difficult to assess for 93% of participants. The overlap of symptoms (90%) and the lack of an adapted diagnostic framework (90%) were the main reasons mentioned. Respectively 93%, 90%, and 65% of participants would at least “often” make referrals to psychological (93%), neuropsychological (90%), and psychiatric (65%) assessments and care. Family and group therapy were less common as was drug management. All participants were in favor of creating a tool to help with diagnosis and treatment. When responding to a clinical case, the heterogeneity of participants’ responses highlighted their issues in diagnosing and managing these patients.

Conclusion

This survey exemplifies the difficulties of health professionals related to the evaluation and management of affective and behavioral disorders experienced by PBTS. It underlines the need to help professionals by initiating systematic assessment strategies with this vulnerable population.

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

Access this article

Log in via an institution

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

Instant access to the full article PDF.

Institutional subscriptions

Fig. 1
Fig. 2

Similar content being viewed by others

Data availability

We have full control of all primary data and we allow the journal to review them if necessary.

Code availability

NA

References

  1. Peris-Bonet R, Martínez-García C, Lacour B et al (1990) (2006) Childhood central nervous system tumours–incidence and survival in Europe (1978–1997): report from Automated Childhood Cancer Information System project. Eur J Cancer Oxf Engl 42:2064–2080. https://doi.org/10.1016/j.ejca.2006.05.009

    Article  Google Scholar 

  2. Robinson KE, Kuttesch JF, Champion JE et al (2010) A quantitative meta-analysis of neurocognitive sequelae in survivors of pediatric brain tumors. Pediatr Blood Cancer 55:525–531. https://doi.org/10.1002/pbc.22568

    Article  PubMed  Google Scholar 

  3. Zebrack BJ, Gurney JG, Oeffinger K et al (2004) Psychological outcomes in long-term survivors of childhood brain cancer: a report from the childhood cancer survivor study. J Clin Oncol Off J Am Soc Clin Oncol 22:999–1006. https://doi.org/10.1200/JCO.2004.06.148

    Article  Google Scholar 

  4. Wells EM, Ullrich NJ, Seidel K et al (2018) Longitudinal assessment of late-onset neurologic conditions in survivors of childhood central nervous system tumors: a Childhood Cancer Survivor Study report. Neuro-Oncol 20:132–142. https://doi.org/10.1093/neuonc/nox148

    Article  PubMed  Google Scholar 

  5. Macartney G, Harrison MB, VanDenKerkhof E et al (2014) Quality of life and symptoms in pediatric brain tumor survivors: a systematic review. J Pediatr Oncol Nurs Off J Assoc Pediatr Oncol Nurses 31:65–77. https://doi.org/10.1177/1043454213520191

    Article  Google Scholar 

  6. Zeltzer LK, Lu Q, Leisenring W et al (2008) Psychosocial outcomes and health-related quality of life in adult childhood cancer survivors: a report from the childhood cancer survivor study. Cancer Epidemiol Biomark Prev Publ Am Assoc Cancer Res Cosponsored Am Soc Prev Oncol 17:435–446. https://doi.org/10.1158/1055-9965.EPI-07-2541

    Article  Google Scholar 

  7. Cheung AT, Li WHC, Ho LLK et al (2019) Impact of brain tumor and its treatment on the physical and psychological well-being, and quality of life amongst pediatric brain tumor survivors. Eur J Oncol Nurs Off J Eur Oncol Nurs Soc 41:104–109. https://doi.org/10.1016/j.ejon.2019.06.003

    Article  Google Scholar 

  8. Szentes A, Erős N, Kekecs Z et al (2018) Cognitive deficits and psychopathological symptoms among children with medulloblastoma. Eur J Cancer Care 27(6):e12912. https://doi.org/10.1111/ecc.12912

    Article  Google Scholar 

  9. de Ruiter MA, Schouten-van Meeteren AYN, van Vuurden DG et al (2016) Psychosocial profile of pediatric brain tumor survivors with neurocognitive complaints. Qual Life Res Int J Qual Life Asp Treat Care Rehabil 25:435–446. https://doi.org/10.1007/s11136-015-1091-7

    Article  Google Scholar 

  10. Robinson KE, Pearson MM, Cannistraci CJ et al (2015) Functional neuroimaging of working memory in survivors of childhood brain tumors and healthy children: associations with coping and psychosocial outcomes. Child Neuropsychol J Norm Abnorm Dev Child Adolesc 21:779–802. https://doi.org/10.1080/09297049.2014.924492

    Article  Google Scholar 

  11. Moitra E, Armstrong CL (2013) Neural substrates for heightened anxiety in children with brain tumors. Dev Neuropsychol 38:337–351. https://doi.org/10.1080/87565641.2013.799673

    Article  PubMed  Google Scholar 

  12. Sands SA, Pasichow KP (2009) Psychological and social impact of being a pediatric brain tumor survivor. Cancer Treat Res 150:297–307. https://doi.org/10.1007/b109924_18

    Article  PubMed  Google Scholar 

  13. Schultz KAP, Ness KK, Whitton J et al (2007) Behavioral and social outcomes in adolescent survivors of childhood cancer: a report from the childhood cancer survivor study. J Clin Oncol Off J Am Soc Clin Oncol 25:3649–3656. https://doi.org/10.1200/JCO.2006.09.2486

    Article  Google Scholar 

  14. Poggi G, Liscio M, Galbiati S et al (2005) Brain tumors in children and adolescents: cognitive and psychological disorders at different ages. Psychooncology 14:386–395. https://doi.org/10.1002/pon.855

    Article  PubMed  Google Scholar 

  15. Carpentieri SC, Meyer EA, Delaney BL et al (2003) Psychosocial and behavioral functioning among pediatric brain tumor survivors. J Neurooncol 63:279–287

    Article  Google Scholar 

  16. Fuemmeler BF, Elkin TD, Mullins LL (2002) Survivors of childhood brain tumors: behavioral, emotional, and social adjustment. Clin Psychol Rev 22:547–585

    Article  Google Scholar 

  17. Walsh KS, Noll RB, Annett RD et al (2016) Standard of care for neuropsychological monitoring in pediatric neuro-oncology: lessons from the Children’s Oncology Group (COG). Pediatr Blood Cancer 63:191–195. https://doi.org/10.1002/pbc.25759

    Article  PubMed  Google Scholar 

  18. Wiener L, Kazak AE, Noll RB et al (2015) Standards for the psychosocial care of children with cancer and their families: an introduction to the special issue. Pediatr Blood Cancer 62(Suppl 5):S419-424. https://doi.org/10.1002/pbc.25675

    Article  PubMed  PubMed Central  Google Scholar 

  19. Tallen G, Resch A, Calaminus G et al (2015) Strategies to improve the quality of survival for childhood brain tumour survivors. Eur J Paediatr Neurol EJPN Off J Eur Paediatr Neurol Soc 19:619–639. https://doi.org/10.1016/j.ejpn.2015.07.011

    Article  Google Scholar 

  20. Abate C, Lippé S, Bertout L, et al. (2018) Could we use parent report as a valid proxy of child report on anxiety, depression, and distress? A systematic investigation of father-mother-child triads in children successfully treated for leukemia. Pediatr Blood Cancer 65. https://doi.org/10.1002/pbc.26840

  21. Upton P, Lawford J, Eiser C (2008) Parent-child agreement across child health-related quality of life instruments: a review of the literature. Qual Life Res Int J Qual Life Asp Treat Care Rehabil 17:895–913. https://doi.org/10.1007/s11136-008-9350-5

    Article  Google Scholar 

  22. American Psychiatric Association (2013) Diagnostic and statistical manual of mental disorders (DSM-5®). American Psychiatric Pub

  23. Kahalley LS, Conklin HM, Tyc VL et al (2011) ADHD and secondary ADHD criteria fail to identify many at-risk survivors of pediatric ALL and brain tumor. Pediatr Blood Cancer 57:110–118. https://doi.org/10.1002/pbc.22998

    Article  PubMed  PubMed Central  Google Scholar 

  24. Lanier JC, Abrams AN (2017) Posterior fossa syndrome: review of the behavioral and emotional aspects in pediatric cancer patients. Cancer 123:551–559. https://doi.org/10.1002/cncr.30238

    Article  PubMed  Google Scholar 

  25. Thomale U-W, Driever PH (2013) Inconsistent terminology for cerebellar mutism. Childs Nerv Syst ChNS Off J Int Soc Pediatr Neurosurg 29:717–718. https://doi.org/10.1007/s00381-013-2074-z

    Article  Google Scholar 

  26. Moitra E, Armstrong CL (2009) Tumor locus moderates anxiety symptoms in a pediatric neuro-oncologic sample. Child Neuropsychol J Norm Abnorm Dev Child Adolesc 15:460–470. https://doi.org/10.1080/09297040802665769

    Article  Google Scholar 

  27. Hardy KK, Willard VW, Wigdor AB et al (2015) The potential utility of parent-reported attention screening in survivors of childhood cancer to identify those in need of comprehensive neuropsychological evaluation. Neuro-Oncol Pract 2:32–39. https://doi.org/10.1093/nop/npu026

    Article  Google Scholar 

  28. Schmahmann JD (2019) Pediatric post-operative cerebellar mutism syndrome, cerebellar cognitive affective syndrome, and posterior fossa syndrome: historical review and proposed resolution to guide future study. Childs Nerv Syst ChNS Off J Int Soc Pediatr Neurosurg. https://doi.org/10.1007/s00381-019-04253-6

    Article  Google Scholar 

  29. Wickenhauser ME, Khan RB, Raches D et al (2020) Characterizing posterior fossa syndrome: a survey of experts. Pediatr Neurol 104:19–22. https://doi.org/10.1016/j.pediatrneurol.2019.11.007

    Article  PubMed  Google Scholar 

  30. Gudrunardottir T, Morgan AT, Lux AL et al (2016) Consensus paper on post-operative pediatric cerebellar mutism syndrome: the Iceland Delphi results. Childs Nerv Syst ChNS Off J Int Soc Pediatr Neurosurg 32:1195–1203. https://doi.org/10.1007/s00381-016-3093-3

    Article  Google Scholar 

  31. Cristofori I, Cohen-Zimerman S, Grafman J (2019) Chapter 11 - executive functions. In: D’Esposito M, Grafman JH (eds) Handbook of clinical neurology. Elsevier, pp 197–219

  32. Brier MJ, Schwartz LA, Kazak AE (2015) Psychosocial, health-promotion, and neurocognitive interventions for survivors of childhood cancer: a systematic review. Health Psychol Off J Div Health Psychol Am Psychol Assoc 34:130–148. https://doi.org/10.1037/hea0000119

    Article  Google Scholar 

  33. Abdel-Baki MS, Hanzlik E, Kieran MW (2015) Multidisciplinary pediatric brain tumor clinics: the key to successful treatment? CNS Oncol 4:147–155. https://doi.org/10.2217/cns.15.1

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  34. Van Schoors M, Caes L, Knoble NB et al (2017) Systematic review: associations between family functioning and child adjustment after pediatric cancer diagnosis: a meta-analysis. J Pediatr Psychol 42:6–18. https://doi.org/10.1093/jpepsy/jsw070

    Article  PubMed  Google Scholar 

  35. Willard VW (2018) Social skills interventions for survivors of pediatric brain tumors: a review and reformulation. Pediatr Blood Cancer 65(12):e27434. https://doi.org/10.1002/pbc.27434

    Article  PubMed  Google Scholar 

  36. Scialla MA, Canter KS, Chen FF et al (2017) Implementing the psychosocial standards in pediatric cancer: current staffing and services available. Pediatr Blood Cancer. https://doi.org/10.1002/pbc.26634

    Article  PubMed  PubMed Central  Google Scholar 

  37. Raj SP, Narad ME, Salloum R et al (2018) Development of a web-based psychosocial intervention for adolescent and young adult survivors of pediatric brain tumor. J Adolesc Young Adult Oncol 7:187–195. https://doi.org/10.1089/jayao.2017.0084

    Article  PubMed  Google Scholar 

  38. Wakefield CE, Sansom-Daly UM, McGill BC et al (2015) Online parent-targeted cognitive-behavioural therapy intervention to improve quality of life in families of young cancer survivors: study protocol for a randomised controlled trial. Trials 16:153. https://doi.org/10.1186/s13063-015-0681-6

    Article  PubMed  PubMed Central  Google Scholar 

  39. Jones B, Currin-Mcculloch J, Pelletier W et al (2018) Psychosocial standards of care for children with cancer and their families: a national survey of pediatric oncology social workers. Soc Work Health Care 57:221–249. https://doi.org/10.1080/00981389.2018.1441212

    Article  PubMed  PubMed Central  Google Scholar 

  40. van’t Hooft I, Lindahl Norberg A, Björklund A, et al (2016) Multiprofessional follow-up programmes are needed to address psychosocial, neurocognitive and educational issues in children with brain tumours. Acta Paediatr Oslo Nor 1992(105):676–683. https://doi.org/10.1111/apa.13207

    Article  Google Scholar 

  41. Northman L, Ross S, Morris M, Tarquini S (2015) Supporting pediatric cancer survivors with neurocognitive late effects: a model of care. J Pediatr Oncol Nurs Off J Assoc Pediatr Oncol Nurses 32:134–142. https://doi.org/10.1177/1043454214554012

    Article  Google Scholar 

  42. KT Baum SK Powell LA Jacobson et al 2017 Implementing guidelines: proposed definitions of neuropsychology services in pediatric oncology Pediatr Blood Cancer 64. https://doi.org/10.1002/pbc.26446

Download references

Acknowledgements

The authors would like to acknowledge all health professionals who participated in this survey.

Author information

Authors and Affiliations

  1. Psycho-Oncology Unit, Gustave Roussy, 114, Rue Edouard Vaillant, 94805, Villejuif Cedex, France

    Clémentine Lopez, Estelle Favré, Léonor Fasse & Cécile Flahault

  2. Laboratoire de Psychopathologie et Processus de Santé, Université de Paris, 92100, Boulogne-Billancourt, France

    Clémentine Lopez, Kristopher Lamore, Léonor Fasse & Cécile Flahault

  3. Hematology-Oncology Department, Sainte-Justine UHC, Montréal, QC, Canada

    Serge Sultan

  4. Department of Psychology, Université de Montréal, Montréal, QC, Canada

    Serge Sultan

  5. Department of Pediatric and Adolescent Oncology, Gustave Roussy, Villejuif, France

    Christelle Dufour

Authors
  1. Clémentine Lopez
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Serge Sultan
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Kristopher Lamore
    View author publications

    You can also search for this author in PubMed Google Scholar

  4. Christelle Dufour
    View author publications

    You can also search for this author in PubMed Google Scholar

  5. Estelle Favré
    View author publications

    You can also search for this author in PubMed Google Scholar

  6. Léonor Fasse
    View author publications

    You can also search for this author in PubMed Google Scholar

  7. Cécile Flahault
    View author publications

    You can also search for this author in PubMed Google Scholar

Contributions

Conception and design of the study: Clémentine Lopez, Serge Sultan, Cécile Flahault; screening and recruitment of the participants of the study: Clémentine Lopez, Christelle Dufour; data analysis and interpretation: Clémentine Lopez, Kristopher Lamore, Serge Sultan, Cécile Flahault; draft and revision of the paper: Clémentine Lopez, Serge Sultan, Kristopher Lamore, Christelle Dufour, Estelle Favré, Léonor Fasse, Cécile Flahault.

Corresponding author

Correspondence to Clémentine Lopez.

Ethics declarations

Ethics approval

In France, studies assessing health professionals’ practice anonymously do not require ethics committee approval. In our study, all answers were fully anonymous and untraceable. However, this survey is a preliminary study associated to PsyCog Family study, a larger research including pediatric brain tumor survivors and their parents. PsyCog Family study was approved by Ethic Committee of Ile-de France VI (ID RCB: 2014-A00924-43).

Consent to participate

Information on the study and its objectives was provided to the participants. Informed consent was obtained from all individual participants included in the study.

Consent for publication

We confirm that the manuscript has been read and approved for submission by all authors, that all persons listed as authors have contributed to preparing the manuscript, and that no persons other than the authors listed have contributed significantly to its preparation.

Conflict of interest

The authors declare no competing interests.

Additional information

Publisher's note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Supplementary Information

Below is the link to the electronic supplementary material.

Supplementary file1 (DOCX 31 KB)

Rights and permissions

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Lopez, C., Sultan, S., Lamore, K. et al. Difficulties encountered by physicians and mental health professionals in evaluating and caring for affective and behavioral problems in pediatric brain tumor survivors. Support Care Cancer 29, 6771–6780 (2021). https://doi.org/10.1007/s00520-021-06250-5

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00520-021-06250-5

Keywords

Search

Navigation