Hostname: page-component-669899f699-7tmb6 Total loading time: 0 Render date: 2025-04-25T07:35:43.297Z Has data issue: false hasContentIssue false
  • English
  • Français

The experience of living with malignant meningioma

Published online by Cambridge University Press:  24 May 2023

Andrea Daniela Maier Open the ORCID record for Andrea Daniela Maier [Opens in a new window] ,
Sara Nordentoft ,
Tiit Mathiesen  and
Rikke Guldager
Andrea Daniela Maier*
Affiliation:
Department of Neurosurgery, Copenhagen University Hospital, Copenhagen, Denmark Department of Pathology, Copenhagen University Hospital, Copenhagen, Denmark
Sara Nordentoft
Affiliation:
Department of Neurosurgery, Copenhagen University Hospital, Copenhagen, Denmark
Tiit Mathiesen
Affiliation:
Department of Neurosurgery, Copenhagen University Hospital, Copenhagen, Denmark Department of Clinical Medicine, University of Copenhagen, Copenhagen, Denmark Department of Clinical Neuroscience, Karolinska Institutet, Stockholm, Sweden
Rikke Guldager
Affiliation:
Department of Neurosurgery, Copenhagen University Hospital, Copenhagen, Denmark
*
Corresponding author: Andrea Daniela Maier; Email: andrea.maier@regionh.dk
Get access Rights & Permissions [Opens in a new window]

Abstract

Objectives

Meningiomas are the most common, primary intracranial tumor and most are benign. Little is known of the rare patient group living with a malignant meningioma, comprising 1–3% of all meningiomas. Our aim was to explore how patients perceived quality of daily life after a malignant meningioma diagnosis.

Methods

This qualitative explorative study was composed of individual semi-structured interviews. Eligible patients (n = 12) were selected based on ability to participate in an interview, from a background population of 23 patients diagnosed with malignant meningioma at Rigshospitalet from 2000 to 2021. We performed an inductive thematic analysis following Braun and Clarke’s guidelines.

Results

Eight patients were interviewed. The analysis revealed 4 overarching themes: (1) perceived illness and cause of symptoms, (2) identity, roles, and interaction, (3) threat and uncertainty of the future, and (4) belief in authority. The perceived quality of daily life is negatively impacted by the disease. Patients experience a shift in self-concept and close interactions, and some struggle with accepting a new everyday life. Patients have a high risk of discordant prognostic awareness in relation to health-care professionals.

Significance of results

We provide a much-needed patient-centered perspective of living with malignant meningioma: quality of life was affected by perception of threat and an uncertainty of the future. Perception of illness and the interpretation of the cause of symptoms varied between subjects, but a common trait was that patients’ identity, roles, and interactions were affected. Shared decision-making and a strengthened continuity during follow-up could aid this rare patient group.

Keywords

Everyday lifeMalignant meningiomaQualitative researchWHO grade 3 meningioma
Type
Original Article
Information
Palliative & Supportive Care , Volume 22 , Issue 2 , April 2024 , pp. 338 - 346
Check for updates
Copyright
© The Author(s), 2023. Published by Cambridge University Press.

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

Article purchase

Temporarily unavailable

References

Achey, RL, Gittleman, H, Schroer, J, et al. (2019) Nonmalignant and malignant meningioma incidence and survival in the elderly, 2005-2015, using the Central Brain Tumor Registry of the United States. Neuro-Oncology 21(3), 380–391. doi:10.1093/neuonc/noy162CrossRefGoogle ScholarPubMed
Applebaum, AJ, Kolva, EA, Kulikowski, JR, et al. (2014) Conceptualizing prognostic awareness in advanced cancer: A systematic review. Journal of Health Psychology 19(9), 1103–1119. doi:10.1177/1359105313484782CrossRefGoogle ScholarPubMed
Baba, A, McCradden, MD, Rabski, J, et al. (2020) Determining the unmet needs of patients with intracranial meningioma – A qualitative assessment. Neuro-Oncology Practice 7(2), 228–238.Google ScholarPubMed
Braun, V and Clarke, V (2006) Using thematic analysis in psychology. Qualitative Research in Psychology 3(2), 77–101. doi:10.1191/1478088706qp063oaCrossRefGoogle Scholar
Champeaux, C, Wilson, E, Brandner, S, et al. (2015) World Health Organization grade III meningiomas. A retrospective study for outcome and prognostic factors assessment. British Journal of Neurosurgery 29(5), 693–698. doi:10.3109/02688697.2015.1054350CrossRefGoogle ScholarPubMed
Collins, A, Lethborg, C, Gold, M, et al. (2014) The challenges and suffering of caring for people with primary malignant glioma: Qualitative perspectives on improving current supportive and palliative care practices. BMJ Supportive & Palliative Care 4(1), 68–76. doi:10.1136/bmjspcare-2012-000419CrossRefGoogle ScholarPubMed
Elia, G, Mayors Woods, LE and Pantilat, SZ (2020) End of life care for patients with meningioma. Handbook of Clinical Neurology 170, 333–348. doi:10.1016/B978-0-12-822198-3.00052-5CrossRefGoogle ScholarPubMed
El-Jawahri, A, Traeger, L, Kuzmuk, K, et al. (2015) Prognostic understanding, quality of life and mood in patients undergoing hematopoietic stem cell transplantation. Bone Marrow Transplantation 50(8), 1119–1124. doi:10.1038/bmt.2015.113CrossRefGoogle ScholarPubMed
El-Jawahri, A, Traeger, L, Park, ER, et al. (2014) Associations among prognostic understanding, quality of life, and mood in patients with advanced cancer. Cancer 120(2), 278–285. doi:10.1002/cncr.28369CrossRefGoogle ScholarPubMed
Enzinger, AC, Zhang, B, Schrag, D, et al. (2015) Outcomes of prognostic disclosure: Associations with prognostic understanding, distress, and relationship with physician among patients with advanced cancer. Journal of Clinical Oncology 33(32), 3809–3816. doi:10.1200/JCO.2015.61.9239CrossRefGoogle ScholarPubMed
Fang, P, Tan, L, Cui, J, et al. (2022) Effectiveness of Acceptance and Commitment Therapy for people with advanced cancer: A systematic review and meta-analysis of randomized controlled trials. Journal of Advanced Nursing 79(2), 519–538. doi:10.1111/jan.15543CrossRefGoogle Scholar
Fisher, K, Seow, H, Cohen, J, et al. (2015) Patient characteristics associated with prognostic awareness: A study of a Canadian palliative care population using the InterRAI palliative care instrument. Journal of Pain and Symptom Management 49(4), 716–725. doi:10.1016/j.jpainsymman.2014.08.008CrossRefGoogle ScholarPubMed
George, LK (2006) Perceived quality of life. In Binstock, RH, George, LK, Cutler, SJ, et al. (eds), Handbook of Aging and the Social Sciences. Cambridge: Academic Press, Elsevier, 320–336.10.1016/B978-012088388-2/50021-3CrossRefGoogle Scholar
Goldbrunner, R, Stavrinou, P, Jenkinson, MD, et al. (2021) EANO guideline on the diagnosis and management of meningiomas. Neuro-Oncology 23(11), 1821–1834. doi:10.1093/neuonc/noab150CrossRefGoogle ScholarPubMed
Gray, TF, Forst, D, Nipp, RD, et al. (2021) Prognostic awareness in caregivers of patients with incurable cancer. Journal of Palliative Medicine 24(4), 561–569. doi:10.1089/jpm.2020.0236CrossRefGoogle ScholarPubMed
Haider, S, Taphoorn, MJB, Drummond, KJ, et al. (2021) Health-related quality of life in meningioma. Neuro-Oncology Advances 3(1), 1–9. doi:10.1093/noajnl/vdab089CrossRefGoogle ScholarPubMed
Halkett, GKB, Lobb, EA, Oldham, L, et al. (2010) The information and support needs of patients diagnosed with High Grade Glioma. Patient Education and Counseling 79(1), 112–119. doi:10.1016/j.pec.2009.08.013CrossRefGoogle ScholarPubMed
Institute for Comparative Survey Research (2023) World values survey. Vienna, Austria. https://www.worldvaluessurvey.org/WVSOnline.jsp (accessed 9  January 2023).Google Scholar
Janda, M, Steginga, S, Dunn, J, et al. (2008) Unmet supportive care needs and interest in services among patients with a brain tumour and their carers. Patient Education and Counseling 71(2), 251–258. doi:10.1016/j.pec.2008.01.020CrossRefGoogle ScholarPubMed
Janssens, A, Derijcke, S, Galdermans, D, et al. (2019) Prognostic understanding and quality of life in patients with advanced lung cancer: A multicenter study. Clinical Lung Cancer 20(3), e369–75. doi:10.1016/j.cllc.2018.11.011CrossRefGoogle ScholarPubMed
Jen, MH, Sund, ER, Johnston, R, et al. (2010) Trustful societies, trustful individuals, and health: An analysis of self-rated health and social trust using the World Value Survey. Health & Place 16(5), 1022–1029. doi:10.1016/j.healthplace.2010.06.008CrossRefGoogle ScholarPubMed
Kaley, T, Barani, I, Chamberlain, M, et al. (2014) Historical benchmarks for medical therapy trials in surgery- and radiation-refractory meningioma: A RANO review. Neuro-Oncology 16(6), 829–840. doi:10.1093/neuonc/not330CrossRefGoogle Scholar
Kshettry, VR, Ostrom, QT, Kruchko, C, et al. (2015) Descriptive epidemiology of World Health Organization grades II and III intracranial meningiomas in the United States. Neuro-Oncology 17(8), 1166–1173. doi:10.1093/neuonc/nov069CrossRefGoogle ScholarPubMed
Li, X, Miao, Y, Han, L, et al. (2019) Meningioma grading using conventional MRI histogram analysis based on 3D tumor measurement. European Journal of Radiology 110, 45–53. doi:10.1016/j.ejrad.2018.11.016CrossRefGoogle ScholarPubMed
Lincoln, YS, and Guba, EG (1985) Naturalistic Inquiry. Newbury Park California, United States: Sage.CrossRefGoogle Scholar
Little, M (2001) Invited commentary: Is there a distinctively surgical ethics? Surgery 129(6), 668–671. doi:10.1067/msy.2001.111213CrossRefGoogle Scholar
Little, M (2002) The fivefold root of an ethics of surgery. Bioethics 16(3), 183–201. doi:10.1111/1467-8519.00281CrossRefGoogle ScholarPubMed
Louis, D, Ohgaki, H, Wiestler, O, et al. (2016) WHO Classification of Tumours of the Central Nervous System, 4th edn. Lyon: International Agency for Research on Cancer, World Health Organization.Google Scholar
Louis, DN, Perry, A, Wesseling, P, et al. (2021) The 2021 WHO classification of tumors of the central nervous system: A summary. Neuro-Oncology 23(8), 1231–1251. doi:10.1093/neuonc/noab106CrossRefGoogle ScholarPubMed
Maier, AD, Bartek, J, Eriksson, F, et al. (2020) Clinical and histopathological predictors of outcome in malignant meningioma. Neurosurgical Review 43(2), 643–653. doi:10.1007/s10143-019-01093-5.CrossRefGoogle ScholarPubMed
Maier, AD, Mirian, C, Haslund-Vinding, J, et al. (2022) Granular clinical history and outcome in 51 patients with primary and secondary malignant meningioma. Journal of Neurosurgery, 1–11. doi:10.3171/2022.7.JNS22585CrossRefGoogle ScholarPubMed
Malmström, A, Åkesson, L, Milos, P, et al. (2021) Do I want to know it all?” A qualitative study of glioma patients’ perspectives on receiving information about their diagnosis and prognosis. Supportive Care in Cancer 29(6), 3339–3346. doi:10.1007/s00520-020-05846-7CrossRefGoogle ScholarPubMed
Mead, GH, Joas, H, Huebner, DR, et al. (2015) Mind, Self, and Society: The Definitive Edition. Chicago, United States: University of Chicago Press.10.7208/chicago/9780226112879.001.0001CrossRefGoogle Scholar
Mone, S and Kerr, H (2021) Prognostic awareness in advanced cancer: An integrative literature review. BMJ Supportive & Palliative Care 11(1), 53–58. doi:10.1136/bmjspcare-2020-002287CrossRefGoogle ScholarPubMed
Moreau, JT, Hankinson, TC, Baillet, S, et al. (2020) Individual-patient prediction of meningioma malignancy and survival using the Surveillance, Epidemiology, and End Results database. NPJ Digital Medicine 3(1), . doi:10.1038/s41746-020-0219-5CrossRefGoogle ScholarPubMed
Philip, J, Collins, A, Brand, CA, et al. (2015) Health care professionals’ perspectives of living and dying with primary malignant glioma: Implications for a unique cancer trajectory. Palliative & Supportive Care 13(6), 1519–1527. doi:10.1017/S1478951513000576CrossRefGoogle ScholarPubMed
Piil, K, Jakobsen, J, Christensen, KB, et al. (2018) Needs and preferences among patients with high-grade glioma and their caregivers – A longitudinal mixed methods study. European Journal of Cancer Care 27(2), 1–13. doi:10.1111/ecc.12806CrossRefGoogle ScholarPubMed
Roberts, KE and Applebaum, AJ (2022) The benefits of concurrent engagement in meaning-centered psychotherapy and meaning-centered psychotherapy for cancer caregivers: A case study. Palliative & Supportive Care 20(5), 754–756.Google ScholarPubMed
Sá-Marta, E, Alves, JL, Rebelo, O, et al. (2021) World Health Organization grade III Meningiomas: A retrospective study at an academic medical center. World Neurosurgery 149, e877–e893. doi:10.1016/j.wneu.2021.01.080CrossRefGoogle ScholarPubMed
Sato, T, Soejima, K, Fujisawa, D, et al. (2018) Prognostic understanding at diagnosis and associated factors in patients with advanced lung cancer and their caregivers. The Oncologist 23(10), 1218–1229. doi:10.1634/theoncologist.2017-0329CrossRefGoogle ScholarPubMed
Sharma, A, Fruth, B, Barrera, C, et al. (2021) How much time do we have? Longitudinal perception of prognosis in newly-diagnosed high grade glioma patients and caregivers compared to clinicians. Journal of Neuro-Oncology 152(2), 313–323. doi:10.1007/s11060-021-03700-2CrossRefGoogle ScholarPubMed
Sterckx, W, Coolbrandt, A, Clement, P, et al. (2015) Living with a high-grade glioma: A qualitative study of patients’ experiences and care needs. European Journal of Oncology Nursing 19(4), 383–390. doi:10.1016/j.ejon.2015.01.003CrossRefGoogle ScholarPubMed
Sughrue, ME, Rutkowski, MJ, Chang, EF, et al. (2011) Postoperative seizures following the resection of convexity meningiomas: Are prophylactic anticonvulsants indicated? Journal of Neurosurgery 114(3), 705–709. doi:10.3171/2010.5.JNS091972CrossRefGoogle ScholarPubMed
Sughrue, ME, Sanai, N, Shangari, G, et al. (2010) Outcome and survival following primary and repeat surgery for World Health Organization Grade III meningiomas. Journal of Neurosurgery 113(2), 202–209. doi:10.3171/2010.1.JNS091114CrossRefGoogle ScholarPubMed
Thurin, E, Rydén, I, Skoglund, T, et al. (2021) Impact of meningioma surgery on use of antiepileptic, antidepressant, and sedative drugs: A Swedish nationwide matched cohort study. Cancer Medicine 10(9), 2967–2977. doi:10.1002/cam4.3868CrossRefGoogle ScholarPubMed
Turner, LH, and West, RL (2017) Introducing Communication Theory: Analysis and Application. New York, United States: McGraw-Hill Education.Google Scholar
von Essen, HS, Piil, K and Poulsen, FR (2020) Shared decision making in high-grade glioma patients – A systematic review. Neuro-Oncology Practice 7(6), 589–598. doi:10.1093/nop/npaa042CrossRefGoogle Scholar
Wenström, I, Eriksson, LE and Ebbeskog, B (2012) Living in a paradox – Women’s experiences of body and life-world after meningioma surgery. Journal of Advanced Nursing 68(3), 559–568. doi:10.1111/j.1365-2648.2011.05757.xCrossRefGoogle Scholar
Wightman, SC and Angelos, P (2014) An organized approach to complex ethical cases on a surgical service. World Journal of Surgery 38(7), 1664–1667. doi:10.1007/s00268-014-2567-2CrossRefGoogle ScholarPubMed
Wirsching, H-G, Morel, C, Roth, P, et al. (2020) Socioeconomic burden and quality of life in meningioma patients. Quality of Life Research 29(7), 1801–1808. doi:10.1007/s11136-020-02461-1CrossRefGoogle ScholarPubMed
Yong, JC, Li, NP and Kanazawa, S (2021) Not so much rational but rationalizing: Humans evolved as coherence-seeking, fiction-making animals. American Psychologist 76(5), 781–793. doi:10.1037/amp0000674CrossRefGoogle ScholarPubMed
Zamanipoor Najafabadi, AH, Peeters, MCM, Dirven, L, et al. (2017) Impaired health-related quality of life in meningioma patients – A systematic review. Neuro-Oncology 19(7), 897–907. doi:10.1093/neuonc/now250Google ScholarPubMed