Skip to main content
Log in

Impact of selective dorsal rhizotomy to cerebral palsy children caregivers’ burden

  • Research
  • Published:
Child's Nervous System Aims and scope Submit manuscript

Abstract

Purpose

It is known that cerebral palsy (CP) children’s caregivers suffer from burden, depression, and stress, impairing their quality of life (QoL). The more severe the CP, the more burden the caregiver has. Psychosocial support, education, therapies, and financial support are inversely related to the level of stress of the caregiver. Most parents of CP patients submitted to selective dorsal rhizotomy (SDR) report improvement not just on spasticity, but also in the functional role of the children, what can impact on caregiver’s QoL. Our objective was to evaluate the burden of CP children’s caregivers with and without previous SDR.

Methods

Spastic CP children caregivers were divided into two groups: those who take care of children without previous SDR (control group) and those that children were previously submitted to SDR (surgical group). The burden index was compared between groups using Burden Interview Questionnaire (BIQ). For statistical analysis, we used SPSS.

Results

The control group had enrolled 31 participants and the surgical group 36. The mean GMFCS level on the control and surgical groups was 3.94 ± 1.26 and 3.74 ± 1.12 (p = 0.61), respectively. The surgical group caregivers presented less burden related to the feeling that they should be doing more to their child (p = 0.003) and if they could do a better job in caring (p = 0.032), compared to controls. The total BIQ index was not significantly different between groups (surgical 32.14 ± 12.34 vs. control 36.77 ± 12.77; p = 0.87). Low economic status had a weak correlation to a higher BIQ index (R2 = 0.24). After age-matching, there was a significative higher BIQ index in the control group (p = 0.008).

Conclusion

Caregivers of spastic CP children who were previously submitted to SDR presented less burden related to feeling of the amount of given care than those without previous surgery. The impression that they could do a better job with their kids was higher in the control group. The severity of CP and low economic status were related to more burden in both groups. After pairing groups by age, the control group had a significative higher BIQ index compared to the SDR group.

Clinical trial registration

Trial registration number: CAAE 73407317.6.0000.0068 (Ethical and Research Committee of University of Sao Paulo, Sao Paulo, Brazil, approved on 08/06/2021). All the subjects were freely given an informed consent to participate in the study that was obtained from all participants. Non-consented ones were excluded from the study.

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
Fig. 2
Fig. 3
Fig. 4
Fig. 5
Fig. 6
Fig. 7

Similar content being viewed by others

References

  1. Blair E (2010) Epidemiology of the cerebral palsies. Orthop Clin North Am 41:441–455. https://doi.org/10.1016/j.ocl.2010.06.004

    Article  PubMed  Google Scholar 

  2. Vadivelan K, Sekar P, Sruthi SS, Gopichandran V (2020) Burden of caregivers of children with cerebral palsy: an intersectional analysis of gender, poverty, stigma, and public policy. BMC Public Health 20:645. https://doi.org/10.1186/s12889-020-08808-0

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  3. Camargos ACR, de Lacerda TTB, Viana SO et al (2009) Avaliação da sobrecarga do cuidador de crianças com paralisia cerebral através da escala Burden Interview. Revista Brasileira de Saúde Materno Infantil 9:31–37. https://doi.org/10.1590/S1519-38292009000100004

    Article  Google Scholar 

  4. Wijesinghe CJ, Cunningham N, Fonseka P et al (2015) Factors associated with caregiver burden among caregivers of children with cerebral palsy in Sri Lanka. Asia Pac J Public Health 27:85–95. https://doi.org/10.1177/1010539514548756

    Article  PubMed  Google Scholar 

  5. Marrón EM, Redolar-Ripol D, Boixadós M et al (2013) Burden on caregivers of children with cerebral palsy: predictors and related factors. Universitas Psychologica 12:767–777

    Google Scholar 

  6. Tedroff K, Löwing K, Åström E (2014) A prospective cohort study investigating gross motor function, pain, and health-related quality of life 17 years after selective dorsal rhizotomy in cerebral palsy. Dev Med Child Neurol. https://doi.org/10.1111/dmcn.12665

    Article  PubMed  Google Scholar 

  7. Veerbeek BE, Lamberts RP, Kosel E et al (2022) More than 25 years after selective dorsal rhizotomy: physical status, quality of life, and levels of anxiety and depression in adults with cerebral palsy. J Neurosurg 136:689–698. https://doi.org/10.3171/2021.3.JNS204096

    Article  PubMed  Google Scholar 

  8. Park TS, Dobbs MB, Cho J (2018) Evidence supporting selective dorsal rhizotomy for treatment of spastic cerebral palsy. Cureus 10:e3466. https://doi.org/10.7759/cureus.3466

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  9. Lewis JA, Bear N, Smith N et al (2022) Goal setting, goal attainment and quality of life of children following selective dorsal rhizotomy. Child Care Health Dev. https://doi.org/10.1111/cch.13090

    Article  PubMed  Google Scholar 

  10. Robins JMW, Boyle A, McCune K et al (2020) Quality of life after selective dorsal rhizotomy: an assessment of family-reported outcomes using the CPQoL questionnaire. Childs Nerv Syst 36:1977–1983. https://doi.org/10.1007/s00381-020-04546-1

    Article  PubMed  Google Scholar 

  11. Summers J, Coker B, Eddy S et al (2019) Selective dorsal rhizotomy in ambulant children with cerebral palsy: an observational cohort study. Lancet Child Adolesc Health 3:455–462. https://doi.org/10.1016/S2352-4642(19)30119-1

    Article  PubMed  PubMed Central  Google Scholar 

  12. O’Sullivan R, Leonard J, Quinn A, Kiernan D (2019) The short-term effects of selective dorsal rhizotomy on gait compared to matched cerebral palsy control groups. PLoS ONE 14:e0220119. https://doi.org/10.1371/journal.pone.0220119

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  13. Jeffery SMT, Markia B, Pople IK et al (2019) Surgical outcomes of single-level bilateral selective dorsal rhizotomy for spastic diplegia in 150 consecutive patients. World Neurosurg 125:e60–e66. https://doi.org/10.1016/j.wneu.2018.12.187

    Article  PubMed  Google Scholar 

  14. Tedroff K, Hägglund G, Miller F (2019) Long-term effects of selective dorsal rhizotomy in children with cerebral palsy: a systematic review. Dev Med Child Neurol. https://doi.org/10.1111/dmcn.14320

    Article  PubMed  PubMed Central  Google Scholar 

  15. Ingale H, Ughratdar I, Muquit S et al (2016) Selective dorsal rhizotomy as an alternative to intrathecal baclofen pump replacement in GMFCS grades 4 and 5 children. Childs Nerv Syst 32:321–325. https://doi.org/10.1007/s00381-015-2950-9

    Article  PubMed  Google Scholar 

  16. D’Aquino D, Moussa AA, Ammar A et al (2018) Selective dorsal rhizotomy for the treatment of severe spastic cerebral palsy: efficacy and therapeutic durability in GMFCS grade IV and V children. Acta Neurochir (Wien) 160:811–821. https://doi.org/10.1007/s00701-017-3349-z

    Article  PubMed  Google Scholar 

  17. Scazufca M (2002) Brazilian version of the burden interview scale for the assessment of burden of care in carers of people with mental illnesses. Brazilian Journal of Psychiatry 24:12–17. https://doi.org/10.1590/S1516-44462002000100006

    Article  Google Scholar 

  18. Raina P, O’Donnell M, Schwellnus H et al (2004) Caregiving process and caregiver burden: conceptual models to guide research and practice. BMC Pediatr 4:1. https://doi.org/10.1186/1471-2431-4-1

    Article  PubMed  PubMed Central  Google Scholar 

  19. dos Santos RM, Massi G, Willig MH et al (2017) Children and adolescents with cerebral palsy in the perspective of familial caregivers. Rev CEFAC 19:821–830. https://doi.org/10.1590/1982-021620171969817

    Article  Google Scholar 

  20. Raina P, O’Donnell M, Rosenbaum P et al (2005) The health and well-being of caregivers of children with cerebral palsy. Pediatrics 115:e626-636. https://doi.org/10.1542/peds.2004-1689

    Article  PubMed  Google Scholar 

  21. Nordmark E, Josenby AL, Lagergren J et al (2008) Long-term outcomes five years after selective dorsal rhizotomy. BMC Pediatr 8:54. https://doi.org/10.1186/1471-2431-8-54

    Article  PubMed  PubMed Central  Google Scholar 

  22. Buckon CE, Sienko Thomas S, Aiona MD, Piatt JH (1996) Assessment of upper-extremity function in children with spastic diplegia before and after selective dorsal rhizotomy. Dev Med Child Neurol 38:967–975. https://doi.org/10.1111/j.1469-8749.1996.tb15057.x

    Article  CAS  PubMed  Google Scholar 

  23. Abbott R, Johann-Murphy M, Shiminski-Maher T et al (1993) Selective dorsal rhizotomy: outcome and complications in treating spastic cerebral palsy. Neurosurgery 33:851–857

    CAS  PubMed  Google Scholar 

  24. Dudley RWR, Parolin M, Gagnon B et al (2013) Long-term functional benefits of selective dorsal rhizotomy for spastic cerebral palsy. J Neurosurg Pediatr 12:142–150. https://doi.org/10.3171/2013.4.PEDS12539

    Article  PubMed  Google Scholar 

  25. Grunt S, Becher JG, Vermeulen RJ (2011) Long-term outcome and adverse effects of selective dorsal rhizotomy in children with cerebral palsy: a systematic review. Dev Med Child Neurol 53:490–498. https://doi.org/10.1111/j.1469-8749.2011.03912.x

    Article  PubMed  Google Scholar 

  26. Josenby AL, Wagner P, Jarnlo G-B et al (2015) Functional performance in self-care and mobility after selective dorsal rhizotomy: a 10-year practice-based follow-up study. Dev Med Child Neurol 57:286–293. https://doi.org/10.1111/dmcn.12610

    Article  PubMed  Google Scholar 

  27. Langerak NG, Lamberts RP, Fieggen AG et al (2008) A prospective gait analysis study in patients with diplegic cerebral palsy 20 years after selective dorsal rhizotomy. J Neurosurg Pediatr 1:180–186. https://doi.org/10.3171/PED/2008/1/3/180

    Article  PubMed  Google Scholar 

  28. Ailon T, Beauchamp R, Miller S et al (2015) Long-term outcome after selective dorsal rhizotomy in children with spastic cerebral palsy. Childs Nerv Syst 31:415–423. https://doi.org/10.1007/s00381-015-2614-9

    Article  PubMed  Google Scholar 

  29. Steinbok P (2007) Selective dorsal rhizotomy for spastic cerebral palsy: a review. Childs Nerv Syst 23:981–990. https://doi.org/10.1007/s00381-007-0379-5

    Article  PubMed  Google Scholar 

  30. Assumpcao de Monaco B, Fruett da Costa PR, Franceschini PR (2023) Intracerebroventricular baclofen therapy improves function and quality of life in a child with severe cerebral palsy. Childs Nerv Syst. https://doi.org/10.1007/s00381-023-06084-y

    Article  PubMed  Google Scholar 

  31. Langerak NG, Veerbeek BE, Fieggen AG, Lamberts RP (2022) Gait status 26–35 years after selective dorsal rhizotomy: a 9 year follow up study. Gait Posture 91:284–289. https://doi.org/10.1016/j.gaitpost.2021.10.031

    Article  PubMed  Google Scholar 

  32. dos Teixeira MP, de Monaco BA, de Navarro JM et al (2021) Surgical treatment for spasticity: selective dorsal rhizotomy – technique and literature review. Arquivos Brasileiros de Neurocirurgia: Brazilian Neurosurgery 40:e238–e244. https://doi.org/10.1055/s-0038-1623514

    Article  Google Scholar 

  33. Hägglund G, Pettersson K, Czuba T et al (2018) Incidence of scoliosis in cerebral palsy. Acta Orthop 89:443–447. https://doi.org/10.1080/17453674.2018.1450091

    Article  PubMed  PubMed Central  Google Scholar 

  34. Funk JF, Haberl H (2016) Monosegmental laminoplasty for selective dorsal rhizotomy—operative technique and influence on the development of scoliosis in ambulatory children with cerebral palsy. Childs Nerv Syst 32:819–825. https://doi.org/10.1007/s00381-016-3016-3

    Article  PubMed  Google Scholar 

  35. Geng H-M, Chuang D-M, Yang F et al (2018) Prevalence and determinants of depression in caregivers of cancer patients: a systematic review and meta-analysis. Medicine (Baltimore) 97:e11863. https://doi.org/10.1097/MD.0000000000011863

    Article  PubMed  Google Scholar 

  36. Ribé JM, Salamero M, Pérez-Testor C et al (2018) Quality of life in family caregivers of schizophrenia patients in Spain: caregiver characteristics, caregiving burden, family functioning, and social and professional support. Int J Psychiatry Clin Pract 22:25–33. https://doi.org/10.1080/13651501.2017.1360500

    Article  PubMed  Google Scholar 

  37. Yu H, Wang X, He R et al (2015) Measuring the caregiver burden of caring for community-residing people with Alzheimer’s disease. PLoS ONE 10:e0132168. https://doi.org/10.1371/journal.pone.0132168

    Article  CAS  PubMed  PubMed Central  Google Scholar 

Download references

Author information

Authors and Affiliations

Authors

Contributions

Conceptualization: BAdM, AADRC, EJLA, and MJT; methodology: BAdM, AADRC, and EJLA; formal analysis and investigation: BAdM and AADRC; writing—original draft preparation: BAdM; writing: BAdM, EJLA, and MJT; supervision: MJT and EJLA.

Corresponding author

Correspondence to Bernardo Assumpcao de Monaco.

Ethics declarations

Conflict of interest

All authors declare no competing interests related to this paper.

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 15 KB)

Supplementary file2 (DOCX 18 KB)

Rights and permissions

Springer Nature or its licensor (e.g. a society or other partner) holds exclusive rights to this article under a publishing agreement with the author(s) or other rightsholder(s); author self-archiving of the accepted manuscript version of this article is solely governed by the terms of such publishing agreement and applicable law.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Assumpcao de Monaco, B., Alves Du Rocher Candido, A., Jacobsen Teixeira, M. et al. Impact of selective dorsal rhizotomy to cerebral palsy children caregivers’ burden. Childs Nerv Syst 40, 1461–1469 (2024). https://doi.org/10.1007/s00381-024-06291-1

Download citation

  • Received:

  • Accepted:

  • Published:

  • Issue Date:

  • DOI: https://doi.org/10.1007/s00381-024-06291-1

Keywords

Navigation