Rehabilitation for Guillain-Barre Syndrome

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Introduction   

Guillain–Barré syndrome is a rare inflammatory autoimmune disease that damages the myelin sheaths of nerves, causing neurological symptoms such as progressive weakness, temporary paralysis, and, at worst, morbidity (1). Most patients recover; however, some have long-term effects. As nurses, we must understand this syndrome and be able to care for those who are stricken with it.   

Case Study 

A patient comes into your emergency department stating they cannot feel their legs and feet. Their extremities are numb and tingling. As a nurse, you would assess for the usual symptoms of injury, falls, or back pain. The patient states they were doing their normal activities at home in the last few days, and suddenly, these symptoms arose. You are a bit puzzled after taking vital signs, assessing for lower extremity issues, and checking pulses and neurological symptoms of extremities. 

During your discussion with the patient, they stated that they recently recovered from an upper respiratory virus that was going around at work. What could this be? Could these symptoms be related to that illness? 

After all testing and imaging, the diagnosis was Guillain–Barré Syndrome.  

Epidemiology 

Guillain–Barré Syndrome is an acute autoimmune disease that causes generalized and progressive weakness and polyneuropathy (8). Its outcomes vary from complete recovery to paralysis to death. The effects may be mild, depending on how far it ascends in peripheral and root nerves. It can progress to respiratory failure, needing intubation and venting, and dysphagia requiring nasogastric tubes. Adults are more prone to the disease than young people, and a retrospective study by the Indian Journal of Medical Research found that out of 66 patients, the mean age was 40.69 or 62.1%, with a majority being males (1). 

In 2019, there were 150,095 cases worldwide, with 1.9 cases per 100,000 patients. This is a 6.4% increase since 1990 (8). Patients in the high-income category in Asia Pacific were 6.4% per 100,00 population, and North America was 2nd in the high-income category, with 4.2% of 100,00 people. The number of cases worldwide increased from 90,249 in 1990 to 150,095 in 2019 (8). Another important note is the national age-standardized years lived with disabilities stemming from Guillain–Barré syndrome was 0.2-1.9 cases per 100,000, with the highest number being in Japan. In contrast, the lowest years lived with disabilities were located in China at 0.2 per 100,000 (8). 

The highest rates of Guillain–Barré syndrome were found in higher socioeconomic regions in countries worldwide. Mortality rates are between 2% – 10% depending on the country. In North America and Europe, the mortality rate was 2%-7%. Males or those assigned as males at birth (AMAB) were most affected by Guillain–Barré syndrome with a ratio of 2-1 males to females (1). According to the 2008 study, “Economic Cost of Guillain–Barré syndrome,” the cost of Guillain–Barré syndrome in the U.S. was estimated at $1.7 billion (9). Per patient, the mean cost was $318,966 (9). 

Risk Factors 

Guillain–Barré can affect patients of all ages, but the risk increases for older patients. Males and those assigned as males at birth (AMAB) are at a slightly higher risk of developing this illness. Some known triggers of Guillain–Barré syndrome are infection, viruses including Zika and HIV, Hepatitis A, B, and C, surgery and trauma, as well as Hodgkin’s Lymphoma. Recent studies have shown an increase in Guillain–Barré after having the flu or receiving some vaccinations for Covid-19, specifically Johnson & Johnson/Janssen (4, 12). A diarrheal or respiratory virus 4-6 weeks before symptoms may also cause Gillian Barre Syndrome. 

Pathophysiology and Etiology 

Guillain–Barré syndrome, also called Landry’s paralysis, is an “acute immune-mediated polyneuropathy” (6). It is an ascending illness, meaning it most often attacks the lower extremity nerve roots initially, then moves up the body over a few days or weeks. It can start in the upper limbs and face but is rare. We now know that this syndrome is an autoimmune response to prior infection. We are still uncertain why the patient’s immune system attacks and breaks up the myelin sheath of peripheral nerves and their nerve roots, causing temporary paralysis (6). It is also associated with the absence or decrease in deep tendon reflexes and consists mainly of T-cells and macrophages (4, 6). Cranial nerves can become involved, causing a Bell’s palsy-like syndrome and can, in fact, cause wide fluctuations in blood pressure, postural hypotension, and arrhythmia (1). Respiratory failure can occur with patients being intubated and ventilated.   

The most prevalent reason for contracting the syndrome is an infectious illness in the recent past. Common risk factors include Mycoplasma pneumonia, cytomegalovirus, Campylobacter jejuni, and gastroenteritis (1). Other viruses that may cause Guillain–Barré syndrome are Epstein Barr and the flu viruses (1). There is evidence that certain vaccines may cause Guillain–Barré syndrome (1, 12). 

The provider must complete a medical history to diagnose Guillain–Barré syndrome, including a neurological assessment of bilateral lower limb muscle strength, how fast symptoms emerged, and how reflexes react. A lumbar puncture to test cerebral spinal fluid might be performed to determine if there is more protein and fewer immune cells, which may indicate Guillain–Barré syndrome. A nerve conduction study may also be performed to assess the capability of nerves to send a signal to the body since, in Guillain–Barré syndrome, the nerves are slower to respond due to myelin sheath damage (2). An MRI may also indicate the cause of weakness (2). Since there are different presenting symptoms and differential diagnoses, Guillain–Barré is somewhat difficult to diagnose (7). 

Clinical Signs and Symptoms 

The most common signs and symptoms of Guillain–Barré syndrome are numbness, pain, or weakness bilaterally in the lower extremities (3). These symptoms will ascend symmetrically due to the de-myelinization of the nerve roots and the peripheral nerves. As we have already discussed, it occurs more often following a viral infection or as recently revealed, possibly from a vaccine. Guillain–Barré usually occurs 4-6 weeks following either the illness or vaccine (4).  

The symptoms progress over 12 hours up to 28 days or when they plateau; 25% of patients will have respiratory insufficiency as the disease ascends to the upper nerves in the body. At this point in the progression, significant complications can occur, such as respiratory failure, sepsis, pulmonary embolism, and gastrointestinal bleeding; 66% of patients cannot walk independently when they reach maximum weakness (4). In the worst cases, a patient may be unable to walk independently for 1-6 months (4). As previously stated, 5% of patients die from other infections during the illness (4). Early swallowing assessment is used to identify those at risk of aspiration. 

Case Study 

Reflect on the following personal case study: 

In 1972, my then 17-year-old brother-in-law played football for a club league in Boston. He suddenly could not feel his feet and told his coach he had to go home because he was not feeling well. When he got home, he had to crawl up the stairs. His parents took him to a Boston hospital immediately, and he was diagnosed with Guillain–Barré syndrome after a few days of testing. Unfortunately, it ascended to his upper nerves, causing respiratory failure, and he needed to be intubated and vented with subsequent tracheostomy.   

He may have had other infections unknown to us at the time. However, he was hospitalized for seven weeks. He lost at least 40 lbs., and it took a very long rehabilitation for him to regain all mobility. He now, at 68, has had several joint replacements and cardiac arrhythmia with a pacemaker-defibrillator. After researching this course, I am convinced these are long-term effects of Guillain–Barré. 

In another case, the 10-year-old daughter of my husband’s cousin also contracted Guillain–Barré, but fortunately, it only ascended to her thighs. It was proposed to her mother that she may never walk again. She started rehabilitation in a wheelchair, then graduated to crutches, and then regained full mobility. She, fortunately, was able to continue to compete in gymnastics within the year post-syndrome. 

Treatment 

In the initial phase after diagnosis of Guillain–Barré, a study by Jinfeng Lin, MD et al. (5) included 2472 patients from trials with 15 kinds of therapies. They found that methylprednisolone and prednisolone had no improvement vs. placebo (5). There was a significant improvement, however, with plasma exchange (PE) and intravenous immunoglobulin (IVIG). These two therapies showed quicker recovery if started within two weeks of the onset of symptoms (5). A disability scale was used in the study as follows (5): 

• 0=Healthy 

• 1=Minor symptoms or signs of neuropathy but able to do manual work. 

• 2=Able to ambulate with assistance from a cane.  

• 3=Able to walk with an assistive device. 

• 4=Confined to bed or chair.  

• 5=Requiring assisted ventilation 

• 6=Deceased 

If the patient is unable to walk or is bed-bound, prophylactic treatment for deep vein thrombosis will be initiated. Labile blood pressure will also be treated, and if bradycardia exists, it may be necessary to place a temporary pacemaker (4). Urinary retention and constipation are also assessed and treated as necessary. Some patients may need a nasogastric tube to keep the stomach empty (4). 

As soon as the patient is admitted, rehabilitation happens in the hospital to assist with pain, weakness, and dyspnea (10). Physical therapists and nurses will perform passive ROM if the patient is immobile. Once the patient is able, Physical Therapy will work with them to perform strengthening exercises, mobility, and maintenance of posture (10). The goal of therapy is to regain total functional independence, improving quality of life (10). 

The following treatments are taken from the study “Effectiveness of Physiotherapy Intervention in Guillain–Barré Syndrome” (10). 

• Passive range of motion to reduce flaccidity. 

• Passive contract-relax stretches to the Achilles tendon to prevent contractures. 

• Proprioceptive neuromuscular facilitation to upper and lower extremities to normalize muscle tone. 

• Isometric and rhythmic stabilization of lower limbs and quadriceps to improve muscle strength. 

• Transcutaneous electrical nerve stimulation (TENS) to alleviate tingling. 

• Segmental and pursed lip breathing exercises to prevent respiratory complications. 

• Supine-to-sit transition training with rolling facilitation to enhance functional status and mobility. 

According to a study cited in Physiopedia, the following three phases were recommended to physical therapists for patients with Guillain–Barré (11): 

1. “Acute/Ascending Phase (first 2-3 weeks): prevention of complications of immobilization (contracture, pressure injury, etc.), supporting pulmonary function, and pain management. 
2. Plateau Phase: increasing upright posturing, improving pulmonary function while avoiding fatigue/overexertion, gentle stretching, and active-assisted and active range of motion as tolerated for gradual improvements in mobility. 
3. Recovery/Descending Phase (2-4 weeks after the plateau phase): increased upright posturing and weight-bearing, encouraging a high-intensity rehabilitation approach utilizing active resistance training and neuromuscular facilitation techniques.” 

Physical therapy, massage, and relaxation techniques are helpful to decrease pain and help the patient to rest. Other essential practices are chest physiotherapy, respiratory and occupational therapy, and frequent position changes (10). 

Nursing and Safety Considerations 

As nurses, the safety of all patients we care for is of the utmost concern for everyone involved. Whether it is making sure we follow the rights of giving the appropriate medication, having bedrails in the proper position for each patient, or assessing their mobility, skin, and mental status, there are many things we must remember to keep our patients and ourselves safe. 

In a patient with Guillain–Barré syndrome, safety will require special ongoing assessments. Vital signs for changes in respiration, labile blood pressure, and heart rate are vital and must be passed to the team. If the patient is intubated, the nurse must assess and monitor for infections such as pneumonia or other respiratory issues (11). Changes in weakness, pain, and cardiac monitoring for dysrhythmias are vital.  

Nutritional function is continuous by nursing, especially if there is a nasogastric, gastrostomy tube, or parenteral nutrition. If the patient is eating, assessing swallowing ability is essential to reduce the chances of aspiration. Assessing bowel sounds and bowel movements is necessary not only for nutritional status but also for skin integrity. Assessing skin for breakdown and repositioning every 2 hours will assist in maintaining skin integrity. Using compression stockings or boots will decrease the chances of deep vein thrombosis (11).  

Another essential safety assessment is checking for lower extremity tendon reflexes and the ability to ambulate or move in bed. Intake and output measurements are helpful to determine changes in bladder function and fluid imbalances (11). Keeping the patient as comfortable as possible using a pain scale or pictures is essential, and assessing the patient for psychological concerns is necessary as fear, anxiety, and depression can arise (11). 

Coordinating care for patients with this illness is also an important safety consideration for nurses. All team members should be well-versed in their abilities to provide the proper care for the patient and protect them from harm (11). Some risks of inadequate care in all phases of illness and recovery could cause untoward events such as contractures, respiratory and cardiac issues, fluid and electrolyte imbalances, and the development of decubiti (11). 

During the patient’s course of this illness, education at each step should also be a priority for the patient and their family or significant other(s). At the initial stage, educating the patient and family about the syndrome’s course may be essential, ensuring they are in good hands and will be monitored throughout the stages of illness. At or near discharge, they will also need to know how important physical and occupational therapy is, as the patient may need inpatient rehabilitation and adaptive equipment to help further the rehabilitation process. Psychological counseling may also be required (11). 

Research findings 

Research shows that various infections and, more recently, vaccines can precede Guillain–Barré syndrome (7). Unfortunately, the exact cause had not been conclusive at the time of the most recent research done in 2023-2024. The hope is to detect patients who may have a severe outcome. Researchers are looking at several biomarkers that may assist in these untoward events (2). Factors associated with severe prognosis are those who are older, rapid onset of Guillain–Barré, and stark progression of weakness in the extremities, the face, the bulbar (cranial nerves 9,10,11,12), and the neck, having had diarrhea within the previous four weeks, dysautonomia, (a disorder of the autonomic nervous system), and decreased vital capacity (2). 

The infection most seen initially in studies is Campylobacter-jejuni (C-jejuni). The rates in low-middle income regions in countries are more than likely from contaminated food and water (7).  The authors of “An Updated Review on Guillain–Barré syndrome:  Challenges in Infection Prevention and Control in Low- and Middle-Income Countries” state difficulty in diagnosing is due to the many variants and infections that may cause Guillain–Barré syndrome (7). There is also no one test or MRI to detect it, so it takes a few days to diagnose through testing and symptomatology. 

Another emerging issue is the relationship between Guillain–Barré and vaccines. In some patients, the illness begins within six weeks of being vaccinated. Some flu, meningococcal, polio, rabies, and most recently, the Covid-19 vaccine has shown a minor spike in Guillain–Barré syndrome (7). In countries affected by the mosquitoes that cause dengue fever, the same vectors carry the Zika virus, which appears to initiate this syndrome (7). Research also shows that IVIG and Plasma Exchange treatment should be given sooner rather than later once diagnosis is established (3). This procedure appears to slow the progression of the disease and create better long-term outcomes (3). 

Studies are currently being performed to determine relationships between these variants and Guillain–Barré. A new method called “the zipper” and some biological agents are being studied, which seem to help with faster weaning from ventilation and decrease deaths and lengths of stay (3). The Zipper method is used for patients with severe illness who are intubated and ventilated. It uses Plasma Exchange and IVIG in a novel fashion. 

Conclusion

We have reviewed the signs and symptoms of Guillain–Barré syndrome in some depth and what research has shown to be causes. A quick diagnosis is necessary to begin treatment as soon as possible. There is a great necessity for teamwork to treat these patients, from medical providers to infectious disease personnel, physical and occupational therapists, nurses, and pharmacists. We do not entirely understand why contagious diseases, vaccines, and vectors cause the demyelination of the peripheral nerves and their roots. It is understood, however, that lower-middle-income regions worldwide have a higher percentage of Guillain–Barré syndrome, most likely due to infected drinking water and higher counts of C-jejuni due to undercooked food.   

Research is ongoing to examine these unknowns and how to decrease the number of patients affected by Guillain–Barré syndrome. Scientists are also considering how to treat this syndrome more quickly and effectively to stall further progression of Guillain–Barré in the neural paths, and ultimately to diagnose it sooner and treat it more aggressively. 

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