We need to put equity at the heart of pain management

Research is showing that persistent pain is a complex experience that has unequal impacts. In this blog Dr Whitney Scott, Lecturer in Clinical Health Psychology at King’s College London and Clinical Psychologist at the INPUT Pain Unit, part of Guy’s and St Thomas’ NHS Foundation Trust, draws on her work to explore how we can move toward greater equity in pain management.

Pain is complex

If I had to describe persistent pain with one word, I would say that it’s complex. It’s complex because the experience of pain and related disability are influenced by multiple biological, psychological, and social factors. Therefore, treatment approaches that address this multitude of factors are needed.

An unequal burden

One of the complexities of pain is its unequal burden. For example, women have an increased likelihood of many persistent pain conditions and struggle to have their pain believed. Additionally, relative to white individuals, people from racialized minority groups experienced disparities in pain treatment and outcomes. Evidence also shows that individuals who have low socioeconomic positions carry a substantial burden of pain and are more likely to experience chronic pain and poorer outcomes. Finally, despite good evidence that interdisciplinary treatments based on cognitive-behavioural principles are helpful, many people with pain cannot access these treatments.

Promoting equity by increasing access

In my work I’ve been thinking about issues related to equity in pain management in different ways. For example, we’ve explored using digital technology to widen access to psychologically-informed pain management. Internet-delivered treatment may be particularly suitable for people who can’t travel to a clinic, or people for whom work or childcare responsibilities make attending fixed appointments a challenge.

In the context of the COVID-19 pandemic, there has been a rapid increase in the implementation of remotely delivered treatments for pain. With this, research suggests there is a need to consider who gets excluded from remote delivery of treatment, for reasons such as digital poverty. Therefore, we need to think carefully about how pain management can be delivered in a format that best meets an individual’s needs.

The need to target social systems

In the pain field, the social aspects of pain have historically been less well researched than the biological and psychological aspects. In my research I’ve been interested in exploring how pain contributes to social exclusion and the impacts of this. For example, in one study, we found that pain-related stigma (e.g., embarrassment about one’s pain, negative attitudes from others) was associated with greater disability and depression symptoms. The stigma of pain may also intersect with the stigma of other conditions that individuals have, such as HIV (human immunodeficiency virus), and this could influence the extent to which people communicate their pain with other people or not.

In another study, we found that people with pain were more likely to experience discrimination than those without pain. Concerningly, discrimination predicted greater depression symptoms and loneliness six years later in people with pain. There is a limit to the impact that interventions focused solely on the individual with pain will have in the presence of social environments characterised by ongoing stigma and discrimination. Therefore, interventions at multiple levels of the social system are needed to improve the lives of people with pain.

Towards a more inclusive approach

To ensure we consider these social factors, I’m interested in improving psychologically-informed pain management for groups that have been historically excluded from research and practice in this area. For example, there is a high burden of persistent pain in people living with HIV. However, pain management in this population has historically focused on pharmacological treatments with limited impact.

My National Institute for Health and Care Research (NIHR)-funded postdoctoral fellowship highlighted the importance of targeting psychosocial factors for pain management in people living with HIV. We also found that a form of cognitive-behavioural treatment called Acceptance and Commitment Therapy (ACT) delivered online showed promise for further study in this population. ACT doesn’t focus on reducing pain, as that can be a challenge when pain persists. Instead, it helps people to improve their quality of life and daily functioning with pain. ACT helps people to develop greater awareness of and openness to the bodily sensations, thoughts, and feelings that come with pain, so that they can connect more with the things they care about in life. There is growing evidence in support of ACT for people with persistent pain. Ours was the first study looking at online ACT specifically for people with HIV and pain.

I’m also passionate about improving access to psychologically-informed pain management for people with severe mental illness (SMI). Pain is prevalent in people with SMI, such as those with psychosis, bipolar disorder, and severe depression. However, people with SMI are routinely excluded from research on psychologically-informed treatments for pain and in clinical practice. Therefore, we know very little about how to provide evidenced-based pain management for this population.

My colleagues and I have written about how to improve pain treatment for people with SMI in a recent paper in the journal PAIN. Our recommendations focus on improving recognition of pain in this group, such as by routinely including carers in the assessment of pain. We also discuss the need to involve people with lived experience to advance this work. We highlight single-case experimental designs as a person-centred methodology that can help to rapidly develop integrated treatments for SMI and pain. Finally, we discuss the importance of drawing on implementation science to ensure that research on pain management in people with SMI directly influences clinical practice.

Understanding the complexity - PAINSTORM

Since last year, I’ve been part of a large interdisciplinary consortium called PAINSTORM, which was funded by the UKRI/Versus Arthritis Advanced Pain Discovery Platform. PAINSTORM will map out and explore the complexity of interactions between biopsychosocial drivers of neuropathic pain (pain caused by damage to the sensory nervous system). This consortium includes people living with pain, and clinicians and scientists including medical doctors, allied health professionals, people with expertise in brain imaging, genetics, and statistics, among others. PAINSTORM also has a strong focus on including people who are typically underrepresented in pain research.

You can learn more from the PAINSTORM consortium webpage and you can follow on Twitter @Painstorm_APDP

For a more detailed overview of the complexity of persistent pain and the treatment approach that I use (ACT) in my research and clinical practice, visit my Psyche Guide. I also often tweet about pain-related things @WhitneyJScott.