Post-acute COVID-19 condition (PACC): a perspective on collaborative Australian research imperatives and primary health models of care

Keywords: clinical guidelines, collaboration, COVID-19, data linkage, long COVID, models of care, patient registries, post-acute COVID-19 condition, research.

As of 18 November 2022, there have been 637 million cases of the novel severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2) globally, leading to 6.62 million (1%) confirmed deaths (Johns Hopkins University (JHU) 2022). Emerging research shows many people describe persistent fatigue, cognitive impairment, shortness of breath, and chest and musculoskeletal pain following acute COVID-19. This syndrome (known colloquially as ‘long COVID’) is named ‘post-acute COVID-19 condition (PACC) by the World Health Organization (2021). The individual impact is variable and often multi-systemic; local research is urgently needed to determine whether Australian experiences differ from those reported internationally.

Victoria’s Clinical Leadership Expert Group (convened by Safer Care Victoria to respond to the pandemic) identified the provision of clinician (Department of Health 2021) and consumer facing guidance (Wark 2020) and collaboration between research groups as priorities in early 2021. The Victorian Post-Acute COVID-19 Study (VPACS) group formed in February 2021 to share latest developments in this rapidly evolving field. The aims of VPACS include improved data linkage, promotion of evidence-based practice, sharing clinical experience and enabling ongoing research. During 20 meetings in 2021, VPACS identified two key imperatives for Australian PACC research and models of care (MoC).

The key activity of VPACS is surveying the Victorian population of COVID-19 cases, to identify patients with PACC, define prevalence in an Australia setting, and establish a Victorian COVID-19 registry. A comprehensive, multidisciplinary questionnaire (incorporating validated tools) will be delivered via RedCap (Table 1), and will also be available to other Australian jurisdictions to foster linkages with national, state and health service datasets. With Department of Health support, all Victorian COVID-19 patients will be invited to participate, and provide consent for medical records access and data linkage. VPACS is also collaborating with the Centre for Victorian Data Linkage on a series of studies using existing public health data. The majority of Australian cases have not required hospital admission, but this cohort are under-represented in present research (McClymont 2021). Collaborative studies of registry data can inform effective MoC in primary care that optimise recovery and reduce longer term disability.

Table 1.  Victorian COVID-19 registry outcome measures.

The Australian clinical guidelines for PACC are regularly updated with close to real-time evidence reviews by the National COVID-19 Clinical Evidence Taskforce (National COVID-19 Clinical Evidence Taskforce 2021; Tendal et al. 2021). The guidelines summarise published evidence about PACC symptoms and management principles, but is currently limited by the small number of available Australian studies. This will ease as new evidence emerges; however, the guidelines reflect established MoC in which assessments and interventions have been tested. As previously noted in this journal, Australia’s primary care funding arrangements can inhibit innovative MoC (Duckett 2020). The pandemic has amply demonstrated the capacity of the health sector to rapidly respond to evolving demands; however, we are yet to see proactive action on the establishment of multidisciplinary PACC clinics

The foundation of building an Australian evidence base for the management of PACC is collaboration between consumers, researchers, clinicians and institutions. We need large, multicentre controlled studies (Amin-Chowdhury and Ladhani 2021) to define the rates, duration and prognosis for PACC. There is limited evidence on the potentially protective effect of vaccination (Antonelli et al. 2022) and differential impacts from variants of concern. We need ongoing exploration of pathobiological underpinnings and disease mechanisms, which will be crucial to mitigating future pandemics that might further cripple our economy. The lived experience of people with PACC (particularly those managed in the community) is another essential area of investigation, to complement and enhance healthcare-led research. Groups like VPACS can maximise research impact on a state, national and international level by bringing clinician researchers (in both primary and tertiary care), basic scientists and consumers together to work on a shared vision of holistic MoC and best outcomes for patients and the broader community.

Data sharing is not applicable as no new data were generated or analysed during this study.

The authors declare no conflicts of interest.

This research did not receive any specific funding.