The Aftercare Survey: Assessment and intervention practices after brain tumor surgery in Europe

Author:

Sierpowska Joanna12ORCID,Rofes Adrià3,Dahlslätt Kristoffer,Mandonnet Emmanuel4,ter Laan Mark5ORCID,Połczyńska Monika6,Hamer Philip De Witt7,Halaj Matej8,Spena Giannantonio9,Meling Torstein R10,Motomura Kazuya11ORCID,Reyes Andrés Felipe1213,Campos Alexandre Rainha14,Robe Pierre A15,Zigiotto Luca1617,Sarubbo Silvio1617,Freyschlag Christian F18,Broen Martijn P G19,Stranjalis George20,Papadopoulos Konstantinos20,Liouta Evangelia20,Rutten Geert-Jan21,Viegas Catarina Pessanha22,Silvestre Ana22,Perrote Federico23,Brochero Natacha23,Cáceres Cynthia24,Zdun-Ryżewska Agata25,Kloc Wojciech2627,Satoer Djaina28,Dragoy Olga29,Hendriks Marc P H3031,Alvarez-Carriles Juan C323334,Piai Vitória12

Affiliation:

1. Donders Institute for Brain, Cognition and Behaviour, Radboud University , Nijmegen , the Netherlands

2. Department of Medical Psychology, Donders Institute for Brain Cognition and Behaviour, Radboud University Medical Center , Nijmegen , the Netherlands

3. Department of Neurolinguistics, University of Groningen , Groningen , the Netherlands

4. Neurosurgery Department, Hôpital Lariboisière , Paris , France

5. Department of Neurosurgery, Radboud Institute of Health Science, Radboud University Medical Center , Nijmegen , the Netherlands

6. Department of Psychiatry and Biobehavioral Sciences, University of California, Los Angeles , Los Angeles, California , USA

7. Medical Department, Amsterdam University , Amsterdam , the Netherlands

8. Department of Neurosurgery, University Hospital Olomouc , Olomouc , Czech Republic

9. Neurosurgery Department, Alessandro Manzoni Hospital , Lecco , Italy

10. Department of Neurosurgery, Geneva University Hospital , Geneva , Switzerland

11. Department of Neurosurgery, Nagoya University School of Medicine , Nagoya , Japan

12. Experimental Psychology Lab, Faculty of Psychology, Universidad El Bosque , Bogotá , Colombia

13. Graduate School for the Humanities (GSH), University of Groningen , Groningen , the Netherlands

14. Department of Neurosurgery, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte , Lisbon , Portugal

15. Department of Neurology and Neurosurgery, University Medical Center of Utrecht , Utrecht , the Netherlands

16. Department of Neurosurgery, “S. Chiara” Hospital, Azienda Provinciale per i Servizi Sanitari , Trento , Italy

17. Structural and Functional Connectivity Lab Project, “S. Chiara” Hospital, Azienda Provinciale per i Servizi Sanitari , Trento , Italy

18. Department of Neurosurgery, Medical University of Innsbruck , Innsbruck , Austria

19. Department of Neurology, GROW School for Oncology and Developmental Biology, Maastricht University Medical Center , Maastricht , the Netherlands

20. Department of Neurosurgery, National and Kapodistrian University of Athens, Evangelismos Hospital , Athens , Greece

21. Department of Neurosurgery, Elisabeth-Tweesteden Hospital , Tilburg , the Netherlands

22. Department of Neurosurgery, Hospital Garcia de Orta , Lisbon , Portugal

23. Department of Neurosurgery and Neurology, Private University Hospital of Córdoba , Córdoba , Argentina

24. Department of Neurosciences, Hospital Universitari Germans Trias i Pujol , Barcelona , Spain

25. Department of Quality-of-Life Research, Medical University of Gdansk , Gdansk , Poland

26. Department of Psychology and Sociology of Health and Public Health School of Public Health Collegium Medicum, University of Warmia—Mazury in Olsztyn , Olsztyn , Poland

27. Department of Neurosurgery, Copernicus PL , Gdansk , Poland

28. Department of Neurosurgery, Erasmus MC—University Medical Center Rotterdam, Rotterdam , the Netherlands

29. Center for Language and Brain, HSE University , Moscow , Russia

30. Academic Centre for Epileptology, Kempenhaeghe , Heeze , the Netherlands

31. Department of Neurosurgery, Maastricht University Medical Centre (MUMC+) , Maastricht , the Netherlands

32. Clinical Neuropsychology Unit, Liaison Mental Health Service, Hospital Universitario Central de Asturias , Oviedo , Spain

33. Department of Psychology, University of Oviedo , Oviedo , Spain

34. ISPA, Health Research Institute of Principado de Asturias , Oviedo , Spain

Abstract

Abstract Background People with gliomas need specialized neurosurgical, neuro-oncological, psycho-oncological, and neuropsychological care. The role of language and cognitive recovery and rehabilitation in patients’ well-being and resumption of work is crucial, but there are no clear guidelines for the ideal timing and character of assessments and interventions. The goal of the present work was to describe representative (neuro)psychological practices implemented after brain surgery in Europe. Methods An online survey was addressed to professionals working with individuals after brain surgery. We inquired about the assessments and interventions and the involvement of caregivers. Additionally, we asked about recommendations for an ideal assessment and intervention plan. Results Thirty-eight European centers completed the survey. Thirty of them offered at least one postsurgical (neuro)psychological assessment, mainly for language and cognition, especially during the early recovery stage and at long term. Twenty-eight of the participating centers offered postsurgical therapies. Patients who stand the highest chances of being included in evaluation and therapy postsurgically are those who underwent awake brain surgery, harbored a low-grade glioma, or showed poor recovery. Nearly half of the respondents offer support programs to caregivers, and all teams recommend them. Treatments differed between those offered to individuals with low-grade glioma vs those with high-grade glioma. The figure of caregiver is not yet fully recognized in the recovery phase. Conclusion We stress the need for more complete rehabilitation plans, including the emotional and health-related aspects of recovery. In respondents’ opinions, assessment and rehabilitation plans should also be individually tailored and goal-directed (eg, professional reinsertion).

Funder

Netherlands Organization for Scientific Research

National Institute on Deafness and Other Communication Disorders, USA

Center for Language and Brain NRU Higher School of Economics, RF Government

Publisher

Oxford University Press (OUP)

Subject

Medicine (miscellaneous)

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