New Delhi, June 28: Family care may not help the rehabilitation of stroke patients even if the family members have received special training, a clinical trial in India has suggested, surprising doctors who had expected to see some benefits.

The trial tracked over 1,200 stroke survivors discharged from 14 hospitals across the country for six months. It found no difference between the functional independence of the patients who had received standard post-discharge care and that of those who had also received family-assisted rehabilitation.

"We're disappointed: we had expected to see benefits. Family-assisted rehabilitation had been assumed as a possible solution for countries such as India that lack the human resources for rehabilitation," said Jeyeraj Pandian, a trial investigator and a neurologist at the Christian Medical College, Ludhiana.

Instead, the study's results highlight the need for India to urgently invest on the expansion of professional stroke treatment and rehabilitation services.

Doctors estimate that about 16 lakh people suffer strokes in India each year, but the country has only 35 stroke units, most of them clustered in or around cities.

Pandian and his colleagues had followed up on 607 patients who had received standard post-discharge care that involved occasional visits to clinics and the use of whatever physiotherapist or rehabilitation services were available to them, and 605 whose rehabilitation was also aided by trained family caregivers.

The functional independence the doctors expected to see in the patients was 47 per cent in both groups.

"There was no difference in the degree of recovery of quality of life for the people who had received the extra treatment (from family caregivers)," said Richard Lindley, professor of geriatric medicine at the Sydney Medical School who is also associated with the George Institute for Global Health, which has branches in Australia, China, India and the UK.

Lindley had led the trial, whose results were published yesterday in the medical journal The Lancet.

"Our results suggest that effective rehabilitation may need to be provided by professionals who have undergone years of training and are specialists in their fields," Lindley said.

"This (finding) is likely to impose major challenges to poor communities with limited financial resources."

The trial investigators say they are still trying to understand why the extra home-based care did not provide additional benefits. The family caregivers had been instructed to provide at least an hour of physiotherapy daily at least five days a week.

"Our observations suggest that some households weren't able to provide the one-hour physiotherapy every single day. Sometimes it lasted just 30 minutes," Pandian said.

"Perhaps the caregivers had other tasks at home and were unable to devote this time with the rigour required."

Experts, however, have cautioned that it may be too early to dismiss the concept of family-based rehabilitation efforts.

It's possible that the six-hour training imparted by site coordinators to nominated family members "is insufficient to turn them into effective (rehabilitation) therapists", Gert Kwakkel and Erwin E.H. van Wegen, two rehabilitation medicine specialists from Amsterdam, wrote in a commentary on the results in The Lancet.

In November 2016, the trial investigators had told a health conference in New Delhi that the patients who had received home care had shown levels of improvement or disability similar to those who had received the standard care.

Study team member G.V. Murthy, from the Indian Institute of Public Health, had then argued that family members could provide a "cocoon of care" for rehabilitation under supervision and training.

Murthy yesterday said: "We need more rigorous examinations of such family and community-led programmes before they become commonplace."

Past studies in the West had indicated that community-based rehabilitation can help the recovery of stroke patients, but doctors say that those studies were conducted in advanced settings, with conditions quite different from those in India.

Kwakkel and Van Wegen have described the India study as the "first appropriately powered trial to investigate the effect of family-delivered, home-based rehabilitation intervention for patients with stroke in a low-middle-income country".

Pandian said: "The results are all the more disappointing because the reality is that India is unlikely to rectify the lack of trained physiotherapists over the next 10 or 15 years."