04 NOVEMBER 2021
‘I was 17 when diagnosed and a good long-term plan was never discussed with me. I am 25 now and improved, but still struggling. Seems to be a lot of short-term fixes but no real ‘whole body’ approach or information about the long-term impact of treatment options.’
It is often said that chronic pain is an invisible condition afflicting millions, costing the individual and community enormous sums, impacting productivity and most importantly taking a huge toll on those forced to live with it.
Orofacial pain encompasses several complex painful conditions involving the mouth, face, head and adjacent regions. All of these conditions involve structures that are closely associated with essential functions of eating, breathing, communication, sight and hearing.
These pain conditions have pain intensity ratings similar to or greater than back pain, cancer pain and arthritis.
They are also arguably important to appearance, self-esteem and personal expression and persistent pain in this area can deeply affect an individual’s health physically, socially and emotionally.
A recent international study concluded that orofacial pain leads to more days of work missed than any other site of pain.
One of the major challenges in managing this form of chronic pain is getting a sound diagnosis from a practitioner with specialised knowledge. This can be difficult to do given that a sophisticated multidisciplinary approach to treatment for this condition can fall between the cracks of medical or dental specialties, is inconsistent and is not a primary focus of care.
These factors create a situation in which few clinicians ever attain specialist knowledge and expertise to effectively treat the range of orofacial pain conditions. It also suggests that the current situation needs a drastic overhaul if the needs of people living with these conditions are to be adequately managed.
The resounding response we received from consumers when we recently ran a survey on social media and asked them about their experiences confirmed that there is a significant problem with the recognition and management of orofacial pain in Australia.
In summary, we found that the most common forms of orofacial pain (from 61 responses) were toothache (13%), otheroral pain/jaw pain (13%), muscle and joint pain (temporomandibular disorders) (25.3%), nerve pain (orofacial neuropathic) (26%) and headache/migraine (22.7%).
Of these people, 92% had consulted a health practitioner, dental being most common although neurologists, pain specialists and GP were also consulted.
Consumers report a mixture of responses about their satisfaction with treatment responses. However, almost all agree that there is a problem with recognition and management of orofacial pain. A similar proportion noted the need for improved training and education. This would bring Australia into line with other countries who have formally recognised orofacial pain as a specialty (usually of dentistry).
Also considered important by consumers are the identification of specialists in this area as well as improved access and care by dedicated specialists to protect consumers from non-evidence based and inappropriate treatments by health practitioners that do not have the knowledge and training to service this population.
There is no consistent pathway of care for orofacial pain patients. They often bounce around the system from GP to dentist, pain or other specialists including neurologists and trial multiple treatments. Some of the treatments they receive will not have an evidence base or can be invasive and irreversible (including some surgical procedures). All of this only contributes to the pain experienced by people with these conditions. It also contributes to out-of-pocket expenses that can be high.
A clinical audit of a large multidisciplinary pain service in NSW reported that, on average, orofacial pain patients live with pain for 11 years before diagnosis and consult 12 health professionals. In the words of a Painaustralia survey respondent:
‘Horrifying to be honest. Hard to feel safe, hard to trust, and becomes an enormous challenge to save up so much money to get either very little, or no results and the profession seems to be ‘winging it’.
All the while, this adds up to a significant impact on daily activities including work, relationships, sleep and quality of life. Of course, depression and anxiety are also increased as a result.
Many countries including Sweden, Brazil, Costa Rica, Panama, Korea, the Netherlands, the US and Japan have recognised the need for greater awareness, understanding and high quality, evidence-based management of orofacial pain. When is Australia going to catch up and provide the standard of care necessary to meet the needs of this vulnerable population?
Carol Bennett, CEO
Full results of our consumer survey can be found here: https://www.painaustralia.org.au/static/uploads/files/orofacial-pain-survey-report-wfuycechtmlh.pdf
Reference: Australian and New Zealand Academy of Orofacial Pain: Improving orofacial pain management in Australia and New Zealand. 2021.