Article Text

Download PDFPDF

110 Recruting MND patient research participants: I thought we would have more
  1. Natalie Ayton,
  2. Naomi Seaton and
  3. Christina Faull
  1. LOROS Hospice, Leicester


Introduction LOROS Hospice provides a service to all people with MND in Leicester, Leicestershire and Rutland from the point of their diagnosis and research is an integrated aspect of the services. We wished to offer patients the opportunity to participate in the COMMEND study, a randomised controlled study of commitment and acceptance therapy. Despite a first stage feasibility study no guidance was available to inform the likely number of eligible participants.

The aim of this work was to identify the potential number of patients that could be approached about the study and understand the differences between the total population and this sample and its implication for study feasibility assessments.

Methods The notes of all patients with MND who were registered at the Hospice were identified and mapped to the inclusion and exclusion criteria of the COMMEND study.

Results 70 patients were identified of whom only 19 (27%) were eligible for the COMMEND study. The largest number (33%) were excluded because of receiving nutritional and/or ventilator support. A further 20% were excluded because of cognitive issues and 6% did not speak English as a first language.

Conclusions That less than a third of patients were eligible for this relatively straightforward interventional study was a surprise to us. It is a well known aphorism that potential participants disappear as soon as a study opens. This work provides a screening analysis which informs realistic feasibility assessment and more nuanced understanding of the MND patient population. As LOROS provides care to all patients in the geographical area these findings should be generalizable.

Statistics from

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.