Archive for 2012 | Yearly archive page
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.
1. Ankylosing Spondylitis (AS) was first described by an Irish man
Kerry physician, Bernard Connor first described the condition in 1693 in a skeleton from a church graveyard. If you look carefully at the above illustration from that skeleton you can see how the spine is fused.
2. It takes an average of 8 years to diagnose it.
Many patients will attend a large number of doctors, physical therapists and other healthcare professionals before getting a diagnosis (for reasons why, see below).
3. Blood tests can be normal
The blood tests which are traditionally used in the diagnosis of other forms of inflammatory arthritis, the ESR and CRP tests, are normal in up to 50% of patients.
The HLA B-27 genetic test can be positive in up to 90% of patients. Sound good? Unfortunately 8% of healthy adults (without AS) have a positive test as well. This means if you test 100 people with low back pain unrelated to AS, at least 8 of them would have a positive test. The test needs to be used carefully and interpreted in the light of other features of the disease.
4. MRI scans can miss it too.
Left Sided Sacroillitis on MRI
Although MRI is probably the most reliable test for making a diagnosis, its important to scan the correct body part. An MRI of the sacroiliac joints (the joints where the spine jomeets the pelvis) is abnormal in 70% of patients with established AS. MRI of the rest of the spine scan can show signs of AS in the 25-30% of patients with AS who have normal MRI’s of their sacroiliac joints. The sensitivity of the test is improved where the scans are looked at by a radiologist who has an interest in arthritis related conditions.
5. Can cause chest pain
In addition to causing inflammation of the spine itself, AS can cause inflammation of lots of other structures e.g. the ribs and their attachments (aka ‘costochondritis’)
6. Can cause sore heels
In addition to causing spinal inflammation, AS causes ‘enthesitis’. Enthesitis is a form of inflammation of where ligaments and tendons attach to bone. It can cause inflammation at the attachment of the plantar fascia (a ligament in the sole of the foot) – plantar fasciitis. It can also cause inflammation of the achilles tendon - Achilles tendonitis.
7. Can cause sore eyes
AS can be associated with an acute inflammation of the eye (uveitis) in up to 25% of patients. This will typically cause an eye that is red AND painful and needs to be treated urgently. If you have AS and an acutely painful red eye, you should be assessed by an ophthalmologist.
8. It is very treatable
For some patients with years of chronic low back pain it can be a relief to get a diagnosis of a condition like AS which is very treatable. Until about 10 years ago, the treatment of AS revolved around anti-inflammatory medications and physiotherapy (this still sufficient for some patients). In the last few years the development of biologic therapies (Enbrel, Humira, Remicade, Simponi) has resulted in dramatic relief from the symptoms of Ankylosing spondylitis for many patients. There are subtle differences between the drugs (not every drug works for every patient) but as whole they tend to be very effective.
What is it like to Have Gout?
Gout, for anyone has experienced it, is one of the most painful joint conditions that you can get. It typically causes intense pain, swelling, and redness in joints – usually lasting a few days at a time. This is often in the big toe but also can affect the in-step, the ankle and the knee (its more common in the lower limbs) but it can also affect fingers, wrists and elbows. In its early stages, it can be difficult to diagnose and sufferers sometimes think they have sprained an ankle or they have done themselves some sort of injury.
What Triggers attacks of Gout?
Typical triggers include alcohol binges, dehydration, acute infections, joint injury and for some people, certain kinds of foods. There is no hard and fast rule regarding which foods trigger attacks (it varies from person to person) but some meals very rich in protein (including meat and shellfish) can trigger attacks in certain people. There is no evidence though that ‘purine rich’ vegetables such as peas, beans, mushrooms, cauliflower spinach increase the risk of attacks.
Later in the course of the disease, attacks can come on spontaneously.
What Causes Gout?
Gout itself is due to the accumulation of very, very small needle shape crystals within joints called Uric acid crystals. Everybody makes uric acid themselves but normally excrete the uric acid in the urine. Most people who have Gout tend to excrete uric acid less efficiently so it tends to accumulate and, when its reaches a certain concentration, it forms crystals.
Over time, uric acid can build in the joints and form hard lumps under the skin called tophi (around the elbows for example).
In addition to being associated with obesity, Gout occurs more frequently in patients with Diabetes certain types of lipid problems, kidney failure and with certain medications (diuretics and low dose aspirin can cause problems for some patients). All those who develop gout should be screened for these conditions.
Treatments for Gout are broken down into two broad categories. The first is what we use for in acute attacks and the second group is really what we use to prevent attacks coming up.
Treating Acute Gout
Most patients who have Gout in it’s early stages get attacks once in a while (for example affecting a big toe or an instep) and the trick is to prescribe an anti-inflammatory medication (for example Diclofenac or Naproxen) as early as possible to settle down an acute attack. These usually lasts for a few days, so five to seven days of anti-inflammatory is enough for most people.
Most patients with Gout in it’s early stages will get an attack maybe once a year or once every two years. But in some patients it can become more frequent than that.
Some patients can’t take anti-inflammatory medications as they can upset their stomach (they also need to be avoided in patients with kidney failure or those on warfarin). An alternative is a drug called Colchicine and doctors sometimes use steroids (which are particularly effective). These can be given as tablets, intramuscular injection occasionally by injection directly into a painful joint (not as painful as it sounds).
Keeping a stash of anti-inflammatories in the bathroom cabinet
I tend to give patients back up prescriptions for anti-inflammatories to keep in their bathroom cabinet as attacks sometimes come on at night.
Most patients who have experienced Gout get very good at sensing attacks in their early stages and take their anti-inflammatory quickly to abort an attack. There is also some evidence that if you drink lots of water that you can abort an attack in about 20% of the time (but most patients, in my experience, need some medications to help)
Preventing Gout
For patients who are getting very frequent attacks, we tend to use preventative treatments. There is no hard an fast rule for when to start these except to say, that most people who have more than a couple of attacks a year, or where attacks drag on for weeks at a time, will be keen to consider prevention. And this effectively means taking something everyday for the rest of your life to prevent these attacks.
Typically we use a drug called Allopurinol which is designed to reduce the amount of uric acid in a blood strain and in turn the amount of uric acid which is in your joints, which in turn causes the Gout. It reduces the amount of uric acid that your own body makes and tends to do so fairly effectively depending on the dosage that is used. And where Allopurinol doesn’t work, it’s quite often because the dosage that’s used isn’t high enough.
Gout may initially get worse with treatment
A word of warning, when we start patients off on a drug like Allopurinol the joints can get a little bit worse initially and we would normally try prevent this happening by prescribing along with the Allopurinol an anti-inflammatory or possibly a drug called Corticosteroids for the first month to six weeks. But it is important though when you start Allopurinol and if you do get an attack within those first few weeks that you stick with the Allopurinol and rheumatologist or family doctor to treat the acute attack of Gout.
The Allopurinol can be very effective use in the correct tools, what we tend to do is increase the dosage until we get your uric acid to low level where the uric acid is unlikely to crystallize in your joints and this can take a few months. For patients who are in tolerant of Allopurinol for example very, very occasionally we see patients who have allergies to it, we can use a drug called Febuxostat which can be very effective as well.
I’m delighted to introduce my first guest blog from a patient.
She articulates very well the challenges of finding reliable and relevant online information and communities that are directly relevant to patients. It also includes a call to action for Doctors to get online.
Generic versus (very) personal information
Personally.. I don’t want to be a patient.. It’s totally the last thing I want to be…Before my diagnosis I shamefully has no idea what Rheumatoid arthritis (RA) was or what the consequences were of having a Chronic Illness. As I say to my Rheum..”Being Chronically Ill is a busy business”.
Interestingly, at diagnosis I was told by my rheum NOT to look on the internet for information because it would scare me half to death, whilst GP gave me a list of websites that she felt would help, in particular NRAS, Arthritis org.ETC..
Actually went with my Rheum, and didn’t investigate my condition and just had total faith in the fact that He/She totally knew what she was doing..
Unfortunately humans need answers immediately..even more so if your ill.. So where do we go? And how do we know if the information is correct? Most official sites offer information that is so generic that it doesn’t take into account the personal aspect of how Chronic Illnesses affects your day to day existence.
However personal blogs ( or the most part) are just that..Personal..offering information about that individual..and how that individual deals with their own Illness. There may be some similarities but not enough to give you the answers you were looking for.
Patients Like Me
The Patients Like Me Website is a great idea in theory, but the execution is poor..and visually it kinda looks like a dating website for the sick !!
Its essentially focuses on length of illness,meds etc..You are reduced to being, well, just a Patient and it has been know to be a breeding ground for pity parties.IMO.
Information from strangers can be a bad thing, just because we have the same diagnosis,and take same meds doesn’t mean our outcomes will be the same.
NRAS (UK National Rheumatoid Arthritis Society) do something similar called Healthunlocked, which I’m sure your familiar with..I was staggered at the mis-information and wrong advice that was given out, with no moderator.
Maybe sites like this could work in the future? But only if a crack team of medical personnel were involved to stop us brain fogged patients from dishing out the wrong info.
So why do we flock to Facebook and Twitter..?
If I’m making a decision about my wellbeing or changing Meds, I would normally call my Rheum Nurse, but its Saturday 7.30pm and I want reassurance that upping my MTX is not going to make me feel like a poisoned parrot and side effects will pass..
On Twitter and Facebook, and on other social networking sites the beauty is, after a time, you get a feel for the people your connecting with, personalities shine through posts. Are they funny? Do they just complain all the time?, Do they have a moderate attitude to there illness? Is the information factual? All of these are indicators as to whether their advice is relevant and sound.
Because Patientslikeme.com is solely based around being a patient, there no real way of validating the information.
Klout has more promise simply because its based on influence and validation.
Patients and Doctors will find a solution together
One of my best friends is a Consultant ENT surgeon and we were discussing this topic the other night..Medical Professionals and Patients WILL find a Social Media solution together. We are not there yet, but it will happen.
Unfortunately the hardest change will have come from YOU GUYS! My ENT buddy said that he wouldn’t put himself out there, he said he would “never have a life outside of work?” he predicts that people would send him questions all the time and what if his advice lead to something going tragically wrong?..That gave me pause for thought.
Its quite something to put yourself out there…
THANK YOU for putting yourself out there, You’ve already set the standard.
A few things that medical meeting organisers could learn from the organisers of TEDMED.
1. Make presentations shorter. The presentations at TEDMED are 18 minutes long. This allows for large numbers of presentations with finely tuned ideas to be presented in a polished digestible format to an audience. George Bernard Shaw said. “I’m sorry this letter is so long, I didn’t have time to make it shorter.” Even the most excruciating presentation is bearable if you know it’ll be over shortly.
2. Give speakers guidance on their style of presentation with specific suggestions; e.g. “think big, make the complex plain, connect with peoples’ emotions, don’t flaunt your ego, don’t read your talk, finish on time” etc. Check their slides well in advance of the talk and offer guidance. Speakers need to be guided and managed.
3. Introduce talks which stimulate thought, innovation and creativity rather than didactic hard data. It’s not always essential to have the answer or solution to make a presentation interesting.
4. Introduce an element to your meeting with speakers from disciplines outside medicine. At this TEDMED the innovative dynamic is generated by bringing together people from all sorts of disciplines passionate about healthcare; Some of the most exciting conversations / commentaries that took place this year at this years were with Architects, Climate Change specialists, Neurobiologists, Experts in Social Networks, Plant Biologists, Technology Entrepreneurs, Gamers, Military personnel, Poets, Musicians and dancers.
5. Broadcast to remote locations so people don’t have to attend. TEDMEDlive broadcast to 100′s of institutions around the US this year allowing exposure of a much larger number of delegates to presentations. Certain delegates will need to attend for a more immersive networking experience but many delegates could gather in groups around the world creating smaller, more intimate and manageable communities to allow meaningful local discussion.
6. Introduce Social Media to the event to allow two way discussions between delegates (those present and remote) and speakers. This could be by using Twitter but the use of a mobile App for registered delegates would allow questions to be collated and filtered by the chairperson for the session. Put an end to the usual suspects hogging the mike from the floor. This also means that organisers will need to use high quality free Wifi and recharging facilities for mobile phones and laptops.
7.Using crowd sourcing to ask the questions that physicians most want the answers to – those questions could then be answered by experts based on data gleened from novel research presented at those meetings. These questions could also be used to prompt areas of research deemed to be relevant by the broader medical community. A novel tool presented at this years meeting by management consulting firm Booz Allen Hamilton allows crowdsourcing of ideas at a conference allowing the most popular sugestions to percolate to the top of the list.
8. The most moving, insightful and powerful presentations at this years TEDMED meeting were presented by patients (some of whom were physicians) or by their carers. The patient perspective introduces an essential element and the ultimate stakeholder in to the conversation. The power of the patient narrative should not be underestimated and reintroducing some humanity into a tsunami of medical data reminds us why we’re here.
9. Introduce an element of fun into the meeting. Make people laugh, make them angry or make them cry. The impact of a creative element from the Arts in the programming (apart from presenting a pleasing distraction to complex medical data) contributions from poets / artists /comedians may allow us to create fresh perspectives and imaginative leaps. We need to be inspired by people who are real risk takers.
What do you think?
I’m at at the JFK centre in Washington this week to attend a meeting with big ambitions for healthcare. TEDMED is a meeting which celebrates (not a word often used in the context of healthcare meetings, trust me) the imagination, innovation and inspiration that occurs at the intersection of science, technology, government, business, art and education.
Yesterdays’ opening session showcased no less than 4 different performances from the arts community who showed us things (through dance, song writing, wordplay, humour and extraordinary feats of imagination) that we would have never thought possible. Although I have always had an awareness that arts had something to offer healthcare, I had never before this considered that the Arts might have the potential to help doctors and health care providers think differently – to inspire us to take big imaginative leaps of faith or to inspire us to think about things which we thought weren’t possible. The idea that a cardiology, oncology or rheumatology meeting would be opened by a group of acrobats on skateboards might seem ridiculous to those not attending TEDMED but I’m beginning to see its charm.
I had quietly assumed that the opening sessions might place an emphasis on some new great feat of technology. Two of the opening presentations made strong arguments on how the most important elements of change that need to take place in healthcare have nothing to do with technology at all. Bryan Stevenson, a public interest lawyer spoke about harnessing the power of identity in shaping peoples’ expectations of themselves, and how recognising our essential humanity should be at the core of any intervention. Rebecca Onie social entrepreneur and co-founder of Health Leads reminded us how the most important interventions in health don’t even need to involve any clinical input. Those of us caught up in the frenzy of the untold promises of the technological revolution in medicine need to take stock.
‘In attempting to follow the narrative of man’s ambitious progress towards a state of technological and political perfection, we have sacrificed opportunities to remind ourselves of the quieter truths which we know about in theory and forget to live by in practice’ – Alain de Boton
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.
“The world of medicine changes less quickly,” a colleague of mine recently commented”, “than it takes for our annual scientific meeting to come around”. His wry comment reflects the slow grind of scientific progress, but also a certain medical scepticism regarding the need for change in medicine in general. Whereas this may well be true for progress within individual clinical areas, the world outside clinical medicine seems to changing rather more quickly.
The development of digital technology has fundamentally altered (and in some cases decimated) the record industry, newsprint media, retail, publishing and advertising industries. Huge fortunes have been made and large institutions have crumbled with the march of technology. Those of who need convincing that medicine will be immune to these forces of change in these areas had better read Dr. Eric Topol’s book ‘The Creative Destruction of Medicine’.
Topol is well positioned to tell this story. He has been one of the ‘heavy hitters’ in cardiology research over the past few decades. He pioneered the development of many of the drugs routinely used in clinical practice (Plavix and tPA for example) and is well known for his involvement in highlighting the cardiovascular risks associated with Vioxx. He has published extensively in the field of genetics, has a background in medical education (he setup the Cleveland Clinic Lerner College of Medicine) and has also been involved in wireless medicine since its inception. He is currently Chief Academic Officer for Scripps Health (a non profit healthcare system), a Professor of Translational Genomics at The Scripps Research institute (La Jola, California) where he holds the Chair of Innovative Medicine.
Medicine, he says, is about to be irrevocably altered by a ‘super-convergence’ of the “the rapidly maturing digital, nonmedical world of mobile devices, cloud computing, and social networking with the emerging digital medical world of genomics, biosensors, and advancing imaging.” The revolution he describes, and which is the grand theme of this book, is the inevitable move from population based medicine to that of the science and health of the individual.
He opens by describing the key developments which have most altered the digital landscape over the last few decades; the mobile phone, home computer, internet, genetic sequencing, iPhone and social networks (Facebook, Twitter and Online Patient communities). Even the most technophobic amongst us will be peripherally aware how much technology has advanced in the last few years. It is breathtaking to see the scale of change, the impact and the breadth of possibility of this technology laid out in this book.
He also describes the ways in which patients / consumers have changed over that time as a result of some of these changes. The internet, social networking and online patient communities have created a much better informed, empowered patients and the birth of the ‘ePatient’. Todays consumers, through their experience of using the the highly personalized and almost infinite ‘deep inventory’ of online merchants (such as Amazon) have an expectation of making choices in a very customized, individualized way. They have become used to the idea that one size does not fit all.
Contrasting this personalised consumer experience he describes the current ‘orientation of medicine’. Doctors, and the medical education system that produces them, are out of touch, conservative and slow to change. Todays’ ‘Evidence based medicine’ tends to be based on studies of populations rather than on individuals. A population based study of a drug which claims to reduce the risk of MI by 36% for example, sounds much less impressive to a patient when they realise that 100 individuals will need to take the drug in order to prevent one MI. He also criticizes the use of surrogate end points in studies (e.g. like cholesterol / LDL) and the development of expert based guidelines around these and puts mass population screening tests like PSA under the microscope. He introduces the idea that it is now possible, using pharmacogenomic studies, to perform real evidence based studies based on individuals rather than populations.
His chapter on genetics (which includes a detailed descriptions of genome sequencing, diagnostic screening, and pharmacogenomics) is one of the best in the book. It makes sense of an area of such bewildering complexity that I had until now given up trying to understand. Topol himself even undergoes a commercially available genome screen and discusses the experience. There are chapters on how physiological data can now be captured in real time using wireless devices, chapters on improved (and portable) imaging technologies, 3D printing of organs, electronic health records (and how, if properly used could reduce medical errors).
Whereas this book could function very well in its own right at the level of a ‘techno-tour’ through modern medicine and new technologies, its real strength is in its description of how these individual forces will converge, influence and catalyse one another to change medicine as we now it. Topol describes how technology, much of which is already available, has rapidly progressed to allow digitization of humans (through better understanding of genomics and imaging) how this will the allow better targeting of treatments and how it will also allow direct monitoring (through imaging and biosensors).
Topol was made to write this book. His clinical and research experience positions him perfectly to be a pathfinder and guide to navigate this complex area, but he is also an excellent communicator, and fearless truth finder. He highlights the failings of our profession (and those of the regulatory authorities, pharmaceutical companies, education systems) and yet fully understands the limitations of technology, and how digitization of the human being will never capture its essential humanity. He predicts that because many of the changes he describes will be resisted by doctors and others within the health sciences, that patients / consumers are likely to lead this revolution.
The challenge for those of us in healthcare is working out where the individual clinician is going to fit into this new world. I still feel that in a rapidly changing world of almost infinite complexity, our patients are going to continue to need reliable and knowlegeable allies and guides other than their friends, relatives and online patient communities described in the book. The doctor patient relationship will always remain fundamental to most aspects of healthcare, even if supplemented with data from digital sensors or where consultations are done over a video link-up.
If we are to remain relevant to our patients though, we need to expose ourselves to the world Topol describes and embrace our digital future. It will involve changes to the rather ‘vertical’ approach to postgraduate medical education within specialties to a more ‘horizontal’ approach; In an interview with ‘Wired’ magazine this month Topol says ‘We need a Khan Academy for doctors: captivating 15-minute videos on genomics, on wireless sensors, on advanced imaging, on health information systems. These things can revive the excitement they felt as premeds, when they first decided to go into this field. If we can get practicing physicians up to speed and really inspired, maybe we won’t have to wait a generation’.
It is a bold book full of big brave ideas. Just make sure you read it before your patients do.
This article was published in the March 2012 edition of Modern Medicine Ireland
This is a brief video I have prepared which may be of use to patients who have rheumatoid arthritis or psoriatic arthritis (or other arthritis illnesses) considering taking Methotrexate as an arthritis treatment.
It outlines some of the important side effects of methotrexate but also puts them in perspective based on my many years using the drug as a rheumatologist.
This is my first attempt at providing medical information using youtube.
I’d be interested in what people genuinely think of the information posted.
Is it too detailed?
Isn’t it detailed enough?
Are there other topics you’d like to see covered? Please let me know.
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