Mariana Branco of Pain Alliance Europe explores issues around the diagnosis and treatment of chronic pain.
When we speak about management and treatment of chronic pain we need to start from the beginning. The simple reason for this is that, before you can start speaking about management or treatment, you need to know if someone has chronic pain. For that, you need a diagnosis.
The International Association for the Study of Pain (IASP) defines chronic pain as: ‘Pain that extends beyond the period of tissue healing and/or with low levels of identified pathology that are insufficient to explain the presence and/or extent of the pain and has persisted for more than three months.’
We also need to know the new classification of pain according to the latest International Classification of Diseases (ICD-11), which outlines Chronic Primary Pain and Chronic Secondary Pain.
Chronic Secondary Pain is divided into six subcategories: chronic cancer-related pain, chronic post-surgical or post-traumatic pain, chronic neuropathic pain, chronic secondary headache or orofacial pain, chronic secondary visceral pain and chronic secondary musculoskeletal pain.
It continues to be difficult for a healthcare professional (HCP) to diagnose chronic pain, as there are no easy tools at hand to do so. Routine checks such as blood pressure, blood analysis, X-ray, or MRI scans do not show the existence of chronic pain. No simple test is available. Here we have the first hurdle: there are no criteria to establish the existence of chronic pain.
According to a survey conducted by Pain Alliance Europe (PAE) in 2017 on the diagnosis and treatment of 3,490 patients from 17 European countries1, this is a major problem. One in five mentioned that they had to wait for over 10 years to get a diagnosis. This time lag was counted as starting from the first time they saw an HCP. Almost seven in 10 had to wait over 12 months to be diagnosed.
Bearing in mind the IASP criteria, longstanding chronic pain patients have been living with pain well before they even have a diagnosis. An additional negative point is the fact that people with chronic pain commonly wait much too long before they visit their physicians for their pain complaints. Many people talk themselves out of seeking help, fuelled by the stigma surrounding chronic pain. They think: ‘I’m getting older so I should expect some pain,’ ‘I don’t want to bother anyone, I’ll persevere,’ ‘I’ll rest, do less and it will pass,’ ‘I can’t go to the doctor every time it hurts,’ ‘No-one understands what I’m going through’.
Eventually, I have a diagnosis – where do I go from here?
As pain and chronic pain are as old as the world, one might expect that over time good practices would have been developed to tackle this problem; yet this is not so. Why is this the case?
Chronic pain is a complex health issue. It has biological, psychological, social, and economic elements. All these facets are interrelated, and the relationship between them depends on each individual’s circumstances, expectations, and capabilities. We are only speaking from the perspective of the person with chronic pain. This interaction will also be influenced by the way that person is viewed by society and how well they can deal with that scrutiny. Another important challenge for people with chronic pain is getting the opportunity to stay in their job or to find a new job fitted to their abilities. This has a huge impact on their financial independence.
That is the primary reason why no effective ‘one-size-fits-all’ therapies have been developed. What has been developed over time, as the scientific world began to realise a person is more than simply a body divided into parts, are the multidisciplinary programmes. But even these programmes do not meet the disparate needs of all patients, and they are often developed without any input from people with chronic pain or their representatives.
PAE’s survey1 found that almost four out of 10 respondents were not offered any additional therapy, remaining instead under their GP’s supervision. As if this were not disappointing enough, almost eight out of 10 were not satisfied with the therapy offered, reporting that it did not meet their expectations.
We have been addressing the biological aspects of chronic pain and what to do about it. However, we know there are other components which influence the quality of life (QoL) of people with chronic pain. Societal factors play an important role in this: the patient’s family situation, how their neighbours, friends, relatives and employers react, and so on; and everyday situations which confront patients with their shortcomings. The way society and employers approach people with chronic pain has been surveyed by PAE in their 2019 survey on pain and stigma2; and the results are, frankly, shocking.
In family settings, the environment where people should expect to feel ‘safe’, patients with chronic pain reported being confronted with stigmatised approaches. From partners, the rate is more than four out of 10. From relatives and friends, it is more than six out of 10. Even from caregivers, three out of 10 reported feeling stigmatised.
It is clear that these circumstances may contribute to psychological problems such as depression, anxiety, and even suicide attempts.
But the stigma attached to chronic pain is not only in family settings, it is everywhere. People reported feeling it from HCPs, employers and co-workers, at sporting and leisure activities, in restaurants and similar venues, even in general public places where the interaction is anonymous. It is a significant societal problem, compounded by the reality that it is invisible.
Influence of the pandemic
At present, the world is facing an unprecedented pandemic. As people with chronic pain are normal people, they also feel the effects of the restrictions.
PAE has just completed an in-depth survey on the consequences of the COVID-19 pandemic on people with chronic pain3. The results show just how serious the effects are. The overall QoL before the start of the pandemic averaged 6.66 on a scale of 0 to 10. Now, after a year of the pandemic, that QoL has dropped to an average of 5.15, a decline of 22%.
Half the respondents reported increased pain intensity, half reported worse sleep and two out of three reported worse mood. However, the most alarming fact was that almost three in 10 people reported they had no-one to speak to about their problems.
1 The major problem for the person with chronic pain is a quick and accurate diagnosis and an adequate therapy tailored to their personal circumstances.
2 From the policy perspective it is imperative that the ICD-11 definition of chronic pain is adopted by EU Member States and there is a clear pan-European roadmap on how this can be achieved. It is vital to enable data to be retrieved by researchers, to develop targeted intervention options.
3 From a prevention perspective, it is important that a long-term public campaign is initiated so people go and visit their physician earlier and ‘chronification’ of pain can be prevented.
4 For society, it is important to initiate a growing acceptance that there are people in society who are less fortunate, but who nevertheless deserve a place in society without prejudice.
When this happens, we will notice that the costs related to chronic pain will decrease, the economic situation for the individual will improve and society at large will benefit.
- PAE Survey 2019 – short.indd (pae-eu.eu)
- Short-Report-PAE-in-depth-survey-on-Covid-19-and-CP.pdf (pae-eu.eu)
EU Affairs Coordinator
Pain Alliance Europe