Pain and its management in patients with inflammatory arthritis

PAIN PATH survey questionnaire completed at a single time point:
1. Pain severity – evaluated using the simplified Graded Chronic Pain Scale Revised (GCPS-R), measured in the regional/national survey at NHS sites or on paper/online by the participant.
2. Fibromyalgia – its presence or absence will be established using the Widespread Pain Index and Symptom Severity Score, allowing diagnostic criteria to be applied measured in the regional/national survey at NHS sites or on paper/online by the participant.
3. Pain trajectories – the Visual Trajectories Questionnaire-Pain (VTQ-P) will ask patients to classify their pain experience into one of a number of trajectories using visual and word descriptions. measured in the regional/national survey at NHS sites or on paper/online by the participant.
4. Pain Assessments-n As EULAR guidelines recommend a broad range of pain assessment components it is unfeasible to assess all of these within the questionnaire. We therefore prioritized the following for evaluation, which represent core aspects of pain assessments:
5.1. assessment of pain severity.
5.2. invitation for patients to disclose the impact of pain on their daily functioning.
5.3. assessment of patients’ ideas and concerns regarding the cause of their pain.
5.4. consideration of patients’ expectations for treatment.
5.5. consideration of patients’ preferences for treatment.
5.6. assessment of previous pain treatments and their effects.
5.7. assessment of pain-related factors that may need attention (questions 2H, considering mood, and 2I, considering sleep).
5. Pain Management - A further series of bespoke questions developed for this survey will assess pain management against EULAR guidelines measured in the regional/national survey at NHS sites or on paper/online by the participant.
6. The Beliefs About Medicines Questionnaire (BMQ) will evaluate patients’ beliefs about their pain medicines measured in the regional/national survey at NHS sites or on paper/online by the participant.
7. Patient global assessment of arthritis activity measured in the regional/national survey at NHS sites or on paper/online by the participant.
8. Patients with an axial spondyloarthritis will also be asked to complete questions from the BASDAI measured in the regional/national survey at NHS sites or on paper/online by the participant.
9. Patients will be asked to complete the functional questions from the multidimensional Health Assessment Questionnaire (mdHAQ) measured in the regional/national survey at NHS sites or on paper/online by the participant.
10. Generalised Anxiety Disorder 2-Item (GAD-2) measured in the regional/national survey at NHS sites or on paper/online by the participant.
11. Patient Health Questionnaire 2-Item (PHQ-2) measured in the regional/national survey at NHS sites or on paper/online by the participant.
12. The single-item physical activity measure will evaluate physical activity levels in the last week measured in the regional/national survey at NHS sites or on paper/online by the participant.
13. Patients will be asked whether they have any of the comorbidities included in the Rheumatic Disease Comorbidity Index measured in the regional/national survey at NHS sites or on paper/online by the participant.
14. Patients will be asked their year of IA diagnosis, which DMARDs they are currently receiving, and if they have received intramuscular steroids in the last month measured in the regional/national survey at NHS sites or on paper/online by the participant.
15. Patients will be asked to record their ethnicity (using groupings advocated by the Office for National Statistics), date of birth, sex at birth, height, weight, postcode, and employment status measured in the regional/national survey at NHS sites or on paper/online by the participant.

Pain Path Longitudinal study: Regional Recruitment
The day after completing the PAIN PATH survey and consenting to take part, patients will receive SMS messages twice daily at 8am and 8pm for 7 days. Seven weeks later the process will be repeated. They allow analgesic use and pain intensity to be captured from two time-periods: (a) Daytime (8am to 8pm; Figure 5); (b) Night-time (8pm to 8am)

Pain Path Longitudinal study: National Recruitment
The following data will be captured each week on an NHS online portal developed by Midlands Partnership NHS trust, patients will be asked to make a research data entry once a week for 3 months:
1. Average pain intensity score in the last week on an 11-point numeric rating scale with the anchors “no pain” and “pain as bad as you can imagine”.
2. Which analgesic(s) they used in the last week (from a pre-specified list)
3. Frequency of analgesic use in the last week for tablets/capsules, topical NSAIDs, and pain patches.
4. Reason(s) they used analgesics (unless no analgesics used): they can choose multiple pre-specified options (with the reasons as per those for the SMS messages) and enter a free-text reason.
The following additional data will be captured every 2 weeks:
5. Disease activity
5.1. all patients will be asked to complete a patient global assessment of arthritis activity on an 11-point NRS.
5.2. Patients with RA and peripheral PsA will be asked to perform self-reported swollen and tender joint counts.
5.3. Patients with an axial SpA will be asked to complete a BASDAI.
6. Function – all patients will complete the functional scale from the mdHAQ.
7. Sleep – all patients will complete the sleep item from the mdHAQ.
8. Mental health – all patients will complete the PHQ-2 and GAD-2.

There are no secondary outcome measures