Chronic pain and brain injury - For Clinicians

PROMIS® (Patient-Reported Outcomes Measurement Information System)

The PROMIS profiles are a set of person-centered measures that evaluates and monitors physical, mental, and social health in adults and children. This measure was identified as the most suitable patient-reported measure, to serve as a convenient and appropriate screening tool for monitoring the level of interference of pain for people with a brain injury. The tool has a fixed number of items from seven PROMIS domains:

  • depression
  • anxiety
  • physical function
  • pain interference
  • fatigue
  • sleep disturbance
  • ability to participate in social roles and activities (My Role)

There are several different versions of the PROMIS with varying numbers of items in each (PROMIS–10, PROMIS–29, PROMIS– 43 and PROMIS–57). The PROMIS–29 was selected in order to provide a sufficient sampling of each domain, without over-burdening the respondent. Visit the PROMIS website for more detailed information.

In the PROMIS–29, there are two pain components – pain interference and pain severity. The respondent's scores are interpreted against standardised scores derived from the United States general population. The raw scores are converted to T-scores for comparison and identification of people whose self-reported functions are significant (more than one standard deviation worse than the reference population) and require monitoring or intervention.

Please see the Chronic pain and brain injury screening guide below, to guide your referral options.

Adults

Download the PROMIS-29+ adult screening guide for more detailed information about how to use, score and interpret the PROMIS-29+ as a screening tool.

In consultation with consumers and clinicians, the PROMIS-29+ was adapted for people with a spinal cord injury. The questions from the physical activity domains were excluded to accommodate for their different physical capacity – all remaining items of the questionnaire remain unchanged. Download this SCI version of the PROMIS-29+ as a screening tool with people who have a SCI.

Children

The PROMIS–25 has child and parent proxy versions, for use with children aged 5 to 17 years. Download the PROMIS–25 self-report screen guide for more detailed information about how to use, score and interpret the PROMIS–25 as a screening tool.

Download the PROMIS–25 self-report form (child or young person: 8 to 17 years).

Download the PROMIS–25 parent proxy form (child or young person: 5 to 17 years who is unable to complete the survey themselves).


Chronic pain and brain injury screening guide

Use this screening guide when working with people who have chronic pain after a moderate to severe traumatic brain injury.

Start by thinking about the nature of the person’s pain and how it interferes with their life, rehabilitation goals and functional capacity. Then follow the steps below to develop an appropriate pain management plan.

Do you think the person has chronic pain?

Answer these questions below:

Does the person consistently report pain?

  

Does the person appear to experience pain or exhibit pain behaviours?

  

Does the person’s family member/carer report that the person is in pain?

  

Has the person experienced pain for three months or more?

  

Does pain appear to impact on the person’s capacity to complete their rehabilitation goals or tasks?

 

If you answer yes to two or more questions it would be beneficial to talk to the person with pain about making a pain management plan 

Getting started

Step 1

Review the person’s PROMIS-29/25 scores or, if completed more than six months ago, ask the person with pain to complete the PROMIS again. Download the PROMIS-29/25.

Often it is helpful to go through the PROMIS with the person and use it to start a conversation about how pain is impacting on their  quality of life and rehabilitation progress. It can also be helpful to touch base with other clinicians that the person works with to see if they report or exhibit pain, and if this impacts on their rehabilitation efforts.

Step 2

Look at their pain interference and pain intensity scores on the PROMIS-29/25 

On the pain interference score, the score falls into the following categories:

None to minimal category

This means that the person may experience pain, but they feel it has minimal impact on their functional capacity. It would be helpful to give the person and/or their family or carers the Traumatic brain injury and chronic pain information sheet, and continue to talk about and monitor their pain levels and degree of interference.

Mild (to moderate) category

This means that the person experiences pain consistently and it does interfere with their capacity to function in everyday life. It would be helpful to:

  1. Start by providing the person and/or their family/carers with the Traumatic brain injury and chronic pain information sheet.
  2. Discuss developing a pain management plan with the person. A helpful place to start is the Chronic pain and brain injury website. In collaboration with the person you can complete the brick wall activity – often it is helpful to use the PROMIS-29/25 scores to guide this activity.
  3. Complete a pain management plan on this Chronic pain and brain injury website with the person. It might be helpful at this point to get input from the other treating team members about the pain management plan.
  4. Based on the plan, nominate a clinician and/or carer to work through the relevant sections of the Chronic pain and brain injury website with the person and start to address the individual components of the plan.
  5. Set a timeframe to review the plan (usually after three months). If after the review the person and the team think the plan is progressing well, keep going and plan a new review time. If the person and the team are not happy with the progress of the pain management plan, it might be a good time to consider a referral to the Be Pain Smart Clinic (see the process below in the moderate to severe category).
Moderate to severe category

This means that the person experiences pain every day that has a significant impact on their capacity to function in everyday life. Given the severity of the pain interference:

  1. The person would be a good candidate for referral to the  Be Pain Smart Clinic. Discuss the referral and assessment process with the person, and their expectations of the clinic assessment. Once the person agrees to the Be Pain Smart Clinic referral, talk to their other treating team members to get a clearer picture of the impact of pain on the rest of the rehabilitation goals. Download the referral form and email to bepainsmart@royalrehab.com.au.
  2. Provide the person and/or their family or carers with the Traumatic brain injury and chronic pain information sheet and start working through the Chronic pain and brain injury website with the person based on their PROMIS-29/25 results.

Step 3

Make a time to review the person’s progress and then update the pain management plan.


Events and Education

Be Pain Smart Website and Clinic Launch – Wednesday 13 October 2021.

To watch the virtual launch of the Be Pain Smart resources and clinic, helping people live without chronic pain getting in the way, click here.

Get an inside look at the resources and clinic, their impact and the benefit from using them with your patients or clients, or personally. Speakers included (in order of appearance):

  • Jenni Johnson, Stream Manager, Trauma, Pain and Rehabilitation, NSW Agency for Clinical Innovation
  • Dr Raj Anand, Consultant Pain Specialist and Rheumatologist, Royal Rehab
  • Professor Phil Siddall, Consultant Pain Specialist, Royal Rehab
  • Jacqueline Scott, Service Innovation and Excellence Manager, Lifetime Schemes, icare
  • Dr Katie Banerjee, Rehabilitation Staff Specialist, Sydney Children’s Hospital Network
  • Marion Fisher, Brain Injury Rehabilitation Network Co-Manager, NSW Agency for Clinical Innovation
  • Dr Regina Schultz, Senior Clinical Psychologist, Royal Rehab and NSW Agency for Clinical Innovation
  • Marsha Ben, Physiotherapist, Spinal Outreach Service, Royal Rehab
  • Jane Bradshaw, Senior Physiotherapist, Royal Rehab
  • Prof James Middleton, Clinical Director, Statewide Spinal Cord Injury Service, Agency for Clinical Innovation, & Senior Staff Specialist, Spinal Outreach Service, Royal Rehab

We also celebrated Professor Phil Siddall who is retiring from the clinic in December 2021.


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