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World-leading hospital secures funding for SCI research

Craig Hospital becomes one of only two centres in the United States to be continuously funded as an SCIMS since 1974

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A world-renowned neurorehabilitation and research hospital for people with brain and spinal cord injury (SCI) has secured further funding to serve as a Spinal Cord Injury Model Systems (SCIMS) centre. 

Craig Hospital becomes one of only two specialist centres in the United States to be continuously funded as an SCIMS since 1974 and enables it to advance its pioneering work further still. 

The five-year, $2.4million grant from the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR) provides funding for Craig to conduct research that assesses the long-term outcomes of people who have sustained SCI. 

Craig’s findings contribute to the National SCI Model Systems database, which has been in existence since 1973, while also proposing and participating in collaborative research studies focused on improving outcomes for individuals who have sustained SCI.

Throughout the course of the grant cycle, Craig has identified a number of objectives, including investigating the efficacy of various approaches to improve upper extremity function and trunk stability among individuals after cervical SCI and the evaluation of oral health status among the US SCI population.

The latest funding announcement is further endorsement of the world-leading work being done at Craig, which has been a pioneer in neurorehabilitation since 1956 and delivers stellar outcomes and a renewed view on what is possible in life to patients at its 93-bed facility in Colorado. 

“We are extremely proud to have received this competitive grant from the NIDILRR yet again, as it designates Craig as both a clinical and a research centre of excellence,” said Candy Tefertiller, executive director of research and evaluation at Craig Hospital. 

“Our team recognises the benefit of this grant every day, as we strive to translate our research findings to clinical care within our hospital, with the goal of improving the lives of our patients who have sustained SCI while also contributing knowledge to the greater field of SCI rehabilitation.”

There are 14 SCI Model Systems throughout the US, making up the largest network of research centres devoted to SCI in the world. 

These centres collaborate on research and share knowledge and data that helps inform clinical treatment and rehabilitation. 

As part of the designation, centres must have a comprehensive clinical service delivery program for patients who have sustained SCI in addition to the research component.

Spinal

Rediscovering sex and intimacy after CES

A first-of-its-kind psychosexual therapy service is supporting people living with Cauda Equina Syndrome and their partners

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People living with Cauda Equina Syndrome (CES) are being supported in rediscovering their sex and intimate lives through the launch of a first-of-its-kind therapy service. 

Sexual dysfunction is a common effect of CES, along with loss of sensation and issues around fertility, but a lack of specialist provision makes it something that is rarely addressed. 

Now, to help address issues around sexual and intimate problems, a psychosexual therapy service has been created by Michelle Donald and Sue Lennon, working in conjunction with the Cauda Equina Champions Charity.

Despite its life-changing impact, CES as a condition is not widely known about even, meaning many people suffer in silence through a lack of diagnosis or appropriate support. 

The syndrome is a rare and severe type of spinal stenosis where the nerves in the lower back suddenly become severely compressed, and failure to diagnose and receive appropriate treatment can lead to greater risk of long-term consequences including incontinence or paralysis.  

It can have a devastating impact on people’s intimate lives through the ramifications of saddle numbness, pain, bladder and bowel issues and body image, which can impact significantly on personal relationships.

Through the creation of the psychosexual therapy service, Michelle and Sue, both expert professionals in their field, will support people in overcoming psychological barriers to help rebuild satisfying intimate lives and help them come to terms with their ‘new self’. 

The charity will help fund this support for CES patients and their partner to explore new ways of enjoying sex and intimacy after life-changing injury. 

Claire Thornber, founder of the Cauda Equina Champions Charity, is a passionate campaigner for greater support and awareness around CES, and recognises the huge impact sexual and intimacy problems can have on the lives of couples. 

“As a former CES patient, I am all too aware of the impact of sexual dysfunction arising from a Cauda Equina injury,” she tells NR Times. 

“On a daily basis, through our charity we hear of the struggles people face adjusting to life after CES. There is a huge human element to this, it’s not just about the surgery and medical impact. Many people resign themselves to withdrawing from any kind of intimacy and often relationships are put under huge pressure. 

“We want to support couples and families to move forward together and empower the person living with CES to address this. For some people after CES, sex can be the last thing they want to think about and it is put on the back burner, but we are here for when they are ready.

“We are delighted to be able to offer this much-needed, crucial service, we’ve had some really good feedback from clinicians about what we have created. 

“Also, we’re thrilled to be supported by Michelle and Sue, who bring with them years of experience in this area, helping people lead happy and fulfilling lives once again.”

“What a thrill it is for me to work with people who are truly curious about sexual satisfaction after CES,” says Sue.   

“I really can’t wait to get started, joining Champion’s Charity in making a real difference and finding very happy outcomes.”

Michelle adds: “Having a low level spinal injury in my late 20s, I became aware of the many issues surrounding how an SCI affects a person’s relationships and sensuality.

“Provisions in the NHS are sadly very few. I am delighted to be able to offer this service to enable people to start a different intimate journey.”

Referrals can be made to the charity at info@championscharity.org.uk or via the helpline on 03335 777113

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Spinal

Trials of ONWARD spinal cord therapy deliver early boost

One patient paralysed for years is now moving his arms and toes following ARC Therapy

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Trials of revolutionary ONWARD spinal cord therapy which is set to transform the lives of people living with paralysis are delivering strong early results, with reports of participants regaining movement in their arms and toes. 

ARC Therapy is being trialled in sites around the world, including in the NHS Greater Glasgow and Clyde (NHSGGC) in a first-of-its-kind study in the UK. 

The treatment, developed by ONWARD, uses tiny non-invasive electric pulses to improve connections across the damaged area of the spinal cord, with the ambition of delivering life-changing outcomes through restoring limb function for people who are tetraplegic or paralysed from the neck down. 

The trials, part of the global Up-LIFT study run by ONWARD, are the latest step in the development of the ARC EX and ARC IM technologies, the first of which could be commercially available as early as 2023. 

Dr Mariel Purcell, consultant in spinal injuries at NHSGGC who is leading the study at the Spinal Injuries Unit at the Queen Elizabeth University Hospital, said: “This is a really exciting research project involving a piece of kit that is completely non-invasive.

“We’ve had a lot of interest – from patients and other spinal injuries clinics around the UK, and further afield. We’ve even been contacted by a patient from the south of England, who is prepared to relocate here just to take part in the study.”

Initial results are promising, says Dr Purcell, and are helping to show that the introduction of ARC Therapy earlier in a person’s rehabilitation could deliver significant benefits. 

“One patient who we have treated with the device was injured playing rugby at the age of 16 and had been completely paralysed from the neck down since,” she said. 

“After the treatment, he had no problems with bladder or temperature control, he could move his big toes, and he can use his arms enough to operate a mobile phone.”

The first half of the study involves eight weeks of intensive therapy to optimise upper limb movement and function. During the second phase of the study, participants will receive non-invasive stimulation of the spinal cord in addition to traditional upper limb therapy for a further eight weeks.

The ARC therapy device works by improving the connections between healthy areas by placing electrodes on the skin that activate the nerves below the level of the injury, making the body more receptive to hand and arm movements.

The aim of the treatment is to help people regain some use of their arms and hands, but it may also improve bladder and bowel function, along with blood pressure control and temperature regulation.

NHSGGC said the participants in the study have received all the rehabilitation and treatment currently available and are living as independently as they can. 

The study in Glasgow is recruiting participants until end of the year and it is hoped the final results of the study will be available later next year.

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Spinal

Paving the way for better CES research

Through the creation of CESCOS, future research can be synthesised and used for the greater benefit of patients

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A doctor whose work has paved the way for the future of ‘mega data’ research into Cauda Equina Syndrome (CES) and its impact on patients’ lives has spoken of the importance of creating a more standardised approach to evidence-gathering. 

Dr Nish Srikandarajah has created the Cauda Equina Syndrome Core Outcome Set (CESCOS), which has helped to define the outcomes that should be reported and enables the collection of evidence in a way that will allow for data synthesis. 

Although research has been done into CES previously, Dr Srikandarajah discovered it was sporadic and completed in many formats, which would not allow it to be collated with other studies. 

Through the creation of the CESCOS, research is now underway in at least two new studies, including one multi-centre UK study, which will enable more understanding of CES into the future – a huge benefit to patients who are often significantly disadvantaged by the lack of awareness around the life-changing condition. 

“To get good evidence you need to be able to pool all of this data together and use it as one big mega data. If you fast-track ten years and have the mega data then you can make really good evidence-based guidelines,” said Dr Srikandarajah, a neurosurgeon at The Walton Centre in Liverpool, speaking on International CES Awareness Day.  

“In scoping searches, you find there are a lot of papers out there but if we have a pyramid of how good studies are and the top of the pyramid is the best, the level of evidence we have for this syndrome is right at the bottom of the pyramid. If there’s five levels of evidence, with level one being the best, we’re hitting at three and four at the moment. 

“What needs to happen is to reset the switch of this condition, it’s not a novel concept, it’s been done in other disease areas and I thought I needed to do this with CES through the CESCOS. The core outcome involves patients, professionals, key stakeholders and patients’ family members get most important outcomes.”

Through assessment of what research did exist into CES – a rare and severe type of spinal stenosis where the nerves in the lower back suddenly become severely compressed, which failure to diagnose and receive appropriate treatment can lead to risk of incontinence, paralysis and loss of sexual function – Dr Srikandarajah uncovered the fragmented nature of what was available. 

“Studies are done retrospectively, what we need to do it to have in in trials and prospective studies where we’re actively looking it over time, and we haven’t got there yet with CES,” he told the first-ever CES Festival and Conference. 

Dr Nish Srikandarajah

“When you look at these studies, one researcher may look at bag and leg pain, another may look at bladder as the most important thing, another may look at bladder and bowel. 

“Then the issue you get after 15 to 20 years is how do you pull together these things, and on top of that they’re assessing it in different ways. One study might look at a bladder outcome and assess with one questionnaire and another may use a different one. 

“So after 20 years of these studies you can’t put them together, essentially it becomes really difficult. The problem lies therein.”

Through a literature review and interviews with patients and healthcare professionals, grading what is important to them in terms of CES understanding and impact, the CESCOS was created. An International Consensus Meeting was also held to bring together participants from around the world. 

Patient testimonials helped to articulate the reality of the situation they face, with a lack of knowledge and awareness, even from within many parts of the medical profession. 

“If we came out of surgery and we needed a wheelchair, we’d probably be offered a lot more in terms of help and services…but because we come out and we’re still hobbling and walking, you’re going home with a leaflet,” said one. 

Another said: “I don’t think people should be left alone with the emotional impact…the operation is over then you go home, you’re signed off and that’s it, you’re just left with it”

“I found a theme that a lot of patients were going through anxiety and reduced self worth. The process is so quick in hospital, you’re in then you’re out and you don’t have much support afterwards,” says Dr Srikandarajah.

But now with the CESCOS, research which can positively impact future understanding and awareness of CES can be made possible. 

“It’s already been picked up by a multi-centre study in the UK using the Core Outcome Set looking at the different outcomes. The protocol has been put out in the BMJ, using the research we’ve come up with. Another study long-term outcomes using Core Outcome Set is already being used. All of these studies can be put together to make the solid evidence-based guidelines,” says Dr Srikandarajah. 

“We’ve gone through a transparent international process, agreed with patient and healthcare professionals around outcomes, and this will improve consistency of reporting in the future and we can get better evidence-based guidelines.”

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