Why do we continue to treat hand function as a secondary outcome in clinical trials? #ClinicSpeak #ToeArt #ThinkHand
When we launched our #ThinkHand campaign last year one of the hand functions that pwMS wanted to preserve was the ability to cut their toenails. This hand function item is pretty obvious. Since then I have started inspecting the state of my patients toenails in clinic and noticed that poor toenail maintenance was clearly linked to disability (EDSS) and deprivation or social isolation. In other words if you can't cut your own toenails and you don't have a partner or family member to do your toenails get neglected. I then did a survey on this topic and of 45 respondents with analysable results there was a clear correlation between EDSS and the ability to cut toenails, which was highly significant.
There are too few respondents to the survey to draw a box-and-whisker for the 'No' respondents, but you can see that the median EDSS for this group was 6.5, compared to 6.0 and 3.0 for this who could cut their toenails with some help or independently, respectively.
Interestingly, 50% of respondents had difficulty cutting their own toenails. The reasons given for not being able to cut their own toenails are linked to disability, i.e. weakness, inco-ordination, reduced sensation and poor vision. For these reasons I have started asking all my patients if they can cut their own toenails, I inspect their toenails in clinic and if their toenails are in a state of disrepair I offer them a referral to the podiatry clinic.
To raise awareness of the toenail issue, which is really a hand issue, I launched an 'art project' to collate a series of pictures of the toenails of pwMS and to relate them to levels of physical disability. Pictures are so much better at telling a story.
The slideshow below represents renditions of pictures of first nine pwMS who have sent in photographs of their toes. I need more pictures to make this project a success. To participate please send me pictures of your toes, with some brief details about your MS and yourself. The pictures will be 'anonymised' and will used as part of our #ThinkHand campaign.
Please send the following information with your picture to email@example.com.
EDSS: (if you don't know your EDSS you can estimate it using our online calculator)
Country: Are you able to cut your own toenails?:
Biography: (this is optional please keep this brief)
- 5 - Yes, easily without help
- 4 - Yes, independently, but it takes longer than in the past
- 3 - Yes, independently, but it takes too long so I often get them cut by someone else
- 2 - Yes, but I need help
- 1 - No, I can't cut my in toenails
- 0 - N/A, I have always had someone else cut my own toenails
CoI: ProfG, the Cheerleader for #ThinkHand
Labels: #ClinicSpeak, #ThinkHand, #ToeArt, disability, survey results, toenails