There is no gold standard to identify or screen for the late effects of polio, but patients need special management as they start to age.
While Australia was declared polio-free in 2000, there is a major need to invest in medical care of many of the tens of thousands of people, who contracted poliomyelitis (polio) during the 20th century polio epidemics and are now experiencing what is known as the “late effects of polio” (LEoP) and its subset, the post-polio syndrome (PPS).
“Late effects of polio” is an umbrella term which includes the onset or worsening of residual muscle weakness, joint and muscle pain, severe fatigue, intolerance to cold temperatures and a range of biomechanical symptoms, such as osteoporosis and scoliosis, that occur usually 15 to 40 years after a person contracted the disease.
Its subset, the post-polio syndrome, is a diagnosable neurological condition. Its symptoms cross over with late effects of polio and may also include loss of function and difficulties with sleeping, breathing and swallowing.
Most survivors of paralytic polio, and many of those who had non-paralytic polio and people who were never diagnosed with polio, are at risk of experiencing the late effects of polio or post-polio syndrome.
Polio Australia, the national peak body representing polio survivors, has been running Federal Government-funded workshops for clinicians and allied health practitioners in hospitals and small community health clinics to deliver information on late effects of polio and post-polio syndrome.
“This was in response to a common refrain from polio survivors that their medical and allied health practitioners simply didn’t understand or recognise late effects of polio or post-polio syndrome,” says Michael Jackson, Polio Australia’s program manager for national education workshops for clinicians and allied health practitioners.
Three takeaways for GPs
“As the first point of contact for any patient, our workshops for general practitioners have three focus points: improved screening and identification of polio in a patient; adopting a multidisciplinary approach to care and making referrals as required; and an appreciation of the patient’s unique risk profile and accordingly managing activity, exercise, fall prevention, anaesthesia and surgery,” says Mr Jackson,
The content of a workshop is adapted to the audience.
“For example, the workshop for nurses focuses on medications and fall risks; and those for occupational therapists is about assistive technology prescription, support services, and managing symptoms that affect polio survivors’ activity and social participation,” explains Mr Jackson.
Since 2017, the program has reached out to over 2000 clinicians face-to-face.
“In a hospital, we inform clinicians in at least one department — occupational therapy, physiotherapy, speech therapy, exercise physiology, orthosis, podiatry, nurses as a group or medical specialists,” he says. “They can then act as an advocate internally to raise awareness of a polio patient’s risks, symptoms and prognosis.”
The other resources GPs can access for assessment and management of late effects of polio and post-polio syndrome include a QR code and a recently updated booklet, LEoP: Introduction to Clinical Practice on the Polio Australia website or the online manual of Health Pathways.
There is no gold standard to identify or screen for late effects of polio because it has a cluster of symptoms which vary greatly among people with a history of polio.
Denise Currie, occupational therapist and coordinator of state-funded Polio Services Victoria at St Vincent’s Hospital in Melbourne says:
“A good starting point for GPs could be to look for any asymmetry in the limbs and see if there is a patchwork presentation of weakness in the muscle groups, which is a hallmark of polio. The polio virus randomly attacks motor neuron units throughout muscle groups unlike in some other neurological-based conditions, such as a stroke, where a similar pattern of weakness is seen in all the muscle groups.”
The only definitive diagnosis for polio is a faecal sample that has been tested in a laboratory at the time that it is contagious, that is, soon after contracting the disease.
“In an adult, it is a diagnosis of exclusion,” says Ms Currie. “A GP could look at the detailed history of the patient and then refer to a neurologist for nerve conduction studies and/or electromyography to make the diagnosis of a history of polio in a patient.”
Risk of falls, fractures and osteoporosis
The risk of falls, fractures and osteoporosis that could hospitalise a patient with polio, causing other comorbidities, problems and dysfunction, is of most concern in polio survivors, according to Dr Nigel Quadros, senior consultant in rehabilitation medicine at The Queen Elizabeth Hospital in Adelaide.
He recommends that GPs check bone density, calcium and vitamin D levels in these patients on a regular basis; and if the patient has osteopenia, then refer them to an endocrinologist for a FRAX (Fracture Risk Assessment Tool) score and advice on how to manage their risk of fractures.
“A fall from a chair or a simple twist could result in fracture in a polio survivor,” says Dr Quadros, who is also a senior clinical lecturer at The University of Adelaide. “They are more at risk of falling due to old mechanical imbalance or spinal curvatures, so they need to be counselled to ensure that they have good footwear, and a stick or crutch for support, if needed.”
Conservative approach to exercise
Exercises to maintain balance can help in preventing falls and subsequent fall fractures, but experts caution that pushing a patient with polio to do too much exercise could make their condition worse.
“It is about maintenance and careful management of the symptoms. A conservative approach in the intensity and volume of exercise is recommended. Hydrotherapy and physiotherapy exercise programs can assist patients to maintain the muscle strength they have got,” says Dr Quadros.
Managing fatigue and pain
Debilitating fatigue and pain are two major problems that polio survivors face, but often clinicians attribute it to aging or do not believe that the patient may have had polio and is now experiencing the late effects of polio or post-polio syndrome.
“In medicine textbook, we learn only two sentences about polio,” says Dr Quadros. “An average colleague of mine has no idea about polio. They, including myself, have never seen an acute polio case.”
The last reported case of polio in Australia was in 2007, when a student contracted the infection in Pakistan.
Dr Quadros recommends pacing, prioritising and delegating daily activities for fatigue management.
“Many polio survivors, who have lived active lives, are now suddenly finding it exhausting to cook, clean, socialise or shop. A likely cause of this functional decline is loss of remaining motor neurons, partly related to the natural ageing process leading to muscle weakness, atrophy and loss. In these patients, if all other medical causes of fatigue, such as anaemia, diabetes, thyroid disease etc., are excluded then it is likely the late effects of polio,” he says.
Refrain from over-correction of deformity
Experts caution against over-correction of deformity whether it is through surgery or orthosis.
“If an allied health practitioner is not accustomed to seeing somebody with the history of polio, they may try to correct everything to kind of normal walking,” says Ms Currie. “It works for someone with stroke-related disability, but a polio survivor has had lifelong compensations and if you try and correct some of those, you may actually make the patient worse.”
Similarly, she suggests getting an assessment from a rehabilitation specialist before going for any surgery.
“We sometimes have had patients who need a hip replacement, and the surgeon might tell them that they can fix the leg length discrepancy at the same time by taking a part off from the femur in the good leg. This, in a polio patient, may just destroy how that person was able to walk,” she adds.
Respiration and anaesthesia risk
Polio can also have an impact on the respiratory muscles. Polio survivors, who had bulbar polio and were in an iron lung, are at a higher risk of respiratory issues.
“It is important for GPs to know that if somebody has had a diagnosis of polio, they may be an anaesthesia risk so they can inform the surgeon and the anaesthetist,” says Ms Currie.
“For many of the polio survivors, their breathing may have been normal when they had polio as a child, and they may not know that there is a degree of compromise in their lung function as they deal with late effects of polio. We have an information booklet on anaesthesia and surgery for health professionals.”
Few dedicated polio clinics
Polio Services Victoria, in its 25th year, is one of the few dedicated polio clinics in the country that provides consultations, a comprehensive assessment and management plan that includes facilitating GP referrals and linking the patient with local services, such as physiotherapy and hydrotherapy.
“Annually, we see about 300 polio patients on Medicare in our specialist medical and health clinics, conducted once a fortnight in Melbourne and six times in regional areas of Victoria,” says Ms Currie. “About 50% of the people, that visit the clinic are Australian-born and had contracted polio here. The remaining 50% of the patients contracted polio in their home countries and have since migrated to Australia. Our youngest client is now 23 years old from Afghanistan.”
Viren Shekhawat, 46, had polio as a one-year-old in India and came to Australia as a student in 1998.
“When I visit a GP or any of the allied health professionals, I do have to tell them about polio and that some of the issues – fatigue and pain – that I am facing could be due to PPS,” he says. “I do my own research and then approach my GP with all the requisite information to get referrals for specialists. Four years ago, I was diagnosed with PPS.
“I also share the anaesthesia and surgery booklet with the anaesthetist before any surgery. Recently, the anaesthetist thanked me for sharing the information as I was his first polio patient and he did not know the impacts of anaesthesia on polio patients,” he adds.
There is no cure for polio, but the right physical therapies, assistive technologies and modification in lifestyle, can help manage the symptoms of the late effects of polio and post-polio syndrome.
“There is a need for polio education programs for doctors and health professionals as we are seeing polio in younger migrant populations,” says Dr Quadros. “If patients are assessed and diagnosed early, preventative measures such as correct orthotics, proper exercise regime etc. can be put in place early. This could save these patients from developing other complications that may result in hospitalisation and more comorbidities and deconditioning, placing an additional burden on the health system.”