Patient-Driven Clubfoot Research - Where are we?
A lot of conditions or disabilities have really good patient-driven solutions that were developed over the last 20 to 30 years.
Major advances in Cancer and HIV/Aids have reduced the impact of those conditions and resulted in new, less invasive treatments, increased survival rates and medications with reduced 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 or CTEV).
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 the condition. It is also believed that it is easily fixed, cured or treatable and therefore it receives little attention. Therefore it is not surprising that treatments have no advanced much the last 100 years. Instead of bandages, only casts are being used.
Surgery usually fails and cause more problems. There is no cure yet. The condition is also touched, influenced or complicated by almost 200 other conditions. All of these conditions are considered very serious disabilities, for example Spina Bifida, and various other muscular dystrophy type conditions. Permanent disability after the teen years seems inevitable for many.
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 treatment and bracing is available. A treatment standard may be good but it cannot possibly address or be successful for each case. Since the underlying complexities vary vastly, and misdiagnosis is common, treatment should be more a-la-cart to address each case based on it's unique complexities. Sometimes more than one syndrome is present in the same patient.
There are therefore many different types of clubfoot, each with their own set of underlying complexities. The different types were never really discussed or published about, nor were underlying complexities identified.
After some social media education efforts by the Clubfoot Research Foundation the past seven years, we now notice for the first time that research publications are starting to change their tone and introductions when new research is published. A great achievement for a professional discussion forum that has only been going for 7 years. For the first time publications are now stating that there are complexities and permanent disabilities.
“It is tempting, if the only tool you have is a hammer, to treat everything as if it were a nail.” —Abraham Maslow. However, is this appropriate based on what we all have learned the last 7 years about this condition? There are many reasons beyond the one above as to why medical professionals should include patient feedback in their consideration of a treatment. Not only is patient feedback important in terms of learning about successful outcomes, it also provides evidence of failures and complexities.
Why indeed 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 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! Likewise, 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 mentioned if it cannot be supported with appropriate high quality 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.
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.
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. 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.
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 Foundation and its forums opens up new opportunities for researchers. Some groups even publish guidelines eventually, driving treatment towards new solutions.
There are a small number of experts who actively study this condition and as a result a few scientific breakthroughs have been evident. Credit is definitely due to 2 treatment facilities who has done some research that added new knowledge to the condition. At least some efforts have yielded new information in particular at a time no one was looking or asking for it. 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! In 2018 another new clubfoot gene were studied and discovered for severe cases by the University of Aberdeen. Major genetic research still has to start and genetic databases need to be established. Several small ones exist but they need more data, more samples and more participants in their regions. The CRF is hopeful that it will play a role in finding funding for more research projects which in turn may just end up reducing to the permanent disability rate present in this condition.