Get CreActive – Raising Awareness of Adult Hip Dysplasia18 February 2021
Adult Hip Dysplasia
Hip Dysplasia means that the bones of the hip joint are not aligned properly. It is a general term for hip instability, dislocation, or shallowness of the hip socket. Hip instability and dislocation are more likely to occur in children, while a shallow socket which is stable is more often discovered in adolescence or adulthood.
Hip dysplasia diagnosed during adolescence or adulthood is called acetabular dysplasia because the socket (acetabulum) is shallow and does not fully support the ball (femoral head). Some adults have hip problems unresolved from instability of their hip during childhood, but most adults with hip dysplasia don’t know they have a problem with their hip until it suddenly starts hurting.
The main problem is that, a joint that is the wrong shape or too shallow will wear out faster than one that has a more normal shape/alignment. The hip joint is covered by a smooth surface – a thin layer of cartilage which enables friction free, easy movement. If the cartilage is worn down, it can’t be repaired or re-grown by the body – so this cartilage surface needs to last a lifetime, or stiffness and pain will occur as the joint wears out.
How many people does it effect?
Hip dysplasia is very common and effects lots of people – both children and adults. The infographic below from the Institute of Hip Dysplasia summarises the global statistics.
Although all babies in the UK are screened for hip instability, detecting hip dysplasia through a bedside assessment can be difficult to do. A recent study of orthopaedic surgeons in England concluded that “the current selective screening for neonatal hip dysplasia is ineffective and the percentage of infants diagnosed late is unacceptably high.” The problem with late diagnosis is that the window of opportunity for early management is lost and late diagnosis may mean poorer outcomes in the long term.
It is this group of people who are not diagnosed as infants and whose hip dysplasia is not discovered until they are teenagers or in adulthood that is our current research focus.
Key issues for young adults with hip dysplasia
Because the hip is maligned, the surfaces of the hip joint wear away more quickly in people with hip dysplasia. The presence of a shallow socket often leads to early onset osteoarthritis (OA) and associated debilitating pain at a very early age, usually after the person reaches skeletal maturity (Cooperman et al 1983). Hip dysplasia represents a significant worldwide disease burden and is thought to be the cause of 25%–43% of end stage OA of the hip (Coobs et al. 2015). As a result, hip dysplasia represents the single largest cause for total hip replacement (THR) in young adults with 48.4% of patients under 50 years old undergoing THR (Versus Arthritis 2019). Having a THR as a younger adult has significant long-term implications including the possibility of needing multiple episodes of joint revision surgery over a lifetime. However, joint revision surgery is not always successful and preservation of the hip and delaying THR is critical.
Young adults with hip dysplasia often start to experience pain in their 20s or 30s (Dezateux and Rosendahl 2007) and an inability to manage this pain is often the core driver for early THR. The impact of pain can reach into every aspect of the lives of young adults with hip dysplasia, including reduced social engagement with family and friends, intimacy with partners; missing out on developmental milestones (such as going to university, starting a family), difficulties exercising and developing dependencies on pain killers. Young adults with hip dysplasia report experiencing anxiety and insomnia (Prather 2018), changes to their body image and self-esteem as pain often leads to postural and gait problems too. Young adults with hip dysplasia have also reported feeling that their pain is not taken seriously by health care professionals.
Without appropriate timely treatment, hip dysplasia in young adults can lead to chronic disability and poor health. Delays in diagnosis are commonly reported leaving some people with limited treatment options and poorer outcomes.
Multiple invasive surgeries with long rehabilitation
People with hip dysplasia often require multiple and invasive surgeries which can lead them to suffer a range of psychological challenges (e.g. body dysmorphia, depression and eating disorders) but also more widely in their life – including their physical health and ability to remain active. Sadly, they can experience chronic pain, insomnia, difficulty walking and moving at a time when they would normally be going to university, starting a career and/or having a family. The surgeries they do have are not always effective as too much cartilage has already been lost and and very small margins of error can make the difference between a well-functioning, pain free hip and a painful stiff hip that is not much improved by surgery.
Under-developed pre-hab and rehab post surgery
Despite the prevalence of this disorder and the physical disability that comes from ineffectual surgeries, the preparatory care for these young people before surgery and the rehabilitation on offer afterwards is under-developed. Although it is generally accepted that participation in regular exercise is safe for those with hip dysplasia, there is a lack of consensus globally between clinicians about pre and post op care. For those who do have surgery, existence of and getting access to specialist advice about pre and post-operative rehabilitation can be difficult, leaving some people with hip dysplasia feeling both unsure about what physical activity they can and can’t do and without a connection to a peer support group via local services, disabling them further.
Lack of specialist services
Young adults with hip dysplasia are also poorly served from a specialist health services perspective. There are very few specialist young adult hip centres existing in the UK. The main problem is that the hip surgeries developed to treat hip dysplasia are complicated and there are not enough surgeons who have learned to conduct these surgeries. This lack of specialist support means that many young adults with hip dysplasia cannot be supported to manage their condition locally and often have to travel for appointments and surgery.
Feeling isolated and disconnected
Because there is a lack of specialist services and local hubs, people with hip dysplasia tend to connect with one another online. Although various Facebook support groups have been set up which provide a vital source of peer support, people with hip dysplasia can go their whole lives without knowingly meeting someone else face to face with hip dysplasia.
Hope and opportunities
Surgical options to preserve the hip are ever improving – and for those who are diagnosed early on, who receive the best surgery at the right time, can and do lead active lives. There are a significant number of physiotherapists with a special interest in hips and specialist pelvic health physiotherapists who can offer people with hip dysplasia support pre and post surgery. Preservation of the hip can also be assisted through the management of pain and lifestyle changes which can delay the need for THR. Engagement with physical activity for example can be helpful and it’s this type of lifestyle change that we can support people with hip dysplasia with now. We can also look to resolve their sense of isolation and create opportunities for people with hip dysplasia to meet and share their experiences with one another.
Bringing these two aspects together we are working with a group of 20 young adults with hip dysplasia in a series of online gatherings and creative arts workshops to explore their experiences of living with hip dysplasia, learn about being physically active with this condition and setting research priorities for the future. The project, ‘Get CreActive’ will conclude with the creation of a website displaying shared experiences and key learning from the project which will be used as a resource and a hub for connecting young adults with hip dysplasia to each other.
The Get CreActive project is now underway. You can watch our journey by returning to this page to see our newest blogs, follow us on twitter @getcreative or Facebook – search ‘GetCreActive’.
If you’d like to learn more about hip dysplasia, you may find the resources created by the International hip dysplasia institute https://hipdysplasia.org/ or the patient-driven initiative https://miles4hips.com/ useful.
The Centre for Trials Research is a UKCRC-registered clinical trials unit. It is publicly-funded to enable applied research that informs policy in health and social care in Wales and the UK, and is currently running studies across Wales, the UK and internationally. The Centre is funded through Welsh government by Health and Care Research Wales, and Cancer Research UK.