On a scale of one to 10…

Oncologists treat cancer, neurologists specialise in brain disorders, immunologists diagnose infectious diseases, and a host of other specialists tackle ailments from broken bones to ruptured arteries. But who manages the pain associated with those conditions? Too often, the answer is “nobody”.

“Healthcare has traditionally been siloed,” says Dr Tim Luckett, a Research Fellow in Health at the University of Technology, Sydney (UTS). “Yet pain has a huge impact on people’s quality of life,” says Dr Luckett, a member of a collaborative project designed to improve pain management among cancer sufferers.

One goal is to put patients in charge of their pain management with the support of their medical team. “Empowering patients to be more involved in their own pain management is very important in achieving pain relief,” says Dr Luckett’s collaborator, palliative care physician Dr Melanie Lovell from Sydney University and HammondCare.

Along with UTS colleagues Professor Jane Phillips, Professor Trish Davidson, Adjunct Professor David Currow and Professor Louise Ryan, Dr Luckett and Dr Lovell have been awarded nearly $1 million by the National Breast Cancer Foundation (NBCF) to trial a national clinical pathway for the management of pain in people with advanced breast and other cancers.

The pathway builds on the fact that, thanks to advances in diagnosis and treatment, cancer is becoming a chronic condition, like arthritis or diabetes. People often live with the disease – and the pain it causes – for many years.

Unfortunately, research shows that quality pain management is subject to a “postcode” lottery, resulting in under-identification, under-management and poor co-ordination of assistance for many people who don’t have adequate services near their homes.

“Generally speaking, there’s concern that people in regional and rural areas, especially, may not receive best-practice treatments,” Dr Luckett says. And that is despite the existence of national guidelines for pain management. The NBCF group developed and launched the guidelines last November at the annual meeting of the Clinical Oncological Society of Australia.

Why aren’t guidelines, national or international, solving the problem?  “That’s a good question,” Dr Luckett says.

Even if doctors know about guidelines, he says, surveys suggest many do not have time to help patients with pain or they think pain management is somebody else’s department. As well, doctors unfamiliar with the guidelines are often unnecessarily reluctant to prescribe strong opioids even when they’re recommended.

Additionally, patients don’t always tell their doctor they’re in pain. Those from non-English-speaking backgrounds, in particular, may find it hard to explain their needs or to navigate the healthcare system.  Many patients assume pain is inevitable and untreatable. Others don’t want their pain masked by drugs.

“They see pain as an indicator of tumour activity,” says Dr Luckett. “Pain is a barometer, keeping them in touch with the cancer.”

The NBCF grant will allow Dr Luckett, Dr Lovell and their colleagues to lower such barriers to good pain management by putting their clinical pathway – the culmination of four years of work – to the test.

“The [trial] will provide clinicians with a screening tool containing step-by-step instructions on how to assess and manage cancer pain in their patients,” Dr Lovell says. “A number of supporting resources will also be developed, including a pain self-management guide for patients, a quality improvement tool for health services to monitor their improvements, and an online training program for health professionals.”

The trial will begin within weeks, Dr Luckett says. The team plans to involve 12 to 14 oncology or palliative care centres and about 100 patients from each centre. The trial is funded to run for four years.

“The good news is that most pain can be controlled to a good degree,” says Dr Luckett. “Results from previous studies of the individual elements of our program suggest that widespread adoption of our clinical pathway will make that true, regardless of postcode.”

(Source: University of Technology – Sydney)