Sociodemographic factors associated with routine outcome monitoring: a historical cohort study of 28,382 young people accessing child and adolescent mental health services.

Patient-reported outcome measures (PROMs) are important tools to inform patients, clinicians, and policy-makers about the patients’ clinical need and the effectiveness of any given treatment. Consistent PROM use can promote early symptom detection, help identify unexpected treatment responses and improve therapeutic engagement. Very few studies have examined associations between patient characteristics and PROM data collection. We used the electronic mental health records for 28,382 children and young people (aged 4-17 years) accessing Child and Adolescent Mental Health Services (CAMHS) across four South London boroughs between the 1st of January 2008 to the 1st of October 2017. We examined the completion rates of the caregiver Strengths and Difficulties Questionnaire (SDQ), a ubiquitous PROM for CAMHS at baseline and 6-month follow-up. SDQs were present for approximately 40% (n=11,212) of the sample at baseline, and from these only 8% (n=928) had a follow up SDQ. Patterns of unequal PROM collection by socio-demographic factors were identified: males were more likely (aOR 1.07, 95% CI 1.01-1.13), whilst older age (aOR 0.87, 95% CI 0.87-0.88), Black (aOR 0.79 95% CI 0.74-0.84) and Asian ethnicity (aOR 0.75 95% CI 0.66-0.86) relative to White ethnicity, and residence within the most deprived neighbourhood (aOR 0.87 95% CI 0.80-0.94) were less likely to have a record of baseline SDQ. Similar results were found in the sub-group (n=11,212) with follow up SDQ collection, which indicate systematic differences in the currently available PROMS data and the groups that require increased focus if we are to gain equitable PROM collection. We need to ensure representative PROM collection for all individuals accessing treatment, regardless of ethnic or socio-economic background; biased data has adverse ramifications for policy and service level decision-making.Funding: A.C.M. is supported by the GSST Charity. J.D. is supported by NIHR Clinician Science Fellowship award (CS-2018-18-ST2-014) and has received support from a Medical Research Council (MRC) Clinical Research Training Fellowship (MR/L017105/1) and Psychiatry Research Trust Peggy Pollak Research Fellowship in Developmental Psychiatry. E.S. currently receives support from the NIHR Biomedical Research Centre (BRC) at SLaM NHS Foundation Trust (IS-BRC-1215-20018), the NIHR through a programme grant (RP-PG-1211-20016) and Senior Investigator Award (NF-SI-0514-10073 and NF-SI-0617-10120), the European Union Innovative Medicines Initiative (EU-IMI 115300), Autistica (7237) MRC (MR/R000832/1, MR/P019293/1), the Economic and Social Research Council (ESRC 003041/1) and GSST Charity (GSTT EF1150502) and the Maudsley Charity. All authors are affiliated with the NIHR Specialist BRC for Mental Health at the SLaM NHS Foundation Trust and IoPPN, KCL