Can we trust the tests? – Unlocking Mental Health Support After Spinal Cord Injury

[996 words, 6-minute read]

You just can’t stand to see someone you love be in pain. A spinal cord injury (SCI) turns life upside down — for them, and for you. You want to know they’re getting the best care possible — not just for their body, but for their mind too.

The psychological toll can be just as overwhelming as the physical challenges – nearly half of the people with SCI (PwSCI) experience mental health disorders after their injury. That’s a huge number! So how do we make sure people who need psychological support get it?

Specialist spinal cord injury centres (SCICs) across the UK provide rehabilitation services including psychological care. However, this care varies between centres, with psychologist-to-patient ratios ranging from 1:15 to 1:100. In some places, there simply aren’t enough staff to offer full psychological reviews — the ‘gold standard’ for assessing mental health.

Instead, many SCICs substitute full assessment with self-report questionnaires. They’ve been widely used in primary healthcare since they are short and quick to fill out, saving staff time and resources – but here’s the catch: there isn’t much evidence on how well they work for PwSCI. 

Importantly, we don’t know if we can trust these questionnaires to accurately reflect a clinician’s assessment.

That’s why we set out to answer the million-pound question: Are questionnaires actually effective for PwSCI?

How did we do it? 

We explored our question at the London Spinal Cord Injury Center (LSCIC) – an internationally recognized SCI rehab setting offering comprehensive, multidisciplinary care for PwSCI. They’re the only SCIC in the UK that routinely provides detailed mental health assessments by an inhouse team of psychology experts for all patients under their care. 

To answer our question, we analyzed 2 data sets: 

1. Questionnaire data: Before admission, patients filled out the PHQ-9 and the GAD-7. Each question was scored from 0 to 3, with higher scores representing more severe symptoms. These scores were added up to get a total questionnaire score.

For our analysis, we combined the PHQ-9 and GAD-7 total scores into a single PHQ-ADS score.

2. Clinician data: Shortly after patients arrived at LSCIC, the team of expert psychosocial specialists stepped in. They sat down with each patient, listened to their stories, and carried out in-depth assessments on each individual’s mental health needs, regardless of how they scored on the two questionnaires. Based on this, each patient was either:

1. 1. Given no formal diagnosis, or
   2. Diagnosed with a mental or behavioural disorder (e.g., depression, adjustment disorder, delirium)

For our analysis, we grouped everyone into 2 categories: anyone who received any diagnosis vs. those who didn’t. We treated this as our ‘gold standard’.

Using these two data sets, we could compare how well questionnaire scores aligned with the expert diagnosis they received, that is, the correlation between the two. 

What did we find?

The PHQ-ADS was like a fishing net — it caught a lot, but not everything was a keeper. Here are our key findings:

1. A Weak Correlation: Questionnaire scores lined up with clinician diagnoses, but the connection wasn’t super strong. 
2. Magic Number 14: A PHQ-ADS cut-off score of 14 could correctly identify up to 90% of PwSCI with a mental health diagnosis.
3. Anxiety Mystery: The GAD-7 missed the mark – it didn’t align well with actual anxiety diagnoses made by clinicians at LSCIC.

The blue rectangle in the graph below shows overlapping PHQ-ADS scores between those with and without a diagnosis. This helps explain why the correlation was weak. Interestingly, most people in the ‘No Diagnosis’ group clustered just below a PHQ-ADS score of 15 (as shown green dotted lines), so it makes sense that we found an optimal cut-off of 14 to distinguish between groups.

But bear in mind… a number of individuals with a diagnosis still scored below 14, which means the PHQ-ADS didn’t catch everyone. So what now?

Screening tools like the PHQ-ADS are helpful, but they’re not perfect.

They’re a good first step to flag people who might need support, but they should always be followed up to confirm screening results. That’s why proper assessments from trained mental health experts — like those available at the LSCIC — are essential.

Why does this matter?

Imagine your loved one being flagged as “severely anxious” on a questionnaire just because they’re still getting used to being in a wheelchair after a life-changing injury. That doesn’t necessarily mean they have anxiety. This is why questioning our screening tools matters — because behind every questionnaire is an individual rebuilding their life.

It also helps us inform clinical practice — by taking a closer look at the tools we use and asking “can we trust the tests?”, we are moving towards unlocking more effective care for life after SCI.

However, there are several reasons why these questionnaires might not enough to pick up clinician diagnoses: 

• Questionnaires ask about physical symptoms of psychological conditions (e.g., sleep disturbances and appetite changes), which are also common symptoms of SCI. This might impact the accuracy of questionnaires as they don’t distinguish whether increased physical symptom severity genuinely reflects a mental health problem — or is simply the physical realities of life after injury.
• PwSCI, especially those with an injury caused by traumatic accidents, experience greater trauma that can affect mental health symptoms. Yet, this is not accounted for in the current questionnaires non-specific to PwSCI.
• Our study just included 50 patients which were predominantly male. Larger, more diverse samples are needed to confirm the findings.

Take home message

• This was the first study to correlate the PHQ-ADS with clinician diagnoses in a UK-exclusive SCI sample.
• Keep the questionnaires — but don’t rely on them alone. 
• Provide psychology assessments by clinicians for all PwSCI, just like what’s already happening at LSCIC.

💬 Curious about spinal injury rehab? Check out Spinal Injuries Association or drop your thoughts below!

References

1. Bombardier, C. H., Azuero, C. B., Fann, J. R., Kautz, D. D., Richards, J. S., & Sabharwal, S. (2021). Management of mental health disorders, substance use disorders, and suicide in adults with spinal cord injury: clinical practice guideline for healthcare providers. Topics in Spinal Cord Injury Rehabilitation, 27(2), 152–224.
2. Duff, J., Ellis, R., Kaiser, S., & Grant, L. (2023). Psychological Screening, Standards and Spinal Cord Injury: Introducing Change in NHS England Commissioned Services. Journal of Clinical Medicine, 12, 7667. https://doi.org/10.3390/jcm12247667
3. Kroenke, K., Wu, J., Yu, Z., Bair, M. J., Kean, J., Stump, T., & Monahan, P. O. (2016). The Patient Health Questionnaire Anxiety and Depression Scale (PHQ-ADS): Initial Validation in Three Clinical Trials. Psychosomatic Medicine, 78(6), 716. https://doi.org/10.1097/PSY.0000000000000322
4. Richards, J. S., Kogos, S. C., & Richardson, E. J. (2006). Psychosocial Measures for Clinical Trials in Spinal Cord Injury: Quality of Life, Depression, and Anxiety. Top Spinal Cord Inj Rehabil, 11(3), 24–35. http://meridian.allenpress.com/tscir/article-pdf/11/3/24/1983788/cqth-ugpp-elkx-1f96.pdf
5. Sakakibara, B., Miller, W., Orenczuk, S., & Wolfe, D. (2009). A systematic review of depression and anxiety measures with individuals with spinal cord injury. Spinal Cord, 47, 841–851. https://doi.org/10.1038/sc.2009.93

Credits

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