Research into the excessive-saliva management of patients with MND (ProSec3)
I have been invited to participate in some multi-centre research led by the Sheffield MND Care and Research Centre at Sheffield Teaching Hospitals NHS Foundation Trust. The study will assess how saliva problems are affecting patients with MND. The researchers will also be trying to develop an acceptable and effective way of measuring the severity of the saliva problems that MND patients are experiencing.
This is highly relevant to me because, although I have absolutely no problems yet, approximately half of all MND patients suffer from excess saliva. Symptoms caused by saliva problems can be extremely debilitating and can substantially reduce quality of life. So, I really want to help anyone who is seeking ways to improve things.
The study will allow researchers to assess how many patients with MND have a secretion problem and how problematic those symptoms are for them. They will also seek to compare the effectiveness and the side-effects of different therapies. Very importantly, they will test out a new way of deciding how severe a patient’s saliva problem actually is.
This is crucial because currently there is no common practice as to how to diagnose excessive saliva. Sometimes doctors simply discuss symptoms with a patient to get their perspective of how it has been affecting them over time. Sometimes the doctor actually measures saliva volume. Neither of these methods provides a reliable way to monitor secretion problems or assess the success of any recommended treatments.
The researchers have developed a new questionnaire to assess the severity of saliva problems, and part of the research I’m involved in is to determine how useful this questionnaire is as a diagnostic tool. If successful, in the future it would be used more widely in MND care, and help doctors assess how well their management plans are controlling patients’ secretion problems. It feels good that I’m on the inside-track. After all, there’s a 50-50 chance that one of those patients will be me…