Health-related quality of life and supportive care in patients with rare long-term neurological conditions
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Rare long-term neurological conditions (rLTNCs) may have significant impact on patients’ health-related quality of life (HRQL); however, evidence is sparse. We assessed HRQL and access to supportive care in patients with rLTNCs.
Survey of patients with rare rLTNCs (motor neurone disease, Huntington’s disease, cerebellar ataxia, progressive supranuclear palsy, multiple system atrophy, Charcot–Marie–Tooth disease and postpolio syndrome) to assess current access to health and social care, and HRQL using the Euroqol EQ-5D.
A total of 266 participants with rLTNCs completed the survey. The HRQL of patients is substantially reduced compared to the general population. Many patients reported pain, were anxious or depressed and experienced problems with mobility, self-care and usual activities (mean EQ-5D index scores ranged from 0.2 to 0.44). Although some patients have accessed rehabilitative services, results suggest care coordination could be improved.
Rare long-term neurological conditions have a significant impact on HRQL. Many patients with rLTNCs do not seem to be accessing the level of health and social care services that could improve their HRQL.
KeywordsHealth-related Quality of Life Long-term neurological conditions EQ-5D Service access
The study was part of the RESULT study which was funded by the UK Department of Health Policy Research Programme. The authors thank Ms Helen Duffy for administrative support in preparation of the manuscript.
Conflicts of interest
No conflicts of interest are declared.
- 1.Sackley, C., Hoppitt, T., Calvert, M., Pall, H., Gill, P., Yao, G. et al. (2011). Review of epidemiology and service use in rare long-term neurological conditions (RESULT). Department of Health.http://www.ltnc.org.uk/download_files/final%20reports/Oct_11/RESULT_Final_Report.pdf. Accessed 17 Sept 2012.
- 2.Department of Health (2005). The National Service Framework for long term conditions. http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/documents/digitalasset/dh_4105369.pdf. Accessed 17 Sept 2012.
- 3.Neurological Alliance response to health white paper, Equity and Excellence: Liberating the NHS. Oct 2010. http://www.mstrust.org.uk/professionals/downloads/neurological_allaince_response_to_equity_excellence.pdf. Accessed 20 Mar 2012.
- 4.Department of Health Report by the Comptroller and Auditor General. HC1586, Session 2010-2012 (2011). Services for people with neurological conditions. 16th December 2011. The Stationery Office. http://www.official-documents.gov.uk/document/hc1012/hc15/1586/1586.pdf. Accessed 17 Sept 2012.
- 5.Aubeeluck, A., Buchanan, H., Stupple, E. ‘All the burden on all the carers’: Exploring quality of life with family care givers of Huntington’s disease patients. Quality of Life Research. November 2011 Epub ahead of print.Google Scholar
- 6.The Health Improvement Network (THIN) Database which collates data from 429 UK general medical practices. http://www.thin-uk.com/. Accessed 22 Mar 2012.
- 14.Kind, P., Hardman, G., Macran, S. (1999). UK population norms for EQ-5D. University of York Centre for Health Economics, Discussion paper 172.Google Scholar
- 21.Jacqui, W. (2011). Services for people with neurological conditions are poor value for money. BMJ 343.Google Scholar
- 22.Signorello, L. B., McLaughlin, J. K., Lipworth, L., Friis, S., Sorensen, H. T., Blot, W. J. (2002). Confounding by indication in epidemiologic studies of commonly used analgesics. American Journal of Therapeutics 9(3).Google Scholar