Abstract
To develop, validate, and report on the use of a retrospective proxy-reported questionnaire measuring health-related quality of life (HRQoL) in the end-of-life (EOL) phase of high-grade glioma (HGG) patients. Items relevant for the defined construct were selected using existing questionnaires, topics identified as important in literature, and expert opinion (experienced neuro-oncologists and EOL experts). Psychometric properties, content validity and internal consistency, were determined and the questionnaire was subsequently adapted. Proxy-reported HRQoL data of HGG patients in the EOL, including changes over time, were analyzed. Twenty-nine items were selected covering seven domains; physical comfort, physical and cognitive functioning, psychological, social and spiritual well-being, and overall quality of life. Relatives of 83 deceased HGG patients completed the questionnaire. Content validity was assessed to be adequate. Internal consistency in the domains varied from reasonable to good. Two items were excluded due to poor psychometric properties. Symptom burden increased (p < 0.01), except for nausea (p = 0.058), as death approached. Cognitive, physical and psychological functioning deteriorated over time (all p < 0.01). Acceptance of disease seemed to increase slightly towards death, but this was not significant (p = 0.058). Participating in social activities and family life was rated as poor (≤50), whereas received support from their social environment and dying with dignity were rated as good (>50). Overall quality of life was rated as poor, mean (SD) of 29 (26). Measuring HRQoL at the EOL of HGG patients with a retrospective, proxy-reported questionnaire was feasible, yielding a validated instrument. HRQoL was reported as poor and deteriorated as death approached.
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Behin A, Hoang-Xuan K, Carpentier AF, Delattre JY (2003) Primary brain tumours in adults. Lancet 361:323–331
Stupp R, Mason WP, van den Bent MJ, Weller M, Fisher B, Taphoorn MJ, Belanger K, Brandes AA, Marosi C, Bogdahn U, Curschmann J, Janzer RC, Ludwin SK, Gorlia T, Allgeier A, Lacombe D, Cairncross JG, Eisenhauer E, Mirimanoff RO (2005) Radiotherapy plus concomitant and adjuvant temozolomide for glioblastoma. N Engl J Med 352:987–996
World Health Organization (2002) Definition of palliative care. WHO, Geneva. http://www.who.int/cancer/palliative/definition/en. Accessed 11 March 2013
Ostgathe C, Gaertner J, Kotterba M, Klein S, Lindena G, Nauck F, Radbruch L, Voltz R (2010) Differential palliative care issues in patients with primary and secondary brain tumours. Support Care Cancer 18:1157–1163
Bausewein C, Hau P, Borasio GD, Voltz R (2003) How do patients with primary brain tumours die? Palliat Med 17:558–559
Oberndorfer S, Lindeck-Pozza E, Lahrmann H, Struhal W, Hitzenberger P, Grisold W (2008) The end-of-life hospital setting in patients with glioblastoma. J Palliat Med 11:26–30
Pace A, Di Lorenzo C, Guariglia L, Jandolo B, Carapella CM, Pompili A (2009) End of life issues in brain tumor patients. J Neurooncol 91:39–43
Pace A, Villani V, Di Lorenzo C, Guariglia L, Maschio M, Pompili A, Carapella CM (2013) Epilepsy in the end-of-life phase in patients with high-grade gliomas. J Neurooncol 111:83–86
Sizoo EM, Braam L, Postma TJ, Pasman HR, Heimans JJ, Klein M, Reijneveld JC, Taphoorn MJ (2010) Symptoms and problems in the end-of-life phase of high-grade glioma patients. Neuro Oncol 12:1162–1166
Cavers D, Hacking B, Erridge SC, Morris PG, Kendall M, Murray SA (2012) Adjustment and support needs of glioma patients and their relatives: serial interviews. Psychooncology 22(6):1299–1305
Davies E, Clarke C (2005) Views of bereaved relatives about quality of survival after radiotherapy for malignant cerebral glioma. J Neurol Neurosurg Psychiatry 76:555–561
Aaronson NK (1988) Quality of life: what is it? How should it be measured? Oncology (Williston Park) 2(69–76):64
Albers G, Echteld MA, de Vet HC, Onwuteaka-Philipsen BD, van der Linden MH, Deliens L (2010) Content and spiritual items of quality-of-life instruments appropriate for use in palliative care: a review. J Pain Symptom Manag 40:290–300
Steinhauser KE, Clipp EC, Tulsky JA (2002) Evolution in measuring the quality of dying. J Palliat Med 5:407–414
Stewart AL, Teno J, Patrick DL, Lynn J (1999) The concept of quality of life of dying persons in the context of health care. J Pain Symptom Manag 17:93–108
Taphoorn MJ, Sizoo EM, Bottomley A (2010) Review on quality of life issues in patients with primary brain tumors. Oncologist 15:618–626
Byock IR, Merriman MP (1998) Measuring quality of life for patients with terminal illness: the Missoula-VITAS quality of life index. Palliat Med 12:231–244
Cohen SR, Mount BM, Bruera E, Provost M, Rowe J, Tong K (1997) Validity of the McGill Quality of Life Questionnaire in the palliative care setting: a multi-centre Canadian study demonstrating the importance of the existential domain. Palliat Med 11:3–20
Steinhauser KE, Bosworth HB, Clipp EC, McNeilly M, Christakis NA, Parker J, Tulsky JA (2002) Initial assessment of a new instrument to measure quality of life at the end of life. J Palliat Med 5:829–841
Sterkenburg CA, King B, Woodward CA (1996) A reliability and validity study of the McMaster Quality of Life Scale (MQLS) for a palliative population. J Palliat Care 12:18–25
Earle CC, Ayanian JZ (2006) Looking back from death: the value of retrospective studies of end-of-life care. J Clin Oncol 24:838–840
Patrick DL, Erickson P (1993) Health status and health policy: quality of life in health care evaluation and resource allocation. Oxford University Press, New York
Aaronson NK, Ahmedzai S, Bergman B, Bullinger M, Cull A, Duez NJ, Filiberti A, Flechtner H, Fleishman SB, de Haes JC et al (1993) The European Organization for Research and Treatment of Cancer QLQ-C30: a quality-of-life instrument for use in international clinical trials in oncology. J Natl Cancer Inst 85:365–376
Groenvold M, Petersen MA, Aaronson NK, Arraras JI, Blazeby JM, Bottomley A, Fayers PM, de Graeff A, Hammerlid E, Kaasa S, Sprangers MA, Bjorner JB (2006) The development of the EORTC QLQ-C15-PAL: a shortened questionnaire for cancer patients in palliative care. Eur J Cancer 42:55–64
Osoba D, Aaronson NK, Muller M, Sneeuw K, Hsu MA, Yung WK, Brada M, Newlands E (1996) The development and psychometric validation of a brain cancer quality-of-life questionnaire for use in combination with general cancer-specific questionnaires. Qual Life Res 5:139–150
Ware JE Jr, Sherbourne CD (1992) The MOS 36-item short-form health survey (SF-36). I. Conceptual framework and item selection. Med Care 30:473–483
Weitzner MA, Meyers CA, Gelke CK, Byrne KS, Cella DF, Levin VA (1995) The Functional Assessment of Cancer Therapy (FACT) scale. Development of a brain subscale and revalidation of the general version (FACT-G) in patients with primary brain tumors. Cancer 75:1151–1161
Faithfull S, Cook K, Lucas C (2005) Palliative care of patients with a primary malignant brain tumour: case review of service use and support provided. Palliat Med 19:545–550
Mokkink LB, Terwee CB, Patrick DL, Alonso J, Stratford PW, Knol DL, Bouter LM, de Vet HC (2010) The COSMIN study reached international consensus on taxonomy, terminology, and definitions of measurement properties for health-related patient-reported outcomes. J Clin Epidemiol 63:737–745
Sizoo EM, Pasman HR, Buttolo J, Heimans JJ, Klein M, Deliens L, Reijneveld JC, Taphoorn MJ (2012) Decision-making in the end-of-life phase of high-grade glioma patients. Eur J Cancer 48:226–232
Fayers PM, Aaronson NK, Bjordal K, Groenvold M, Curran D, Bottomley A (2001) The EORTC QLQ-C30 scoring manual, 3rd edn. European Organization for Research and Treatment of Cancer, Brussels
Fayers P, Machin D (2000) Quality of life: assessment, analysis and Interpretation. Wiley, Chichester
Brown PD, Decker PA, Rummans TA, Clark MM, Frost MH, Ballman KV, Arusell RM, Buckner JC (2008) A prospective study of quality of life in adults with newly diagnosed high-grade gliomas: comparison of patient and caregiver ratings of quality of life. Am J Clin Oncol 31:163–168
Sneeuw KC, Aaronson NK, Osoba D, Muller MJ, Hsu MA, Yung WK, Brada M, Newlands ES (1997) The use of significant others as proxy raters of the quality of life of patients with brain cancer. Med Care 35:490–506
Sneeuw KC, Aaronson NK, Sprangers MA, Detmar SB, Wever LD, Schornagel JH (1998) Comparison of patient and proxy EORTC QLQ-C30 ratings in assessing the quality of life of cancer patients. J Clin Epidemiol 51:617–631
Stephens RJ, Hopwood P, Girling DJ, Machin D (1997) Randomized trials with quality of life endpoints: are doctors’ ratings of patients’ physical symptoms interchangeable with patients’ self-ratings? Qual Life Res 6:225–236
Giesinger JM, Golser M, Erharter A, Kemmler G, Schauer-Maurer G, Stockhammer G, Muigg A, Hutterer M, Rumpold G, Holzner B (2009) Do neurooncological patients and their significant others agree on quality of life ratings? Health Qual Life Outcomes 7:87
Milne DJ, Mulder LL, Beelen HC, Schofield P, Kempen GI, Aranda S (2006) Patients’ self-report and family caregivers’ perception of quality of life in patients with advanced cancer: how do they compare? Eur J Cancer Care (Engl) 15:125–132
Sprangers MA, Aaronson NK (1992) The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease: a review. J Clin Epidemiol 45:743–760
Sneeuw KC, Sprangers MA, Aaronson NK (2002) The role of health care providers and significant others in evaluating the quality of life of patients with chronic disease. J Clin Epidemiol 55:1130–1143
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
Sizoo EM, Taphoorn MJ, Uitdehaag B, Heimans JJ, Deliens L, Reijneveld JC, Pasman HR (2013) The end-of-life phase of high-grade glioma patients: dying with dignity? Oncologist 18:198–203
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These authors Eefje M. Sizoo and Linda Dirven have contributed equally to this work.
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Sizoo, E.M., Dirven, L., Reijneveld, J.C. et al. Measuring health-related quality of life in high-grade glioma patients at the end of life using a proxy-reported retrospective questionnaire. J Neurooncol 116, 283–290 (2014). https://doi.org/10.1007/s11060-013-1289-x
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DOI: https://doi.org/10.1007/s11060-013-1289-x