Background & Aims
Over 75% of global years lived with disability can be attributed to chronic pain1. It is associated with depression, cardiovascular disease, isolation, stigma, and an increased risk of suicide2,3. Chronic Pain Australia (CPA) is the national consumer voice for the 3.6 million Australians living with chronic pain and runs an annual National Pain Survey (NPS) to scope their lived experience and topical issues impacting the pain community. Since 2021, key Australian pain research stakeholders have formed the Australian Pain Solutions Research Alliance (APSRA). APSRA’s mission is to unite consumers, researchers, health professionals, industry, and government to propel discovery and delivery of effective pain solutions. CPA is a key member of APSRA, and together they have collaborated to scope consumers thoughts and experiences on the current state of Australian pain research. The aim of this study is to explore and describe the research wants and needs of people living with chronic pain.
Methods
Data from the 2022 and 2023 NPS was analysed. In the 2022 NPS, survey participants were asked to list their top three priorities for pain research. The first response from each participant was coded and linked to 11 major classifier responses including access to services, access to medications, cure for pain, new medication treatments, new non-medication treatments, a combination of both, increased engagement, new measures for pain, better understanding of pain mechanisms, precision treatment, and unknown. Responses were analysed across demographics (e.g. age, gender, and location). Sentiment analysis was used to identify emotions within the text. In the 2023 survey, participants were asked to rank the importance of 10 classifier responses from the 2022 NPS (excluding “unknown”). Participants were asked if they could relate to the top eight emotions associated with pain, as identified in the 2022 NPS. This data was analysed descriptively, using frequency and percentages.
Results
There were 930 responses to the research question in the 2022 NPS. The top requests for research were mechanistic understanding of pain (25%), greater engagement and understanding (20%), new medications to treat chronic pain (15%), increased access to services (12%) and a combination of both new medication and new non-medication treatments (11%). There were no clear differences based on age, gender, or location. The sentiment analysis showed that the major emotions associated with responses were in order of decreasing frequency: sadness, fear, trust, mistrust, anticipation, disgust, joy and surprise. There were 1500 responses to the research questions in 2023. The most important topics people with pain want researchers to focus on were finding a cure for chronic pain (37%), better understanding of mechanisms contributing to pain (15%), better access to medication (14%). Respondents reported feelings of sadness (76%), fear (61%) and mistrust (60%) when it came to chronic pain research.
Conclusions
Analysis of the NPS data shows a significant disparity between the current landscape of pain research in Australia and the actual wants and needs of individuals grappling with chronic pain. The study indicates that research conducted without considering consumer priorities leaves a gap, making the implementation and translation into policy and practice less successful. The findings show the necessity of genuine involvement of consumers in research and development of solutions for pain management. Ensuring the emotional aspects associated with chronic pain, such as sadness, fear, and mistrust, indicates the importance of a more empathetic and patient-centric approach. The results from both the 2022 and 2023 surveys highlight the urgency of aligning research efforts with the expressed desires of those living with chronic pain to bridge the existing gap and enhance the relevance and impact of pain research in Australia.
References
1. GBD 2019 Risk Factors Collaborators. Global burden of 87 risk factors in 204 countries and territories, 1990-2019: a systematic analysis for the Global Burden of Disease Study 2019. Lancet. 2020 Oct 17;396(10258):1223-1249. doi: 10.1016/S0140-6736(20)30752-2.
2. Shebeshi D, Allingham S, Tardif H, Bryce M, Cameron K, White J, Damm S and Eagar K (2022) Electronic Persistent Pain Outcomes Collaboration Annual Data Report 2021. Australian Health Services Research Institute, University of Wollongong.
3. Tang NK, Crane C. Suicidality in chronic pain: a review of the prevalence, risk factors and psychological links. Psychol Med. 2006 May;36(5):575-86. doi: 10.1017/S0033291705006859.
Presenting Author
Katherine Brain
Poster Authors
Katherine Brain
PhD, B Nutr&Diet (Hon I)
Chronic Pain Australia, Australian Pain Research Solutions Alliance, School of Health Sciences, University of Newcastle, Callaghan, NSW, Australia
Lead Author
Nicolette Ellis
Chronic Pain Australia
Lead Author
Fiona Hodson
Chronic Pain Australia; Hunter Integrated Pain Service
Lead Author
Mark Hutchinson
Australian Pain Research Solutions Alliance
Lead Author
Topics
- Patient Engagement and Co-Creation in Research and Education