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Journal of Neurology, Neurosurgery, and Psychiatry logoLink to Journal of Neurology, Neurosurgery, and Psychiatry
. 2005 Apr;76(4):555–561. doi: 10.1136/jnnp.2004.035931

Views of bereaved relatives about quality of survival after radiotherapy for malignant cerebral glioma

E Davies 1, C Clarke 1
PMCID: PMC1739608  PMID: 15774445

Abstract

Objective: To explore the views of bereaved relatives about quality of survival after radiotherapy for malignant cerebral glioma.

Design: Semistructured interviews with the bereaved relatives of 56 previously studied patients with glioma.

Setting: Patients treated at six London hospitals from 1990 to 1992 surviving between one and 46 months (median, eight).

Subjects: Fifty six relatives (44 spouses, 12 others) seen four to six months after bereavement and 20 again at 13 months.

Main outcome measures: Views about quality of life and satisfaction with radiotherapy.

Results: Relatives described quality of life as "good or acceptable" when patients carried on some normal activities or enjoyed social relationships. They described restricted and dependent states, constant deterioration, or loss of social interaction as giving "poor or unacceptable" quality of life. Length of time lived in such states also appeared important. Relatives' views of good or acceptable quality of life were independently related to low initial cognitive or personality change or low distress in the patient after diagnosis, and to their subsequent survival free from physical disability for at least one month. Satisfaction with radiotherapy was related to low initial distress, some degree of surgical resection, and overall length of survival longer than six months.

Conclusions: Carefully exploring the views of bereaved relatives can bring a useful perspective to difficult treatment decisions. Their values support including disability and distress in quality of life measures, but cast doubt on the QALY-type approach of using full years of survival or time free from disability to judge whether treatments are worthwhile.

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Selected References

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  1. Addington-Hall J., McPherson C. After-death interviews with surrogates/bereaved family members: some issues of validity. J Pain Symptom Manage. 2001 Sep;22(3):784–790. doi: 10.1016/s0885-3924(01)00330-x. [DOI] [PubMed] [Google Scholar]
  2. Bleehen N. M., Stenning S. P. A Medical Research Council trial of two radiotherapy doses in the treatment of grades 3 and 4 astrocytoma. The Medical Research Council Brain Tumour Working Party. Br J Cancer. 1991 Oct;64(4):769–774. doi: 10.1038/bjc.1991.396. [DOI] [PMC free article] [PubMed] [Google Scholar]
  3. Brada M., Thomas D., Rampling R., Crawford P., Burnet N., Byrne P., Sokal M. Malignant cerebral glioma. Modern radiotherapy can give good quality survival for six months. BMJ. 1997 Mar 22;314(7084):899–899. [PMC free article] [PubMed] [Google Scholar]
  4. Burnet N. G., Taylor R. E. Malignant cerebral glioma. Modern radiotherapy techniques are needed to spare normal brain tissue. BMJ. 1997 Mar 22;314(7084):900–901. [PMC free article] [PubMed] [Google Scholar]
  5. Crossen J. R., Garwood D., Glatstein E., Neuwelt E. A. Neurobehavioral sequelae of cranial irradiation in adults: a review of radiation-induced encephalopathy. J Clin Oncol. 1994 Mar;12(3):627–642. doi: 10.1200/JCO.1994.12.3.627. [DOI] [PubMed] [Google Scholar]
  6. Davies E. A., Hall S. M., Clarke C. R., Bannon M. P., Hopkins A. P. Do research interviews cause distress or interfere in management? Experience from a study of cancer patients. J R Coll Physicians Lond. 1998 Sep-Oct;32(5):406–411. [PMC free article] [PubMed] [Google Scholar]
  7. Davies E., Clarke C., Hopkins A. Malignant cerebral glioma--I: Survival, disability, and morbidity after radiotherapy. BMJ. 1996 Dec 14;313(7071):1507–1512. doi: 10.1136/bmj.313.7071.1507. [DOI] [PMC free article] [PubMed] [Google Scholar]
  8. Davies E., Clarke C., Hopkins A. Malignant cerebral glioma--II: Perspectives of patients and relatives on the value of radiotherapy. BMJ. 1996 Dec 14;313(7071):1512–1516. doi: 10.1136/bmj.313.7071.1512. [DOI] [PMC free article] [PubMed] [Google Scholar]
  9. Davies E., Hall S., Clarke C. Two year survival after malignant cerebral glioma: patient and relative reports of handicap, psychiatric symptoms and rehabilitation. Disabil Rehabil. 2003 Mar 18;25(6):259–266. doi: 10.1080/0963828021000024915. [DOI] [PubMed] [Google Scholar]
  10. Davies Elizabeth, Higginson Irene J. Communication, information and support for adults with malignant cerebral glioma : a systematic literature review. Support Care Cancer. 2002 Sep 5;11(1):21–29. doi: 10.1007/s00520-002-0392-x. [DOI] [PubMed] [Google Scholar]
  11. Faithfull S., Brada M. Somnolence syndrome in adults following cranial irradiation for primary brain tumours. Clin Oncol (R Coll Radiol) 1998;10(4):250–254. doi: 10.1016/s0936-6555(98)80011-3. [DOI] [PubMed] [Google Scholar]
  12. Gregor A., Cull A., Traynor E., Stewart M., Lander F., Love S. Neuropsychometric evaluation of long-term survivors of adult brain tumours: relationship with tumour and treatment parameters. Radiother Oncol. 1996 Oct;41(1):55–59. doi: 10.1016/s0167-8140(96)91782-x. [DOI] [PubMed] [Google Scholar]
  13. Higginson I., Priest P., McCarthy M. Are bereaved family members a valid proxy for a patient's assessment of dying? Soc Sci Med. 1994 Feb;38(4):553–557. doi: 10.1016/0277-9536(94)90251-8. [DOI] [PubMed] [Google Scholar]
  14. Hinton J. How reliable are relatives' retrospective reports of terminal illness? Patients and relatives' accounts compared. Soc Sci Med. 1996 Oct;43(8):1229–1236. doi: 10.1016/0277-9536(95)00437-8. [DOI] [PubMed] [Google Scholar]
  15. Kristiansen K., Hagen S., Kollevold T., Torvik A., Holme I., Nesbakken R., Hatlevoll R., Lindgren M., Brun A., Lindgren S. Combined modality therapy of operated astrocytomas grade III and IV. Confirmation of the value of postoperative irradiation and lack of potentiation of bleomycin on survival time: a prospective multicenter trial of the Scandinavian Glioblastoma Study Group. Cancer. 1981 Feb 15;47(4):649–652. doi: 10.1002/1097-0142(19810215)47:4<649::aid-cncr2820470405>3.0.co;2-w. [DOI] [PubMed] [Google Scholar]
  16. Latif A. Z., Signorini D., Gregor A., Whittle I. R. The costs of managing patients with malignant glioma at a neuro-oncology clinic. Br J Neurosurg. 1998 Apr;12(2):118–122. doi: 10.1080/02688699845230. [DOI] [PubMed] [Google Scholar]
  17. MAHONEY F. I., BARTHEL D. W. FUNCTIONAL EVALUATION: THE BARTHEL INDEX. Md State Med J. 1965 Feb;14:61–65. [PubMed] [Google Scholar]
  18. Pickard J. D., Bailey S., Sanderson H., Rees M., Garfield J. S. Steps towards cost-benefit analysis of regional neurosurgical care. BMJ. 1990 Sep 29;301(6753):629–635. doi: 10.1136/bmj.301.6753.629. [DOI] [PMC free article] [PubMed] [Google Scholar]
  19. Robinson R. Cost-benefit analysis. BMJ. 1993 Oct 9;307(6909):924–926. doi: 10.1136/bmj.307.6909.924. [DOI] [PMC free article] [PubMed] [Google Scholar]
  20. Salander P., Bergenheim A. T., Henriksson R. How was life after treatment of a malignant brain tumour? Soc Sci Med. 2000 Aug;51(4):589–598. doi: 10.1016/s0277-9536(00)00002-2. [DOI] [PubMed] [Google Scholar]
  21. Walker M. D., Alexander E., Jr, Hunt W. E., MacCarty C. S., Mahaley M. S., Jr, Mealey J., Jr, Norrell H. A., Owens G., Ransohoff J., Wilson C. B. Evaluation of BCNU and/or radiotherapy in the treatment of anaplastic gliomas. A cooperative clinical trial. J Neurosurg. 1978 Sep;49(3):333–343. doi: 10.3171/jns.1978.49.3.0333. [DOI] [PubMed] [Google Scholar]

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