It's made me think a lot about the gap in the evidence for diagnosis and treatment of DDH. Well, when I say 'gap' what I mean is 'crater.' There is a crater in the evidence relating to DDH. It is big.
Think about it this way: DDH is a lifelong condition. It doesn't 'just happen in babies' and hip pain is not confined to the elderly. Usually when it's caught in infancy there are treatments a baby or toddler might have to undergo, late diagnosis of DDH almost always results in more invasive treatments, carving more time out of childhood with surgeries, hospital stays and recovery times (which also inevitably effects families and carers). Then you have those who have continual pain and problems into young adulthood, or who struggle to gain a diagnosis despite their symptoms, those who subsequently develop OA and require a hip replacement as early as their late teens. Those of us in our 20s and 30s know all too well the struggles in finding the source of our pain, and then, of course, hip replacements in the under 50s isn't a completely unrecognised phenomenon. There are times in this life-journey when the hip may be asymptomatic and other times when surgery and rehab is necessary.
Think about it this way: DDH is a lifelong condition. It doesn't 'just happen in babies' and hip pain is not confined to the elderly. Usually when it's caught in infancy there are treatments a baby or toddler might have to undergo, late diagnosis of DDH almost always results in more invasive treatments, carving more time out of childhood with surgeries, hospital stays and recovery times (which also inevitably effects families and carers). Then you have those who have continual pain and problems into young adulthood, or who struggle to gain a diagnosis despite their symptoms, those who subsequently develop OA and require a hip replacement as early as their late teens. Those of us in our 20s and 30s know all too well the struggles in finding the source of our pain, and then, of course, hip replacements in the under 50s isn't a completely unrecognised phenomenon. There are times in this life-journey when the hip may be asymptomatic and other times when surgery and rehab is necessary.
The evidence base lies mostly at both ends of this spectrum, plenty on hip replacements in older patients, lots to do with screening and treatment of DDH in babies, there is even loads to do with the link between DDH and OA. There is virtually nothing relating to the diagnostic signs and symptoms in other age brackets, and nothing at all on what the correct treatment pathway should be in these instances. There is some limited and lower quality evidence to do with outcomes of osteotomy surgeries and how long they can delay a THR. Nothing on physiotherapy input, conservative measures or post-op rehab or what could be the best type of management during asymptomatic periods. Nada.
Unfortunately, you're going to have to take my word on this No-Evidence thing because I have no evidence to back up this claim (aside from the 'No Results' screen that comes up after my amateur literature searches).
Recently I met some people from the online support group I am part of and some of their stories, again, seemed to demonstrate this lack of awareness in health practitioners. One said that her mum had an inkling there was something not quite right even when she was a baby. She was in a car crash much later in life, and had a full body CT scan - yet the dysplasia was not noticed. After some too-ing and fro-ing in her 20s she eventually found a hip specialist and received a diagnosis. Another person was sent to a psychiatrist as her hip x-ray came back apparently clear at first and so nobody was able to explain the cause of her symptoms.
Recently I met some people from the online support group I am part of and some of their stories, again, seemed to demonstrate this lack of awareness in health practitioners. One said that her mum had an inkling there was something not quite right even when she was a baby. She was in a car crash much later in life, and had a full body CT scan - yet the dysplasia was not noticed. After some too-ing and fro-ing in her 20s she eventually found a hip specialist and received a diagnosis. Another person was sent to a psychiatrist as her hip x-ray came back apparently clear at first and so nobody was able to explain the cause of her symptoms.
I've
heard many similar stories of exasperation through this group, and this is echoed in the preliminary research of adult hip dysplasia that is being undertaken. How does this type of evidence compare to the statistical
analysis and methodological rigour of Case Studies, RCTs, Systematic
Reviews and Meta-analyses? What if there is no evidence in that form, and all we have to go on is what patients say? Qualitative data of this kind, especially when a recurring theme is established, can be quite powerful, I believe.
We're
taught that practice needs to be informed by high quality evidence, but
what are the implications on practice and for patients when evidence
about a certain condition is lacking? Do we not treat the patient for
fear of getting it wrong? Do we reason that their symptoms are psychosomatic because things aren't adding up for us? This obviously has to be done with great care.
I've heard it said by patients and clinicians that osteotomy surgeries are sometimes considered too
risky, with too little quality evidence for them to be considered as a
worthwhile treatment. It is important, though, to think of the choices that are open to a patient in this kind of scenario, particularly when someone's mobility can be affected so much, altering life decisions greatly. There are patients who have had successful outcomes for many years post-op. 'Evidence' can come in informal ways too and to not understand that has the potential of leaving us blinkered.
I'm excited to have participated in the beginning stages of a research plan taking place that is looking into hip conditions such as this. Looks like there's lots to be done!
