Recruitment before protocol amendment was 14 positive inpatients (see Fig. 1). Subsequently minimal inpatient data were collected. At first assessment timepoint (median 5.65 months), recruitment was 293. Due to timing of the amendment in relation to waning COVID19 cases a further 51 people were recruited after that time point, netting a total sample of 344 participants by second assessment timepoint (median 7.56 months). See Fig. 1 for recruitment flow. Of the 344 participants: 63 (18.3%) required admission to hospital, 155 (45.1%) of participants were COVID-19 positive, 201 (58.4%) were female, 328 (95.3%) resided in the Perth metropolitan region, 2 (0.6%) resided >150kms from Perth, 12 (3.5%) resided > 2500 km from Perth, 2 (0.6%) were internationals. See Table 1 for distribution of engagement in the total 637 possible post-acute assessments to eight months. Of the 602 assessments completed, 543 (90.2%) were completed on-site, and 59 (9.8%) were delivered remotely (via phone or telehealth), see Table 2.

Table 1 Participant engagement, combined 1st and 2nd data collection time points, n = 637 possible occasions
Table 2 Comparison of number of assessments completed on-site (543) and remotely (59), n = 602

Streamlined and accessible by design

The methods were developed through a process of rapid consultation, amassing experts in respiratory care, with consumer input sought during this planning. The assessment battery was derived through a robust process to establish consensus between experienced academics and clinicians, undertaken at a time when infection control policy was changing almost daily. Early identification of the need to pragmatically capture short and long-term data pertinent to holistic, physical and mental health recovery was key to the configuration of the standardised battery valid for a disease propagated within the respiratory system [10].

To minimise risk of transmission, the LATER-19 researchers designed innovative methods [7] to promote completion of physical components with minimal physical contact or specialised equipment. Assessments in the inpatient setting utilised a standard oximeter and in-room furniture. Patients could be recruited, and physical measures observed though the room’s window supplemented by phone contact, or bundled as part of usual care, assisted by clinicians entering the environment in personal protective equipment (PPE). For the sustainability of clinical resources, study methods were planned to minimise the use of PPE for research purposes. Assessment of grip strength via dynamometer was achieved by allocating them as single patient use per room, and possible only due to research funding enabling purchase of multiple extra devices (n = 5 per site). The simplicity of recruitment and study methods ensured low participant and clinician burden in the hospital environment, benefiting engagement. The array of survey measures were finalised to maximise follow-up regardless of patient’s capacity to physically assess or interact with them, using either paper-based or digital format dependent on patient circumstances.

Adaptable process

As the original research design did not rely on direct physical contact, the standardised assessment could be reliably translated across a range of settings with minimal data loss. Assessments were successfully completed in the inpatient environment, outpatient department, and via phone/telehealth, the choice of which was tailored to patient circumstances. WA’s well-established telehealth system, developed to overcome the state’s extreme distance and remoteness, was leveraged as key study infrastructure to enhance protocol adherence, quality of data capture, and reduce missing data.

Remote solutions

Digital platforms and telehealth solutions were invaluable in facilitating engagement, and managing risk of disease transmission. Use of the REDCap data management system allowed e-consent and e-survey response, one site recording the uptake of e-consent at > 70, and 98% utilising e-survey. We acknowledge the work of the Perth node of the International Severe Acute Respiratory and Emerging Infection Consortium trial (ISARIC) for pioneering the local process and establishing e-consent modules.

A flexible mode of review ensured physical location, travel restriction or work commitments were minimised as a barrier to engagement. On 20 occasions, participants were able to successfully complete the 1STS with HR measure remotely utilising their smartwatch. One while located in the Middle East and others at home or at their workplace. Two participants were able to complete 1STS with HR and SpO2 measure via phone call by accessing a local pulse oximeter, one in-situ at their metropolitan GP clinic, and another in their home interstate.

Telehealth or phone appointments accounted for 9.8% of assessments, resulting in missing items of HR, SpO2 and grip strength (with exceptions as above) (Table 2). This was balanced by capturing survey data and 1STS test in participants who would have otherwise gone un-recruited. Benefits for video links included a more personal touch, analysis of facial expression, body language, physical impairment and risk. However, these benefits were occasionally thwarted by issues of connectivity and continuity. In most cases issues were rectified by continuing assessment via phone call. Choice of phone or video telehealth was adjusted for the participant’s personal situation [2], accounting for access and familiarity with technology, especially in elderly or disadvantaged populations.

Factors aiding longitudinal protocol adherence

The study follow-up rate was boosted by an eagerness to participate regardless of the participant’s PCR result, reflecting a strong intrinsic community motivation to assist in a situation of global uncertainty. During recruitment, a control participant was so eager to assist that she consented immediately and volunteered to attend the hospital in-person only a few hours after first phone contact was made. Despite being offered the option of a remote appointment, on many occasions, participants working fulltime external to hospital sites chose to take time from their lunchbreaks to attend the hospital in-person to facilitate complete assessments. Also, the two participants based in regional WA preferred to drive > 150 km to Perth, to be able to attend their appointments in-person.

When research meets everyday life

In addition to the standardised instructions, when completing the 1STS remotely the participants were asked to say ‘sit’ every time they came in contact with the chair regardless of whether they were using video linkup or solely phone contact. This enabled the researcher to count repetitions irrespective of any issues with continuity of visual feed. This method also accommodated a participant suffering memory deficit post COVID-19. He had forgotten his scheduled assessment via phone call, and was out shopping. The LATER-19 protocol, participant and researcher were sufficiently flexible to avoid rescheduling as he voluntarily completed the 1STS assessment successfully on a nearby bench seat.

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