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TENSION between the use of recommendations from learned societies and the realities of frontline clinical diagnosis and treatment of women with severe iron deficiency anaemia has been highlighted in the latest MJA.
In an anonymous Perspectives article, the father of a young woman with severe iron deficiency anaemia (IDA) called on the Gastroenterological Society of Australia (GESA) to review its professional recommendations after his daughter died of colorectal cancer (CRC). (1)
Representatives of GESA responded, saying while it was important to make an early diagnosis in CRC it had to be weighed against the risk of overinvestigating young women with iron deficiency. (2)
The woman was 22 years old when she first presented to her GP with fatigue and general malaise. She had severe IDA (haemoglobin of 61 g/L) and was prescribed iron supplements over 6 months, with minor improvement.
A gastroscopy then found no sign of coeliac disease and she returned to her GP for further iron supplementation.
Eleven months later a lump in her lower abdomen was investigated via colonoscopy and colectomy, which revealed a caecal cancer that had spread to her lymph nodes and liver. She died of metastatic colon cancer at age 29 years.
Leading gastroenterologist Professor Terry Bolin, of the Gastrointestinal and Liver Clinic in Sydney, told MJA InSight the case highlighted that interpretation and specificity of IDA guidelines were crucial.
“We all know you can get bowel cancer at a young age”, he said. “You can’t apply screening principles to individualised situations.”
In his article her father wrote that before his daughter’s diagnosis she saw several GPs, a gastroenterologist and later a general physician, “none of whom recognised that she was suffering from colon cancer”.
The current GESA iron deficiency recommendations advise a colonoscopy for asymptomatic women only if they are over 50 years of age, but for all age groups if they have bowel symptoms. (3)
“I believe that [GESA] should review the professional guidelines … in this regard”, the patient’s father wrote. “[They] clearly need much greater specificity, and where exceptionally low initial haemoglobin readings apply, both endoscopy and colonoscopy should be performed immediately [in all age groups].”
Professor Bolin said the GESA recommendations were open to interpretation.
“You can’t treat someone with a severely low haemoglobin count, who is neither menorrhagic nor vegan, for [a long period of time] with little improvement and not send them for a colonoscopy”, he said.
In their reply to the patient’s father, the GESA acknowledged that given the woman had persisting IDA despite iron supplementation, she would have fallen within their “recommendations for further diagnostic investigation”.
However, they said IDA was common and CRC was rare in young women, and that the recommendations were written in that context.
“While it is important to make an accurate and early diagnosis of CRC, it is also important to avoid overinvestigating young women with iron deficiency who have a more likely cause such as menstrual loss and/or inadequate diet and who respond appropriately to iron replacement and gynaecological treatment”, the authors wrote.
Professor Martin Tattersall, from the department of cancer medicine at the University of Sydney, expressed reservations about the response from the GESA.
“I think they deflected the issue to the investigation of IDA rather than investigating a young woman with a haemoglobin count way outside the mean they describe for her age group”, Professor Tattersall told MJA InSight.
“We’re not talking about screening asymptomatic people here. Saying that iron deficiency is common is fine. But that is not the same thing as anaemia levels of 61 g/L; not by a long way.”
Professor Graeme Young, from Flinders University’s Centre for Innovation in Cancer in Adelaide, said he did not feel the problem was with the GESA recommendations themselves.
“The problem is in the implementation of guidelines”, he told MJA InSight. “Guidelines are essential, they’re constructed by experts and careful attention is paid to the hard evidence. But guidelines without proper implementation don’t necessarily always lead to the right outcomes.”
1. MJA 2013; 198: 562
2. MJA 2013; 198: 563
3. GESA 2011; Clinical Update: Iron deficiency
In my opinion the GESA response to the gross delay in diagnosis of colon cancer in a young woman, with tragic consequences was inadequate and self serving This young woman could and should have had a colonoscopy concurrent with her endoscopy. All of my patients with unexplained or persistent IDA get an endoscopy AND colonoscopy. Right sided colon cancer classically presents with IDA and needs to be ruled out. Colon cancers DO occur in young adults. The failure to diagnose in the highlighted case is inexplicable. GESA –change your guidelines!!
This tragic case highlights the danger of using guidelines first up in dealing with a new, unique individual, instead of curiosity and common sense. Common sense should always over-rule guidelines, which are indeed simply a guide. They have assumed an importance well out of proportion to their worth. Pactitioners are frequently scolded inappropriately for not following them, but usually have excellent reasons for their actions. This problem is one manifestation of a larger problem of over-reliance on large trials and meta-analyses, which generate highly statistically significant (because “n” is large) apparent “truths”, but have dumbed-down patient variability and the unique features of individual patients which are of much greater importance.
General Practitioners need greater training regarding IDA as specialist waiting times are often ridiculous.
Some doctors are grossly unaware and wouldn’t even consider bloodloss as the cause.
Doctors also need to listen to patients more when patients insist there is something wrong with them or the patient says they think they know what’s wrong with them.
I have IDA but it took going to 4 doctors before it was diagnosed.
When I pointed out my obvious pallor,I was told stupid things like “I’ve seen worse” and “that’s just your complexion”.
Even lay persons or Beautician can tell the difference of nice pale complexion vs sickly ghostlike.
Clearly my situation wasn’t as bad as this womans,but it just teaches that doctors should be continually learning,listening and keeping an open mind.
http://www.patient.co.uk/doctor/non-anaemic-iron-deficiency.htm
It is imperative that the young women’s diet is adequately checked to ensure that she does have a balance intake with sufficient good irom sources. You may have comments such as I do eat red meat but upon a dietary history discover that quantities are small and very infrequent. Iron absorption from heme iron is better than supplements.
The usual approach in dealing with anemia in a young woman would be to consider the most common cause such as dietary or menstual loss. A trial of iron therapy would be the usual approach if no improvement after six weeks then investigate with Fe studies and occult blood stool. This should give the clue to advise colonoscopy, however if the anemia responded you would have a false security and repeat Hb tests at six weekly intervals would hopefully show a fall in Hb. The situation is tragic so when presented with anemia one needs to ask the question about the diagnosis needed! I feel that a rethink in how we deal with anemia, in the future, we need to look to guidelines being given by RACGP.
Whenever guidelines are not observed the response is often that ignorance and incompetence is the reason. Here we have the reverse observance. Guidelines are only relevant when interpreted appropriately for the particular clinical presentation. Perhaps its time the experts had some reality testing added to their deliberations.
A young woman died and her father is trying to help others for the future.
Doctors and societies are responsible to the patient. It is about people not money & unnecessary testing.
Such a low Hb with no obvious cause in a quite young person , deserves a full investigation, guidelines or no guidlines. A faecal occult blood could have been done in place of a colonoscopy in the first instance. Guidlines, surely, are just a guide or prompt and cannot be expected to cover every eventuality.
Unexplained iron deficiency requires full investigation. If the GESA guidelines do not recommend this in a young (non-menorrhagic) woman, then in my opinion they should be corrected.
This case has nothing to do with screening of asymptomatic patients. “Playing the odds’ in symptomatic patients has been shown here to be risky, and at the very least should have been discussed with the patient.