These days, we're diagnosing and even treating what ails us ourselves. It's a hands-on approach which (A) has many advantages, (B) is fraught with danger, and (C) can be OK if you know what you're doing. Read on to find out which answers apply – and when
By John Kron
It was 2pm on a sunny afternoon in February 2005 when Julie Wilmot logged onto yet another medical website. Somewhere out there in cyberspace, she reasoned, there must be the answer she was looking for. The 41-year-old nurse was desperate to find a cure for her son, Luke, who had been diagnosed with a rare neurological disorder called dystonia when he was six. The disorder causes involuntary muscle spasms and stiffening of the body and, in Luke's case, had become so chronic that he was now confined to a wheelchair.
Julie had consulted specialist after specialist in her home town of Perth, and all had said the same thing: Luke, now 17, would never walk again. But Julie and her husband Ian, a teacher, refused to accept the prognosis. Together they began scouring the internet in the hope that – somewhere, somehow – they would stumble upon a cure.
Finally, Julie caught a lucky break. She clicked onto the Dystonia Medical Research Foundation website and came across an Australian neurologist, Dr Rick Stell, who specialises in Deep Brain Stimulation (DBS). It is a surgical treatment in which electrodes are placed deep into the brain, where they deliver electrical impulses to control muscle movement. It had been successfully used to treat dystonia sufferers overseas, but was not widely known in Australia. Julie knew this was the answer to her prayers.
In May 2005, Luke underwent the six-hour operation at Sir Charles Gairdner Hospital in Perth. Just one month later, he was walking. Today he is working part-time in ahardware store, is driving and plans to travel overseas with his friends.
"It's all because we used the internet," says Julie. "Without it, the chances are we may never have known about the benefits of DBS, nor would we have found Dr Stell. There's no doubt it changed my son's life."
Diagnostic Dilemmas
The Wilmots are part of a burgeoning new trend. An increasing number of us are playing doctor, using the internet to look up symptoms and diagnose medical conditions, order self-diagnostic kits and medical equipment, and even treat ourselves with medications or herbal remedies we purchase online.
Some of us are deliberately avoiding doctors because of the cost and time involved, or because we're afraid of what we might find out. Others are too embarrassed to talk about our health problems, preferring not to discuss such sensitive topics as our weight, diet, alcohol consumption and other bad habits. Some of us, due to bad experiences in the past, simply don't trust our GP, or feel we can put more time and effort into researching our conditions than any one professional is able to set aside. Whatever the reason, the facts remain: playing doctor has many advantages, but it can also be fraught with danger.
Every year, five million Australians search for health information online. A 2004 survey conducted by ACNielsen found that 66% of internet users are satisfied with the quality of health information available on the web. What's more, a HealthSmart poll carried out in April 2006 revealed that only 5% of internet users think following medical advice from the web can be dangerous. That indicates enormous public confidence in web content. Unfortunately, we may not always be in a good position to judge.
Just look up the word "depression" or "osteoarthritis" and the chances of finding a website that contains safe, reliable, unbiased information are remarkably slim, according to research carried out by two Australian universities.
A 2002 study conducted by the Australian National University (ANU) assessed the quality of 15 Australian medical websites that dealt with depression and found that only half the sites bothered to warn people about the side effects, dangers and contra-indications of antidepressants. Overall, they rated the quality of the health information on all of the sites as "relatively low".
When Monash University conducted a similar study in late 2003 on medical websites that dealt with osteoarthritis, they didn't fare much better: only 29.9% of the sites tested bothered to cite research papers to support the information that was listed on their website. Similar online studies conducted overseas have also found a long list of faulty medical facts about all sorts of health conditions, prompting experts such as Professor Peter Yellowlees, former director of Queensland University's Centre for Online Health, to warn that the internet is awash with "inaccurate, incomplete and deliberately biased health information".
The biggest problem, he says, is that most people don't know how to tell a serious website from a shonky one. "Most people rely on a search engine like Google or Yahoo, where the choices offered first tend to be the most popular rather than the most reliable," Yellowlees says. "And some of these websites can look exceptionally professional – so it's hard to differentiate between what is authoritative and what's not." (For tips on finding a reliable medical website, see our checklist for safe sites.)
However, he is quick to point out that when you stick to credible medical sites, the internet can be a valuable health resource: "I encourage all of my patients to go to specific websites that I know are helpful, so they can receive accurate information and make links with others who have the same condition."
Home-Testing Hype
Think you might have diabetes? Curious about your cholesterol levels? Worried you might be going through menopause? Not that long ago, you could find out only by visiting a doctor, but these days you can test yourself at home thanks to a wide range of medical test kits that can be bought online, at chemists and even in supermarkets, for as little as $15. So, in addition to testing for pregnancy, you can now screen for bowel cancer and glaucoma (through the US website keepyoursight.com) and even check to see if you have high blood pressure.
Home diagnostic testing is already booming in Europe, the UK and the USA, and now Australians are embracing the trend, too, spending more than $200 million on kits last year alone. The reason? People are just too busy to go to the doctor, says Tom Crimmins, managing director of Health-One, which markets home-test kits.
"The irony is that, as we have become more knowledgeable about health and more empowered to take care of our health, we have become busier than ever before and don't have the time to do it," says Crimmins. "People are saying, 'Just give me a simple test that I can do when and where I like.'"
That was certainly how Jenny Howard of Warradale in South Australia felt when she received a home-test kit for bowel cancer last year.
"I had my gall bladder removed years ago and I'd heard this was associated with an increased risk of bowel cancer, so it had been at the back of my mind that I should get checked," says the 56-year-old banker. "But I work full-time and have six grandchildren. I'm busier now than I've ever been. Who's got the time or inclination to have a colonoscopy?"
The home-test was quick, easy-to-use, and simply in-volved using a cotton swab to wipe over a faecal specimen once it had been deposited in the toilet bowl. She then posted the sample to a local pathology lab and waited for the test results. When they came through, it was bad news: the test revealed some irregularities and Jenny was referred to a specialist.
"They found a cancerous growth," she says. "But I was lucky because it was caught in the early stages." Jenny has no doubt that the convenience of the home-test saved her life. "Now I've told all my family and friends to do the test, too."
Experts are keen to caution that not all home-tests are reliable. Some kits that are freely available on the internet – including one that claims to be able to detect HIV – do not have TGA (Therapeutic Goods Administration) approval. (To avoid buying a non-approved test, first check to see if it is listed on the Australian Register of Therapeutic Goods database at www.tgasime.health.gov.au.)
Another problem is that, without consulting a doctor, it's easy to get overly distressed or confused if the test turns up positive. A positive result doesn't always indicate a serious health problem, but can simply mean you need to investigate the matter further. Nor is there any way of knowing if you've even carried out the test correctly, says Dr Carolyn Block, a GP in Double Bay in Sydney. In particular, she says, she's noticed a problem with home medical equipment, such as blood pressure monitors.
"A 60-year-old woman came to see me recently convinced she had a brain tumour," says Block.
The woman was feeling light-headed and had been suffering dizzy spells, and said she was generally feeling unwell. As it turned out, she had recently bought a blood pressure monitoring device to use at home.
She had tested herself the week before and had been shocked to record an abnormally high blood pressure reading.
"Almost certainly she was anxious, or had been rushing around, which raised her blood pressure temporarily," explains Block. "What she should have done was take another measurement when she was relaxed, but instead she doubled her dosage of blood-pressure-lowering medication and, as a result, her blood pressure fell below normal levels. That was what caused her fainting and dizzy spells."
There's no denying that home medical tests can and do save lives, but only when they are correctly used. That's why experts recommend purchasing such tests from a chemist, where you can receive personal instruction before using them, rather than over the internet.
Treatment Traps
There's no doubt the most risky part of DIY doctoring is when patients attempt to treat themselves, either with prescription drugs or herbal remedies bought online. Many believe that just because supplements or herbs are "natural" they must be safe, but according to Dr Tracey Bessell, acting director of the Patient Safety and Quality Unit at ACT Health, that's simply not the case: if a product is effective enough to make you feel better, it can also produce side effects.
"One of the dangers with self-medicating is that herbs can interact with conventional medications and, while health professionals are trained to know what these interactions are, the public often has no idea," she says.
Three years ago Gayle*, a 51-year-old manager from Goulburn, NSW, chose not to consult a doctor when she felt unusually tired. Gayle was embarrassed by recent weight gain and wanted to avoid it being raised in a GP consultation. Instead, she looked up her symptoms on the internet and came to the conclusion she had anaemia.
For the next 18 months, Gayle took iron-enriched vitamin supplements, increased the amount of red meat in her diet and confidently waited for her ailments to go away. They didn't. In fact, they got worse. She started developing poor sleep patterns, fungal nail infections and poor concentration, and had become depressed.
Finally, Gayle booked an appointment with her GP, Dr Carole Castles, and discovered she had developed type two diabetes and also had an inherited disorder called haemochromatosis (where the body stores excess iron). Ironically, it is the exact opposite of anaemia.
By misdiagnosing the problem and delaying seeing a professional, Gayle had allowed her diabetes to worsen. And the iron tablets and extra red meat probably exacerbated the haemochromatosis, says Dr Castles. Now, Gayle has to visit the blood bank to be bled, to get her excessive iron stores under control.
"The thing to remember (if you are going to take matters into your own hands) is to set a realistic time limit, so that if you don't improve – or you get worse – then you see a doctor," says Dr Castles. "In Gayle's case, I understand why she did it: she's a bright woman who's used to working things out for herself." :
*Not her real name. |
