BACKGROUND: Long COVID (LC) is a chronic, multisystem condition affecting millions globally, with significant personal, social and economic consequences. Despite increasing recognition of its impact, healthcare services for LC remain inconsistent with patients frequently encountering fragmented services, scepticism and delays leading to patient-voiced frustration. Therefore, understanding patient priorities is crucial for optimising service provision.
OBJECTIVES: To explore what individuals with LC want from healthcare services-drawing on their lived experience and collaborative insights with clinicians and researchers, to inform principles for improving care delivery, barriers to access, expectations for service improvement, and the role of multidisciplinary care in managing LC.
METHODS: A qualitative study using thematic analysis was conducted, incorporating multiple data sources, including semi-structured interviews, workshops, and a patient-led audit. Key themes were identified, focusing on healthcare access, clinical assessments, treatment options, and service organisation.
STUDY PARTICIPANTS: Twenty-seven LC sufferers from the LOCOMOTION Patient Advisory Group (PAG) and Patient Advisory Network (PAN), along with clinicians and researchers involved in LC service provision across the United Kingdom, participated in the study.
RESULTS: Three major themes emerged: (1) Who the services are for: Equity of access for all those with LC. Barriers such as stigma, inequitable access and lack of clinician awareness need to be addressed. (2) What services should do: Consistent and standardised assessments and diagnostic clarity-particularly for modifiable conditions like autonomic dysfunction-and an emphasis on the need for early medical intervention, not just rehabilitation. (3) How services should operate: Care should be coordinated, proactive and adaptable to evolving evidence. Patients should not be discharged without ongoing review. Multidisciplinary collaboration should be patient-centred and informed by up-to-date research.
CONCLUSIONS: LC services should be designed to provide equitable, standardised and evidence-based care. Early intervention, appropriate medical testing and sustained follow-up are critical to improving patient outcomes. Patients emphasised the importance of being heard and the value of receiving timely care that reflects the latest scientific understanding and recognises their condition as real, treatable and deserving of ongoing clinical attention. Incorporating these insights into healthcare design may improve outcomes, service efficiency and trust between patients and providers.
PATIENT AND PUBLIC CONTRIBUTION: Patients led all phases of this study, including design, analysis and writing, through active co-production with the LOCOMOTION research team. The paper was born out of discussions within the LOCOMOTION study's Patient Advisory Group (PAG). It was taken forward by C.R., N.S. and R.M., all members of the PAG, working closely with N.B., H.d.K. and G.M.
Long Covid