Health-related quality of life and supportive care in patients with rare long-term neurological conditions

Abstract

Purpose

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.

Methods

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.

Results

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.

Conclusions

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.

This is a preview of subscription content, log in to check access.

Fig. 1

References

  1. 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. 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. 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. 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. 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.

  6. 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.

  7. 7.

    Brooks, R., & de Charro, F. (1996). EuroQol: the current state of play. Health Policy, 37(1), 53–72.

    PubMed  Article  CAS  Google Scholar 

  8. 8.

    Schrag, A., Selai, C., Davis, J., Lees, A. J., Jahanshahi, M., & Quinn, N. (2003). Health-related quality of life in patients with progressive supranuclear palsy. Movement Disorders, 18(12), 1464–1469.

    PubMed  Article  Google Scholar 

  9. 9.

    Dolan, P. (1997). Modeling valuations for EuroQol health states. Medical Care, 35, 1095–1108.

    PubMed  Article  CAS  Google Scholar 

  10. 10.

    Ose, D., Wensing, M., Szecsenyi, J., Joos, S., Hermann, K., & Miksch, A. (2009). Impact of primary care based disease management on the health-related quality of life in patients with type 2 diabetes and comorbidity. Diabetes Care, 32(9), 1594–1596.

    PubMed  Article  Google Scholar 

  11. 11.

    Pickard, A. S., Johnson, J. A., Feeny, D. H., Shuaib, A., Carriere, K. C., & Nasser, A. M. (2004). Agreement between patient and proxy assessments of health-related quality of life after stroke using the EQ-5D and health utilities index. Stroke, 35(2), 607–612.

    PubMed  Article  Google Scholar 

  12. 12.

    Haacke, C., Althaus, A., Spottke, A., Siebert, U., Back, T., & Dodel, R. (2006). Long-term outcome after stroke: Evaluating health-related quality of life using utility measurements. Stroke, 37(1), 193–198.

    PubMed  Article  Google Scholar 

  13. 13.

    Sobocki, P., Ekman, M., Agren, H., Krakau, I., Runeson, B., Mårtensson, B., et al. (2007). Health-related quality of life measured with EQ-5D in patients treated for depression in primary care. Value in Health, 10(2), 153–160.

    PubMed  Article  Google Scholar 

  14. 14.

    Kind, P., Hardman, G., Macran, S. (1999). UK population norms for EQ-5D. University of York Centre for Health Economics, Discussion paper 172.

  15. 15.

    Green, C., Kiebert, G., Murphy, C., Mitchell, J. D., O’Brien, M., Burrell, A., et al. (2003). Patients’ health-related quality-of-life and health state values for motor neurone disease/amyotrophic lateral sclerosis. Quality of Life Research, 12(5), 565–574.

    PubMed  Article  CAS  Google Scholar 

  16. 16.

    Schrag, A., Geser, F., Stampfer-Kountchev, M., Seppi, K., Sawires, M., Kollennsperger, M., et al. (2006). Health-related quality of life in multiple system atrophy. Movement Disorders, 21(6), 809–815.

    PubMed  Article  Google Scholar 

  17. 17.

    Kiebert, G. M., Green, C., Murphy, C., Mitchell, J. D., O’Brien, M., Burrell, A., et al. (2001). Patients’ health-related quality of life and utilities associated with different stages of amyotrophic lateral sclerosis. Journal of the Neurological Sciences, 191, 87–93.

    PubMed  Article  CAS  Google Scholar 

  18. 18.

    Schrag, A., Selai, C., Davis, J., Lees, A. J., Jahanshahi, M., & Quinn, N. (2003). Health-related quality of life in patients with progressive supranuclear palsy. Movement Disorders, 18(12), 1464–1469.

    PubMed  Article  Google Scholar 

  19. 19.

    Siderowf, A., Ravina, B., & Glick, H. A. (2002). Preference-based quality-of-life in patients with Parkinson’s disease. Neurology, 59(1), 103–108.

    PubMed  Article  Google Scholar 

  20. 20.

    Reuther, M., Spottke, E. A., Klotsche, J., Riedel, O., Peter, H., Berger, K., et al. (2007). Assessing health-related quality of life in patients with Parkinson’s disease in a prospective longitudinal study. Parkinsonism & Related Disorders, 13(2), 108–114.

    Article  CAS  Google Scholar 

  21. 21.

    Jacqui, W. (2011). Services for people with neurological conditions are poor value for money. BMJ 343.

  22. 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).

  23. 23.

    Peters, M., Fitzpatrick, R., Doll, H., Playford, D., & Jenkinson, C. (2011). Does self-reported well-being of patients with Parkinson’s disease influence caregiver strain and quality of life? Parkinsonism & Related Disorders, 17(5), 348–352. Epub 2011 Feb 26.

    Article  Google Scholar 

Download references

Acknowledgments

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.

Author information

Affiliations

Authors

Corresponding authors

Correspondence to Melanie Calvert or Hardev Pall.

Appendices

Appendix 1

See Table 5.

Table 5 Categorisation of services and resources which are likely to be associated with EQ-5D dimensions based on clinical judgementa

Appendix 2

See Table 6

Table 6 Multivariable model results showing the relationship between EQ-5D score and access to care, accounting for condition

Rights and permissions

Reprints and Permissions

About this article

Cite this article

Calvert, M., Pall, H., Hoppitt, T. et al. Health-related quality of life and supportive care in patients with rare long-term neurological conditions. Qual Life Res 22, 1231–1238 (2013). https://doi.org/10.1007/s11136-012-0269-5

Download citation

Keywords

  • Health-related Quality of Life
  • Long-term neurological conditions
  • EQ-5D
  • Service access