Guillain-Barré syndrome is known as a rare and debilitating disease. Can you summarise how rare it is and how debilitating it can be?

Guillain-Barré syndrome is an immune-mediated polyneuropathy that causes progressive weakness in all four limbs, areflexias, autonomic dysfunction and respiratory paralysis.

After poliomyelitis, it is considered to be the next most important cause of muscle paralysis in developing countries like India, where its incidence is 1–2 patients per 100,000 population.

Despite generally favourable outcomes and a low mortality rate, 25 per cent of patients may require ventilatory assistance and 10–20 per cent may have severe residual long-term disability.

Fatigue is reported in 60–80 per cent of patients and causes poor quality of life and activity limitation.

It is evident that with advancements in the acute care of patients with Guillain-Barré syndrome, improvements in survival and early acute recovery timing has been achieved, but a lot more still needs to be done to improve their disability, fatigue, social participation, quality of life and long-term psychological sequelae.

Is there much existing evidence about exercise-based rehabilitation for people with Guillain-Barré syndrome?

Not much is known about exercise-based rehabilitation for the people with Guillain-Barré syndrome.

Nehal Shah is investigating the effects of physiotherapist-supervised exercise on people with chronic Guillain-Barré syndrome.

The only systematic review of the effects of exercise in polyneuropathies generally found only one randomised trial, which examined combined strength and endurance exercise.

Although the exercise regimen improved muscle strength, the effect on functional ability remained unclear.

Otherwise, there are only uncontrolled studies (which report improvements in function, fatigue and muscle strength after supervised cycling or prescribed unsupervised exercises and aerobic activities) or trials of multidisciplinary care in which physiotherapy is only one component.

There is a clear research gap in this area.

What were the interventions that you compared in the study?

One group received a supervised, individualised exercise program, consisting of two or three 60-minute sessions per week on an outpatient basis at the research hospital.

The interventions included strengthening exercises, endurance training, gait training and pain management.

The other group received a home-based exercise program.

They were taught a 30-minute regimen of maintenance exercises, including active-assisted exercises (using one limb to assist another limb), active exercises and strengthening exercises, to be followed at home without supervision.

They were advised to complete the exercise program for 30 minutes, 2–3 times per week.

What outcomes did you measure?

The primary outcome was functional independence in activities of daily living measured using the Barthel Index.

The secondary outcomes were muscle strength testing, a fatigue questionnaire, a visual analogue scale of pain severity and a quality-of-life questionnaire that assessed physical health, psychological health, social relationships and environment (such as being able to access transport and healthcare).

All outcome measures were administered at baseline and Months 6 and 12.

The 10 to 20 per cent of people with Guillain-Barré syndrome who progress to develop chronic symptoms represent a small subset of a rare disease, so was recruitment difficult?

It was the most difficult task of the research.

Because of such limited data on Guillain-Barré syndrome, we could not calculate the sample size in a very robust way.

The hospital registry provided a list of patients who had had Guillain-Barré syndrome so we just tried to screen and recruit all that we could.

You achieved 100 per cent follow-up of all participants at six and 12 months. What advice do you have for other researchers to improve their follow-up rates?

During my research, it was very important to address their concerns regarding the exercises.

Also, the patients were informed that they could call me any time for any healthcare assistance required.

I feel this helped the study to achieve a 100 per cent follow-up.

What were the findings at the six-month assessment?

At the six-month follow-up assessment, the supervised exercise program was estimated to have effects that were as good as or better than the home program on functional ability with activities of daily living.

The supervised exercise program was clearly better for strengthening muscles, reducing fatigue and improving the environment domain of quality of life.

What about at the 12-month assessment?

The greater improvement in strength with the supervised program was still clearly evident.

The estimated benefits on the other outcomes were quite similar to the estimates at six months, but those estimates came with greater uncertainty.

Therefore, we could conclude that at 12 months, the supervised program was at least as good as and probably better than the home program for functional independence, fatigue and quality of life.

What else do you think urgently needs to be researched in this clinical population?

What is the cost-effectiveness of a supervised exercise program?

How does the disease impact on carers and relatives?

How available is physiotherapy for people with chronic symptoms after Guillain-Barré syndrome?

There is a lot to consider!

>> Nehal Shah is a physiotherapist at the Bhopal Memorial Hospital and Research Centre, Bhopal, India. Nehal has wide experience in treating patients with neurological and cardiothoracic disorders and she has a PhD in health sciences.