Sunday, 23 June 2013

The wheelchair needs of MSers change due to the progressive nature of MS. #MSBlog #MSResearch

Epub: Dolan and Henderson. Patient and equipment profile for wheelchair seating clinic provision. Disabil Rehabil Assist Technol. 2013 Jun 19.

Purpose: To characterise the provision of wheelchair seating both pre- and post-clinical intervention and compare and contrast the two largest diagnostic groups. 

Method: The case notes of those attending a wheelchair seating clinic for adults over a defined period were reviewed retrospectively. A classification system was devised that delineates between the complexity and type of equipment to gain a better understanding of provision. 

Results: 146 patients were included; mean age 45 years (SD 16); 53.4% male. The two most prevalent primary medical diagnoses were cerebral palsy (CP) and multiple sclerosis (MS); 48.6% and 20.5%, respectively. The MS group, in comparison to the CP group, were significantly more likely to be older, new to seating provision, have been seen more recently, have a powered wheelchair, self-propel their manual wheelchair, have low rather than high complexity equipment and have their equipment changed following assessment. 

Conclusions: The equipment classification system will allow results from different studies to be readily compared. The results for those with CP and MS reflect the respective stable and progressive nature of these conditions. Referrals for those with MS should be prioritised. Wheelchair seating users with MS should be reassessed ∼18 months after provision. 

Implications for Rehabilitation: A detailed classification of wheelchair seating equipment based on a recognised standard vocabulary, such as the one proposed, is required to gain a better understanding of provision. Wheelchair seating equipment budget and staffing levels should reflect the diagnostic make up of a service's patient population. Referrals for people with MS should be prioritised as their current wheelchair seating provision is more likely not to be meeting their needs. People with MS should have a clinical review 18 months after wheelchair seating provision.


"The results of this study are self-explanatory. MSers who need wheelchairs usually have progressive disease therefore their requirements change quite quickly."
"Can you imagine a treatment that reduces the need for a wheelchair by 50% or delays the average time to a wheelchair by 15 years? We may have that treatment already."

9 comments:

  1. "Can you imagine a treatment that reduces the need for a wheelchair by 50% or delays the average time to a wheelchair by 15 years? We may have that treatment already."

    Go on ....

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    1. Cat if you have been following my talks on early highly-active treatments (formerly early aggressive treatment) you will have seen several slides that show DMTs flat-lining disability for several years; i.e. MSers who have had them have found their disability improve or stabilise. These drugs are in the here and now. Obviously we need to wait 15-20 years to see what happens in the long-term, but is it ethical to let a generation of MSers wait for a 20 year experiment to conclude? Or should they be allowed to take the risk up front with the hope of the 20 year experiment being successful? At the moment this decision is being made by the regulators (EMA) and payers (NICE/Commissioner).

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  2. I imagine G is talking about Alemtuzumab or Oral Cladribine. And we're back to the issue of the regulators and not being permitted to use such drugs as first line therapies. Until the neuros are willing to break the rules and do the best for their patients we're unlikely to see these benefits.

    The European regulators will make a decision about Alemtuzumab later this week - bet they don't allow patients with their neuros to make an informed choice.

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  3. I want this drug - anything to keep the dreaded wheelchair at bay. I'm happy to pay for it. Why would the health professionals stop me from getting it?

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    1. Come to America. If you have the cash then we'll give you the stash. Kiss goodbye to that wheelchair apprehension forever and start living your life to the max again. You can also purchase some firearms on your way out.

      I'll take UK health care over the US any day. God Save the Queen.

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  4. The more I hear about the benefits of early aggressive treatments, the angrier and more frustrated I feel that I've not been given the option. I almost feel I should stop reading these posts because I get worked up and tearful.

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    1. Yes Prof G, your constant banging on about early aggressive treatment is creating frustration and apathy. It's highly insensitive and tormenting when we read reports that we're missing out on treatments that will no longer benefit us because we've missed the boat (post 2 years). I can understand why you are doing it but this isn't the right place. We ne neuro-protective strategies, not first line DMTs. Most of us are beyond that.

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  5. Ah, okay. I thought there was something else. In the US, I don't have access to even Tysabri and I certainly will not be able to use Alem. because my neurologists will want to see me a lot sicker. So, even if it's approved by the FDA, early aggressive treatment is still not the paradigm here. You've got to be failing a first-line drug for most of the doctors here to prescribe. I would hope to get the good stuff long BEFORE secondary progression kicks in. But my doctors prefer to play it safe.

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  6. Rather than falling victim to frustration and apathy, hoiw about turn your energy to campaigning and action?

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