Background & Aims
Neurodivergence is a topical subject in UK healthcare. The death of an autistic patient through erroneous treatment prompted an NHS-wide rollout of new mandatory training in recognising autism¹. Autistic people are at greater risk of long-term health conditions than non-autistic people²; their healthcare is inequitable in terms of both access and quality³.
There is increasing speculation about an association between neurodivergence and chronic pain. A significant relationship has been identified between autistic traits and fibromyalgia?.
Treatment for chronic pain at a tertiary Pain Management centre in the UK is delivered by a multidisciplinary team (MDT) of healthcare professionals, but only clinical psychologists receive formal training in the recognition and support of neurodivergent patients.
We aimed to document recording of neurodivergence by members of our MDT when assessing patients for our outpatient Pain Management Programme (PMP) and in a related pain psychology clinic.
Methods
Neurodivergence (ND) describes ways of thinking that differ from the societal norm. Under ND we included: autism spectrum disorder (ASD), attention deficit hyperactivity disorder (ADHD), dyscalculia, dyslexia, dyspraxia, cognitive functioning difficulties, dysgraphia, misophonia, slow processing speed, stammering and Tourette’s syndrome. These were coded into i) established or ii) suspected diagnoses. Clinic letters of 200 patients who attended PMP assessment clinic or a related pain psychology clinic at the Walton Centre were reviewed. For each patient, reference to ND was searched for in: 1) referral letter into the pain service from an external source; 2) clinic letter from first contact with a pain consultant or physiotherapist on entry to the service; 3) summary letter from MDT assessment by a PMP psychologist or letter outlining review by a PMP psychologist in pain psychology clinic. Data was also collected on gender, age, pain condition and any psychiatric comorbidity.
Results
10 patients had a neurodivergence (ND) diagnosis stated in their referral documents. The pain team picked up on 8 of these diagnoses. Of 190 patients whose referral documents did not report ND, 12 patients were identified by our team to have established and/or suspected diagnoses. In most cases identification occurred during MDT assessment; in all cases ND was patient-reported.
22 patients overall were identified to have an established and/or suspected diagnosis of ND reported in at least one document reviewed (female:male ratio 4.5:1; age range 17-57 years; most common age bracket 20-29 years). 17 patients had one established or suspected ND diagnosis; 5 patients had two diagnoses. Established or suspected ASD was most common (n=12), followed by ADHD (n=9) then dyslexia (n=6). No other ND diagnoses were found in this sample. No patients were identified with learning disability.
The most common pain diagnosis for patients with established or suspected ND was fibromyalgia (n=7/58), followed by chronic widespread pain (n=6/31). The fibromyalgia/chronic widespread pain combined sample had a higher prevalence of ND (n=13/89) than the remainder of the patients (n=9/111), but a chi-square test of independence showed that this was not significant, X² (1, N = 200) = 2.13, p = > .05.
Conclusions
Neurodivergence is present in patients accessing PMP and pain psychology support at our service. The prominent diagnoses in this cohort were ASD, ADHD and dyslexia. Neurodivergence reported in a patient’s referral documents was picked up on by the pain team in most cases. Frequently neurodivergence was identified by the pain team in patients whose referral documents omitted this information, therefore referral documents cannot be relied upon to contain neurodivergence diagnoses – it is important to ask patients about neurodivergence directly when exploring their past medical history.
There is scope to improve neurodivergence recognition by all members of the MDT. This service evaluation may also prompt review of existing support measures in place for neurodivergent patients and identify areas of need. The seemingly disproportionately high prevalence of patients with widespread pain amongst those with ND diagnoses requires further assessment.
References
1.https://www.hee.nhs.uk/our-work/learning-disability/current-projects/oliver-mcgowan-mandatory-training-learning-disability-autism
2.Rydzewska E, Hughes-McCormack LA, Gillberg C, et al. Prevalence of long-term health conditions in adults with autism: observational study of a whole country population [published correction appears in BMJ Open. 2019 Feb 22;8(11):e023945corr1]. BMJ Open. 2018;8(8):e023945. Published 2018 Sep 1. doi:10.1136/bmjopen-2018-023945
3.Weir E, Allison C, Baron-Cohen S. Autistic adults have poorer quality healthcare and worse health based on self-report data. Mol Autism. 2022;13(1):23. Published 2022 May 26. doi:10.1186/s13229-022-00501-w
4.Ryan L, Beer H, Thomson E, Philcox E, Kelly C. Autistic Traits Correlate with Chronic Musculoskeletal Pain: A Self-Selected Population Based Survey. OBM Neurobiology 2023; 7(1): 155; doi:10.21926/obm.neurobiol.2301155.