Long COVID: Developing an OT service for a novel disease

Nepean Hospital had up to 500 people admitted with COVID-19 over just a few months from June 2021 when the Delta outbreak occurred in NSW. During this time, its occupational therapists became curious about how these patients were recovering after discharge. Internationally, reports were emerging about a condition known as long COVID, in which individuals were continuing to experience a variety of unresolving, multisystemic COVID-19 symptoms after recovering from an acute COVID-19 infection. We started asking questions and researching whether there was an emerging and unmet need for this cohort to receive occupational therapy intervention.

Skye Deutschbein,Occupational Therapist, Nepean Hospital, NSW

What we found

Post-acute sequelae of COVID-19 (PASC) – known colloquially as long COVID – is defined by the World Health Organization (WHO) as “the condition that occurs in individuals with a history of probable or confirmed SARS CoV-2 infection, usually three months from the onset of COVID-19, with symptoms that last for at least two months and cannot be explained by an alternative diagnosis” (WHO, 2021).

Evidence suggests more than half of COVID-19 survivors can experience long COVID six months after recovering from the acute infection (Groff et al., 2021). The most common symptoms reported are fatigue, breathlessness, cough, depression, anxiety, cognitive impairment (brain fog), joint and muscle pain, mobility impairment, palpitations and chest pain, altered sense of taste/smell and post-traumatic stress disorder (WHO, 2021).

It became clear that this cohort could benefit from occupational therapy intervention. Unfortunately, due to the novel nature of this emerging disease, services did not exist in the Nepean Blue Mountains Local Health District to assess and assist the growing number of patients who needed access to support as a result of long COVID.

A new service emerges

In December 2021, Nepean Hospital used temporary funding to establish the first post-COVID clinic in NSW in response to this need. This clinic is a multidisciplinary clinic staffed by medical specialists (rehabilitation, infectious diseases, cardiac and respiratory), physiotherapists and occupational therapists. At the time of establishing this service, very little literature existed locally or internationally detailing an effective occupational therapy service delivery model for this cohort of patients. We were aware that any service delivery model needed to include telehealth options as a result of COVID-19 restrictions during the pandemic. A post-COVID occupational therapy service at Nepean Hospital was developed to address the needs of long COVID.

Current OT service delivery model for post-COVID clinic 1. Referral received and triaged: Referrals can be accepted from the medical specialists in the clinic, general practitioners and other allied health professionals. Referrals should include the date of COVID-19 diagnosis and severity of disease, including hospital/ICU admission.

2. Initial assessment: Telehealth assessment completed over the phone, including the following:

• An occupational therapy initial assessment to ascertain the patient’s occupational roles; • Completion of the COVID-19 Yorkshire

Rehabilitation Scale (C19-YRS), a patientreported outcome measure that provides comprehensive information about the patient’s specific long COVID symptoms; • Determine which symptoms are impacting on occupational performance as per patient report and significance to patient; • Refer on to other disciplines as required; and • Provide verbal education as required.

3. Provision of written resources: posted to patient as needed, including sleep hygiene, and cognition and fatigue post-COVID-19.

4. Follow-up phone call: approximately two weeks later to discuss resources, specific strategies implemented and patient progress or barriers. For many patients this more generalised education and follow-up has been adequate to empower patients to manage postCOVID symptoms independently in conjunction with natural recovery. If this is the case, the patient can be discharged at this stage.

5. Home visits: A home visit is offered to a small number of patients who are more significantly impacted by long COVID symptoms. These patients benefit from a home visit to discuss the individual impact of long COVID on their occupational performance in greater detail – most often for symptoms such as fatigue, brain fog, depression and anxiety. Assessments on the initial home visit include the following:

• Completion of the PROMIS-29 (qualityof-life patient self-reported scale) • Completion of the Fatigue Severity

Scale (patient self-reported scale) • Functional assessments as indicated • Therapist completion of the

AusTOMs for Occupational Therapy as an outcome measure

The patient is provided with an activity log to document activities undertaken during their day/week and asked to note any physical or cognitive fatigue experienced following these activities. Daily or weekly goals are developed in conjunction with the patient. This information is used to draft a weekly timetable which incorporates specific energyconservation principles and memory strategies specific to the individual patient’s needs.

Over the following weeks, these goals and timetables are adjusted until the patient feels empowered to independently implement strategies and adjust these as required. Outcome measures are repeated at the completion of treatment before discharge from the service.

Barriers to service delivery

Several barriers have been negotiated in developing this service while the health system responded to a new and ever-changing pandemic. These have included the following: • Mutating strains of COVID-19 and unknown impacts of each new variant • Limited worldwide evidence of the cause of long COVID and effective treatment modalities • Providing a service via telehealth while face-to-face services and home visits were cancelled due to lockdowns • Increasing awareness of the service to patients who had not needed to access hospital services while acutely unwell with

COVID-19 but who had their occupational performance impacted by long COVID • Uncertainty of ongoing funding and resources to continue to provide services to this cohort of patients • Few other occupational therapy services in the country or around the world to provide an example of a service delivery model for patients with long COVID

Looking to the future

Evaluating this new and evolving occupational therapy service is the next step to ensure we are delivering appropriate and effective services to this cohort of patients with long COVID. Outcome measures will be compared before and after intervention, including the PROMIS-29, Fatigue Severity Scale and AusTOMs for Occupational Therapy. Occupational therapy intervention will also need to be flexible as new evidence emerges about the cause of long COVID and available treatments. Ongoing advocacy is also currently occurring to ensure this service attracts permanent funding to provide appropriate health care to patients experiencing this new and changeable condition.

In summary, patients who have had COVID-19 and develop long COVID have limited access to health care specific to their needs, and little evidence exists supporting service delivery methods and treatment modalities. With the impacts caused by the pandemic, healthcare providers need to be adaptable and flexible as new and emerging health needs become evident. Occupational therapists already have a sound body of knowledge to assist this cohort of patients and should be included in any post-COVID services developed.

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