Clinicians around the country are being given the tools to record people diagnosed with long COVID, which will help provide a clearer picture of the impact of the condition over time.
Clinical codes have been developed for hospital level care for patients with “ongoing symptomatic COVID-19” and “Post COVID-19 syndrome”. These codes are currently being rolled out across all medical record IT systems used in primary care.
People with on-going symptomatic COVID-19 are defined as having signs and symptoms of COVID-19 from 4 weeks up to 12 weeks after testing positive.
People with post-COVID-19 syndrome are defined as having signs and symptoms that develop during or after an infection consistent with COVID-19, continue for more than 12 weeks and are not explained by an alternative diagnosis.
Post-COVID conditions usually present with clusters of symptoms, often overlapping, which can fluctuate, relapse and change over time and can affect any system in the body.
The shorter-term on-going symptoms from COVID-19 and the longer-term clusters of symptoms are separately coded, but both are considered long COVID.
Once these codes are in regular use, over time Manatū Hauora the Ministry of Health will be able to track detailed information about the impact of COVID-19, including those groups most vulnerable to its effect.
The Ministry’s Long COVID Expert Advisory Group, chaired by the Chief Allied Health Professions Officer Dr Martin Chadwick, has also endorsed an agreed case definition for post-COVID-19 conditions based on the UK NICE guidance and guidelines for long COVID rehabilitation. The guidelines will be finalised and published in the coming weeks and will support self-care for patients, whānau and carers as well as helping clinicians in diagnosing long COVID and managing the condition for patients.
An important message for people with COVID-19 is to allow yourself time to recover as that may help reduce the chances of further symptoms of long COVID, Dr Chadwick says.
“The vast majority of people who test positive for COVID-19 will recover within weeks and return to normal health. But for a small group of people symptoms will persist and have a lasting effect on their health,” Dr Chadwick says.
“Because COVID-19 is relatively new, there remains much we do not know about its long-term effects. Although it is difficult to precisely predict the likely burden of long COVID in New Zealand, given the large number of people who have had COVID-19 in Aotearoa New Zealand, it is likely to result in impacts on individuals, families and whānau quality of life and wellbeing, and the healthcare system over time.”
For New Zealanders' health, it’s important we build on the information we are gathering now, to ensure the support being provided to people with long COVID is informed by the latest evidence.”
New evidence around long COVID continues to emerge from around the world and we are continuing to watch developments closely. As noted by the World Health Organization, even people who were not hospitalised and who had mild illness can experience persistent, fluctuating or relapsing symptoms and some patients develop medical complications that may have lasting health effects.
There are also ongoing conversations between the Ministry and its counterparts in other countries, including Australia, Italy, Canada, and United Kingdom, about using new methods for supporting people with long COVID, including digital tools for self-care.
“We continue to look for innovative ways for supporting people that continue to have ongoing effects from COVID-19.”
Symptoms of Long COVID
Unfortunately, for long COVID there are often very few signs, and there is no test for long COVID. Therefore, the diagnosis is made on the basis of persistent symptoms occurring after a person has had COVID-19. There are a wide range of symptoms for acute COVID-19 and for long COVID, but these symptoms are also common in many other conditions. Ongoing symptoms can vary widely and affect people differently.
There are many different conditions that share these symptoms, so it is important to check with your doctor before assuming something is due to a COVID-19 infection. Importantly, long COVID symptoms may be less commonly reported in children or young adults, and it has been noted that symptoms for this group differ.
Commonly reported symptoms in adults include (but are not limited to) the following:
- Chest tightness
- Chest pain
- Cognitive impairment (‘brain fog’, loss of concentration or memory issues)
- Sleep disturbance
- Pins and needles and numbness
- Delirium (in older populations)
- Mobility impairment
- Visual disturbance
- Musculoskeletal symptoms
- Joint pain
- Muscle pain
- Gastrointestinal symptoms
- Abdominal pain
- Nausea and vomiting
- Weight loss and reduced appetite
Ear, nose and throat symptoms
- Sore throat
- Loss of taste and/or smell
- Nasal congestion
The most common symptoms in children are:
- Changes to sense of tate and smell
- Unusual tiredness/fatigue
- Difficulty concentrating/brain fog
- Sleep disturbances
Children can also have:
- Muscle aches
- Joint pain
- Low mood
- Difficulty sleeping
- Chest pain
- Fast-beating or pounding heart
- New or worsening urinary symptoms
The Long COVID Expert Advisory Group
The Ministry has established the Long COVID Expert Advisory Group to assess the evidence on long COVID and apply it to the Aotearoa New Zealand context, to help inform recommendations for clinical practice and guidelines. The group will provide oversight, with broad representation from Māori, Pacifica, researchers consumers, clinicians, and service providers.
The Long COVID Expert Advisory Group has its first meeting on 1 June 2022. Its members include:
- Dr Martin Chadwick (Chair) - Chief Allied Health Professions Officer within the Ministry of Health
- Dr Donna Cormack (Kāti Mamoe, Kai Tahu) – Senior Researcher, Department of Public Health University of Otago
- Dr Arran Culver – Deputy Director-General, Mental Health and Addiction Directorate, Ministry of Health
- Jo Hikaka (Ngāruahine) - Research fellow at University of Auckland
- Rāwā Karetai Wood Bradley – Principal Advisor to Deputy Chief Executive, Strategy, Policy and Performance, Whaikaha, Ministry of Disabled People and lived experience with disability
- Rawiri Keenan (Te Ati Awa/Taranaki) - Leader and educator of Māori general practitioners.
- Luke Maclean-McMahon – Lived experience of long COVID, Cook Island Maori with Irish and Scottish ancestry.
- Jen Mepham - Chair Physiotherapy NZ, Cardiorespiratory Special Interest group and physiotherapist working at Mercy Hospital, Dunedin
- Cathy O’Malley - General manager strategy, primary and community at Te Whatu Ora, Nelson Marlborough
- Sharon Russell - Associate Chief of Allied Health Scientific and Technical professions officer at Te Whatu Ora Waitematā
- Emily Sorby - Māori Director Starship Community at Te Whatu Ora Auckland
- Dr Ian Town - Chief Science Advisor within the Ministry of Health
- Robyn Whittaker - Clinical Director of Innovation at the Institute for Innovation and Improvement, Te Whatu Ora Waitematā
- Juanita Woodhouse - Lived experience of long COVID, New Zealand Māori
- Youth representative – In the process of being confirmed