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Selected Commentaries on New
Zealand Health Technology Assessment by Peter Day Commentary
from Dr Burton (off site) Commentary from Dr Sarah Smith (below) COMMENTARY
ON THE 2001 NZHTA As a campaigner who has been trying to raise awareness of adhesive arachnoiditis in both the medical and public arenas, I welcome this report as an important step forward in helping to further this aim. Being the first of its kind, the report is groundbreaking and I hope that it will occasion further such work in other countries. Arachnoiditis is, after all, a global issue. One of the chief aspects of adhesive arachnoiditis has been appropriately highlighted by the report: a continuing dearth of cohesive medical literature, in particular with regard to the prognosis of this incurable condition. As the report remarks, it has a heavy "reliance on the work of several key authors" which denotes the very limited number of experts within the field. The authors go on to suggest that this very problem may be a hindrance to future work on this condition. Peter Day and his associates have also identified and elaborated on a number of other highly important issues which include: 1) difficulties in terminology 2) lack of correlation between medical evidence and symptomatology 3) statistics of incidence and prevalence These three issues have already been discussed at length by experts such as Dr. Charles Burton, who has recently reiterated them in his Supplementary Observations on this report. (available at:http://www.burtonreport.com He believes that around 5% of people with adhesive arachnoiditis have a "clinically significant" condition. He ascribes the low prevalence of clinically significant adhesive arachnoiditis to the ability of the nervous system to compensate for insults, provided that these are not too frequent or numerous. However, he goes on to make a further, vital point: "This also means that many who have the scarring and are asymptomatic exist in a precarious state"; he notes that the "huge reservoir of existing cases" involves individuals who "appear normal" but live essentially with the sword of Damocles hanging over them, albeit they remain unaware of this. Of course, medical professionals also remain ignorant of the time bomb, and in the course of instituting further invasive intervention, set the clock ticking. Until or unless clinicians develop an index of suspicion of adhesive arachnoiditis, based upon a patient’s history of risk factor(s) for the condition, then those at risk are unlikely to be identified : prevention of an irrevocable situation will remain impossible and furthermore, recognition of cases of the condition will continue to be patchy. This lack of awareness is of prime importance in the continuing battle against arachnoiditis. The Day report does clarify for us the lamentable lack of progress in this matter. Both the NZHTA report and Dr. Burton's observations thereon note that statistics in incidence and prevalence of adhesive arachnoiditis remain lacking. This is something of a vicious circle: lack of awareness and perception by the medical profession of adhesive arachnoiditis as rare inevitably precludes routine consideration of the condition in differential diagnosis and the resultant low rate of diagnosis gives a feedback loop of low statistics that 'confirm' the notion of the condition's rarity. In addition, it is not considered to be a sufficiently common risk to warrant mandatory warning during discussion of consent for invasive spinal procedures. As the Day report comments, quite how we are to resolve this conundrum is far from clear at this stage. On more specific issues: the NZHTA report notes that "well designed clinical trials in the efficacy and safety of steroid injections and infusions are needed to better determine the benefits and hazards of their therapeutic role". Whilst in New Zealand, perispinal use of preparations such as Depo-Medrol is viewed as 'experimental' and thus carries a statutory requirement of specific informed consent by the patient, no such approach is taken in countries such as the UK and USA. As the report details, work and literature reviews to date call into question the advisability of continued use of epidural steroid injections; in particular, the 2001 Cochrane Review should be viewed as a clarion call to reassess this practice. Personally, I feel that the body of literature currently available carries sufficient weight to preclude the necessity for further studies and that bearing in mind that these procedures are now the major cause of new cases of adhesive arachnoiditis, use of epidural steroid injections should be discontinued forthwith. I am petitioning the UK Department of Health on this matter and intend to approach the National Institute of Clinical Excellence (NICE) about it. I am disappointed that there is an absence of commentary in the report on issues such as intraspinal chemotherapy, which is known to be associated with cases of adhesive arachnoiditis. Thus, children who achieve remission from their leukaemia are now living to face the interminable damage wrought by the toxic chemicals on their arachnoid membrane. I feel that the report has failed to address this sort of issue because it was limited to literature search which excluded "articles where arachnoiditis was an incidental finding not mentioned in the title or abstract." This may have limited the scope of the report somewhat, but I fully appreciate that arachnoiditis is a cross-discipline and thus problematic subject and one that requires sourcing reference material which, by and large, tends to be "descriptive and anecdotal and relate to a small number of cases". It is of interest and highly significant to note that the report found patient support groups to be a useful resource and, indeed, commented that whilst "it is not clear how coordinated and systematic research into arachnoiditis will proceed...support groups and clinicians working in the area remain an important impetus to future research." As we have already seen, there are remarkably few specialist clinicians, so the impetus must devolve, as ever, to the support groups. I would like to take this opportunity to applaud the sterling work by the ASAMS group, in particular, Lynne Elmslie, Dr. Wendy Anderson and Denise Sumner. Despite their own illnesses, these courageous individuals have worked incredibly hard to raise awareness and were undoubtedly instrumental in bringing the need for the report to the attention of the authorities. However, I think it reflects poorly on the medical profession that there is not a concomitant level of effort within the medical community as a whole. I sincerely hope that Governments in other countries may follow the New Zealand Ministry of Health example and commission similar report. As Dr. Burton remarks: "The literature review...should have been done a long time ago by Health agencies in the United States or England." I would very much like to see my home country lead the way in this and follow up on this report with further work, in particular working towards: 1) raised awareness and thus: 2) proactive management for arachnoiditis sufferers and 3) prevention of preventable cases. In particular, I would suggest that iatrogenic adhesive arachnoiditis be made a notifiable condition with its own specific ID code. (I note in New Zealand there is some difficulty with statistics due to use of meningitis codes). Sadly, adhesive arachnoiditis is not a historical condition, but one which persists, with new cases arising. Bearing in mind that these are predominantly iatrogenic in origin, it behoves the medical profession to avoid complacency and strive towards upholding the closing recommendation in the NZHTA report: "Prevention will be an important aspect of health strategies to address this condition given the recognised etiology...particularly the prevention of post-operative and post-injection complications." As
Napoleon remarked in 1820, "I do not want two diseases - one
nature-made, one doctor-made." Dr.
Sarah Smith (nee Andreae-Jones) MB BS |
