We have developed and tested a new questionnaire, called WORC-PAIN, which measures the impacts of chronic pain on paid work. Unlike existing questionnaires, which mainly count sick days and lost productivity, WORC-PAIN looks at wider effects of pain on work, such as on finances, concentration, mood, relationships at work, and the support people have in place to help them keep working.
What is the background to this research?
Chronic pain is common, and it can make it harder for people to engage with and stay in paid work. Until now, the questions used in research settings to measure how chronic pain affects work have mostly focussed on the amount of work someone does, such as counting sick days (absenteeism) or the effect of how much people manage to get done while at work (presenteeism). These measures miss the wider picture of what actually matters to people living with pain, including the toll on their finances, energy levels, concentration, and their relationships with colleagues and coworkers.
What did we set out to do?
The QUICK study (Quantifying the Impact of Chronic pain on paid worK) set out to design a new questionnaire, to measure what people with chronic pain and other stakeholders say really matters.
QUICK was a multi-stage process with each building on the findings of the stage before:
- Identifying key things to include in our questionnaire
- Developing and refining our questionnaire
- Testing our questionnaire
Stage 1: Identifying key things to include in our questionnaire
Before designing anything new, we reviewed existing research, comparing what questionnaires currently measure about chronic pain and work against what people described in interviews and focus groups from other studies. This showed that existing tools captured a narrow range of impacts – e.g. sickness absence - while people's own accounts described a much broader range of impacts that mattered to them, including the toll on personal finances, the value of support from family, friends and healthcare professionals outside work, fatigue and difficulty concentrating.
This work gave us initial themes to explore in a series of focus groups with people with experience of working with chronic pain, and separately with stakeholders such as employers, healthcare professionals, researchers, and people working in charities and policy. Participants discussed these themes, alongside anything else they felt was important about the impact of chronic pain on work.
Effects on personal finances, concentration and irritability, and the need to "recharge" after work (often at the expense of time with family and friends) were all important, alongside positives such as supportive, flexible managers and work itself acting as a welcome distraction from pain.
Stage 2: Developing and refining our questionnaire
Using the focus group findings, our team drafted an initial draft of questions, which we refined through a series of team meetings, narrowing this down to a smaller set of candidate questions ready for formal testing with members of the public.
We refined our questionnaire through a two-stage ‘process, a multi-phase method for building consensus. This began with another series of focus groups, followed by a larger-scale online survey, where people with chronic pain and stakeholders rated how relevant each draft question was. Questions that scored highly enough then moved forward to our final questionnaire.
Stage 3: Testing our questionnaire
We then brought together the questions that passed the Delphi process into a final draft questionnaire, and tested it at a larger scale. We invited people with chronic pain who were currently working to complete it online, recruited through employers, NHS health boards, relevant charities, and the general population (via GP surgeries across Scotland).
Looking at everyone’s responses, we found that items grouped naturally into three meaningful areas:
- Wider impacts of working with chronic pain (e.g. effects on finances and future expectations)
- Day-to-day impacts of working with chronic pain (e.g. concentration, mistakes, irritability)
- Facilitators — the individual and job-based support that helps people keep working (e.g. flexible hours)
Analysis of responses showed us that these three groupings were reliable and meaningful, and stayed stable when they completed the questionnaire again two weeks later. A separate set of interviews where people "thought aloud" as they answered each question confirmed the wording and response options were clear and understood as intended; giving our team confidence, together with the survey results and free-text comments, to finalise the questionnaire.
WORC-PAIN: Our finished questionnaire
The finished tool, WORC-PAIN (Working with Chronic Pain: Assessment of Impacts), takes about 5–10 minutes to complete and overall was developed with input from over 100 people with chronic pain and other stakeholders. It has 24 core items across three groups of related questions (subscales), plus a small number of additional questions which provide further context (e.g. whether someone has told their employer about their pain, who they've told, and past career changes because of pain).
The subscales include:
- Wider impacts of working with chronic pain (10 items) — e.g. "My pain has affected my career, which has had a negative impact on my finances."
- Day-to-day impacts of working with chronic pain (10 items) — e.g. "How often does each of the following at work occur because of your pain: I cannot concentrate; I am irritable; I make mistakes."
- Individual and job-based facilitators to support working with chronic pain (4 items) — e.g. "I feel I have adequate schedule-based job modifications in place for my pain at work (e.g. flexible hours, time off for medical appointments, working from home)."
You can view a copy of our completed questionnaire at:
https://osf.io/hp4r2/files/osfstorage
Why does this matter?
WORC-PAIN gives researchers, clinicians, and policymakers a much fuller and more personally meaningful picture of the impacts of chronic pain on work, built from what people with chronic pain themselves say matters.
It can be used to:
- Understand the scale and nature of the problem across a population;
- Test whether a treatment, workplace change, or policy helps people work better with chronic pain;
- Identify where support is missing, to help target solutions.
Who funded this study?
This study was supported by the Medical Research Council (grant number: MR/V020676/1) and by the Arthritis UK/Medical Research Council Centre for Musculoskeletal Health and Work (CMHW; grant number: 22090).
Where can I read more?
The full WORC-PAIN questionnaire and supplementary item sheet are available to use at: https://osf.io/hp4r2/files
A research paper giving more detail on the development of WORC-PAIN was published in the European Journal of Pain, and is available at: https://onlinelibrary.wiley.com/doi/10.1002/ejp.70337