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

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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.

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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

Authors and Affiliations

  1. School of Health and Population Sciences, University of Birmingham, Birmingham, UK

    Melanie Calvert, Thomas Hoppitt, Benjamin Eaton, Edward Savill & Catherine Sackley

  2. Clinical and Experimental Medicine, University of Birmingham, Birmingham, UK

    Hardev Pall

Authors
  1. Melanie Calvert
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  2. Hardev Pall
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  3. Thomas Hoppitt
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  4. Benjamin Eaton
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  5. Edward Savill
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  6. Catherine Sackley
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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
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Appendix 2

See Table 6

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

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