At the age of 30, Sarah Rowan Dahl was diagnosed with rheumatoid arthritis (RA), a chronic inflammatory disease in which a person’s own immune system begins destroying their joints.
RA affects almost half a million Australians, and generally strikes young adults between the ages of 25 and 40. If uncontrolled, it causes ongoing fatigue and pain, and progressive joint damage that can result in permanent disability and psychological distress.
Five years after diagnosis, Dahl is still painting at a cracking pace, she describes her disease as “currently bearable”, and she is a passionate advocate for the use of Doppler Ultrasound (DUS) to help RA patients see beneath their skin, understand what’s happening to their joints and adhere to life-enhancing, if daunting, medication.
Dahl’s rheumatologist, Associate Professor Fredrick Joshua, Macquarie University has been investigating the effectiveness of ultrasound as a tool for diagnosis and treatment of RA since he began his PhD in 2001.
Study by study, inch by research inch, he has contributed to the body of knowledge that shows how helpful ultrasound is in early detection of the disease—when other markers, such as blood tests and X-ray may be inconclusive; in predicting relapse or flare-ups in patients who are in remission; and with engaging patients in adhering to their treatment.
“I see a community need for better care,” says Joshua from his office at Combined Rheumatology Practice. “In rheumatoid arthritis there is frequently a delay in diagnosis because of an inability to see swelling.” He explains that because RA is periodic—swelling may not be pronounced on a particular day, or at a particular time of day—it can elude early detection.
Doppler ultrasound uses ultrasonic (beyond the range of human hearing) sound waves to detect movement; when directed at joints, it allows detection of red blood-cell movement and abnormal blood flow that occurs with inflammation.
In a patient experiencing joint pain, but with no obvious swelling, DUS can thus still signal changes due to inflammation, and provide certainty that encourages patients to take a course of treatment to slow and control the condition.
Grey-scale ultrasound also plays its part, providing an image of the structure of tissues within the body, and showing damage to joints. “Ultrasound will pick up joint harm at nine months that may not be picked up by X-ray for 18 months,” says Joshua.
In his ongoing work to change outcomes for RA sufferers, Joshua most recently led the Deduce study (Defining Rheumatoid Arthritis Progression using Doppler Ultrasound in Clinical Practice) to assess the use of Doppler ultrasound (DUS) in Australian patients with RA.
Among the study findings were that 94% of patients who were assessed using DUS felt that discussing the resulting images with their rheumatologist motivated them to take medications according to directions. In addition 74% of patients said that discussing DUS images with their rheumatologist helped them to better understand their disease.
"We’ve got really good treatments for rheumatoid arthritis. It’s trying to make sure that everyone knows, so that we can help each patient in a way that’s right for them." Associate Professor Fredrick Joshua
The life quality of performance painter Dahl was seriously impaired by sudden onset of RA. Working, walking and caring for her children became agonising if not impossible.
She says, “Opening milk: I would carry the milk in my arms in a really weird way and kick at the neighbour’s door to ask if they could open the milk so I could give my older daughter Selah cereal in the morning.” Dahl frequently couldn’t use her hands to pick up her baby daughter, Rhema; instead, she manoeuvred the little girl towards herself using just her arms. She says, “It was a crazy, crazy change of life.”
Like many patients, Dahl was reluctant to take medication prescribed for RA. Known side effects can include severe nausea, and some medications increase a patient’s risk of developing other cancers such as leukaemia. “Initially I was very against it because I didn’t want to pump so many toxic things into my body—and I kept reading online about all these great natural ways of healing.”
Joshua says there are many community disincentives to taking drugs for RA. A common mistake is to assume that all 100 kinds of arthritis, some of which can be eased and even controlled with lifestyle changes, are the same. “Most people think of arthritis as osteoarthritis. The perception is that arthritis is common, that you should take glucosamine, and exercise, and push through. Another disincentive, particularly in the early stages of RA is that the X-rays look normal; you have no way of being sure about what’s causing your pain. The doctor recommends a drug and when you Google it, it says it’s used in cancer treatment and you can get cancer from it …”
Joshua has been driven to educate both the public and rheumatologists, because, he says “Taking the drugs prevents joint destruction, prevents pain, improves quality of life and you die with less frequency” from associated cardiovascular disease. Like diabetes, RA is a pro-atherogenic disease, explains Joshua. That is, “People with rheumatoid die of heart attacks and strokes, and that occurs more frequently in people whose disease is less well controlled.”
Says Dahl, “The first or second time I met Dr Joshua, he introduced this machine” Joshua uses both GE LOGIQ S7 and LOGIQ e mobile ultrasound systems. “As a visual artist, to see within my own hands, to see in living black and white, with blue and red here and there, what was happening, was illuminating. He said, ‘This is looking good here, but this is why you need to take the medication or else it will deteriorate. Your hands could look like this …’ and he showed me scans of people who had had rheumatoid arthritis for longer periods of time.”
Realising that taking medication would allow her to be an active parent and to continue working encouraged Dahl to begin treatment. She now has weekly injections of a biological disease modifying antirheumatic drug, and says she’s fortunate not to experience side effects.
She says the ultrasound images, “also let me see the bright side, that my hands weren’t as badly damaged as they sometimes felt. It felt as if my hands were completely destroyed. It felt like hell. Dr Joshua was able to show me it’s not as bad as that, but that it could get worse.”
The Deduce study also examined why only a few Australian rheumatologists routinely use DUS (it is more broadly used in Europe and the US), despite its ability to detect joint inflammation and predict disease relapse or flare-up in patients.
Cost was discovered to be the most significant factor: the cost of buying and maintaining the ultrasound machines, but also the cost of time required to learn how to become proficient in using the machine and thereby realising a return on investment, both for the doctor and the patients who would be hit with gap payments on the 15-minute longer consultations.
“A lot of rheumatologists operate as individuals, and it’s difficult to justify the spend on a machine,” says Shelly Lord, point-of-care product manager, Ultrasound, for GE Healthcare in Australia and New Zealand. “Because there are so few rheumatologists, only barely 300 in Australia, they’re really, really busy, and to introduce new technology when you’re so busy is quite hard.”
"Part of the work I’m doing at the medical school is using ultrasound to teach medical students general anatomy, so that when they finish they’re already upskilled." Associate Professor Fredrick Joshua
The Deduce study led AbbVie, a global, research-based pharmaceutical company, to provide significant funding for a certified course that would train selected Australian and New Zealand rheumatologists in the use and application of DUS in their practices.
The program was dubbed IMAGINE and as part of its involvement AbbVie has provided 25 LOGIQ e ultrasound machines with the aim of training 25-30% of the two countries’ specialists by mid 2017.
With the dual hurdles of training equipment and education overcome, the first 27 participants have already received their Certificate in Clinician-Performed Ultrasound, Rheumatology from the Australasian Society for Ultrasound in Medicine.
Although the completion rate for the first run course—the course takes place over more than a year, and involves both state-based and interstate teaching sessions—was 80% (some doctors were unable to complete their portfolio of scans), 90% of participants subsequently bought and are using ultrasound machines in their practices.
As part of the Deduce study, Joshua also provided selected radiologists around the country with information packs on the kinds of ultrasound scans rheumatologists need to communicate with RA patients about their illness; and educated 21 rheumatologists in how to read those scans and explain them to their patients, so that even without their own in-house ultrasound machine, more rheumatologists will be able to show patients their inside story and engage them in treatment and recovery to a state of remission.
"Ultrasound is quick and effective. I’m so grateful for the technology." Sarah Rowan Dahl
Joshua says the greatest impact ultrasound has had in his practice with RA patients has been in providing certainty—proof of RA, confirmation that treatment is essential to avoiding irreversible joint damage, and proof that medication is working.
“It’s a way of developing a rapport with a patient and knowing truth. A lot of our drugs have side effects, and nobody wants a side effect … But people can become paralysed by indecision, and they ruin their lives because there’s all this opportunity cost—you might give up tennis, then you give up swimming, then you give up walking because you’re dealing with short-term pain and adapting. But we’ve got really good treatments.”
For Dahl, the proof is in the painting. She recently toured Europe with her husband Jared, a cellist who also plays didgeridoo and guitar.
She says, “Sometimes I have to hold my paintbrushes in funky positions, or just give up brushes altogether and use my forearms. My children know that sometimes they have to help Mummy down big hills—I hold their hands when my knees and ankles are having a rough day…”
But, she adds, “If I hadn’t taken the medication, I wouldn’t have been able to recover to this level as quickly. I’ve found that the medication allows me to just really enjoy my work, enjoy my life.”