Communication key to preventing rare bone disease

Sunderland research into rare bone disease

Published on 20 March 2019

A rare disease of the jaw which causes pain for sufferers and can lead to reconstructive surgery could be prevented if healthcare professionals improve their communication, research reveals.

Osteonecrosis, which means death of bone tissue, can develop in the jaw following certain dental procedures, such as tooth extractions, in some patients who are prescribed certain medicines, known as bisphosphonates, for the treatment of osteoporosis and cancer.

A team of researchers at the University of Sunderland carried out a study into the disease, and the impact it had on patients’ lives, funded by Pharmacy Research UK and a UK Clinical Pharmacy Association Clinical Research Grant.

The study found that much more communication was needed between those GPs prescribing the medicine to patients, pharmacists supplying the medicines and dentists managing patient’s oral health.

Lead researcher Andrew Sturrock, Principal Lecturer and Programme Leader for the Master of Pharmacy programme, explained: “Osteonecrosis of the jaw is a really rare side effect that some patients taking particular medicines experience if they require a dental extraction, in rare cases the bone dies. It causes significant pain and is incredibly difficult to treat, it can be quite disfiguring in some cases.

“All of our evidence suggests that the best way to treat this is to prevent it happening in the first place, making sure a patient prescribed these medicines have any dental treatment done before they start taking the drug and ensuring they maintain good oral hygiene and good oral health whilst taking the medicine.

“Our findings, however, established that this was not being done. GPs and pharmacists weren’t telling people about the risks for all sorts of reasons; because the disease is so rare, it wasn’t a priority, it’s been forgotten about, or in some cases the patient didn’t disclose they were taking the medicine when needing to have dental treatment.

“Ultimately, the patients were poorly informed about the disease and the preventive measures that should be taken. This is a communication issue and dentists are definitely out of the loop, they want to be more involved in the care of this patient group at a much earlier stage.

“The patients just expect the system to work and it’s up to healthcare professionals to improve and make sure there is good communication to prevent osteonecrosis of the jaw.”

The team interviewed 23 patients nationwide who described significant physical, psychological and social consequences as a result of developing this disease, from suffering depression due to the pain, to feeling embarrassed eating in front of others.

Their only treatment is pain relief, or sometimes surgery can be performed in which the dead bone is removed, this can be a small operation or can lead to patients needing reconstructive surgery. Patients can become prone to infections and sometimes require regular courses of antibiotics and ongoing dental management.

Andrew said: “Although it’s a rare disease, there are still big costs to the NHS in terms of on-going treatment. Yet it is fairly simple for prescribers and pharmacists to say ‘this is your new drug, this is how you take it and ensure you see you dentist before taking it’.”

Andrew explained that dentists are receptive to getting referrals from other professional groups, as he explains it is easier to treat their dental needs before they begin their medication.

Philip Preshaw, a dental professor and a consultant in restorative dentistry, said: “Medication-related osteonecrosis of the jaw is thankfully quite rare, but when it does occur it has a profound impact on patients’ quality of life and can cause significant levels of pain. It is also very difficult to treat, as surgical procedures to remove the necrotic bone can sometimes fail due to poor blood supply in the region.

“Prevention is always better than cure, and better communication between doctors, pharmacists and dentists would ensure that the dental team know which patients are going to start taking the implicated medications, so that they can assess and optimize their oral health before they start taking them, to reduce the risk of osteonecrosis developing later.”

Professor Scott Wilkes, Head of the School of Medicine at the University of Sunderland, Professor of General Practice and Primary Care, and part-time GP in North Tyneside, added: “GPs see a lot of patients who take bisphosphonate medications to protect against osteoporosis and Pharmacists dispense a lot of these medications every day.

“There are two opportunities missed for relatively simple interventions. The first is brief advice from the GP or Pharmacist to attend a dental check-up and the second is fully informed consent about the risk albeit uncommon. Pharmacy may have an opportunity to embed such a service into a New Medicines Service. Although rare, it is a devastating disease and any reduction in the number of cases is welcome.”

The research has now been published in the BMJ Open: https://bmjopen.bmj.com/content/9/3/e024376