Background & Aims
Potentially, people from ethnic minority groups (PEMG) seeking a diagnosis of Fibromyalgia (FMS) not only face shortcomings relating to the condition and the diagnostic process, but also the double-edged sword of cognitive biases and/or racial/ethnic stereotyping. The unique challenges of making this diagnosis with PEMG is not currently being considered in the United Kingdom (UK) as evidenced by a recent search of NHS Health Research Authority-ISRCTN Registry partnership (hra.nhs.uk,2023).
As one study within a wider program of PhD work, an audit was conducted to establish General Practitioner (GP) referral patterns to secondary care, relating to race/ethnicity, for diagnosis and/or symptom management of FMS. The audit aimed to establish the extent to which PEMG with the diagnosis were represented within secondary care, identify if specific social categories were differentially referred, identify potentially underserved ethnic minority groups and their geographic location to inform recruitment strategy for subsequent qualitative studies.
Methods
An audit application was approved by Liverpool University Hospitals NHS Foundation Trust’s (LUHFT) Clinical Audit Management System to audit clinics responsible for diagnosis or treatment of Fibromyalgia. LUHFT is one of the largest acute Trusts in the United Kingdom, serving a core population of around 630,000 people across Merseyside, as well as providing a range of highly specialist services to a catchment area of more than two million people in the Northwest region and beyond (liverpoolft.nhs.uk, 2023). Relevant clinics were identified by unique clinic codes. Using these clinic codes, a data request was submitted to LUHFT Business Intelligence, requesting the following non-identifiable patient data from first available (30th January 2009) until 30th June 2023:
- Age
- Gender
- Ethnicity
- Deprivation
- GP partial post code
Irrespective of number of appointments or clinics attended, each person was only counted once. Data was analysed using descriptive statistics in SPSS v29.
Results
Data from 6497 patient encounters were extracted. Generally, white people were most represented, 79.1% (n=5142). PEMG were least represented (n=299). Asians accounted for 1.40% (n=91) of referrals, black people 0.91% (n=59), mixed race 1.03% (n=67) and other ethnicities 1.26% (n=82). Approximately 16% of people did not disclose ethnicity (n=1056).
For those with the diagnosis, referred to FMS specific clinics, white people were most represented (n=969). PEMG were least represented (n=56). Of the PEMG, 16 were Asian, 16 black, 12 mixed race and 12 from other ethnic groups. Approximately 10% did not disclose ethnicity (n=106).
White women aged between 50-69 years, from the most deprived parts of the city, were differentially referred.
Of 86 GP practices within the Integrated Care Board, 13 were identified as referring both white British and PEMGs.
Conclusions
Considering NHS England prevalence estimates (nhs.uk, 2024), published prevalence’s (Cabo-Meseguer, A., Cerdá-Olmedo, G. and Trillo-Mata, J.L., 2017; Heidari, F., Afshari, M. and Moosazadeh, M., 2017; Sarzi-Puttini, P. et al, 2020) and local population demographics (liverpool.gov.uk, 2024), the results indicate that PEMG are being under referred.
Findings support continuation of the PhD project to understand the specific challenges HCPs encounter diagnosing FMS when racial, ethnic, cultural and/or language barriers exist; establish whether differences in lived experience of FMS diagnosis and management exist between PEMGs and white British people; understand differences in awareness of FMS and motivation for health seeking behaviour between PEMGs and white British people and to use this new knowledge to theoretically inform a best practice logic model which provides equal access to early diagnosis and culturally acceptable intervention for PEMGs with FMS.
References
Cabo-Meseguer, A., Cerdá-Olmedo, G. and Trillo-Mata, J.L. (2017) Fibromyalgia: Prevalence, epidemiologic profiles and economic costs. Medicina clínica (English ed.), 149 (10), 441-448.
Heidari, F., Afshari, M. and Moosazadeh, M. (2017) Prevalence of fibromyalgia in general population and patients, a systematic review and meta-analysis. Rheumatology international, 37 (9), 1527.
Liverpool City Council Census (2021) Ethnicity – Census 2021[online] Available at: liverpool.gov.uk/council/key-statistics-and-data/census-2021/ethnicity/ [Accessed: 30th June 2024]
Liverpool University Hospitals NHS Foundation Trust (2023) [online]
Available at: www.liverpoolft.nhs.uk
[Accessed: 13th July 2023]
NHS (2024) Fibromyalgia [online] Available at: www.nhs.uk/conditions/fibromyalgia/ [Accessed: 26th June 2024]
NHS Health Research Authority (2022) HRA-ISRCTN Registry partnership – questions and answers [online] Available at: www.hra.nhs.uk/planning-and-improving-research/research-planning/research-registration-research-project-identifi ers/hra-isrctn-registry-partnership-questions-and-answers/ [Accessed: 13th July 2023]
Sarzi-Puttini, P., Giorgi, V., Marotto, D. and Atzeni, F. (2020) Fibromyalgia: an update on clinical characteristics, aetiopathogenesis and treatment. Nature reviews. Rheumatology, 16 (11), 645-660.
Presenting Author
Amanda Bennett
Poster Authors
Amanda Bennett
Master of Research
Liverpool University Hospitals NHS Foundation Trust | Faculty of Health | Liverpool John Moores University
Lead Author
Selina Johnson
Institute of Life Course and Medical Sciences | Musculoskeletal & Ageing Science | University of Liverpool
Lead Author
Conan Leavey
Faculty of Health | LJMU
Lead Author
Helen Poole
Faculty of Health | LJMU
Lead Author
Topics
- Racial/Ethnic/Economic Differences/Disparities