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Post polio syndrome

  • This Guidelines summary outlines the key points for primary care. Please refer to the full guideline for the complete set of recommendations

Presentation

  • A polio survivor may present with new weakness, pain, neuromuscular and/or general fatigue, respiratory difficulties or sleeplessness and they may or may not refer to prior polio
  • As early symptoms such as fatigue are commonly experienced, polio survivors may live with increasing problems for a considerable time before seeking medical help
  • Coping mechanisms used for years may no longer be effective
  • New symptoms may reawaken the emotional distress experienced during the initial disease making discussion difficult for patients

Assessment

History checklist

Polio infection and treatment

Polio infection and treatment (if known)

 

Age at onset

Severity and progression

Respiratory impact in acute phase

Acute management

Age at best recovery

Maximum functional recovery

History since polio

Change in functional ability, degree, speed and nature of change

Present status

Recent changes in activity levels, employment, environment, nutritional status, general health and lifestyle

Symptoms checklist

Full symptoms checklist—onset, duration, location, triggers

Fatigue—neuromuscular, mental and general (including endurance)

Weakness/atrophy

Pain—muscular, joint, soft tissue

Respiratory status

Dysphagia/swallowing status (including risk of aspiration pneumonia)

Sleep quality

Psychological well-being (anxiety, stress)

Mobility (including endurance)

Spinal or joint deformities (including history of change)

Bowel/urinary function

Activity level—to assess overuse (activity diary)

Falls history/frequency

Medication review (for adverse impact on symptoms)

Weight history

Smoking history

Daily activities function—self-care ability (including cooking, shopping), aids, appliances, and adaptations used

  • Effective assessment needs a full history and symptom review, and should take into account their early experiences
  • Chronic or new overuse of affected or unaffected areas can trigger or exacerbate post polio syndrome (PPS) symptoms; activity levels in paid or unpaid work, sports/fitness or daily life need to be assessed
  • Fatigue, weakness, and pain can also be caused by other conditions which need to be excluded. The presentation may resemble other conditions risking misdiagnosis
  • Commonly used assessment tools such as manual muscle testing can give a false impression of strength as one-off movements may be strong but PPS patients often show poor endurance over repeated movements or during sustained movements. These should be used alongside other methods such as variances from a well-documented baseline
  • Respiratory insufficiency may develop insidiously, initially at night, in individuals who appeared previously unaffected, with symptoms such as unrefreshing sleep, frequent wakening, waking with headaches, daytime sleepiness, waking gasping or difficulties lying flat. Obstructive sleep apnoea is also common in PPS patients. These complications are most prevalent when there is an additional strain on the respiratory muscles such as respiratory infections, periods of immobility, surgery, pregnancy or obesity. Assessment for respiratory complications should be considered both for those with night-time symptoms or daytime effort-related shortness of breath
  • Difficulty with swallowing is a potentially serious problem for polio survivors and those with PPS; if suspected referral to a Speech and Language Therapist is strongly recommended. This should advise that any tests involving observing muscle action need to involve several repetitions to assess the impact of abnormal neuromuscular fatigue. Patients should be assessed for risk of aspiration pneumonia
  • Cold intolerance is common but underreported and can affect motor function and comfort

Management interventions

Strength of the evidence: +++=strongly recommended, ++=recommended for some, +=intervention may help; !=intervention may help with precautions

A multidisciplinary approach

  • Strongly recommended, involving GPs, physiotherapists, occupational therapists, orthotists, and other allied health professionals with referral to specialist consultants as required (see referral criteria)

Energy management techniques

  • Can alleviate the symptoms of neuromuscular and general fatigue, and reduce pain. Referral to a specialist physiotherapist or occupational therapist with experience in managing neurological conditions is recommended for assessment and training in these techniques

Pacing activity +++

  • Effective in reducing neuromuscular fatigue and pain, and may improve performance for some

Energy conservation +++

  • Adapting, simplifying and prioritising daily tasks can preserve energy and avoid neuromuscular fatigue and pain

Aids and appliances +++

  • These can help in energy management. PPS patients may need encouragement to use aids, which may remind them of the original polio

Orthotics +++

  • An orthotics review by an experienced specialist can help reduce overuse and misuse, and reduce energy cost of walking by optimising orthoses and footwear. Optimised orthotics may help reduce falls

Respiratory management +++

  • For confirmed respiratory insufficiency, due to weak respiratory muscles or scoliosis, respiratory support in the form of non-invasive ventilation, normally bilevel positive pressure (BiPAP), usually only at night, is the recommended treatment. Continuous positive airway pressure (CPAP) is used for obstructive sleep apnoea. If secretion retention is an issue, a respiratory physiotherapist can advise on positions of treatment and also devices such as cough assist that might be useful in the case of a persistently weak cough

Exercise and physical activity ++!

  • Once good energy management is established, these can be considered under the guidance of a specialist physiotherapist with experience in management of neurological conditions, to strengthen muscles where possible and help improve cardiovascular health. Caution: safe and effective exercise for people with PPS requires an individually tailored non-fatiguing, pain-free programme and careful monitoring to avoid overuse

Pharmacological management +

  • As there is no medication proven to reverse the progress of PPS, pharmaceutical interventions are aimed at alleviating symptoms such as fatigue, pain and poor sleep. To date none have been proven to reduce the fatigue and neurological weakness of PPS. Some medications can alleviate pain and are used after energy management techniques have been tried
  • Side-effects of some medications can worsen PPS symptoms such as increased weakness, fatigue, respiratory depression or muscle pain/cramps
  • Anabolic steroids are not recommended to improve muscle bulk as the risks due to side-effects greatly outweigh the potential benefits. Metabolic stimulants such as L-carnitine and co-enzyme Q10 have been studied but not been proven to be effective
  • The efficacy and safety of intravenous immunoglobulin is currently the subject of a multi-centre randomised controlled trial

Vaccination

  • As with other chronic diseases, pneumococcal and influenza vaccinations are prudent to offer given the respiratory issues already outlined

Psychological therapies

  • May be helpful in treating symptoms such as depression and anxiety. They may also enhance the efficacy of physical interventions by promoting behaviour change and improving the ability to cope with physical symptoms

Nutrition and weight management

  • Dietary advice to optimise nutritional status may also support functional status. Weight loss may help reduce neuromuscular fatigue and pain, taking account of probable low proportion of lean mass and low mobility. Underweight may be due to poor diet, swallowing issues or difficulty shopping/cooking and may impact PPS symptoms. Caution: if advising exercise, see the advice on a safe effective programme in the full guideline

Other conditions

  • Management also needs to include treatment of other conditions which occur more commonly in polio survivors such as osteoporosis and peripheral neuropathies. If a PPS patient smokes, smoking cessation advice and support can prevent worsening respiratory function and vascular complications

Review

  • As PPS is a progressive condition, regular review, ideally once a year, is essential to identify increasing muscle weakness, fatigue and/or pain and to adapt the individual’s management programme accordingly

Criteria for referral to secondary care

  • Development of new neurological symptoms
  • Progression or deterioration of long-standing neurological symptoms
  • Uncertainty regarding the diagnosis of PPS
  • Advice about symptom management in PPS, especially where respiratory complications or dysphagia are suspected
  • Need for advice on failure of treatment that was previously effective in PPS
  • Need for specialist advice on orthotics, biomechanics and orthopaedic problems

Further information

full guideline available from…

The British polio Fellowship, The Xchange, Wilmington Close, Watford, WD18 0FQ

(Tel–0800 043 1935); Email: info@britishpolio.org.uk; Web: www.britishpolio.org.uk

The British Polio Fellowship.Post polio SyndromeA guide to management for healthcare professionals. October 2017.

First included: February 1997. Updated August 2009, July 2018.