Using 'dead or dependent' as an outcome measure in clinical trials in Parkinson's disease

J Neurol Neurosurg Psychiatry. 2015 Feb;86(2):180-5. doi: 10.1136/jnnp-2014-307703. Epub 2014 May 22.

Abstract

Background: Simple, robust, sensitive and clinically meaningful outcome measures are required for neuroprotective trials in Parkinson's disease (PD). We explored the feasibility of a composite binary outcome measure, 'dead or dependent', in such trials using data from a prospective follow-up study of an incident cohort of PD patients.

Methods: Two hundred incident patients had an annual follow-up, including assessment of the Hoehn-Yahr stage (H-Y) and Schwab and England Activities of Daily Living Scale (S&E). Annual scores were converted into binary variables (H-Y <3 vs H-Y ≥3, and S&E ≥80% vs S&E <80%). A new outcome of 'dead or dependent' was also created, with dependence in activities of daily living defined as S&E <80%. Using these data, sample sizes were calculated for a hypothetical three-year randomised trial in which the trial outcome was defined by a binary clinical variable, all-cause mortality, or PD-related mortality.

Results: At 3 years, 18.0% of patients were dead and 38.4% were dead or dependent. At 80% power, large sample sizes were required if PD-related mortality (n=1938 per study arm) or all-cause mortality (n=734) were used as the outcome, even for large treatment effects (30% reduction in relative risk). The new outcome of 'death or dependency' required the smallest sample sizes of all the outcome measures (n=277 for 30% reduction in relative risk, 627 for a 20% reduction).

Conclusions: 'Death or dependency' is a feasible and potentially useful outcome measure in PD trials of neuroprotective agents, but further work is required to validate its use and define dependency.

Keywords: EVIDENCE-BASED NEUROLOGY; PARKINSON'S DISEASE; RANDOMISED TRIALS.

Publication types

  • Research Support, Non-U.S. Gov't

MeSH terms

  • Activities of Daily Living*
  • Adult
  • Aged
  • Aged, 80 and over
  • Feasibility Studies
  • Female
  • Follow-Up Studies
  • Humans
  • Kaplan-Meier Estimate
  • Male
  • Middle Aged
  • Neuroprotective Agents / therapeutic use*
  • Outcome Assessment, Health Care*
  • Parkinson Disease / drug therapy*
  • Parkinson Disease / mortality
  • Prospective Studies
  • Randomized Controlled Trials as Topic / methods*
  • Reproducibility of Results
  • Sample Size

Substances

  • Neuroprotective Agents