Addressing Inequalities in Long Covid Healthcare: A Mixed‐Methods Study on Building Inclusive Services

ABSTRACTBackgroundLong Covid (LC) significantly impacts health, economic and social activities. Women, deprived, learning disability, homeless and some minority ethnic populations have high prevalence rates but low access to support, indicating health inequities in LC care.AimTo identify health inequities in LC care and inclusion strategies that align with the priorities of people with LC.Design and SettingMixed‐methods study employing qualitative data from people with LC, professional experts, LC clinic staff and primary care data from North West (NW) London GPs.MethodQualitative interviews with 23 people with LC and 18 professional experts explored the experience of diagnosis and support for people from disadvantaged groups. Framework analysis identified themes that informed the subsequent collection of clinic and primary care data. Staff from 10 LC clinics across England provided survey and qualitative data describing their initiatives to identify and reduce inequalities. Descriptive quantitative analysis of NW London adult primary care records (n = 6078), linked to hospital use across England, explored LC diagnosis and care pathways for diverse groups of people with LC.ResultsStudy participants from disadvantaged groups reported delays in formal diagnosis and specialist referrals being initated and had low trust in healthcare services. They described difficulties in obtaining information, advice and support as barriers to access specialist referrals. LC clinics confirmed the under‐referral of those from the most disadvantaged groups compared to the general population. Primary care data confirmed under‐referral of people with LC to specialist clinics; however, incomplete data across the LC clinical pathway prevented an analysis of equity in referral patterns between population groups.Clinics used various strategies to improve access and increase the flow of disadvantaged groups from primary care to LC services. Interventions included data collection to identify underserved groups, targeting outreach to primary care and community providers, adapting clinic provision and developing care pathways involving multidisciplinary teams (MDTs), primary and secondary care practitioners and third sector organisations. These activities were not widespread, however, and were particular to a few clinics.ConclusionStrategies to improve access to LC healthcare provide a starting point to explore inclusive care pathways for people with LC from disadvantaged social groups. Future research should focus on the effectiveness of initiatives to increase access to specialist LC provision among disadvantaged groups and establish greater trust in healthcare providers.Priorities of People With LC for Healthcare PracticeThis study highlights the need for health system practitioners to identify under‐represented groups and target inclusion initiatives at these populations in sensitive and appropriate ways. Improved diagnosis and support for such populations would be helped by training health and social care practitioners to recognise and accept the accounts of people with LC about their symptoms. Protocols that support consistent practice in referrals for specialist care are also needed. People with LC from disadvantaged groups often lack access to evidence‐based sources of advice and information. Practitioners should provide information on LC while individuals are waiting to receive specialist care and should advocate for support from employers, including work modifications.Patient and Public ContributionPeople with lived experience of LC were involved in the study as members of the research team and LOCOMOTION Patient Advisory Group (PAG). The PAG was involved in the wider study design, including the initial grant application, attending proposal planning meetings and helping to develop the research aim, objectives and questions. During the course of the study, the PAG met quarterly with each other and at least monthly with other research team members to review progress and feed into data collection and analysis processes. PAG members also attended a Quality Improvement Collaborative meeting involving academics and LC practitioners, which discussed initial findings from data analysis of qualitative interviews on LC inequalities. Through these meetings, the group supported and oversaw the study as a whole in terms of how data was collected, recruitment of participants, involvement in data analysis and interpretation, as well as providing more specific advice to all the individual workstreams within the study. A PPI facilitator within the study team provided training and support to PAG members in these areas and was available to respond to other needs expressed by the group. PAG members have also been involved in organising and contributing to a wide range of study dissemination events. PAG involvement throughout the study has ensured that the research is aligned with the key research priorities of people diagnosed with LC as well as those with LC symptoms but no formal diagnosis. PAG members were recruited through and linked to the LC clinics involved in the study and have helped disseminate study findings to local clinical practice, the lay public and other LC centres with which they are involved. S.E. is a PAG member from a minority ethnic background and a co‐author on the paper. She has been involved in overseeing and supporting data collection and interpretation relating to inequalities affecting people with LC and has contributed to the preparation of this manuscript from an early draft to production of the final version.