Posts Tagged ‘Rheumatology’

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Comments Off on News update: Research project to determine risk of Corona Virus to rheumatology patient

 

Exciting news about a global research project designed to find out more about the real world risk of Corona Virus infection in rheumatology patients on immunosuppression. It goes live today.

Link to Global Rheumatology Alliance

For information on how the project came together read here.

My patient is a middle aged professional, with no symptoms what so ever.

He is fit and healthy, a non smoker, has good teeth, eats well and has no family history of arthritis or autoimmune disease. So why is he seeing a rheumatologist?

He’s concerned about some results he has received from a genetic screening test. The test results suggest that his risk of developing two autoimmune diseases – rheumatoid arthritis and Scleroderma, conditions I frequently treat, is increased.

I’m at a slight disadvantage as this is the first time I’ve had has to counsel a patient in this situation.

There’s an additional complicating factor. The patient is me.

Eric Topol, in his book, The Creative Destruction of Medicine, describes how genetic health screening will be one of the key drivers of a shift towards personalised medicine. So, a few months back, I signed up to a service provided by the genetic screening company 23andMe, which offered a personalised screening test for $178 (On the request of the FDA, 23andMe no longer offer a health screening service).

Shortly afterwards, a courier collected a small vial of my saliva and then delivered it to a US based lab. 6 weeks later an email arrived with the results.

In arranging for the test to be performed, I broke two of my usual rules as a doctor; don’t try and practice medicine on yourself (I usually outsource my personal medical care to my excellent GP) and don’t request a test where you don’t know what to do with the answer.

I went to medical school and learnt about DNA, RNA and Mendelian inheritance. Through osmosis at medical conferences and by reading the background literature, I have acquired enough genetics knowledge to bluff at a dinner party of non geneticists. But with the exception of ‘need to know’ knowledge (specific to a fairly small number of diseases) my genetics knowledge is fairly limited.

Unfortunately these tests have not yet been validated in a clinical setting so there’s no real guidance for physicians like me trying to interpret these tests; What are the pitfalls and likelihood of a false positive or a false negative test? What is predictive value of a positive test? How reassuring is a negative test and how do these genetic risk factors interact with environmental factors to increase the risk of developing a specific disease like RA or scleroderma?

If I struggle as a doctor to put this information in context, how can I counsel and guide my patient? Until I have some I’m inclined to avoid answering. I’m going to get my patient to come back and see me in a few years’ time.

Further reading
NEJM series on Genomic Medicine
Dr. Robert West’s personalised medicine blog

Anyone who’s been in my office in the last year or so might have noticed two little girls looking down at them from my wall.  

The photo caught my eye at an exhibition by Galway photographer Joe O’Shaughnessy a few years ago so I bought it, not really knowing where to put it.  Recently, in an effort to cheer up my office a bit, I decided to dust it off and hang it on my office wall.

Twins first day at school

It has been a great hit with patients. There’s something about the cheeky, defiant pose of these twins (pictured on their first day at school), that raises a smile in most who notice it. I recognise the flicker of distraction in patients eyes as they register the picture behind me, the pause, smirk and then the questions. ‘Are they your girls?’ they ask. ‘Aren’t they just great!’ ‘Are they twins?’ ‘I’ve seen that look before!’

Truth be told, the time it takes to explain how the picture came to be there, and answer questions about it slows me down and probably contributes to my running behind a little. Nonetheless, its here to stay. People seem to take strength from these two brave girls as they prepare for their journey into the unknown. 

A first visit to a hospital can be intimidating, disorientating, and stressful for patients. Much like our first day at school, it may not be as bad as you think.

 Thanks to Nicole and Rachel Healy and their Mum Mairead for permission to use this picture. Good luck in the Leaving Cert girls.

 

 

 

Although I sometimes flatter myself that patients actually look forward to seeing me for their appointments, the reality is that for most, attending doctor appointments can be a bit of a chore.

Medical appointments themselves don’t take that long but the process of getting there often does. There’s the time off work or childcare to consider, finding a hospital car parking space, or the demands of negotiating a journey with the additional demands of the symptoms of a chronic illness. The consolation of a waiting room which allows unlimited access to vintage copies of Hello magazine or Homes and Gardens isn’t always enough…

Thats why I was fascinated to demo a system that might allow patients to experience the benefits of a medical consultation, from the comfort of their own home or workplace.

facetalk

Facetalk is a new, secure, hi definition video consultation system developed by the Radboud REshape & Innovation Center the Netherlands. The Facetalk tagline is  ‘Your Virtual Consultation Room’. 

Lucien Engelen, the director of the centre showed me how it worked.

Our ‘appointment’ took place during the evening when I was at home and Lucien (whom I expect works longer hours than most doctors) was still at work. The email invitation I received to the appointment included a link which prompted me to download a piece of software to my iPad (the platform can be viewed on PC, Mac, iPad, iPhone and Android).

Once installed (pausing only briefly to settle an argument between two of my kids and put the rubbish out), I was then ready to ‘attend’.

And there was Lucien. All three of him. In order to show me how easy it was to have a number of people connected simultaneously, Lucien had connected toFacetalk using three devices simultaneously;  his PC, iPadmini and iPhone. Lucien, as the “doctor” in the consultation, was able to share his desktop with me show me xray, clinical images or videos (in hi definition). He explained how up to 10 people can attend a meeting simultaneously (eg a patient, attendee of their choice, GP, Hospital doctor physiotherapist etc). A hard feat to pull off in real life in a busy outpatient clinic.

foto

I was able to attend my meeting with Lucien from my office but also – because I was using a tablet device –  from my kitchen or even (theoretically, but lets not go there) my downstairs toilet.

Facetalk has already been piloted to facilitate a diagnosis of skin cancer, out patient neurology appointments,  paediatric urology consultations, palliative care consultations, TPN prescribing and and cleft palate.

The advantages of Facetalk are, according to Lucien, that it is secure (neither Skype nor Google Hangouts are secure for Healthcare use), doesn’t require any fancy hardware, works on all systems (except Blackberry), and that is does not require Flash (use of Flash video can pose additional security issues – not to mention, viewing problems on Apple mobile devices). Facetalk has also incorporated a workflow solution for healthcare without the additional hassle of security codes and does not require registration at the patients’ end.

It works over a regular home broadband connection and also works over 3G connections (think ‘Youtube’ over 3G).

I think it is likely that Facetalk will also add value for doctors. It will allow us to collaborate with specialists without the need for travel, might reduce the amount of time necessary for a consultation, and potentially reduce the need for office space and secretarial staff where there are less patients are physically present.

I’m decided to offer it to a group of my patients who are interested in using it in place of their regular appointment. I feel its probably going to lend itself better to patients who I know reasonably well, who have conditions where perhaps a thorough physical examination may not be necessary on every visit; eg Ankylosing Spondylitis, stable psoriatic arthritis or fibromyalgia. I’ll let you know how I get on.

Would anyone like to buy some old copies of Hello magazine?

 

I was a junior doctor when I experienced my first episode. The strange thing is, that despite my medical training (I may have bunked off a few of the relevant lectures in medical school), I didn’t recognise the symptoms.

I had lost my appetite and had lost weight.  I wasn’t sleeping and was irritable, angry and tired most of the time. Most disturbing to me was a feeling (despite being surrounded by work colleagues and friends most of the time) was that I felt emotionally cut off and removed from people. I had also become cynical and decidedly detached from my work responsibilities and, truth be told, had lost all empathy with my patients. Not a good combination for someone working in healthcare.

It took a conversation over coffee with a good friend of mine who is a psychiatrist to make me realise that I was depressed.

Although of course it is obvious to me in retrospect, I had no idea I was depressed at the time. Like many people, I had no clear sense of my mood on a day to day basis. Like most other doctors I just kept on going.

For the last 20 years, I’ve been on the receiving end of medical care from GP’s, psychiatrists and psychologists.  I’ve learnt a lot about mental illness, its treatment and how to look after myself better.

I have also learned a lot about the stigma of mental illness in medicine and how to cope with it. Largely, it has to be said, by keeping quiet about it.

Mental illness is, for many affected doctors, a shameful secret. One that can affect how other doctors perceive your reliability as a clinician and also one which could affect your career.   To admit to not coping in medicine is to be weak, to somehow let your community down, and to go against the macho code of invincibility that we have imposed on ourselves.

What’s ironic about the code of silence is that a significant proportion of doctors have experienced mental health problems. Up to a quarter of doctors will meet the criteria for a depressive illness by the end of their first year in training and other studies suggest that up to 51% of (female) doctors have a lifetime history of depression. Substance and alcohol abuse are common, burnout is common and suicide rates are higher than in other professions. Medicine is not as glamorous as it sounds.

At present, thanks to the medical care and advice I’ve received and the support of family I’m doing well. Most of the time. I’m more mindful of my own moods and more forgiving of myself when I make mistakes. I recognise the warning signs of an imminent crash and feel better equipped to deal with the symptoms when they come. I have learned to say no (and not feel guilty about it) and also to give myself the odd pat on the back and remind myself that I’m doing some good.

However awful I sometimes feel, I know that it will pass eventually. I also know, that on my worst day, I’m still a conscienscious and caring physician.

I also firmly believe that my experience of dealing with depression has made me a better doctor; It has helped me understand the healthcare system from a patient’s perspective and also helped me empathise more deeply with patients (as another patient) and to be a more compassionate.

It has made me much more attuned to psychiatric symptoms in my patients (even when may not be aware of them themselves) and to develop a language that allows me to engage them in discussions about their mental health in a non-threatening way. Although I have a better understanding of how an illness like depression can colour and skew patient perceptions of certain physical symptoms, I think I am also less likely to over-diagnose psychiatric illness in a patient who’s symptoms don’t easily fit into a neat medical model.

There. I’ve said  it. Whats your story?

My father loves to attend the Cheltenham horse racing festival every year. The meeting, which is one of the biggest on the horse racing calendar is a celebration of Irish Horse racing that takes place in the UK and draws a crowd of over 200,000.

As he has got older, the hectic pace of the meeting, the queues for the toilets and the physical toll of socialising have become too much for him. So he now attends the festival virtually, from the comfort of his sitting room  – watching it on TV with a few friends at home. He gets to sleep in his own bed, places his bets on the phone and the queue for the toilets is a lot shorter. My mother also ensures that the facilities are better maintained.

We refer to it as ‘Cheltenham in Galway’

This year I’ve decided to do something similar for our big Annual Specialty Meeting as I have decided not travel to Washington. I’m going to do the ‘ACR in Galway’.

Although my main reason for not attending this year relates to work commitments, I’m beginning to wonder about the value of attending the big blockbuster medical meetings in general. There’s too much information (poorly filtered), so many delegates that the social value of the meeting has become diluted, and as I get older I’m less well able to handle jet lag.

Either way, this year I’ll be attending the ACR virtually, in my dressing gown, from the comfort of my home office. I’ll be dipping in and out of the meeting during the day, after the kids have gone to bed in the evening and before I go to work.

I have a copy of the abstract book on my desktop, I have set up a list of all the rheumatologists I know who will be tweeting, following the hashtag for the meeting (#ACR2012) and will be looking at RSS feeds from trade press so I don’t miss anything.

Of course I’ll miss the annual review course, I won’t hear hear experts drill down into their subspecialty areas or meet my rheumatology friends face to face. However, I’m unlikely to miss any of the big news of the meeting. If I’m so inclined, videos of most of the important presentations will be available for review online after the meeting.

Although it is not the same as attending a meeting in person, I’m beginning to get a taste for what it might be like to attend a meeting virtually. Imagine it – less time off work, less cost, no flights, jet lag and all from the comfort of your home / office.

That’s why I was fascinated to see that our colleagues in radiology have been allowing delegates, for a registration fee of $300, to attend the RSNA meeting virtually this year. They offer access to 40 live streaming courses, allow delegates to participate in ‘Cases of the day’ and earn up to 78.5 CME credits.

Here’s hoping that other meeting organisers take note…

 

Keeping my patients well educated and uptodate with everything they need to know about their illness is a very important part of my practice. Knowledgeable patients do better on treatment, are less anxious about their illness, and tend to he happier overall in my experience. Having content, well informed patients in my practice also means I tend to get home a bit earlier in the evening. That’s good too.

I have been lucky enough to be working with a new healthcare company called Clear.md over the last few months who have provided a platform which allows health care professionals to record and display medical educational video content online. I believe that this platform will be the new Youtube for reliable, Doctor provided healthcare information.

 

 

 

 

 

 

 

I have recorded 33 video’s to date (with many more to come) all of which address specific questions about rheumatic disease which are asked of me every day of the week. They’re mercifully short (most less than 60 seconds) and I hope that you find them helpful.

You will notice that there is a ‘Vidscription’ section (ie a Video ‘prescription’) on the site where I have grouped videos on a certain topic together. For example, where I start a patient on a drug like Methotrexate, I will be able to email them a link to a collection of videos all about the drug.

In time, I hope to put all of the information I provide to patients online on this platform.

Over the coming weeks, I shall be doing lots of recording and am seeking suggestions on questions all of you would like answered. Please feel free to post them in the comments box below.

In my first few months working as a rheumatologist a referral letter arrived from a local doctor about a lady with rheumatoid arthritis. She had recently moved to the West of Ireland from the UK, where her original diagnosis had been made. Her GP had originally referred her to a general physician in a small local hospital who had struggled with her care and she was looking for second opinion.

After assessing her, it quickly became apparent that original diagnosis had been incorrect. The patient had numerous explanations for her pain other than rheumatoid arthritis and the investigation that was likely to have prompted her original diagnosis (a positive rheumatoid factor test) as due to the fact that she had Sjogren’s syndrome (a condition which causes dryness of the eyes and mouth). 

My specialist pride congratulated itself on making such a clever diagnosis and for being smarter than either the physician who had cared for her of late or the rheumatologist who had made the original diagnosis. Gosh I’m good, I thought.

‘That’s wonderful news Doctor. You mean I don’t have rheumatoid arthritis after all?’

‘Not in my opinion you don’t.’

‘Its great to see someone who knows what he’s talking about. Do you mind me asking where you did your training?’

‘In the UK. In Cambridge mainly.’

‘Really Doctor? In Addenbrooke’s?’

‘I was there for 4 years.’

‘That’s amazing. That’s where I was told I had rheumatoid.’

With that she thanked me, stood up to leave, and just before she left the room, turned to me and said;

‘I knew you looked familiar.’

It’s never a bad idea to get a second opinion. Even if it’s from your self.

Here’s a TED talk by Dr. Brian Goldman, who’s an Emergency room physician from Toronto speaking about medical errors.

 

Rheumatology healthcare professionals need a Twitter Hashtag to assist in the education of specialists through the the exchange of clinical and practical information relevant to rheumatology.

It is my intention that the Hashtag, #rheumedu will be used predominantly by healthcare professionals involved in the care of patients with musculoskeletal problems (but of course anyone who is genuinely interested is welcome to post or comment).

Whereas there are a number of useful disease specific hashtags being used by healthcare professionals and patients alike, I feel rheumatologists need a forum with a focus on the exchange of information relating to the practice of our specialty. This will involve the sharing of clinically relevant papers, educational resources, clinical anecdotes, practice management tips or physician requests for information from their colleagues.

I deliberately haven’t limited chats to a specific time. Feel free to post at any time of the day or night.

I would be really grateful if all rheumatologists or other healthcare professionals involved in the rheumatic disease would consider using the hashtag when posting information that they feel will be of interest to their peers.

Thanks to Andrew Spong for the name suggestion.