Research

Leave a comment Posted on September 4, 2014 Autism, Research

Autism and Anxiety : “An Investigation of Anxiety in Children and Adolescents with Autism Spectrum Disorder” – The results of recent research from The Irish Centre for Autism and Neurodevelopmental Research h

Irish Centre for Autism and Neurodevelopmental Research

You may remember that a few months ago (May 2014) we invited you to take part in a survey about autism and anxiety from The Irish Centre for Autism and Neurodevelopmental Research.

Today we are delighted to present the top line findings.

If you have any comments or questions please feel free to use the comment boxes at the bottom of this blog.

This study looked at the prevalence of symptoms.

• 10% of participants were found to have borderline clinical anxiety levels, while 75% of participants obtained scores which placed them in the clinical range for anxiety. This finding is particularly interesting as a diagnosis of an anxiety disorder was reported for only 25% of the sample.
• Gastrointestinal (GI) symptoms (i.e. nausea, bloating, diarrhoea, constipation, abdominal pain) were experienced by 80% of the sample within the last three months.
• Sleep problems were reported by 92% of the sample.
• At least one form of challenging behaviour (self-injurious behaviour, aggressive/destructive behaviour, stereotypic behaviour) was reported for 90% of the sample.

This study investigated the relationships between anxiety and other symptoms.

• Anxiety was found to be related to overall GI symptoms, indicating that higher levels of anxiety are associated with higher levels of GI issues. Specifically, nausea and constipation were found to be correlated with anxiety in this sample.
• Anxiety was found to be related to sleep problems, indicating that higher levels of anxiety are associated with higher levels of sleep problems in children and adolescents with ASD. Specifically, sleep onset delay, sleep duration, sleep anxiety, parasomnias, and daytime sleepiness were found to be correlated with anxiety levels in this sample.
• This study did not find an association between anxiety and challenging behaviour.

This study was also interested in looking at the factors which predicted anxiety.

• Sleep problems were found to positively predict anxiety in the current study. This means that high levels of sleep problems predict that an individual will also experience high levels of anxiety.
• Age was found to be a significant positive predictor of anxiety. This suggests that young people with ASD experience an increase in anxiety levels as they grow older.

Leave a comment Posted on August 29, 2014 Cardiovascular disease, Patient Talk, Research

Healthcare, Social Media and People Power – How patients are helping to find a cure for a rare heart condition called Spontaneous Coronary Artery Dissection (SCAD)

Healthcare and social media

Rebecca Breslin, 36, from Melton Mowbray in Leicestershire, was struck down in March 2012 by spontaneous coronary artery dissection (SCAD) – a condition that results from an abnormality in the coronary artery causing the lining of the wall to tear resulting in a heart attack. Despite her diagnosis, her condition is so rare that cardiologists were unable to answer many of her questions and so she took to the internet to find more information.

She discovered just one research project in the world into the condition run by the Mayo Clinic in Massachusetts, USA.

As part of the US study, the research team were trying to establish a virtual registry of SCAD patients. Keen to share her case, Rebecca joined this registry but also saw the potential for other researchers to collaborate with this study, so she also began searching for other British female patients with the hope of establishing a project here in the UK.

Thanks to her efforts in identifying more than 100 patients from the UK, and a further 80 internationally, a grant from the British Heart Foundation (BHF) is now funding a two year study into the condition. The study will be undertaken by a team of researchers at the NIHR Leicester Cardiovascular Biomedical Research Unit, part of the University of Leicester, based at Glenfield Hospital.

Rebecca said: “This is a great example of people power. SCAD is a devastating condition; some sufferers have been left with heart failure and in other cases, sadly it’s proven fatal. We need answers as to why this happens to people and we hope this project will deliver on that. I’m delighted that we as patients have been able to get this off the ground.”

Dr David Adlam, cardiologist at Leicester’s Hospitals and lead researcher for the project, added: “This situation is unique. We usually struggle to find patients for our studies but this is a highly motivated group of patients who are understandably committed to finding out why this has happened to them and what it means for them and other people in the future.

“What we currently know about SCAD is largely anecdotal. The grant from the BHF will allow us to provide information based on solid science to the medical community and patients, improving diagnosis and management of the condition for patients in the future.”

SCAD is known to affect mostly women and in the majority of cases occurs in women under 50 who are otherwise healthy. In a significant number of cases, the condition occurs around the time of pregnancy or recently after giving birth.

Senior Cardiac Nurse at the BHF, Maureen Talbot explains: “Thankfully this condition is rare. But it can have devastating consequences – particularly in younger women who’ve probably never thought about their heart health before. We hope this research will help to understand this condition better, so we can develop better treatments for it and perhaps even prevent it in the first place.

“In the meantime, if you’re a woman and you’re worried or curious about your heart health, you can visit our Women’s Room – a dedicated online hub full of practical information and where you can talk to other women, just like you. Just visit www.bhf.org.uk/women.”

Patients with this condition can also register their interest in the research program on the SCAD-UK/EU website http://scad.lcbru.le.ac.uk/ or visit http://www.bhf.org.uk/publications/view-publication.aspx?ps=1002532 for further information on SCAD.

1 Comment Posted on August 28, 2014February 13, 2017 Fibromyalgia, Mental health, Multiple Sclerosis, Patient Talk, Research, Rheumatoid arthritis

Do you suffer from depression as a result of another medical condition?

Stephen Fry on Depression

This morning on the news there were an interesting set of reports about a recent report which suggests many people with cancer do not get proper treatment if they develop depression.

Indeed it goes on to suggest depression is highly correlated with a diagnosis of cancer.

I found this very interesting as I know from my own family’s experience. Indeed my grandmother who suffered for many years with rheumatoid arthritis. Of course, in those days, few people saw a relationship between the two.

These days it is different. I know from anecdotal evidence from my years in healthcare research that people with say fibromyalgia or multiple sclerosis may often develop depression.

On the other had with the current popularity of the ALS (motor neurone disease) ice bucket challenges it reminded me that I was told by an ALS research that there was much more chance of depression affecting the caregiver than the person with MND.

So I am really interested in the very simple question “Do you suffer from depression as a result of another medical condition?”. It would be great if you could take the poll below to share your answers. I have included some responses for caregivers as well.

Please feel free to share your story in the comments section below!

Many thanks in advance.

Leave a comment Posted on July 4, 2014 Patient Talk, Research

Do you have UV protection in your glasses? Check out this post to find out why you need it!

UV radiation protection in glasses

Of course, the effects of Ultraviolet radiation (UV) exposure to skin are now widely known, however the risks of UV exposure to eyesight are not as well known, with research suggesting just 10% of the respondents are aware that UV increases the risk of eye damage. The study suggests one in ten didn’t know that eyes are up to 10 times more sensitive to UV damage than skin.

According to the World Health Organisation (WHO) , UV damage is the most preventable factor of developing cataracts. Exposure to the sun’s UV rays also increases your risk of age-related macular degeneration (AMD) – the UK’s leading cause of blindness.

In past days many opted not to pay extra for UV protection when buying prescription glasses for themselves and their children. Children are particularly susceptible when it comes to UV. Evidence suggests up to 70% more light reaches a child’s retina than an adult’s and that 80% of a person’s lifetime exposure to UV eye damage happens before the age of 18.

Robert MacLaren at Professor of Ophthalmology, Oxford University comments: “Ultraviolet rays are absorbed at the front of the eye and can cause damage to the surface of the eye leading to irritation and redness. This damage may become permanent after years of exposure to ultra violet light – leading to cataracts or age related macular degeneration. Protection from UV in your everyday glasses gives you the best opportunity to avoid eye health issues in the future. It’s encouraging to see this initiative to improve eye health and I hope other opticians will follow suit.”

Do you have UV protection in your glasses? Please share in the comments box below!

Leave a comment Posted on June 30, 2014 Arthritis, autoimmune conditions, Patient Talk, Research

Are Psoriasis Patients being failed by healthcare providers? Find out more in our interview with Dr Anthony Bewley

New data just released today show that huge numbers of people with psoriasis

Psoriasis

are being managed with repeat prescriptions and are not going to see their GP to discuss their treatment. Not accessing the best advice and treatment could leave these patients on out-of-date treatment regimens, and potentially at risk of long-term health problems,² frustration, stress and unhappiness.³

Half of the psoriasis patients questioned were on a repeat prescription,³ locking them into a cycle of poor disease management.When asked about their repeat prescriptions, almost one third of patients felt at a disadvantage because they felt they had less opportunity to speak with their GP or try other treatment options to help them manage better.¹

Psoriasis is a common condition affecting 1.8 million people in the UK.⁴ More than just a dry skin condition, psoriasis is a chronic immune disease that affects patients over a number of years, sometimes from childhood.⁵ Psoriasis is associated with an increased chance of developing other serious conditions such as psoriatic arthritis, heart disease, high blood pressure, diabetes and some cancers.^2,5,6,7 The condition can also have a significant physical, psychological and social impact on sufferers, and can limit their work opportunities and income.⁸

The significant burden of the condition, its health risks, and the associated discrimination experienced by patients have recently (May 2014) been recognised by the World Health Organization in the form of a historic resolution on psoriasis. The resolution aims to combat the stigma attached to psoriasis, improve disease information and improve patient access to care.⁹

Psoriasis 2

The Psoriasis: Think Twice campaign was created to address the significant patient need and is supported by a Working Group of experts in the field of psoriasis care. The Working Group contains patients and healthcare professionals, including a Clinical Psychologist, Pharmacist, GP, Medicines Manager and Consultant Dermatologist, as well as a representative of the British Dermatological Nursing Group and the Primary Care Dermatology Society.

As well as a massive impact on a patient’s well being and quality of life, poorly managed psoriasis also has huge financial implications. A LEO Pharma survey showed that 80% of people with psoriasis buy over-the-counter products as well as their prescription to try and improve their symptoms.¹⁰ In addition to the burden faced by patients, poor control of chronic conditions such as psoriasis also costs the NHS an estimated £500 million per year in resulting complications and additional medical interventions.¹¹

Championed by psoriasis patient Jessica Gough, Psoriasis: Think Twice equips people with psoriasis with the tools and information they need to talk to their doctor about the physical and psychological impact of their condition. Psoriasis: Think Twice will help patients think twice about what they can be doing differently, and how they can access the benefits of a review – allowing them to take ownership of their care.

PatientTalk.Org have interviewed Dr Anthony Bewley to created a Psoriasis FAQ. Dr Anthony Bewley is Dermatology Consultant with a special interest in Psoriasis.

What is psoriasis?

Psoriasis is a largely genetic condition. You’re born with the likelihood to get psoriasis and then certain things can trigger it, like stress or even something like a sore throat.
What causes it?

We don’t really know what causes psoriasis. We know it’s a complex interaction between skin and the nerves in the skin and the immune system in the skin. And that’s why people who get psoriasis often find that stressful life events seem to trigger the psoriasis.

How can it be treated and with what kind of success?

The aim of treatment is to get the patient as clear as we possibly can. We know that we can’t

Psoriasis 3

cure psoriasis because it’s a genetic condition but the aim is to get the patient as cleared as they want to be and usually we can get the patient completely cleared of their psoriasis. The treatment that we have available for psoriasis we try and tailor to the needs and the lifestyle of the patient. That can include creams, photo-therapy, which is ultra violet light treatment, or tablets or injections. What we know is that there’s lots of new things that appear regularly that we can treat our patients with, so there are always advances in the management of psoriasis.

What impact does is have on lifestyle?

We know that living with psoriasis matters hugely for our patients. It really affects their self-esteem and their confidence. Some patients feel depressed or anxious – or both – when they get psoriasis and unfortunately some people feel so isolated and fed up with it that they consider suicide.

Is the current provision adequate to meet the patients’ real needs?

We always think as healthcare professionals that we can do more. And that is certainly the case. All too often I have patients who tell me they’ve been to see a healthcare professional and they’ve been told it’s just psoriasis, it’s only your skin. And I think that’s unacceptable. We’ve got lots to learn from our patients, and I think that things are being done to improve the care of patients who have psoriasis. There are newer treatments being made available every year and greater ways of supporting patients who have psoriasis.

How well trained are HCPs and what is the quality of the support they provide?

Healthcare professionals are aware of psoriasis but the training in primary care, in management of skin disease is not very good. The training that you get in medical school and after medical school in the management of dermatological conditions is not particularly great. That’s being addressed by organisations such as my own – The British Association of Dermatologists – but even then there is lots to learn from healthcare professionals about how to manage patients with psoriasis.

Why are patients being failed so badly?

I don’t think patients are being failed necessarily. It’s just that are things that we can do better and there are things that we can do more of. My message to patients who live with their psoriasis is first of all, don’t suffer in silence; access healthcare professionals. There are things that can be done for your psoriasis.

What other forms of support are available for healthcare professionals and patients?

What healthcare professionals need to do is to first of all make sure they are trained in how to look after patients with psoriasis. And there are training modules that you can access as a healthcare professional, either through post-graduate centres or online. Psoriasis patients can access support group information from organisations such as the Psoriasis Association and there is also a new website that myself and a group of people, with the help of LEO Pharma, have generated which is called www.psoriasisthinktwice.co.uk where the aim is to try and empower patients so that they can get the most from their consultations with their GP.

About psoriasis

Psoriasis is a common condition that affects between 2% and 3% of the UK population, or 1.8 million people. Psoriasis affects males and females equally and can affect a person at any stage of their life. Psoriasis is an immune condition, which causes symptoms on the skin and sometimes the joints. More specifically, it is the build up of skin cells which form raised ‘plaques’ on the skin causing flaky, scaly, itchy patches.^4,5

Psoriasis: Think Twice surveys

Two surveys were conducted to generate the Psoriasis: Think Twice data. A survey of 2,067 members of the general public investigated personal attitudes towards medicines usage and repeat prescribing, while a survey of 501 adult psoriasis patients addressed specifics regarding the management of their condition. All 501 psoriasis patients interviewed were being treated by a GP and currently receiving a topical treatment. The sample size was identified and validated by an independent market research company as a robust sample based on the total number of people with psoriasis in the UK.

Key survey findings:^1,3

1/3 of psoriasis patients haven’t had treatment reviewed for at least five years
1/2 of psoriasis patients are on a repeat prescription
Almost 60% of psoriasis patients on a repeat prescription felt at a disadvantage
Only just over 1 in 10 patients have their treatment reviewed by their GP when they need a new prescription

Psoriasis: Think Twice Working Group

Psoriasis: Think Twice was developed with the support of a range of experts involved in helping people with psoriasis, including a dermatologist, pharmacist, nurse and GP. By working with representatives from groups such as the the British Dermatological Nursing Group and the Primary Care Dermatology Society, Psoriasis: Think Twice will equip patients with the tools and information they need to take control of their disease.

QualityCare^TM

In addition to Psoriasis: Think Twice, LEO Pharma has developed The QualityCare^TM Psoriasis Patient Support Services, a free, multi-channel programme designed to help people with psoriasis to play an active role in managing their condition, regardless of whatever treatment they are using, and in collaboration with their health care professionals.

Individuals using the QualityCare^TMPsoriasis Patient Support Services receive personalised support via a range of different channels, including online, text messages, and emails. Personal profile data are processed by an electronic system and the support content is tailored to the individual. When an individual’s profile changes, so does the support.

WHO Resolution on Psoriasis

For more information visit: www.ifpa-pso.org

References:

Opinion Matters Survey, Patients with Psoriasis Receiving a Repeat Prescription, LEO Pharma data on file, May 2014
Ahlehoff O, Gislason GH, Charlot M, et al. Psoriasis is associated with clinically significant cardiovascular risk: a Danish nationwide cohort study. J Intern Med. 2011;270(2):147-157
Opinion Matters Survey, Patients with Psoriasis, LEO Pharma data on file, May 2014
The Psoriasis Association. (2012). About Psoriasis. Available: https://www.psoriasis-association.org.uk/. Last accessed 02 May 2014
Schön MP, Henning Boehncke W. Psoriasis N Engl J Med 2005; 352(18): 1899-912
6. Pouplard C, Brenaut E, Horreau C et al. Risk of cancer in psoriasis: a systematic review and meta-analysis of epidemiological studies. J Eur Acad Dermatol Venereol 2013; 27(Suppl. 3): 36–46
Pariser DM, Bagel J, et al (2007). National Psoriasis Foundation clinical consensus on disease severity. Arch Dermatol; (143), 239-42.
D Butler, R Gupta, E Levin, M Huynh, A Leon, J Koo. (2013). Psoriasis and quality of life. Hong Kong J. Dermatol. Venereol. . 21 (1), 64-68
1. UK Burden of Psoriasis and Treatment Survey, LEO Pharma data on file, July 2011
2. Trueman, P., Taylor, D.G et al (2010). Evaluation of the scale causes and costs of waste medicines. Report of DH funded national project. York: 1. York Health Economics Consortium

Images are published with the permission from the New Zealand Dermatological Society Incorporated (or dermnetnz.org).