Risks and benefits of PCI intervention in SCAD

A new study investigating the practice and complications of PCI (invasive angiography and placing of stents) in SCAD patients has been published.

Using data from SCAD patient registries in the UK, Netherlands and Spain, this study, co-written by Dr David Adlam and colleagues on the UK research project, is the largest international observational study of PCI in SCAD. It looked at 215 SCAD patients who had undergone PCI and 221 who had been managed conservatively.

Although conservative management is preferred where possible, some patients may need intervention to reduce the risk of greater heart injury. However, there is a higher risk of complications when PCI is used in SCAD and patients sometimes need longer stents than might be used for atherosclerotic heart disease.

“While a conservative approach to revascularisation is favoured, SCAD cases with higher risk presentations may require PCI. SCAD-PCI is associated with longer stent lengths and a higher risk of complications but leads to overall improvements in coronary flow and good medium-term outcomes in patients,” said the study.

Dr Adlam, Associate Professor of Acute and Interventional Cardiology at University of Leicester & Honorary Consultant Interventional Cardiologist at University Hospitals Leicester and lead SCAD researcher, added: “There are definitely situations were stenting is the right thing to do. We don’t want the pendulum to swing too far in favour of conservative treatment when you have a more serious scenario, greater risk in terms of the heart muscle, and maybe in those cases you should, accepting those extra risks, still intervene in a careful and appropriate fashion.”

Beat SCAD asked Dr Adlam about the significance of this paper and the new chapter on SCAD in the PCI textbook. He said it’s important that clinicians who are reading the guidelines for healthcare professionals (eg NICE guidelines) are aware that SCAD is different in terms of PCI, so it’s important that this information keeps being shared and is available to clinicians dealing with SCAD.

Thanks to everyone who has signed up for and taken part in the research. Dr Adlam said: “A huge thanks to all volunteers – SCAD patients, families and healthy volunteers – because without you we wouldn’t have any of these data to analyse so we couldn’t publish these papers that take us forward with SCAD.”

Beat SCAD would also like to thank all the researchers across the world who continue to search for answers and establish best practice for managing SCAD patients.

Click here to watch Dr Adlam discuss the paper with Trustee Rebecca Breslin. 

 

SCAD patients benefit from creative workshops

When SCAD patient Giedre Calverley decided to run some creative workshops for other SCAD patients, she had a great response.

She told SCAD patients: “The purpose is to have a peer group where we could ‘make sense’ of changes in our lives caused by SCAD in a safe, facilitated creative space. Similar to peer groups in caring professions where people deal with difficult or even traumatic events by mutual reflection and support, this could be a confidential survivors’ group that helps in the same way.”

The idea to run the workshops came to Giedre because “Several months after my first SCAD in November 2018, I took a break from being a consultant psychiatrist in the NHS and started as a fine art student at my local college. Making art has become my main avenue for problem-solving, expression and maintenance of my health and wellbeing,” says Giedre.

“I explore ideas, think and make sense, develop meanings, tell and re-tell stories whilst drawing. I used to play music and sing as an amateur musician but in visual art I get to be a creator myself. It is as invigorating and mind-clearing as going for long walks in nature but with the added benefit of getting things off my chest. Making art takes me to a space where my mind wanders freely and I feel present and alive.”

Having benefited from making art herself, Giedre decided to share her experience with other SCAD patients. The weekly online workshops started in early March and ran for eight weeks. Five SCAD patients joined Giedre for the sessions.

Giedre explains, “Each week we had a different theme and activities to start us off: a warm-up activity and the main activity loosely based on a theme. We looked at making time to care for ourselves, being present and journalling. We explored our connections with others, looked at our strengths, explored our senses with a particular focus on touch (this session was beaming with laughter) and made drawings in response to our favourite text. We shared illustrated recipes of meals that are good for our hearts and took time to dream about our future.”

No previous experience in creating art was needed and during the workshops the group members made collages, painted with watercolour, did charcoal and pencil drawings and played some games with words and associations.

Giedre says, “An open mindset and willingness to learn, try something new and connect with others are much more important than any experience in art.”

Some of the participants said doing these sessions via Zoom meant that they could create in the privacy of their own home, and not feel they had to compare themselves and their art to others. “At the end of each session we discuss our experience in the session but image sharing is entirely optional and some people do not show what they make,” says Giedre.

Having a SCAD can shake your confidence and lead to anxiety and depression, but having a creative outlet can help recovery. One participant, Kay Deadman, said: “Giedre makes you feel so welcome and kept checking that you understood what you were doing but without any pressure to do it any particular way but to do it how you want to. This really challenged me as I had felt I had lost confidence of who I was and what I wanted when I had the SCAD and, at first, thought I wouldn’t be able to think of anything [to draw], but with Giedre’s gentle nature and guidance I was amazed with what I had done. I really enjoyed engaging with the others while doing art and we chatted and talked about our experiences and worries of SCAD, which helped me immensely.”

Giedre asked whether the workshops had improved participants’ confidence and everyone who responded to her feedback survey said their confidence had improved and they felt inspired to carry on creating, which is a great endorsement for the workshops.

Kay said the benefits of the sessions included: “Engaging with others who have experienced SCAD and starting to form friendships through art. There was something special about engaging in the same activity but each creating something totally different.”

Another participant said, “The SCAD stories and others’ advice and experience has been great in helping me deal with my own. The laughing is an additional medicine!”

Improving wellbeing was one of the aims of the workshops and, when asked if participants had seen any change and whether their feelings about SCAD had changed, the answers were extremely positive. “I have more confidence that I will be OK having met some lovely people who are further down the line than I am and are doing great,” said one.

Kay added, “Talking to other people who have experienced SCAD really helped me see that we can get our life back and to not be so scared of the future.”

The group members enjoyed the workshops so much they agreed to continue for another eight weeks and would thoroughly recommend other SCAD patients to take part in future workshops. Lucie Haddon, whose artwork is pictured here, said: “These wonderful sessions have been really beneficial for me. I have loved meeting the other SCAD ladies, including Giedre, and I have rediscovered the creative side of me. We have lots of laughs as well as the more serious conversations about our shared experiences.”

Giedre says she learnt a lot during these sessions. “The biggest and most gratifying experience for me was one of a human spirit – the depth and wisdom, the ability to create, transform, problem solve, draw and evolve meaning, see and create beauty, endure uncertainty, tolerate ambiguity, move forward despite discomfort, reflect and learn, share generously, care about others and laugh together! Each woman in the group brings her unique viewpoint, style, a collection of strengths and experiences yet underneath all the superficial differences beats a warm, brave and vast human heart.”

To see some of Giedre’s art, have a look on Instagram @giedr_art and see @Healing_scad_h_art for some of the art created by the SCAD patient group.

If you’re interested in finding out more, please click here to complete Giedre’s form. If there is enough interest Giedre plans to hold more workshops.

Research update and recently published papers

The research team at Leicester continues to search for answers for SCAD patients. Dr Alice Wood has been looking at men with SCAD and recurrent SCAD and is currently anlaysing her data and writing up her thesis, so we look forward to hearing more about that in due course.

Dr Ania Baranowski is completing validation experiments for her proteomics findings as part of her PhD. This is a study of proteins and looks at blood plasma to identify which proteins are present in SCAD patients’ blood.

Beat SCAD has funded some of Dr Wood and Dr Baranowski’s work, so thanks to all those who have raised money enabling us to support the research.

This year has seen some interesting research papers published, including:

Differential miRNAs in acute spontaneous coronary artery dissection: Pathophysiological insights from a potential biomarker, a collaboration between researchers in Leicester and Spain.

A blood test for SCAD would improve the accuracy (and hopefully speed) of diagnosis and might reduce the need for invasive angiograms in some cases. Dr David Adlam, Associate Professor of Acute and Interventional Cardiology at University of Leicester & Honorary Consultant Interventional Cardiologist at University Hospitals Leicester and lead SCAD researcher, explained: “Working with our Spanish partners we have looked at blood samples taken from patients presenting at the time of SCAD to try to find a blood marker or combination of blood markers which might help provided a diagnostic marker for SCAD. We identify a signatures of tiny fragments of RNA (called micro-RNA) which show reasonably good predictive power in SCAD when compared to non-SCAD heart attacks. This is a very promising start and suggests this kind of approach may be useful. We now need to work hard to collect more samples from acute patients (these are rare and precious samples as most of our blood samples come from patients many months after their SCAD events). We can then validate and optimise this approach.”

Rare loss-of-function mutations of PTGIR are enriched in fibromuscular dysplasia. This paper continues the work in understanding the genetic landscape of SCAD and FMD.

Rare genetic mutations of the PTGIR gene seem to be associated with FMD (Fibromuscular Dysplasia) and in rare cases with SCAD.

Dr Adlam said: “With the gene sequencing work published last year, we are starting to build a clearer understanding that a very small number of patients with SCAD have rare genetic disorders. Most of these are associated with other known conditions (adult polycystic kidney disease, Vascular Ehlers Danlos, Loeys Dietz syndrome). Other patients have a particular combination of common genes which increase their risk of SCAD (and migraine) but reduce their risk of atherosclerotic disease (the common cause of heart attacks).”

You can watch Dr Adlam explain the gene sequencing findings here.

Current progress in clinical, molecular, and genetic aspects of adult fibromuscular dysplasia.

An international working group, including Dr Adlam’s team, have produced this review of what is understood about the underlying causes of FMD. A section on the links with SCAD has been included.

Beat SCAD posters displayed in ambulance station ‘clinical corner’

We love seeing our posters being displayed to raise awareness of SCAD!

Following paramedic training sessions earlier this year (see our stories here and here), some of the South East Coast Ambulance Service stations have put Beat SCAD posters in their ‘clinical corner’ areas to raise awareness among the station’s staff.

Pictured is critical care paramedic John, who is based at Paddock Wood Ambulance Station in The Weald, which covers the area from Maidstone to Tunbridge Wells.

This South East Coast Ambulance Service station has around 180 staff members consisting of Primary Care Specialists, Critical Care Specialists, Paramedics, Emergency Technicians, Emergency Support Staff and Student Paramedics.   

South East Coast Ambulance service covers a geographical area of 3,600 square miles (Brighton & Hove, East Sussex, West Sussex, Kent, Surrey, and North East Hampshire).

Many thanks to everyone who has helped us raise awareness and educate paramedics.

5kMay: Beat SCAD partners with Run for Heroes for new charity challenge

During the first Covid lockdown Run for Heroes created the 5km running challenge asking participants to Run 5, Donate 5, Nominate 5.

After the success of the original fundraiser, which raised more than £7 million for NHS Charities, Run for Heroes is launching its latest challenge by turning the month of May into a celebration of physical activity with their 5kMay campaign – and Beat SCAD supporters can join in to raise money for us.

The idea is to do a 5km (walk, run, swim or roll – it’s up to you!), donate £5 to Beat SCAD and nominate 5 people to do their own 5km challenge and donate to us as well.

You can take part on your own or as a group and we’d love all our supporters to take part to help us fund more research into SCAD.

There’s more info on our JustGiving page where you can sign up between now and the end of April, ready for your 5km challenge during May.