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Health-related quality of life in Parkinson’s: impact of ‘off’ time and stated treatment preferences

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Abstract

Purpose

Long-term levodopa therapy and related fluctuating plasma concentrations are associated with between-dose periods of ‘off time’ resulting in substantial variation in symptoms and functioning throughout the day in people with Parkinson’s (PwP).

Methods

PwP across UK, France, Spain and Italy completed an online survey to explore: the impact of ‘off time’ on (1) health-related quality of life (HRQL) and (2) on functioning and ability to undertake usual activities; (3) the value of ‘off time’ relative to other factors associated with Parkinson’s through a stated preference discrete choice experiment (SPDCE).

Results

In total, 305 PwP completed the online survey. Overall mean HRQL (utility) score was significantly lower for ‘off time’ (0.37) than for ‘on time’ (0.60). All attributes within the SPDCE were significant predictors of treatment choice, although increased duration of ‘on time’ (per hour per day: odds ratio (OR) = 1.40) and predictability of ‘off time’ to within 30 min (OR = 1.42) were valued most highly.

Conclusions

‘On time’ and predictability of ‘off time’ are highly valued by PwP. Due to substantial diurnal variation of Parkinson’s symptoms, standard patient-reported outcome (PRO) assessments may not adequately capture the impact of ‘off time’ on HRQL and participation in daily activities.

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Notes

  1. Sample excludes 30 pilots, includes those failing the logic and consistency checks.

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Acknowledgments

European Parkinson’s Disease Association and Parkinson’s UK reviewed qualitative stage materials/methods and assisted with participant recruitment for qualitative interviews.

Author information

Authors and Affiliations

  1. ICON Patient Reported Outcomes, Oxford, UK

    Cicely Kerr & Charlotte E. Kosmas

  2. ViiV Healthcare, Brentford, UK

    Emily J. Lloyd

  3. GlaxoSmithKline, Brentford, UK

    Helen T. Smith & James A. Cooper

  4. ICON Epidemiology, Vancouver, Canada

    Karissa Johnston

  5. Health Economics and Health Technology Assessment, University of Glasgow, Glasgow, UK

    Emma McIntosh

  6. Bladon Associates, 3 Kings Meadow, OX2 0DP, Oxford, UK

    Andrew J. Lloyd

Authors
  1. Cicely Kerr
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  2. Emily J. Lloyd
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  4. Helen T. Smith
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  7. Emma McIntosh
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  8. Andrew J. Lloyd
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Corresponding author

Correspondence to Andrew J. Lloyd.

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Disclosures

GlaxoSmithKline funded this study (HO-11-802), which was conducted by ICON plc. Helen Smith and James Cooper are employees and shareholders of GlaxoSmithKline. Emily Lloyd was an employee of GlaxoSmithKline at the time of manuscript development and is a shareholder of GlaxoSmithKline. Charlotte Kosmas is an employee of ICON plc. Cicely Kerr and Karissa Johnston were employees of ICON plc at the time of manuscript development. Andrew Lloyd is a consultant for ICON plc and also receives some financial support from EuroQol group and the journal Value in Health where he is a co-editor. Emma McIntosh is an employee of University of Glasgow and is funded in part by Parkinson’s UK (Parkinson’s UK Research Fellow). The views expressed are those of the authors and not the funding bodies or Parkinson’s UK.

Additional information

Cicely Kerr was working at ICON Patient Reported Outcomes, Oxford, UK, at the time the work was conducted.

Karissa Johnston was working at ICON Epidemiology, Vancouver, Canada, at the time the work was conducted.

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Kerr, C., Lloyd, E.J., Kosmas, C.E. et al. Health-related quality of life in Parkinson’s: impact of ‘off’ time and stated treatment preferences. Qual Life Res 25, 1505–1515 (2016). https://doi.org/10.1007/s11136-015-1187-0

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  • DOI: https://doi.org/10.1007/s11136-015-1187-0

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