So, your a physio working in outpatients, or something similar, and one of your patients is presenting with a hip complaint that turns out to be hip dysplasia. You've appropriately referred on for an x-ray or to a hip specialist and discharged, your role as a
physio is now over, right? Well... I'm not sure...
I decided to put together some thoughts from a patient's perspective on what could be helpful for physios to think about when seeing a patient with potential or diagnosed adult hip dysplasia. (There are obviously many other pathologies to have in your differential diagnosis, but this post is, as always, just about hip dysplasia).
Continuity of Care
The referral pathway is often where hip dysplasia patients run into problems, so if you are referring a patient on, or back to their GP, you might want to consider whether you could see your patient again after they see an orthopaedic or hip consultant.
Firstly, it gives your patient a point of call to try and prevent that domino effect from occuring of being passed on to multiple health professionals.
Secondly, you want to know what they have been told - what diagnosis and advice have they been given and does it seem to make sense? This is hard to discern if you haven't seen their x-rays or are not a specialist in this area (as most of us aren't), but I suppose more obvious if, for example, your patient is continuing not to improve with physiotherapy input but has been told their hip is fine from imaging reports. Or they may have been given an accurate diagnosis, but might have been told their only option is a THR when they might be a good candidate for PAO surgery. Scenarios such as these might suggest a referral to a more specialist hip clinic. It is also important to pay attention to a patient who seems to improve with physio input but for whom symptoms reoccur upon returning to sport or activity - the early symptoms can be mild and subtle.
Thirdly, being given a diagnosis of adult hip dysplasia can be overwhelming and as a physio you are in a perfect position to educate your patient about this condition, what choices they have and the long term consequences. Give them a chance to ask questions or you could even point them to one of the online support groups which can help them get their head around it (some examples here).
X-ray referral
It has been known for patients with hip dysplasia to be told that their x-ray is 'clear,' even for those with obvious dysplasia. I am not sure why this seems to happen with some people, but if you suspect hip dysplasia, you could help with this by being specific in your x-ray referral request, or referral back to the patient's GP. Perhaps wording it specifically to ask for an AP and Lateral view of the hip joint, or to measure the centre edge angle of the acetabulum could draw the attention to any potential hip dysplasia.
Who to refer to
If your patient has seen a general orthopaedic consultant or registrar, and been diagnosed with hip dysplasia, or if it was somebody who deals more with hip joint pathologies in the older population, it is really important that they are referred to a young adult hip specialist who has specific expertise in treating adult hip dysplasia.
I believe there are a lot of young adult hip specialists around who deal with FAI (Femoro-Acetabular Impingement), due to the popularisation of this concept in recent years. There also seem to be some hospitals who are great at undertaking hip replacements in younger adults (i.e. under 50 years of age). However, there are very few orthopaedic consultants who specialise in treating adult hip dysplasia, and who have a high level of expertise with this condition and with PAO surgery. In the UK the impression I get is that there are 4 or 5 specialists across the country who are high volume PAO surgeons and who seem to produce more consistently good outcomes with their patients. This is the impression I get from clinicians, academics and other patients' experiences.
It is unfortunate that in many cases this referral may mean a patient having to travel further afield, and not all people have the means to do this. But it is really important that they understand the options open to them and what the consequences of those options are. Remember, a patient seeing the right specialist at the right time may ultimately mean the difference between them living with long term disability or being successfully treated and improving pain and function.
The small number of specialist hip dysplasia consultants across the country can make it difficult for patients to find the right surgeon for them, and you are well placed as a physio to facilitate considerations about this. Patients often take a variety of things into account when looking for the right surgeon. Some considerations might be:
- What volume of PAO surgeries does this surgeon undertake?
- What sorts of outcomes do they achieve? For example, how many years after PAOs do their patients tend to undergo THRs?
- Do they liaise effectively with their MDT team during diagnostics, surgery planning, post-op hospital care and rehab?
- Do they consider psychological factors and, if necessary, comorbidites in decisions about surgery?
- Do they encourage physiotherapy input before or as well as opting for surgery, or have they jumped into a surgery decision prematurely?
- Conversely, do they delay a decision about PAO surgery for their patient indefinitely?
- If PAO surgery is not advised for your patient, are they clear on why this is?
- Are they willing to liaise with you, the physiotherapist if there is confusion over diagnosis or complicating factors?
- Does your patient feel they have been listened to and their needs have been considered?
Again, it might be worth following up with your patient after the referral, for the reasons I've mentioned above.
Communicate, communicate, communicate
You,
the patient, and anyone else involved in their care need to be on the
same page about what the diagnosis and treatment plan is. You could ask
to be copied into clinic letters from your patient's consultant, or ask
them to bring in clinic letters to copy. Be clear if writing to other
health professionals, if your patient's symptoms are infrequent or very
intermittent, then state this. Don't just assume it has self-resolved.
The genetic factor
Hip Dysplasia can sometimes run in families (Carroll et al, 2016). Be aware that with a new diagnosis of
hip dysplasia, a patient with young children or infants may want to
speak to their GP about hip dysplasia screening for their children, and
what signs to look out for that may indicate they should have them
checked. (Steps Charity have some guidance here).
The emotional side
The
experience of being diagnosed with hip dysplasia can bring a whole
range of different emotions for a person. They might feel relieved that
they've found a solution to their problem, or they might feel angry if
it's taken a long time to receive the diagnosis. Those with an infant
diagnosis may well be more accepting and may have always known that
things will get worse at some point, but might be unaware that PAO could
be a potential option to them at this stage. Or they might be in shock
having thought the dysplasia was treated successfully as a newborn.
Allowing time in a clinic appointment to listen to this will help you
understand where your patient is coming from.
Please be compassionate with your hippie patient. There may be other lifestyle factors contributing to their pain, they may even be a little overweight, because it's quite hard to exercise when you're in pain. But it is important to recognise that this is not their fault. No one can change the shape of their own acetabulum, or make it grow more, as the case may be!
Chronic pain management
It seems research around pain science has grown immensely in recent years, and this has improved our understanding of the management of long term pain conditions. There are often many contributing factors to a person's pain experience and I'm glad this is considered when seeing patient with long term pain. I must admit though, it does frustrate me when I hear from
others with hip dysplasia that they have been given pain education by
physios that excludes or denies any biological reason for their pain. Please don't do this. Just don't do it.
About PAO rehab...
If you're seeing a patient with hip dysplasia during their PAO recovery: In most cases it's
long (it's more than recovery from THR). You may be seeing your patient for up to a year, more if they
have more surgery planned. So get used to them, knuckle down for the
ride. They may well whine a lot (I have done!), but keep the end in mind: a fuller, pain-free life.
Be patient.
Tell them they are amazing. They will be grateful (if a little cheesed out)
That sums up my "Physio for Hippies 101," but if I think of any more tips, I will be sure to share them in a future episode!
Reference
Carroll, K. L., Schiffern, A. N., Murray, K. A., Stevenson, D. A., Viskochil, D. H., Reha Toydemir, R., MacWilliams, B. A. & Roach, J. W. (2016) The Occurrence of Occult Acetabular Dysplasia in Relatives of Individuals With Developmental Dysplasia of the Hip. Journal of Paediatric Orthopaedics, 36. 96-11
