Through the patient’s eyes: the value of a comprehensive brain tumor center

Journal of Neuro-Oncology

Volumn 119, Issue 3, 2014, Pages 465-472

  Robin, Adam M ^a   Walbert, Tobias ^a   Mikkelsen, Tom ^a   Kalkanis, Steven N ^a   Rock, Jack ^a   Lee, Ian ^a   Rosenblum, Mark L ^a  

^a HENRY FORD HOSPITAL   (United States)

Author keywords

Brain tumor center; Caregiver; Communication; Glioblastoma; Hope; Malignant glioma; Palliative care quality of life

Indexed keywords

BRAIN TUMOR; CANCER CENTER; CANCER PALLIATIVE THERAPY; CAREGIVER; COMMUNICATION SKILL; DOCTOR PATIENT RELATION; EMPATHY; GLIOBLASTOMA; HOPE; HUMAN; INFORMATION SEEKING; NEEDS ASSESSMENT; PATIENT CARE; PATIENT DECISION MAKING; PATIENT EDUCATION; PATIENT PARTICIPATION; PATIENT WORRY; QUALITY OF LIFE; REVIEW; SYMPTOM ASSESSMENT; BRAIN NEOPLASMS; GLIOMA; PROCEDURES; PSYCHOLOGY;

BRAIN NEOPLASMS; CANCER CARE FACILITIES; GLIOMA; HUMANS; PATIENT-CENTERED CARE;

EID: 84919419780     PISSN: 0167594X     EISSN: 15737373     Source Type: Journal    
DOI: 10.1007/s11060-014-1494-2     Document Type: Review

References (54)

1. Knapp PC (1891) The pathology, diagnosis and treatment of intra-cranial growths. Rockwell & Churchill, Boston
2. Barker FG 2nd, Linskey ME (2004) History of the AANS/CNS joint section on tumors and preface to the 20th anniversary. J Neurooncol 69:1–18
3. Zimerman AL (2013) Evidence-based medicine: a short history of a modern medical movement. Virtual Mentor 15:71–76
4. Kalkanis SN, Kondziolka D, Gaspar LE et al (2010) The role of surgical resection in the management of newly diagnosed brain metastases: a systematic review and evidence-based clinical practice guideline. J Neurooncol 96:33–43
5. Olson JJ, Fadul CE, Brat DJ, Mukundan S, Ryken TC (2009) Management of newly diagnosed glioblastoma: guidelines development, value and application. J Neurooncol 93:1–23
6. Langbecker DH (2011) The evidence-based development of an intervention to address the information needs of adults newly diagnosed with primary brain tumours and their carers. Thesis, Queensland University of Technology
7. Davies E, Higginson IJ (2003) Communication, information and support for adults with malignant cerebral glioma: a systematic literature review. Support Care Cancer 11:21–29
8. Ford E, Catt S, Chalmers A, Fallowfield L (2012) Systematic review of supportive care needs in patients with primary malignant brain tumors. Neuro Oncol 14:392–404
9. Salander P, Bergenheim T, Henriksson R (1996) The creation of protection and hope in patients with malignant brain tumours. Soc Sci Med 42:985–996
10. Hagerty RG, Butow PN, Ellis PM, Lobb EA, Pendlebury SC, Leighl N, MacLeod C, Mac Leod C, Tattersall MHN (2005) Communicating with realism and hope: incurable cancer patients’ views on the disclosure of prognosis. J Clin Oncol 23:1278–1288
11. Rosenblum ML, Kalkanis S, Goldberg W, Rock J, Mikkelsen T, Remer S, Whitehouse S, Nerenz D (2009) Odyssey of hope: a physician’s guide to communicating with brain tumor patients across the continuum of care. J Neurooncol 92:241–251
12. Halkett GKB, Lobb EA, Oldham L, Nowak AK (2010) The information and support needs of patients diagnosed with High Grade Glioma. Patient Educ Couns 79:112–119
13. Lucas MR (2010) Psychosocial implications for the patient with a high-grade glioma. J Neurosci Nurs 42:104–108
14. Sterckx W, Coolbrandt A, Dierckx de Casterlé B et al (2013) The impact of a high-grade glioma on everyday life: a systematic review from the patient’s and caregiver’s perspective. Eur J Oncol Nurs 17:107–117
15. Schubart JR, Kinzie MB, Farace E (2008) Caring for the brain tumor patient: family caregiver burden and unmet needs. Neuro Oncol 10:61–72
16. Clark E (2013) You have the right to be hopeful. National Coalition for Cancer Survivorship, Silver Spring, MD
17. Salander P (2002) Bad news from the patient’s perspective: an analysis of the written narratives of newly diagnosed cancer patients. Soc Sci Med 55:721–732
18. Langbecker D, Janda M, Yates P (2013) Health professionals’ perspectives on information provision for patients with brain tumours and their families. Eur J Cancer Care (Engl) 22:179–187
19. Jenkins V, Fallowfield L, Saul J (2001) Information needs of patients with cancer: results from a large study in UK cancer centres. Br J Cancer 84:48–51
20. Penson RT, Gu F, Harris S, Thiel MM, Lawton N, Fuller AF, Lynch TJ (2007) Hope. The Oncologist 12:1105–1113
21. Clayton JM, Butow PN, Arnold RM, Tattersall MHN (2005) Fostering coping and nurturing hope when discussing the future with terminally ill cancer patients and their caregivers. Cancer 103:1965–1975
22. Díaz JL, Barreto P, Gallego JM, Barbero J, Bayés R, Barcia JA (2009) Proper information during the surgical decision-making process lowers the anxiety of patients with high-grade gliomas. Acta Neurochir (Wien) 151:357–362
23. Langbecker D, Janda M, Yates P (2012) Development and piloting of a brain tumour-specific question prompt list. Eur J Cancer Care (Engl) 21:517–526
24. Lobb EA, Halkett GKB, Nowak AK (2011) Patient and caregiver perceptions of communication of prognosis in high grade glioma. J Neurooncol 104:315–322
25. Jurkovich GJ, Pierce B, Pananen L, Rivara FP (2000) Giving bad news: the family perspective. J Trauma 48:865–870; discussion 870–873
26. Lucas MR (2013) What brain tumor patients and their families have taught me. J Neurosci Nurs 45:171–175
27. Kondziolka D, Parry PV, Lunsford LD et al (2014) The accuracy of predicting survival in individual patients with cancer. J Neurosurg 120:24–30
28. Litofsky NS, Resnick AG (2009) The relationships between depression and brain tumors. J Neurooncol 94:153–161
29. McConigley R, Halkett G, Lobb E, Nowak A (2010) Caring for someone with high-grade glioma: a time of rapid change for caregivers. Palliat Med 24:473–479
30. McClement SE, Chochinov HM (2008) Hope in advanced cancer patients. Eur J Cancer 44:1169–1174
31. Lazarus RS, Folkman S (1984) Stress, appraisal, and coping. Springer Pub. Co., New York
32. Beck AT, Weissman A, Lester D, Trexler L (1974) The measurement of pessimism: the hopelessness scale. J Consult Clin Psychol 42:861–865
33. Taylor EJ (1993) Factors associated with meaning in life among people with recurrent cancer. Oncol Nurs Forum 20:1399–1405; discussion 1406–1407
34. Marschke M A philosophical discussion on death and dying. Compliments of Horizon Hospice, AMSA Foundation's academic partner for the End of Life (EOL) Fellowship Program in Chicago, IL. The American Medical Student Association (AMSA). http://www.amsa.org/dd/Philosophy.ppt
35. Cohen JJ (2007) Viewpoint: linking professionalism to humanism: what it means, why it matters. Acad Med 82:1029–1032
36. Arber A, Faithfull S, Plaskota M, Lucas C, de Vries K (2010) A study of patients with a primary malignant brain tumour and their carers: symptoms and access to services. Int J Palliat Nurs 16:24–30
37. Kristjanson LJ, Aoun S (2004) Palliative care for families: remembering the hidden patients. Can J Psychiatry 49:359–365
38. Caregiving in the U.S. (2009) National alliance for caregiving. In: National alliance caregiving. www.caregiving.org/data/Caregiving_in_the_US_2009_full_report.pdf
39. Pace A, Di Lorenzo C, Lorenzo CD, Guariglia L, Jandolo B, Carapella CM, Pompili A (2009) End of life issues in brain tumor patients. J Neurooncol 91:39–43
40. Junck L (2004) Supportive management in neuro-oncology: opportunities for patient care, teaching, and research. Curr Opin Neurol 17:649–653
41. Litofsky NS, Farace E, Anderson F Jr, Meyers CA, Huang W, Laws ER Jr, Glioma Outcomes Project Investigators (2004) Depression in patients with high-grade glioma: results of the Glioma Outcomes Project. Neurosurgery 54:358–366; discussion 366–367
42. Glantz MJ, Cole BF, Forsyth PA et al (2000) Practice parameter: anticonvulsant prophylaxis in patients with newly diagnosed brain tumors. Report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology 54:1886–1893
43. Gerber DE, Grossman SA, Streiff MB (2006) Management of venous thromboembolism in patients with primary and metastatic brain tumors. J Clin Oncol 24:1310–1318
44. Quevedo JF, Buckner JC, Schmidt JL, Dinapoli RP, O’Fallon JR (1994) Thromboembolism in patients with high-grade glioma. Mayo Clin Proc 69:329–332
45. Vecht CJ, Hovestadt A, Verbiest HB, van Vliet JJ, van Putten WL (1994) Dose-effect relationship of dexamethasone on Karnofsky performance in metastatic brain tumors: a randomized study of doses of 4, 8, and 16 mg per day. Neurology 44:675–680
46. Arnold SD, Forman LM, Brigidi BD et al (2008) Evaluation and characterization of generalized anxiety and depression in patients with primary brain tumors. Neuro Oncol 10:171–181
47. NICE Improving outcomes for people with brain and other CNS tumours—evidence review. In: NICE. http://www.nice.org.uk/. Accessed 11 Feb 2014
48. Sizoo EM, Braam L, Postma TJ et al (2010) Symptoms and problems in the end-of-life phase of high-grade glioma patients. Neuro Oncol 12:1162–1166
49. Lin E, Rosenthal MA, Le BH, Eastman P (2012) Neuro-oncology and palliative care: a challenging interface. Neuro Oncol 14(Suppl 4):iv3–iv7
50. Temel JS, Greer JA, Muzikansky A et al (2010) Early palliative care for patients with metastatic non-small-cell lung cancer. N Engl J Med 363:733–742
51. Walbert T, Khan M (2014) End-of-life symptoms and care in patients with primary malignant brain tumors: a systematic literature review. J Neurooncol. doi:10.1007/s11060-014-1393-1396
52. Addington-Hall J, Altmann D (2000) Which terminally ill cancer patients in the United Kingdom receive care from community specialist palliative care nurses? J Adv Nurs 32:799–806
53. Fadul N, Elsayem A, Palmer JL, Del Fabbro E, Swint K, Li Z, Poulter V, Bruera E (2009) Supportive versus palliative care: what’s in a name? A survey of medical oncologists and midlevel providers at a comprehensive cancer center. Cancer 115:2013–2021
54. Dalal S, Palla S, Hui D et al (2011) Association between a name change from palliative to supportive care and the timing of patient referrals at a comprehensive cancer center. Oncologist 16:105–111