Beyond the Pain Scale: How Do We Measure Impact and Progress in Pediatric Chronic Pain?
The Pain Scale
You and your child are used to being asked this question. “What’s your pain level today?”
This same question, over and over again.
Your or your child’s answer to this question is usually loaded. One number feels too small to capture the nuances and complexity of pain.
Pain scales were developed to try to meet a need of quickly assessing pain intensity, as well as the if a treatment was effective. If your pain goes down, that means something was working, and if it’s not, there’s more to do. Simple, right?
When the Pain Scale is Not Enough
Too many individuals and families have learned the hard way the negative consequences of focusing solely on this simple scale. Whether it’s a 0-10 scale, a slide bar, or faces, it’s so limiting.
Only considering the intensity of pain is definitely not enough for any unique individual. It falls far short of capturing the variability, widespreadedness, history, emotions, and impact on a person’s life.
So how can we actually measure pain and progress?
Measurement of pain is an entire rich field of research, and clinicians and scientists continue to innovate in this area.
In the meantime, the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials (IMMPACT) developed a consensus around core outcome domains and measures that should be considered in clinical trials of treamtment for both acute and chronic pain in children and adolescents.
While their conclusions were intended for clinical researchers, their recommendations can be helpful for unique individuals and families trying to measure their own pain and progress with their team of healthcare providers.
For chronic pain, the PedIMMPACT core outcome domains include:
1) Pain Intensity:
It’s not enough, but it’s a start. For chronic pain, we may be more interested in pain intensity over time, or patterns within a day.
2) Global Judgment of Satisfaction with Treatment:
This is meant to be a broad judgement of pain relief, symptoms, and adverse events, as well as how the child is doing physically, emotionally, and in their roles as a student and family member. Regarding treatment, do you feel listened to, validated, educated, respected, and provided with expertise and collaboration?
3) Symptoms and Adverse Events:
It’s certainly important to track anything new that occurs and discuss this with your child’s doctor. It’s possible that this is a new symptom, or a new manifestation of a current condition.
4) Physical Functioning:
In everyday activities that involve movement, whether that’s daily self-care or sports participation, how are they doing?
5) Emotional Functioning:
How are you doing emotionally? How are your child’s levels of anxiety and depression? How about coping with the stress of every day life? What about presence of positive feelings like joy, fulfillment, connection, and meaning?
6) Role Functioning:
Think about you or your child’s roles, whether that is as a student, employee, friend, and family member. How are you or your child doing in these areas? How does pain impact functioning in these roles? Consider things more broadly too - are independence, moral judgment, autonomy, responsibility, and critical thinking being developed too?
7) Sleep:
Whether measured by overall feeling, a structured evaluation, or using a fitness tracker, measuring sleep can be significant in understanding and treating chronic pain. Ask yourself about sleep duration, sleep schedule, difficulties falling or staying asleep, sleep independence, and recent changes.
8) Economic Factors:
How does pain impact you and your family’s economy? Healthcare takes so many financial and time resources, both directly and indirectly. While some treatments are lower cost up front, others offer long-term benefits of returning to work, less unnecessary tests and treatments, and the invaluable price of getting your life back.
What can you do with this list?
1. Do some self-reflection on each of these outcomes, and repeat every so often. Has there been any meaningful or surprising progress in any areas? Are any areas more troublesome recently?
2. Encourage your or your child’s pediatrician to assess pain beyond the simple rating scale. Convey your interest in measuring more than one outcome.
3. Of course all of these are important, but try priotizing 1-2 areas to concentrate on a time.
4. Find support if you are feeling stuck. A provider with experience and expertise in pediatric chronic pain can help you measure what is important, understand what is going on, prioritize, provide specific care, and connect with team members to get comprehensive care for your child’s pain and life.
If you’re feeling stuck and overwhelmed with how pain is affecting your or your child’s life, experienced and expert help in navigating the complex healthcare field and finding non-pharmacological solutions that work is possible. Take the first step by clicking the Get Started button at the top right of your screen.
Reference:
McGrath, P. J., Walco, G. A., Turk, D. C., Dworkin, R. H., Brown, M. T., Davidson, K., ... & Zeltzer, L. (2008). Core outcome domains and measures for pediatric acute and chronic/recurrent pain clinical trials: PedIMMPACT recommendations. The journal of pain, 9(9), 771-783.
https://www.sciencedirect.com/science/article/pii/S1526590008005506