High Impact Chronic Pain and UK Biobank: presentation, transitions and targets for intervention
Lead Research Organisation:
Keele University
Department Name: Inst for Primary Care and Health Sci
Abstract
BACKGROUND
Nearly half of UK adults have pain in their muscles or joints lasting longer than three months (chronic pain). While most people manage well, about 25% of people have pain that has far-reaching, negative impacts on their lives, leading to disability, distress, social isolation, and high healthcare needs. Chronic pain presents in many different ways, and it is not clear why some people experience such 'high impact chronic pain' whereas others don't. We also don't know yet why some people improve, whereas others experience ongoing or even increasing impact from their pain.
AIMS OF THE RESEARCH
We aim to find out the possible causes (or 'risk factors') of high impact chronic pain. This will inform the design or choice between selfcare or treatment options that may more effectively address people's individual needs. Early care or support that target specific risk factors may also help prevent the onset of high impact chronic pain.
Specifically, we plan to use existing data from a large, national study of older adults (UK Biobank) to
1. Identify groups of people with distinct patterns of high impact chronic pain who may have different outcomes and different care needs
2. Understand the reasons why high impact chronic pain affects some more than others, and why this can change over time, focusing on the influence of:
a. psychological factors, including mood, attention, memory, ability to problem-solve
b. trauma or traumatic events that may occur at different times in people's lives (e.g., fracture, bereavement, sudden illness)
3. Identify selfcare or treatment options that can reduce the influence of these risk factors for people with chronic pain.
DESIGN AND METHODS
We will use data from UK Biobank, which includes health information from 500,000 people in the UK, who were aged 40-69 years when data collection started in 2006-2010. A questonnaire on the nature and impact of chronic pain was completed by over 173,000 participants in 2019. A second pain questionnaire will be sent to participants in 2023.
The study team will work together with patient partners on the following three workpackages:
(1) We will use state-of-the art statistical and artificial intelligence methods to identify subgroups with distinct patterns of chronic pain, and describe its impact on daily activity, mood, and healthcare use.
(2) We will use data from questionnaires and healthcare records collected over a period of more than 15 years, to investigate the role of factors that may explain changes over time in the impact of chronic pain, including (a) mood, attention, memory, problem-solving, and (b) physical or psychological trauma.
(3) Based on the results from (2) we will identify factors that can be effectively targeted by selfcare or treatment. We will then estimate how much benefit could be achieved if such interventions would successfully be offered to people with chronic pain.
PATIENT AND PUBLIC INVOLVEMENT
Research questions have been informed by patient partners, who shared their life stories, and suggested factors that may explain the development of chronic pain, and how impact can change over time. They will continue to be involved in defining and prioritising factors for analysis; reviewing interventions; interpreting results; formulating key messages and dissemination of findings.
COMMUNICATING FINDINGS
We will work together with patient partners and clinical advisors to
- Publish results in scientific journals and during (international) pain conferences
- Share our findings with other research teams and the PPIE network in APDP, and with UK Biobank
- Engage with our existing networks, including Versus Arthritis, Public Health England, NHS partners, research funders
- Design infographics, visual animations, or YouTube videos to communicate key findings in a way that is suitable for a wide audience
- Hold webinars to discuss findings and implications
Nearly half of UK adults have pain in their muscles or joints lasting longer than three months (chronic pain). While most people manage well, about 25% of people have pain that has far-reaching, negative impacts on their lives, leading to disability, distress, social isolation, and high healthcare needs. Chronic pain presents in many different ways, and it is not clear why some people experience such 'high impact chronic pain' whereas others don't. We also don't know yet why some people improve, whereas others experience ongoing or even increasing impact from their pain.
AIMS OF THE RESEARCH
We aim to find out the possible causes (or 'risk factors') of high impact chronic pain. This will inform the design or choice between selfcare or treatment options that may more effectively address people's individual needs. Early care or support that target specific risk factors may also help prevent the onset of high impact chronic pain.
Specifically, we plan to use existing data from a large, national study of older adults (UK Biobank) to
1. Identify groups of people with distinct patterns of high impact chronic pain who may have different outcomes and different care needs
2. Understand the reasons why high impact chronic pain affects some more than others, and why this can change over time, focusing on the influence of:
a. psychological factors, including mood, attention, memory, ability to problem-solve
b. trauma or traumatic events that may occur at different times in people's lives (e.g., fracture, bereavement, sudden illness)
3. Identify selfcare or treatment options that can reduce the influence of these risk factors for people with chronic pain.
DESIGN AND METHODS
We will use data from UK Biobank, which includes health information from 500,000 people in the UK, who were aged 40-69 years when data collection started in 2006-2010. A questonnaire on the nature and impact of chronic pain was completed by over 173,000 participants in 2019. A second pain questionnaire will be sent to participants in 2023.
The study team will work together with patient partners on the following three workpackages:
(1) We will use state-of-the art statistical and artificial intelligence methods to identify subgroups with distinct patterns of chronic pain, and describe its impact on daily activity, mood, and healthcare use.
(2) We will use data from questionnaires and healthcare records collected over a period of more than 15 years, to investigate the role of factors that may explain changes over time in the impact of chronic pain, including (a) mood, attention, memory, problem-solving, and (b) physical or psychological trauma.
(3) Based on the results from (2) we will identify factors that can be effectively targeted by selfcare or treatment. We will then estimate how much benefit could be achieved if such interventions would successfully be offered to people with chronic pain.
PATIENT AND PUBLIC INVOLVEMENT
Research questions have been informed by patient partners, who shared their life stories, and suggested factors that may explain the development of chronic pain, and how impact can change over time. They will continue to be involved in defining and prioritising factors for analysis; reviewing interventions; interpreting results; formulating key messages and dissemination of findings.
COMMUNICATING FINDINGS
We will work together with patient partners and clinical advisors to
- Publish results in scientific journals and during (international) pain conferences
- Share our findings with other research teams and the PPIE network in APDP, and with UK Biobank
- Engage with our existing networks, including Versus Arthritis, Public Health England, NHS partners, research funders
- Design infographics, visual animations, or YouTube videos to communicate key findings in a way that is suitable for a wide audience
- Hold webinars to discuss findings and implications
Technical Summary
BACKGROUND: Chronic pain (CP), lasting more than 3 months, represents a major global burden in terms of years lived with disability and economic impact due to healthcare use and work absenteeism. Approximately 25% of those with CP (10% of the adult UK population) experience far-reaching impact from CP, including widespread disability and distress, social exclusion, and high healthcare needs, recognised as High Impact Chronic Pain (HICP).
AIMS AND OBJECTIVES: We propose an interdisciplinary programme of research to inform prevention, selfcare and treatment options for HICP. Specific objectives are to
1. Use clustering methods to identify and describe phenotypes of HICP, and validate these in other datasets
2. Use causal inference methods to investigate the role of (a) cognitive and affective factors, and (b) trauma or traumatic events in explaining transitions of HICP
3. Identify potential targets for prevention and treatment, and estimate expected benefit from individual or population level intervention
DESIGN AND METHODS: Working with patient partners we will use data from UK Biobank to investigate changes in the impact of chronic musculoskeletal pain over time. The presence of CP was assessed in all UKB participants at inclusion in 2006-2010. A detailed CP survey was launched in 2019 (completed by >173,000 individuals) and will be repeated in 2023. Additional data on risk factors, mediating and moderating factors will be extracted from existing surveys (e.g. lifestyle, work cogntive function, mental health) and linked healthcare records (trauma, sudden illness, comorbidity). Social determinants (e.g. age, gender, ethnicity, deprivation), will be taken into account in all analyses.
DISSEMINATION: Open access publications, conference presentations, lay summaries, and infographics will be co-created with patient partners and clinical advisors, and shared within the research community, public health/clinical networks, and the wider public.
AIMS AND OBJECTIVES: We propose an interdisciplinary programme of research to inform prevention, selfcare and treatment options for HICP. Specific objectives are to
1. Use clustering methods to identify and describe phenotypes of HICP, and validate these in other datasets
2. Use causal inference methods to investigate the role of (a) cognitive and affective factors, and (b) trauma or traumatic events in explaining transitions of HICP
3. Identify potential targets for prevention and treatment, and estimate expected benefit from individual or population level intervention
DESIGN AND METHODS: Working with patient partners we will use data from UK Biobank to investigate changes in the impact of chronic musculoskeletal pain over time. The presence of CP was assessed in all UKB participants at inclusion in 2006-2010. A detailed CP survey was launched in 2019 (completed by >173,000 individuals) and will be repeated in 2023. Additional data on risk factors, mediating and moderating factors will be extracted from existing surveys (e.g. lifestyle, work cogntive function, mental health) and linked healthcare records (trauma, sudden illness, comorbidity). Social determinants (e.g. age, gender, ethnicity, deprivation), will be taken into account in all analyses.
DISSEMINATION: Open access publications, conference presentations, lay summaries, and infographics will be co-created with patient partners and clinical advisors, and shared within the research community, public health/clinical networks, and the wider public.
Publications
| Description | Design of the 2nd UK Biobank Pain and Sensation questionnaire |
| Organisation | University of Oxford |
| Department | Oxford Clinical Trials Unit (CTU) |
| Country | United Kingdom |
| Sector | Academic/University |
| PI Contribution | The CHIPP team has worked together with the Oxford Population Health CTSU and lead researchers who developed the first (2019) UK Biobank Pain and Sensation Questionnaire (Blair Smith - University of Dundee; Gary Macfarlane - University of Aberdeen; Dave Bennett and Zameel Kader - University of Oxford) to review and prepare the follow-up questionnaire, which will be launched in 2024. The survey allows longitudinal analysis of chronic pain in the population. The CHIPP team has proposed new items to assess treatments received for chronic pain, working together with people with lived experience of chronic pain to agree and define items. All researchers will be able to access data collected through this questionnaire through the usual UK Biobank data request procedures. |
| Collaborator Contribution | The Oxford Population Health CTSU hosts the UK Biobank surveys, and currently working to set up and test the survey. They will launch the survey in 2024. |
| Impact | Outputs will be generated after the survey has been launched and data become available to researchers. |
| Start Year | 2023 |
| Description | APDP public launch |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Public/other audiences |
| Results and Impact | A public launch of research funded through the Advanced Pain Discovery Platform was organised on 9th May 2022 as an online event, to present the aims and research plans of funded projects and consortia, and to discuss optimal ways of public and patient engagement and involvement. The CHIPP project was presented during this webinar. |
| Year(s) Of Engagement Activity | 2022 |
| URL | https://www.nottingham.ac.uk/news/new-partnership-will-help-tackle-chronic-pain |
| Description | PPI workshops |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | A series of workshops were organised with the CHIPP patient panel between May and December 2023. The panel includes 25 people with lived experience of chronic pain. They discussed the impact of chronic pain on their lives and contributed to defining "high impact chronic pain in preparation of analyses using UK Biobank data (WP1). The panel also shared their life stories to identify potential causes or mediators of high impact (e.g. related to experience of trauma, social isolation, physical health, affective and cognitive factors, missed opportunities for treatment). These factors are now part of analysis plans for the causal inference studies included in CHIPP (WP2). The panel also contributed to identifying suitable treatment and self-management options to be included in a systematic review (WP3). The finally worked with the CHIPP team to consider items that can be added to the 2nd UK Biobank Pain and Sensation questionnaire that will be launched in 2024. |
| Year(s) Of Engagement Activity | 2023 |
| Description | Workshop to discuss patient and public engagement in research using big data and/or complex analysis approaches |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Postgraduate students |
| Results and Impact | This workshop was organised during an annual meeting of the APDP, by CHIPP researchers together with a patient partner. The aim of the workshop was to discuss PPIE in research that makes use of existing data and complex analysis methods. Early career researchers discussed different ways in which patient partners may be involved in such studies, how they can be involved in setting priorities for analysis, and contribute to interpretation of findings and dissemination of results. The importance of a glossary to explain terminology was discussed, as well as the type of training or preparation needed to ensure their involvement can be meaningful for both researchers and patient partners. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Workshop with patient panel to discuss impact of menopause on pain and arthritis |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | A workshop was organised with the CHIPP patient panel and additional members from NRAS in preparation for a large grant application for a consortium focusing on clinical epidemiology of pain and arthritis. One of the workpackages aims to develop the relationship between menopause and musculoskeletal pain/arthritis, including the role of hormone replacement therapy. During this session, participants shared their experiences of perimenopause and menopause and the interaction with pre-existing health conditions including rheumatoid arthritis (RA) and fibromyalgia. Some participants shared they had experienced RA flares during perimenopause and faced challenges in getting appropriate medical care. There was experience of feeling 'fobbed off' by clinicians - not heard, acknowledged, validated of believed. Key discussions during the meeting highlighted several important points: Menopause and Pain: Participants shared their experiences of having multiple and often troublesome symptoms during menopause, including hot flushes, arthritis flares, and fatigue, which had been confused with medication side effects and co-existing conditions. The group stressed the importance of receiving accurate and timely information about menopause, and validation from healthcare professionals. There was a consensus on the need for better education for both patients and healthcare providers about the relationship between menopause and musculoskeletal conditions. HRT and Pain: The discussion also focused on the benefits and challenges of accessing and using HRT to manage menopause symptoms. While some participants reported positive effects, others expressed concerns about the long-term risks and side effects of HRT. The group emphasized the need for more support and guidance from healthcare professionals when considering HRT, including the availability of alternative treatments. Cultural differences and the lack of open discussions about menopause and HRT in some communities were also noted as an important to consider barrier. Overall, the meeting highlighted the need for better understanding and support from healthcare providers for women experiencing menopause, particularly those with existing conditions like RA. Participants highlighted the importance of patient education and access to high quality, empathetic, holistic and joined up care that considers the complex interplay between menopause and other musculoskeletal health issues. |
| Year(s) Of Engagement Activity | 2024 |
| Description | Workshop with patient panel to discuss the role of sleep and chronotype in people with chronic pain |
| Form Of Engagement Activity | A formal working group, expert panel or dialogue |
| Part Of Official Scheme? | No |
| Geographic Reach | National |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | A workshop was organised the CHIPP patient panel to discuss the relationship of sleep with pain, with the aim to identify priorities for future research on this topic. Overall, the discussion showed how the relationship between sleep and pain spoke to an unmet clinical need and treatment target. In particular, challenges faced with dealing with the "day-to-day" of chronic pain alongside lack of integrated healthcare support. The importance of access to treatments and interventions that were personalised came through and consideration on how these could be explored in research underpinned some of the discussion both in breakout and main rooms. When the panel considered chronotype ("early larks" and "night owls") and the potential benefits of using and understanding this in the sleep-pain relationship, discussions helped to confirm this as a useful part of that relationship to explore in upcoming research. Finally, the discussion broadened out to consider the social and societal impact of not understanding the sleep-pain relationship and how this could or should be tackled. |
| Year(s) Of Engagement Activity | 2024 |
