Living longer with adult high-grade glioma:setting a research agenda for patients and their caregivers
- 474 Downloads
The long-term survival of patients with adult high-grade glioma (HGG) remains poor, but for those who do live longer functional status and neurocognitive ability may be influenced by residual or recurrent tumour, or treatment-related complications. The aim of this review was to examine the current literature regarding the quality of life and experience of patients living longer with adult HGG and their caregivers, with a view to understanding the burden of treatment on patient abilities and deficits over time. Medline, PsychINFO and CINAHL databases were searched for the core concept of HGG in combination with an aspect of quality of long-term survival. Key findings of the 12 included studies were identified and synthesised thematically. There is a paucity of dedicated studies which have investigated the experiences of this cohort. The strength of existing literature is limited by the systematic exclusion of the poorest functioning patients and the under-representation of caregiver perspectives. Discrepancies in how patients view their quality of life were highlighted, despite consistent findings of significant physical and functional impairment. This review confirmed the presence of important differences between patient and caregiver views regarding patient abilities following treatment. Caregiver burden was found to be high, due to multiple dynamic and relentless stressors. The true experience of patients living longer with adult HGG and their caregivers remains unclear, particularly for patients with poorer neurocognitive and functional outcomes. Further research is required to clarify and replicate findings, explore discrepancies between patient and caregiver views, and to specifically investigate how caregiver needs and experiences may evolve over time.
KeywordsGlioma High-grade glioma Survivors Caregivers Quality of life
Helen Shipperlee and Danila Durante (St Vincent’s Hospital Melbourne Library), Annette Culley (Caritas Christi Library).
No competing financial interests exist.
- 2.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(10):987–996. doi: 10.1056/NEJMoa043330 PubMedCrossRefGoogle Scholar
- 15.Moore G, Collins A, Brand C, Gold M, Lethborg C, Murphy M, Sundararajan V, Philip J (2013) Palliative and supportive care needs of patients with high-grade glioma and their carers: a systematic review of qualitative literature. Patient Educ Couns 91(2):141–153. doi: 10.1016/j.pec.2012.11.002 PubMedCrossRefGoogle Scholar
- 16.Sterckx W, Coolbrandt A, Bernatte Koen, Decruyenaere M, Borgenon S, Mees A, Clement P (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(1):107–117. doi: 10.1016/j.ejon.2012.04.006 PubMedCrossRefGoogle Scholar
- 17.Sizoo EM, Dirven L, Reijneveld JC, Postma TJ, Heimans JJ, Deliens L, Pasman HR, Taphoorn MJ (2014) 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(2):283–290. doi: 10.1007/s11060-013-1289-x PubMedCrossRefGoogle Scholar
- 18.Collins A, Lethborg C, Brand C, Gold M, Moore G, Sundararajan V, Murphy M, Philip J (2014) The challenges and suffering of caring for people with primary malignant glioma: qualitative perspectives on improving current supportive and palliative care practices. BMJ Support Palliat Care 4(1):68–76. doi: 10.1136/bmjspcare-2012-000419 PubMedCrossRefGoogle Scholar
- 34.Bosma I, Reijneveld JC, Douw L, Vos MJ, Postma TJ, Aaronson NK, Muller M, Vandertop WP, Slotman BJ, Taphoorn MJB, Heimans JJ, Klein M (2009) Health-related quality of life of long-term high-grade glioma survivors. Neuro Oncol 11(1):51–58. doi: 10.1215/15228517-2008-049 PubMedCrossRefPubMedCentralGoogle Scholar
- 42.Steinbach JP, Blaicher HP, Herrlinger U, Wick W, Nägele T, Meyermann R, Tatagiba M, Bamberg M, Dichgans J, Karnath HO, Weller M (2006) Surviving glioblastoma for more than 5 years: the patient’s perspective. Neurology 66(2):239–242. doi: 10.1212/01.wnl.0000194221.89948.a0 PubMedCrossRefGoogle Scholar
- 45.Scott N, Fayers P, Aaronson N, Bottomley A, de Graeff A, Groenvold M, Gundy C, Koller M, Petersen M, Sprangers M (2008) EORTC QLQ-C30 reference values. EORTC Quality of Life Group, BelgiumGoogle Scholar
- 49.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(2):163–168. doi: 10.1097/COC.0b013e318149f1d3 PubMedCrossRefGoogle Scholar
- 50.Australian Government (2011) National carer strategy. Commonwealth of Australia, CanberraGoogle Scholar
- 51.HM Government (2010) Recognised, valued and supported: next steps for the carers strategy. Department of Health, LondonGoogle Scholar
- 52.Canadian Caregiver Coalition (2008) A framework for a Canadian caregiver strategy. Canadian Caregiver Coalition, CanadaGoogle Scholar