Patient-Driven Clubfoot Research - Where are we?

Clubfoot Research Forum/Foundation 2017
Jun 2, 2017
4 min read

A lot of conditions or disabilities have really good patient-driven solutions that were developed over the last 20 to 30 years.

Think of all the advances Cancer and HIV/Aids have gained the last 20 years. New less invasive treatments, increased survival rates and medications with less side-effects. Numerous other conditions can boast similar accomplishments, however it seems that the scientific advances and investments have simply not been available to patients affected by the condition Clubfoot/Congenital Talipes Equinovarus.

Clubfoot (CTEV), affects more people on earth than any other disability. It is bigger than Cancer, affects more people's quality of life on earth than any other disability, yet few people know and understand what condition this is, if you should ask them. The condition is also touched, influenced or complicated by almost 200 other conditions, most of which can be considered a devastating diagnosis for any family.

That is why it is surprising that treatment has stayed the same over the last 50-80 years with little variation or progress and even less dedicated research aimed at solving the problem. Those organisations who collected the most donations did not spent those donations on any genetic or stem cell type research for this condition. Evidence in the majority of studies have been reported to be 'low'.

Single medical professionals have made some advances but they suffer an advocacy that tends to shoot down any new invention or product. This advocacy prefers techniques that date back to what Hippocrates did around 400 B.C! Selecting a treatment course today is daunting to say the least. In many countries only the most basic treament and bracing is available which cannot be successful for each and every case. There are many different types of CTEV each with their own set of underlying complexities. We know that, “It is tempting, if the only tool you have is a hammer, to treat everything as if it were a nail.” —Abraham Maslow said this a long time ago! The question is however, is this appropriate based on what is now known about this condition? Current treatments do no serve the whole patient population effectively and feedback from past patients have seem to have little effect.

Why should treatments be patient driven?

Well for one thing the recording of family histories in the medical field has been somewhat dismal over that last hundred years. Doctors still record everything about a mother and her expected baby, but the father's medical history is largely ignored or never documented, leaving big gaps in family medical histories. Some doctors outright dismiss family history or past patient feedback. In Clubfoot this has caused a complete misunderstanding of the nature of the condition and also resulted in dismal treatment options for older patients. In fact treatment options are almost non-existent for aging clubfoot patients, even in the first world economies.

In addition to the above, knowing more might decrease the failure rate of treatments. Since the internet started, people started to share their medical histories with one another, mostly in the hope of finding someone else that suffers the same fate or similarity in symptoms. Online groups these days share the latest scientific information and personal narratives of their experiences and most remarkably, sometimes as a natural consequence of discussions, develop new information and aggregate knowledge that researchers cannot ignore.

Patients are no longer passive recipients of care, but active crucial team members of the treatment team, involved in the decision-making process and they expect to be involved. More-over, patients demonstrate daily that they are knowledgeable and that they can explain research publications to their peers and they get involved in treatment surveillance. Patient-driven research is a bottom-up model and a model we like! There is firstly a small number of experts who actively studies this condition and as a result a few scientific breakthroughs have been evident. Dr. Matthew Dobbs and Christina Gurnett discovered some genetic information that they published about in 2011, but even their research publication and new brace designs faced strong opposition from those who prefer to stay put!

The knowledge base in published available literature is limited to a few topics. Having an online group has increased the number of questions asked and the number of research topics that is now available to researchers. Patients have learned over the years that doctors do not all have the same knowledge or the same experiences. They also learned that some treatment does not deliver according to the promises made in the past, therefore they are a crucial factor that should be considered in research. Their opinions have more validity than many would like to admit or consider.

Various online medical groups/communities have established tissue and specimen banks, formed clinical trial networks,and raised significant money for research that often cannot secure funding. The very existence of the Clubfoot Research Forum and Foundation opens up new opportunities for researchers. Some groups even publish guidelines eventually, driving treatment towards new solutions.

Patient engagement determines the successes in research! If medical practitioner driven solutions is opposing patient experiences and feedback, as is often found in research patient groups online, the condition faces reduced effective research opportunities in the future, as patient participation will be dismal.

Research should not be dictated or directed from the top down only and anecdotal statements without any detailed analysis and documentation, should not be published or even raised if it cannot be supported with appropriate evidence.

Anecdotal statements without enough research or evidence creates the impression inevitably that patient experiences are worthless to medical professionals or just simply viewed as unimportant. With a top-down approach, patients may stop to rely on their doctors to make decisions for them and are less likely to comply with instructions or make changes to ensure their own wellness.

Successful research is only achieved when all the role-players work together to broaden the assumptions made and the scope of projects in general. More effort needs to be made by medical practitioners to address the divide caused by the past top down approach, past anecdotal statements without substance or proof, that is heavily present in Clubfoot management in general and in many countries. The quality of assumptions made is equally important to the patient population. For example, many parents are told that one of the treatments will 'cure' the condition. Statements like that, used in media, really irks adult patients as they feel that has costed them appropriate treatment options that could have been developed long ago, if it was not for these statements.