Abstract
Stroke can be a life-threatening disease, but it is more often a disease resulting in chronic disability. In fact, it is the most likely cause of chronic disability in the elderly [1]. Stroke can affect many aspects of our behavior and personality. It can impair our ability to move, see, speak, memorize, or think and can thus affect whether and how we can enjoy living. The focus of stroke research and stroke rehabilitation has long been to increase survival and reduce disability—disability understood as the degree to which the affected patient depends on external help for accomplishing tasks of daily living. This is still a valid perspective, but it is not the only one. From a patient’s perspective disability matters but sometimes not as much as other consequences of a stroke. Pain is a case in point. Patients with upper limb plegia frequently develop contractures. These contractures in turn can lead to pain. Regular physiotherapy can often prevent those contractures and reduce the concomitant pain. This will not reduce the required help or reduce the disability but can significantly affect a patient’s quality of life. There are other examples that illustrate that disability and life quality can dissociate. Patients with hemiplegia will often require more help than patients with isolated aphasia and are thus more disabled. But from the patient’s perspective the inability to communicate their thoughts, worries, and wishes can be much more soul-destroying than the inability to move. It seems obvious that for a system, which aims to improve and maintain the well-being of all patients in its care, the perspective of those patients should have the highest priority and at the very least should be taken into consideration. Current trends suggest that in the future those perspectives will not only have to be taken into consideration, but might become a major force in shaping our health system. Government organizations with the task to decide which treatments will receive funding are already taking the quality of the life saved or extended into the equation [2].
Access this chapter
Tax calculation will be finalised at checkout
Purchases are for personal use only
References
Bonita R, Solomon N, Broad JB. Prevalence of stroke and stroke-related disability—estimates from the Auckland stroke studies. Stroke. 1997;28(10):1898–902.
Tengs TO, Yu M, Luistro E. Health-related quality of life after stroke—a comprehensive review. Stroke. 2001;32(4):964–71.
Gold MR, Franks P, McCoy KI, Fryback DG. Toward consistency in cost-utility analyses—using national measures to create condition-specific values. Med Care. 1998;36(6):778–92.
World Health Organization. The international classification of impairments, disabilities and handicaps. Geneva: World Health Organization; 1980.
Tennant A, Geddes JM, Fear J, Hillman M, Chamberlain MA. Outcome following stroke. Disabil Rehabil. 1997;19:278–84.
Indredavik B, Bakke F, Slørdahl SA, Rokseth R, Håheim LL. Stroke unit treatment improves long-term quality of life—a randomized controlled trial. Stroke. 1998;29(5):895–9.
Shin AY, Porter PJ, Wallace MC, Naglie G. Quality of life of stroke in younger individuals—utility assessment in patients with arteriovenous malformations. Stroke. 1997;28(12):2395–9.
Gage BF, Cardinalli AB, Owens DK. The effect of stroke and stroke prophylaxis with aspirin or warfarin on quality of life. Arch Intern Med. 1996;156(16):1829–36.
Buck D, Jacoby A, Massey A, Ford G. Evaluation of measures used to assess quality of life after stroke. Stroke. 2000;31(8):2004–10.
Bergner M, Bobbitt RA, Carter WB, Gilson BS. The sickness impact profile—development and final revision of a health-status measure. Med Care. 1981;19(8):787–805.
Hunt SM, McKenna SP, McEwen J, Backett EM, Williams J, Papp E. A quantitative approach to perceived health-status—a validation study. J Epidemiol Community Health. 1980;34(4):281–6.
Ware JE, Sherbourne CD. The MOS 36-item short-form health survey (SF-36). 1. Conceptual-framework and item selection. Med Care. 1992;30(6):473–83.
The EuroQol Group. EuroQol: a new facility for the measurement of health related quality of life. Health Policy. 1990;16:199–208.
Feeny D, Torrance GW, Furlong WJ. Health utility index. In: Spilker B, editor. Quality of life and pharmacoeconomics in clinical trials. Philadelphia, PA: Lippincott-Raven; 1996.
Harwood RH, Gompertz P, Ebrahim S. Handicap one-year after a stroke—validity of a new scale. J Neurol Neurosurg Psychiatry. 1994;57(7):825–9.
Buck D, Jacoby A, Massey A, Steen N, Sharma A, Ford GA. Development and validation of NEWSQOL (R), the Newcastle Stroke-Specific Quality of Life Measure. Cerebrovasc Dis. 2004;17(2–3):143–52.
Doyle PJ, McNeil MR, Bost JE, Ross KB, Wambaugh JL, Hula WD, et al. The Burden of Stroke Scale (BOSS) provided valid, reliable, and responsive score estimates of functioning and well-being during the first year of recovery from stroke. Qual Life Res. 2007;16(8):1389–98.
Duncan PW, Wallace D, Lai SM, Johnson D, Embretson S, Laster LJ. The stroke impact scale version 2.0—evaluation of reliability, validity, and sensitivity to change. Stroke. 1999;30(10):2131–40.
Hamedani AG, Wells CK, Brass LM, Kernan WN, Viscoli CM, Maraire JN, et al. A quality-of-life instrument for young hemorrhagic stroke patients. Stroke. 2001;32(3):687–95.
Hilari K, Byng S, Lamping DL, Smith SC. Stroke and aphasia quality of life scale-39 (SAQOL-39)—evaluation of acceptability, reliability, and validity. Stroke. 2003;34(8):1944–50.
vanStraten A, deHaan RJ, Limburg M, Schuling J, Bossuyt PM, van den Bos GA. A stroke-adapted 30-item version of the sickness impact profile to assess quality of life (SA-SIP30). Stroke. 1997;28(11):2155–61.
Williams LS, Weinberger M, Harris LE, Clark DO, Biller J. Development of a stroke-specific quality of life scale. Stroke. 1999;30(7):1362–9.
Carod-Artal FJ, Egido JA. Quality of life after stroke: the importance of a good recovery. Cerebrovasc Dis. 2009;27:204–14.
Carod-Artal FJ, Coral LF, Trizotto DS, Moreira CM. The stroke impact scale 3.0—evaluation of acceptability, reliability, and validity of the Brazilian version. Stroke. 2008;39(9):2477–84.
Duncan PW, Lai SM, Tyler D, Perera S, Reker DM, Studenski S. Evaluation of proxy responses to the Stroke Impact Scale. Stroke. 2002;33(11):2593–9.
Hilari K, Owen S, Farrelly SJ. Proxy and self-report agreement on the Stroke and Aphasia Quality of Life Scale-39. J Neurol Neurosurg Psychiatry. 2007;78(10):1072–5.
Williams LS, Bakas T, Brizendine E, Plue L, Tu W, Hendrie H, et al. How valid are family proxy assessments of stroke patients’ health-related quality of life? Stroke. 2006;37(8):2081–5.
Haacke C, Althaus A, Spottke A, Siebert U, Back T, Dodel R. Long-term outcome after stroke—evaluating health-related quality of life using utility measurements. Stroke. 2006;37(1):193–8.
Post PN, Stiggelbout AM, Wakker PP. The utility of health states after stroke—a systematic review of the literature. Stroke. 2001;32(6):1425–9.
Lai SM, Studenski S, Duncan PW, Perera S. Persisting consequences of stroke measured by the Stroke Impact Scale. Stroke. 2002;33(7):1840–4.
Bruggimann L, Annoni JM, Staub F, von Steinbüchel N, Van der Linden M, Bogousslavsky J. Chronic posttraumatic stress symptoms after nonsevere stroke. Neurology. 2006;66(4):513–6.
Noble AJ, Schenk T. Psychosocial outcome following subarachnoid haemorrhage: an underresearched problem. Br J Neurosci Nurs. 2009;5(8):372–80.
Lindgren I, Jönsson AC, Norrving B, Lindgren A. Shoulder pain after stroke—a prospective population-based study. Stroke. 2007;38(2):343–8.
Jönsson AC, Lindgren I, Hallström B, Norrving B, Lindgren A. Prevalence and intensity of pain after stroke: a population based study focusing on patients’ perspectives. J Neurol Neurosurg Psychiatry. 2006;77(5):590–5.
Carod J, Egido J, González JL, Varela De Seijas E. Poststroke sexual dysfunction and quality of life. Stroke. 1999;30(10):2238–9.
Korpelainen JT, Nieminen P, Myllyla VV. Sexual functioning among stroke patients and their spouses. Stroke. 1999;30(4):715–9.
Carod-Artal FJ, González-Gutiérrez JL, Herrero JA, Horan T, De Seijas EV. Functional recovery and instrumental activities of daily living: follow-up 1-year after treatment in a stroke unit. Brain Inj. 2002;16(3):207–16.
Gargano JW, Reeves MJ; Paul Coverdell National Acute Stroke Registry Michigan Prototype Investigators. Sex differences in stroke recovery and stroke-specific quality of life—results from a statewide stroke registry. Stroke. 2007;38(9):2541–48.
Forsberg-Warleby G, Moller A, Blomstrand C. Psychological well-being of spouses of stroke patients during the first year after stroke. Clin Rehabil. 2004;18(4):430–7.
Darlington AS, Dippel DW, Ribbers GM, van Balen R, Passchier J, Busschbach JJ. Coping strategies as determinants of quality of life in stroke patients: a longitudinal study. Cerebrovasc Dis. 2007;23(5–6):401–7.
Ayerbe L, Ayis S, Rudd AG, Heuschmann PU, Wolfe CD. Natural history, predictors, and associations of depression 5 years after stroke the South London Stroke Register. Stroke. 2011;42(7):1907–11.
Kwok T, Lo RS, Wong E, Wai-Kwong T, Mok V, Kai-Sing W. Quality of life of stroke survivors: a 1-year follow-up study. Arch Phys Med Rehabil. 2006;87(9):1177–82.
Carod-Artal FJ. Post-stroke depression (I). Epidemiology diagnostic criteria and risk factors. Rev Neurol. 2006;42(3):169–75.
Rochette A, Bravo G, Desrosiers J, St-Cyr Tribble D, Bourget A. Adaptation process, participation and depression over six months in first-stroke individuals and spouses. Clin Rehabil. 2007;1(6):554–62.
Daniel K, Wolfe CD, Busch MA, McKevitt C. What are the social consequences of stroke for working-aged adults? A systematic review. Stroke. 2009;40(6):E431–40.
Mackay A, Nias BC. Strokes in the young and middle-aged—consequences to the family and to society. J R Coll Physicians Lond. 1979;13(2):106–12.
Teasell RW, McRae MP, Finestone HM. Social issues in the rehabilitation of younger stroke patients. [Article]. Arch Phys Med Rehabil. 2000;81(2):205–9.
de Rooij NK, Linn FH, van der Plas JA, Algra A, Rinkel GJ. Incidence of subarachnoid haemorrhage: a systematic review with emphasis on region, age, gender and time trends. J Neurol Neurosurg Psychiatry. 2007;78(12):1365–72.
Baisch SB, Schenk T, Noble AJ. What is the cause of post-traumatic stress disorder following subarachnoid haemorrhage? Post-ictal events are key. Acta Neurochir. 2011;153(4):913–22.
Anderson C, Anderson N, Bonita R, et al. Epidemiology of aneurysmal subarachnoid hemorrhage in Australia and New Zealand—incidence and case fatality from the Australasian Cooperative Research on Subarachnoid Hemorrhage Study (ACROSS). Stroke. 2000;31(8):1843–50.
Bamford J, Sandercock P, Dennis M, Burn J, Warlow C. A prospective-study of acute cerebrovascular-disease in the community—the Oxfordshire Community Stroke Project 1981–86.2. Incidence, case fatality rates and overall outcome at one year of cerebral infarction, primary intracerebral and subarachnoid hemorrhage. J Neurol Neurosurg Psychiatry. 1990;53(1):16–22.
Kolominsky-Rabas PL, Weber M, Gefeller O, Neundoerfer B, Heuschmann PU. Epidemiology of ischemic stroke subtypes according to TOAST criteria: incidence, recurrence, and long-term survival in ischemic stroke subtypes—a population-based study. Stroke. 2001;32(12):2735–40.
Wermer MJ, Kool H, Albrecht KW, Rinkel GJ; Aneurysm Screening after Treatment for Ruptured Aneurysms Study Group. Subarachnoid hemorrhage treated with clipping: long-term effects on employment, relationships, personality, and mood. Neurosurgery. 2007;60(1):91–7.
Hütter BO, Gilsbach JM, Kreitschmann I. Quality-of-life and cognitive deficits after subarachnoid hemorrhage. Br J Neurosurg. 1995;9(4):465–75.
Kreitschmann-Andermahr I, Poll E, Hutter BO, Reineke A, Kristes S, Gilsbach JM, et al. Quality of life and psychiatric sequelae following aneurysmal subarachnoid haemorrhage: does neuroendocrine dysfunction play a role? Clin Endocrinol. 2007;66(6):833–7.
Noble AJ, Schenk T. Which variables help explain the poor health-related quality of life after subarachnoid hemorrhage? A meta-analysis. Neurosurgery. 2010;66(4):772–83.
Schneider HJ, Kreitschmann-Andermahr I, Ghigo E, Stalla GK, Agha A. Hypothalamopituitary dysfunction following traumatic brain injury and aneurysmal subarachnoid hemorrhage—a systematic review. JAMA. 2007;298(12):1429–38.
Berry E. Post-traumatic stress disorder after subarachnoid haemorrhage. Br J Clin Psychol. 1998;37:365–7.
Hütter BO. Neuropsychological sequelae of subarachnoid haemorrhage and its treatment. Vienna: Springer; 2000.
Nieuwkamp DJ, Setz LE, Algra A, Linn FH, de Rooij NK, Rinkel GJ. Changes in case fatality of aneurysmal subarachnoid haemorrhage overtime, according to age, sex, and region: a meta-analysis. Lancet Neurol. 2009;8(7):635–42.
Noble AJ, Baisch S, Mendelow AD, Allen L, Kane P, Schenk T. Posttraumatic stress disorder explains reduced quality of life in subarachnoid hemorrhage patients in both the short- and long-term. Neurosurgery. 2008;63:1095–104.
Lipsey JR, Robinson RG, Pearlson GD, Rao K, Price TR. Nortriptyline treatment of post-stroke depression—a double-blind-study. Lancet. 1984;1(8372):297–300.
Wiart L, Petit H, Joseph PA, Mazaux JM, Barat M. Fluoxetine in early poststroke depression—a double-blind placebo-controlled study. Stroke. 2000;31(8):1829–32.
Mezue W, Mathew B, Draper P, Watson R. The impact of care on carers of patients treated for aneurysmal subarachnoid haemorrhage. Br J Neurosurg. 2004;18(2):135–7.
Greenwood N, Mackenzie A, Cloud GC, Wilson N. Informal carers of stroke survivors: factors influencing carers—a systematic review of quantitative studies. Disabil Rehabil. 2008;30(18):1329–49.
Hellawell DJ, Taylor R, Pentland B. Persisting symptoms and carers’ views of outcome after subarachnoid haemorrhage. Clin Rehabil. 1999;13(4):333–40.
Pritchard C, Foulkes L, Lang DA, Neil-Dwyer G. Two-year prospective study of psychosocial outcomes and a cost-analysis of ‘treatment-as-usual’ versus an ‘enhanced’ (specialist liaison nurse) service for aneurysmal sub arachnoid haemorrhage (ASAH) patients and families. Br J Neurosurg. 2004;18(4):347–56.
Béthoux F, Calmels P, Gautheron V, Minaire P. Quality of life of the spouses of stroke patients: a preliminary study. Int J Rehabil Res. 1996;19:291–9.
Forsberg-Wärleby G, Möller A, Blomstrand C. Spouses of first-ever stroke patients—psychological well-being in the first phase after stroke. Stroke. 2001;32(7):1646–51.
Jönsson AC, Lindgren I, Hallström B, Norrving B, Lindgren A. Determinants of quality of life in stroke survivors and their informal caregivers. Stroke. 2005;36(4):803–8.
McCullagh E, Brigstocke G, Donaldson N, Kalra L. Determinants of caregiving burden and quality of life in caregivers of stroke patients. Stroke. 2005;36(10):2181–6.
Rochette A, Desrosiers J, Bravo G, Tribble DS, Bourget A. Changes in participation level after spouse’s first stroke and relationship to burden and depressive symptoms. Cerebrovasc Dis. 2007;24(2–3):255–60.
Rombough RE, Howse EL, Bagg SD, Bartfay WJ. A comparison of studies on the quality of life of primary caregivers of stroke survivors: a systematic review of the literature. Top Stroke Rehabil. 2007;14(3):69–79.
Kwakkel G, Wagenaar RC, Kollen BJ, Lankhorst GJ. Predicting disability in stroke—a critical review of the literature. Age Ageing. 1996;25(6):479–89.
Dewey HM, Thrift AG, Mihalopoulos C, Carter R, Macdonell RA, McNeil JJ, et al. Informal care for stroke survivors—results from the North East Melbourne Stroke Incidence Study (NEMESIS). Stroke. 2002;33(4):1028–33.
Noble AJ, Schenk T. Looking beyond the spontaneous subarachnoid haemorrhage patient: a review of the impact upon family and friends. Br J Neurosci Nurs. 2008;4(6):278–85.
Hellawell DJ, Pentland B. Relatives’ reports of long term problems following traumatic brain injury or subarachnoid haemorrhage. Disabil Rehabil. 2001;23(7):300–5.
Buchanan KM, Elias LJ, Goplen GB. Differing perspectives on outcome after subarachnoid hemorrhage: the patient, the relative, the neurosurgeon. Neurosurgery. 2000;46(4):831–8.
Hop JW, Rinkel GJ, Algra A, van Gijn J. Quality of life in patients and partners after aneurysmal subarachnoid hemorrhage. Stroke. 1998;29(4):798–804.
Ogden JA, Utley T, Mee EW. Neurological and psychosocial outcome 4 to 7 years after subarachnoid hemorrhage. Neurosurgery. 1997;41(1):25–34.
Pritchard C, Clapham L, Foulkes L, Lang DA, Neil-Dwyer G. Comparison of cohorts of elective and emergency neurosurgical patients: psychosocial outcomes of acoustic neuroma and aneurysmal sub arachnoid hemorrhage patients and carers. Surg Neurol. 2004;62(1):7–16.
Pritchard C, Foulkes L, Lang DA, Neil-Dwyer G. Psychosocial outcomes for patients and carers after aneurysmal subarachnoid haemorrhage. Br J Neurosurg. 2001;15(6):456–63.
Noble AJ, Schenk T. Post-traumatic stress disorder in family and friends of spontaneous subarachnoid hemorrhage patients. J Neurosurg. 2008;109:1027–33.
Keefe FJ, Blumenthal J, Baucom D, Affleck G, Waugh R, Caldwell DS, et al. Effects of spouse-assisted coping skills training and exercise training in patients with osteoarthritic knee pain: a randomized controlled study. Pain. 2004;110(3):539–49.
Kennedy P, Duff J, Evans M, Beedie A. Coping effectiveness training reduces depression and anxiety following traumatic spinal cord injuries. Br J Clin Psychol. 2003;42:41–52.
Mant J, Carter J, Wade DT, Winner S. Family support for stroke: a randomised controlled trial. Lancet. 2000;356(9232):808–13.
Author information
Authors and Affiliations
Corresponding author
Editor information
Editors and Affiliations
Rights and permissions
Copyright information
© 2014 Springer Science+Business Media New York
About this chapter
Cite this chapter
Schenk, T., Noble, A.J. (2014). Better Dead than Alive? Quality of Life After Stroke. In: Schweizer, T., Macdonald, R. (eds) The Behavioral Consequences of Stroke. Springer, New York, NY. https://doi.org/10.1007/978-1-4614-7672-6_13
Download citation
DOI: https://doi.org/10.1007/978-1-4614-7672-6_13
Published:
Publisher Name: Springer, New York, NY
Print ISBN: 978-1-4614-7671-9
Online ISBN: 978-1-4614-7672-6
eBook Packages: MedicineMedicine (R0)