This page will be an on-going discussion, some from the Facebook group over at adults/teens with club feet, and some from Comments made directly here, as well as emailed contributions.
The focus of this post/page is on the issue of research ideas, taken mostly from the perspective of being in a position where we clubbies directly conduct this research ourselves. The initiating post will be reproduced here as the starting point of the discussion. Following that will be contributions by any interested participant. This is as much to create a permanent record of this discussion as it is to move the ball further down the road toward initiation of actual research.
I urge anyone who is interested in taking this effort seriously to become engaged in the discussion.
If you have additional ideas for inclusion into this list, please let me know.
I would also like to include here, as a starting point, a possible definition of post-club feet:
Post-club feet refers to various sequelae of infant club-foot treatments - casting and manipulation, surgeries, bracing, etc., and how those sequelae manifest in adults so treated by these various approaches and modalities. Such sequelae includes, but is not limited to, early arthritic changes, chronic pain, muscle weakness, early-onset chronic edema and pitted edema, slow or poor healing from subsequent surgical procedures, and variable life-choice and psychological impacts. Taken as a whole, such sequelae constitutes a clear syndrome as it relates to talipes, similar to the linkage between polio and post-polio syndrome.
Comments and critiques welcome.
And it is just this type of confusion of diagnostics, treatments, and sequelae that I believe scares off the medical community from taking on such research. I would, as a starting proposition, suggest a simplification of categories, if only to allow such research to begin. It may indeed be a process akin to peeling the layers of the onion. By using the first layer to break down the categories, subsequent layers can be focused better on taking each category apart with tweezers rather than a meat-ax, as the saying goes. Willy
Willy Kiyotte - Lucia, I think you are spot-on regarding controlling for these variables, though I strongly suspect there is still so much not understood about whether CF is actually ever a true stand-alone deformity. The more I study post-CF, the more I become convinced there is more to CF than the visible aspects of the defect. There are strong hints in research that has shown there is a cellular-level change in the muscles of the calf. But this also suggests that such a change may not merely be affecting the calf musculature, that the defect is broader than this.
As for a control group, this too is problematic - how would one define a control group as it would apply to post-CF? Would they be people who had never had treatment for their CF in the first place? Would they be people who did not have CF at all? Unlike the use of a control group in say, pharmaceutical research, we are looking here at people who have had mechanical interventions, who continue to suffer varying degrees of sequelae, whose treatments can vary wildly, of different ages, treated by clinicians whose approaches can vary, sometimes significantly. All of these make the research parameters that much more difficult, if one is seeking to do control group research.
I strongly suspect that initial research must focus on statistics - how many of this, what sort of that, etc. Get the numbers and the variables first, Then we at least can see the lay of the land, so to speak, with much better clarity than we have currently. How many post-CF folks also show other discernible conditions - SBO, CR, etc? How many are uni, bi, how many have had what surgeries, how many surgeries, at what age, with what outcomes, etc.
We also need contrast, which does suggest one potential control group - people treated solely with Ponsetti method. But this group would have to exclude anyone who had ANY surgeries, including a TAL, because the inclusion of any surgeries would skew your conclusions heavily.
Anyone else have input on this? The only way we will get such research going is to get strong input by many clubbies - don't be shy!!
The focus of this post/page is on the issue of research ideas, taken mostly from the perspective of being in a position where we clubbies directly conduct this research ourselves. The initiating post will be reproduced here as the starting point of the discussion. Following that will be contributions by any interested participant. This is as much to create a permanent record of this discussion as it is to move the ball further down the road toward initiation of actual research.
I urge anyone who is interested in taking this effort seriously to become engaged in the discussion.
Proposed Topics for Future Research into Post-Club Feet Syndrome
- What follows is a preliminary list of proposed research topics aimed at the medical profession as they relate to treatments, understanding, and effective outcomes for the post-club foot population: This will be posted also on the on-line forum white board for discussion.
- Lower-leg muscular atrophy sequelae to Talipes equino-varus: variability, influence on childhood treatment options and practices, and impact on tendencies toward early-onset arthritic changes.
- Alternatives to fusion: mechanical interventions, manipulation, and non-osseous surgical options.
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- Not all CF is equal – presentation variables (uni/bi; fetal development v. genetic causation; degree of deformity; accompanying factors ((spina bifida, cerebral palsy, etc.)) etc.), and their influence on outcomes to standard CF treatments. Link such variables and outcomes to post-club foot sequelae.
- Tendon surgeries in adult post-club feet. Rationale and technique as alternatives to current treatment response.
- 40+ year follow-up studies; comparative evaluations between Ponsetti and Kite, et. al. techniques. Impact of both approaches on adult post-club feet deterioration.
- Follow-up to the Dobbs study on long-term outcomes: excessive surgeries as causal factor to post-club foot failure rates.
- Alternatives to narcotic pain remediation for chronic post-club foot pain.
If you have additional ideas for inclusion into this list, please let me know.
I would also like to include here, as a starting point, a possible definition of post-club feet:
Post-club feet refers to various sequelae of infant club-foot treatments - casting and manipulation, surgeries, bracing, etc., and how those sequelae manifest in adults so treated by these various approaches and modalities. Such sequelae includes, but is not limited to, early arthritic changes, chronic pain, muscle weakness, early-onset chronic edema and pitted edema, slow or poor healing from subsequent surgical procedures, and variable life-choice and psychological impacts. Taken as a whole, such sequelae constitutes a clear syndrome as it relates to talipes, similar to the linkage between polio and post-polio syndrome.
Comments and critiques welcome.
And it is just this type of confusion of diagnostics, treatments, and sequelae that I believe scares off the medical community from taking on such research. I would, as a starting proposition, suggest a simplification of categories, if only to allow such research to begin. It may indeed be a process akin to peeling the layers of the onion. By using the first layer to break down the categories, subsequent layers can be focused better on taking each category apart with tweezers rather than a meat-ax, as the saying goes. Willy
One example might be to (attempt) differentiate between a)pure CF, no discernible accompaniment by other congenital issues. b) Cf with spina bifida occulta, non-diagnosed in infancy. c) CF and SPO, early diagnosis, no treatment for the SBO. d) CF, SBO, early diag., treatments employed. e) CF accompanying other gross defect, i.e., full-on Spina Bifida, mylomeningeciel, etc. It could be argued that a control group is unnecessary, except as a basis for comparison, as how would one describe a traditional control group for something of this order? Would such a group be of any of the above categories, but intentionally untreated? Serious ethical issues there, it seems. But by breaking the categories up as above, you would at minimum be able to control for the other variables vis-a-vis pure CF, and its attendant treatment outcomes, would you not? Willy
Sue Lyon Lucia, you are quite right. Any formal/quantitative research would need the controls you referred to, much tighter definitions and account for other varibles. My initial thought was for qualitative research to see what complexities and experiential information was out there and maybe generate theories to be tested against. Talipes is a reasonably generic term for a range of anomolies. My understanding is that structurally there are 5 main types with a further 4 from combinations of these - so 9 altogether where there is actual primary bone malformation. This group counts for 80% of cases and is reasonably evenly split between bi and uni. This is the group I fall into so where my perceptions come from. The other 20% are associated with other syndromes, particularly SBO and cerebral palsy and result more neuromuscular deficits. Is this latter statement in keeping with anyone elses understanding?
Lucia Quental Willy, if you are basing your definition of what constitutes club foot and post cf syndrome ( Post-club feet refers to various sequelae of infant club-foot treatments) on this group, we need to define more strictly "club foot". It seems to me that there's a lot os cases where you have a cluster of congenital deformities (including SBO) that were diagnosed as just club foot these other conditions went sometimes untreated. This misdiagnosis may be one very relevant problem for research on post cf syndrome.
Lucia Quental My question is what symptoms are due to untreated spina bifida occulta or some other condition and not to the actual treatment of club feet? These are variables that need to be controlled in this kind of research. You also may need a control group.Willy Kiyotte - Lucia, I think you are spot-on regarding controlling for these variables, though I strongly suspect there is still so much not understood about whether CF is actually ever a true stand-alone deformity. The more I study post-CF, the more I become convinced there is more to CF than the visible aspects of the defect. There are strong hints in research that has shown there is a cellular-level change in the muscles of the calf. But this also suggests that such a change may not merely be affecting the calf musculature, that the defect is broader than this.
As for a control group, this too is problematic - how would one define a control group as it would apply to post-CF? Would they be people who had never had treatment for their CF in the first place? Would they be people who did not have CF at all? Unlike the use of a control group in say, pharmaceutical research, we are looking here at people who have had mechanical interventions, who continue to suffer varying degrees of sequelae, whose treatments can vary wildly, of different ages, treated by clinicians whose approaches can vary, sometimes significantly. All of these make the research parameters that much more difficult, if one is seeking to do control group research.
I strongly suspect that initial research must focus on statistics - how many of this, what sort of that, etc. Get the numbers and the variables first, Then we at least can see the lay of the land, so to speak, with much better clarity than we have currently. How many post-CF folks also show other discernible conditions - SBO, CR, etc? How many are uni, bi, how many have had what surgeries, how many surgeries, at what age, with what outcomes, etc.
We also need contrast, which does suggest one potential control group - people treated solely with Ponsetti method. But this group would have to exclude anyone who had ANY surgeries, including a TAL, because the inclusion of any surgeries would skew your conclusions heavily.
Anyone else have input on this? The only way we will get such research going is to get strong input by many clubbies - don't be shy!!
