Developing the Myelopathy.org Symptom Inventory (MOSI) for Degenerative Cervical Myelopathy

Introduction - What are we working on?

Degenerative Cervical Myelopathy (DCM) occurs when the spinal cord in the neck is affected by arthritis.

Whilst healthcare textbooks have often described a small number of symptoms such as loss of coordination and falls, over the last 5 years, Myelopathy.org and its community of people living with DCM, has shown this is a major underrepresentation of the diverse problems that can arise.

Building on this foundation, we now want to create a new assessment tool for DCM, that can better capture and measure its diverse impact and we need your help again.

This survey is for people living with DCM, and is composed of 4 sections:

(1) Basic Personal Details
(2) DCM Experience measured using current healthcare tools
(3) DCM Experience measured using the MOSI (Myeopathy.org Symptom Inventory)
(4) Feedback on the MOSI

Participants will be invited to complete sections (2-4) again at one month intervals.

By analysing your feedback, and comparing the MOSI to existing measures of DCM and how it changes over time, we will be able to work out:

- Are all the questions required? Could it be shortened?
- Does the MOSI measure the severity of symptoms?
- Does the MOSI measure DCM consistently, over time?
- How should the MOSI be combined to produce a score or scores of DCM?

These are all key properties of an effective medical assessment tool. It is likely this version of the MOSI will therefore change during our development, based on your feedback and experiences.

This study is entirely voluntary, and you are free to withdraw (including to remove your data) at any time.

If you have any questions, please feel free to get in touch with Ben Davies (ben@myelopathy.org)