Level of Distress Experienced by Glioblastoma Multiforme Patients and Caregivers in Relation to their Medical Education Background: A Qualitative Study

Authors

  • Made Agus Mahendra Inggas Department of Neurosurgery, Mochtar Riady Comprehensive Cancer Centre, Jakarta, Indonesia; Department of Psychiatry, Mochtar Riady Comprehensive Cancer Centre, Jakarta, Indonesia
  • Dyani Pitra Velyani Department of Neurosurgery, Faculty of Medicine, Universitas Pelita Harapan, Banten, Indonesia
  • Petra O. P. Wahyoepramono Department of Psychiatry, Mochtar Riady Comprehensive Cancer Centre, Jakarta, Indonesia
  • Julius July Department of Psychiatry, Mochtar Riady Comprehensive Cancer Centre, Jakarta, Indonesia

DOI:

https://doi.org/10.3889/oamjms.2024.9087

Keywords:

Glioblastoma Multiforme, Medical Knowledge Status, Caregiver, Distress, DT Score

Abstract

BACKGROUND: Glioblastoma multiforme (GBM) is a primary brain tumor with extensive infiltration of surrounding brain tissue and a high rate of recurrence, with an average survival of 13–16 months. Due to the rapid course of the disease, multimodality treatment, and poor prognosis, both the patients and their caregivers will face significant psychological distress. Identification of the types and severity of distress is crucial to control morbidity during treatment.

AIM: This study aims to define the level of distress experienced by patients and their caregivers during the treatment period by considering their medical education background. At the time of publication, this type of study is unique and has never been done before.

MATERIALS AND METHODS: This study was conducted at the Neurosurgery Outpatient Department of Mochtar Riady Comprehensive Cancer Center Siloam Hospital Jakarta. Patients with GBM and their caregivers were recruited during the early stages of radiation treatment (T1) and the follow-up chemotherapy (T2) and were assessed using the distress thermometer (DT) and National Comprehensive Cancer Network (NCCN) problem checklist followed by in-depth interviews. Participants were divided into two groups based on medical education background. Significant distress is defined as DT score >4.

RESULTS: Data from four pairs of patient-caregivers are collected during the early stages of T1. Two pairs of Patient-Caregivers without medical educational background (P-C non-D) are included later during T2. From T1, patients and caregivers with medical education (P-D) are higher than those without medical education (P-D > P-non D; C-D > C-non D). Another comparison shows that P-D is higher than C-D. In contrast, P-non D is lower than C-non D. Based on the time data collected, it shows DT: P-non D T2 > P-non D T1, but there is no difference between T2 and T1 in the caregiver’s group: C-non D T1 = C- non D T2. From the NCCN problem checklist, it is known that they attribute their distress mostly to physical problems.

CONCLUSION: The physical and mental changes experienced by patients cause distress for patients and their caregivers. Knowledge of disease and treatment possessed by patients or caregivers helps them deal with GBM and the entire course of treatment.

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Author Biography

Julius July, Department of Psychiatry, Mochtar Riady Comprehensive Cancer Centre, Jakarta, Indonesia

Department of Neurosurgery, Faculty of Medicine, Universitas Pelita Harapan, Banten, Indonesia

References

Lacroix M, Abi-Said D, Fourney DR, Gokaslan ZL, Shi W, DeMonte F, et al. A multivariate analysis of 416 patients with glioblastoma multiforme: Prognosis, extent of resection, and survival. J Neurosurg. 2001;95(2):190-8. https://doi.org/10.3171/jns.2001.95.2.0190 PMid:11780887 DOI: https://doi.org/10.3171/jns.2001.95.2.0190

Stupp R, Dietrich PY, Kraljevic SO, Pica A, Maillard I, Maeder P, et al. Promising survival for patients with newly diagnosed glioblastoma multiforme treated with concomitant radiation plus temozolomide followed by adjuvant temozolomide. J Clin Oncol. 2002;20(5):1375-82. https://doi.org/10.1200/JCO.2002.20.5.1375 PMid:11870182 DOI: https://doi.org/10.1200/JCO.20.5.1375

Cloughesy TF, Cavenee WK, Mischel PS. Glioblastoma: From molecular pathology to targeted treatment. Annu Rev Pathol. 2014;9:1-25. https://doi.org/10.1146/annurev-pathol-011110-130324 PMid:23937436 DOI: https://doi.org/10.1146/annurev-pathol-011110-130324

Mao H, LeBrun DG, Yang J, Zhu VF, Li M. Deregulated signaling pathways in glioblastoma multiforme: Molecular mechanisms and therapeutic targets. Cancer Invest. 2012;30(1):48-56. https://doi.org/10.3109/07357907.2011.630050 PMid:22236189 DOI: https://doi.org/10.3109/07357907.2011.630050

Urbańska K, Sokołowska J, Szmidt M, Sysa P. Glioblastoma multiforme-an overview. Contemp Oncol (Pozn). 2014; 18(5):307-12. https://doi.org/10.5114/wo.2014.40559 PMid:25477751 DOI: https://doi.org/10.5114/wo.2014.40559

Jahangiri A, Aghi MK, Carbonell WS. β1integrin: Critical path to antiangiogenic therapy resistance and beyond. Cancer Res. 2014;74(1):3-7. https://doi.org/10.1158/0008-5472.CAN-13-1742 PMid:24327727 DOI: https://doi.org/10.1158/0008-5472.CAN-13-1742

Keir ST, Guill AB, Carter KE, Friedman HS. Stress and intervention preferences of patients with brain tumors. Support Care Cancer. 2006;14(12):1213-9. https://doi.org/10.1007/s00520-006-0087-9 PMid:16733656 DOI: https://doi.org/10.1007/s00520-006-0087-9

Zabora J, BrintzenhofeSzoc K, Curbow B, Hooker C, Piantadosi S. The prevalence of psychological distress by cancer site. Psychooncology. 2001;10(1):19-28. https://doi.org/10.1002/1099-1611(200101/02)10:1<19:aid-pon501>3.0.co;2-6 PMid:11180574 DOI: https://doi.org/10.1002/1099-1611(200101/02)10:1<19::AID-PON501>3.3.CO;2-Y

Kvale EA, Murthy R, Taylor R, Lee JY, Nabors LB. Distress and quality of life in primary high-grade brain tumor patients. Support Care Cancer. 2009;17(7):793-9. https://doi.org/10.1007/s00520-008-0551-9 PMid:19421789 DOI: https://doi.org/10.1007/s00520-008-0551-9

Wood DE. National comprehensive cancer network clinical practice guidelines for lung cancer screening. Thorac Surg Clin. 2015;25(2):185-97. DOI: https://doi.org/10.1016/j.thorsurg.2014.12.003

Yabroff KR, Dowling EC, Guy GP, Banegas MP, Davidoff A, Han X, et al. Financial hardship associated with cancer in the United States: Findings from a population-based sample of adult cancer survivors. J Clin Oncol. 2016;34(3):259-67. https://doi.org/10.1200/JCO.2015.62.0468 PMid:26644532 DOI: https://doi.org/10.1200/JCO.2015.62.0468

Riba MB, Donovan KA, Andersen B, Braun I, Breitbart WS, Brewer BW, et al. Distress management, version 3.2019, NCCN Clinical Practice guidelines in oncology. J Natl Compr Canc Netw. 2019;17(10):1229-49. https://doi.org/10.6004/jnccn.2019.0048 PMid:31590149 DOI: https://doi.org/10.6004/jnccn.2019.0048

Choi CW, Stone RA, Kim KH, Ren D, Schulz R, Given CW, et al. Group-based trajectory modeling of caregiver psychological distress over time. Ann Behav Med. 2012;44(1):73-84. https://doi.org/10.1007/s12160-012-9371-8 PMid:22585179 DOI: https://doi.org/10.1007/s12160-012-9371-8

Russell B, Collins A, Dowling A, Dally M, Gold M, Murphy M, et al. Predicting distress among people who care for patients living longer with high-grade malignant glioma. Support Care in Cancer. 2015;24(1):43-51. https://doi.org/10.1007/s00520-015-2739-0 PMid:25910750 DOI: https://doi.org/10.1007/s00520-015-2739-0

Trad W, Koh E, Daher M, Bailey A, Kastelan M, Legge D, et al. Screening for psychological distress in adult primary brain tumor patients and caregivers: Considerations for cancer care coordination. Front Oncol. 2015;5:203. https://doi.org/10.3389/fonc.2015.00203 PMid:26442215 DOI: https://doi.org/10.3389/fonc.2015.00203

Goebel S, Von Harscher M, Mehdorn HM. Comorbid mental disorders and psychosocial distress in patients with brain tumours and their spouses in the early treatment phase. Support Care Cancer 2011;19(11):1797-805. https://doi.org/10.1007/s00520-010-1021-8 PMid:20953802 DOI: https://doi.org/10.1007/s00520-010-1021-8

Keir ST, Guill AB, Carter KE, Boole LC, Gonzales L, Friedman HS. Differential levels of stress in caregivers of brain tumor patients--observations from a pilot study. Support Care Cancer. 2006;14(12):1258-61. https://doi.org/10.1007/s00520-006-0090-1 PMid:16775683 DOI: https://doi.org/10.1007/s00520-006-0090-1

Vrettos I, Kamposioras K, Kontodimopoulos N, Pappa E, Georgiadou E, Haritos D, et al. Comparing health-related quality of life of cancer patients under chemotherapy and of their caregivers. ScientificWorldJournal. 2012;2012:135283. https://doi.org/10.1100/2012/135283 PMid:22619584 DOI: https://doi.org/10.1100/2012/135283

Poroch D. The effect of preparatory patient education on the anxiety and satisfaction of cancer patients receiving radiation therapy. Cancer Nurs. 1995;18(3):206-14. PMid:7600552 DOI: https://doi.org/10.1097/00002820-199506000-00005

Tian J, Jia LN, Cheng ZC. Relationships between patient knowledge and the severity of side effects, daily nutrient intake, psychological status, and performance status in lung cancer patients. Curr Oncol. 2015;22(4):e254-8. https://doi.org/10.3747/co.22.2366 PMid:26300675 DOI: https://doi.org/10.3747/co.22.2366

Liu F, Huang J, Zhang L, Fan F, Chen J, Xia K, et al. Screening for distress in patients with primary brain tumor using distress thermometer: A systematic review and meta-analysis. BMC Cancer. 2018;18(1):124. https://doi.org/10.1186/s12885-018-3990-9 PMid:29394923 DOI: https://doi.org/10.1186/s12885-018-3990-9

Keir ST, Calhoun-Eagan RD, Swartz JJ, Saleh OA, Friedman HS. Screening for distress in patients with brain cancer using the NCCN’s rapid screening measure. Psychooncology. 2008;17(6):621-5. https://doi.org/10.1002/pon.1271 PMid:17973236 DOI: https://doi.org/10.1002/pon.1271

Cutillo A, O’Hea E, Person S, Lessard D, Harralson T, Boudreaux E. The distress thermometer: Cutoff points and clinical use. Oncol Nurs Forum. 2017;44(3):329-36. https://doi.org/10.1188/17.ONF.329-336 PMid:29493167 DOI: https://doi.org/10.1188/17.ONF.329-336

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Published

2024-01-26

How to Cite

1.
Inggas MAM, Velyani DP, Wahyoepramono POP, July J. Level of Distress Experienced by Glioblastoma Multiforme Patients and Caregivers in Relation to their Medical Education Background: A Qualitative Study. Open Access Maced J Med Sci [Internet]. 2024 Jan. 26 [cited 2024 Feb. 26];12(1):6-11. Available from: https://oamjms.eu/index.php/mjms/article/view/9087