Italy needs tools to follow the patient in post-stroke phase, improve rehabilitation

The care pathway for stroke patients needs to be strengthened in Italy to reduce the burden of disabilities and death in the post-stroke phase according to practitioners and healthcare stakeholders interviewed by Euractiv.

In Italy, stroke is the third leading cause of death, after cardiovascular diseases and cancer, and is the leading cause of disability. Every year, more than 120,000 Italians experience a stroke, resulting in some 40,000 deaths within 12 months and the same again with severe disabilities.

Spasticity, a condition where muscles stiffen or tighten, preventing normal fluid movement, affects 20% of patients three months after the event and is among the most common side effects.

Practitioners told Euractiv that rehabilitation pathways must be started as soon as possible, starting with hospitalisation at a stroke unit to increase the chance of recovery. But unfortunately, it is not always possible.

They said a network of facilities equally distributed throughout the country, combined with information flows to track patients’ progress from when the alarm is triggered to hospitalisation, the conclusion of rehabilitation, and possible outpatient treatment if needed.

According to an online survey of 250 patients cared for in healthcare facilities throughout Italy, sponsored by the Italian Stroke Association (ISA-AII), presented in April 2022 as part of the “Strike on Stroke” campaign, nearly 90% of patients report that they have experienced improvements, both neurological and physical, following rehabilitation treatment.

However, 34% consider the experience insufficient, and 17% rate their quality of life as poor.

Half the patients also ask for more information about rehabilitation therapies and a stronger ongoing relationship with the neurological specialist. More than 38% begin recovery in a healthcare facility, unlike where their hospitalisation occurred.

Patient follow-up in the post-hospitalisation phase

One of the main problems encountered by practitioners concerns the lack of data on the overall pathway of stroke patients, particularly about the crucial rehabilitation phase once they leave the hospital.

“There is little data on the overall pathway of stroke patients, which is very lacking in the phase outside the first cycle of rehabilitation,” Maria Concetta Altavista, director of the Complex Operative Unit (UOC) of Neurology at the San Filippo Neri Hospital in Rome, told Euractiv.

“At that stage, the system ‘loses’ the patient and therefore, treatments are varied and poorly controlled,” Altavista said.

She is also a creator of a Comprehensive Observational and longitudinal study on the Outbreak of stroke-related Spasticity focusing on Early Onset management with BoNT (COLOSSEO) for the Lazio Region.

“The goal of our study was to follow the patient from the moment he or she is discharged from admission to the stroke unit and to visit him or her at the designated times precisely to catch any critical points, particularly the onset of spasticity to possibly initiate early treatment and thus avoid several complications,” related to failure to intervene early.

The study is designed to try to fill the “knowledge gap,” Altavista said, noting that the critical time for the patient is two to three months after the stroke event for the onset of spasticity, which is “a further aggravating feature of the clinical picture that results in an overall worsening of quality of life.”

The study was designed by contacting Stroke Units, rehabilitation centres, neurology centres, and treatment centres, particularly those dealing with spasticity using botulinum toxin, Altavista said. The study’s authors then created a consortium joined by the most competent healthcare facilities within the Lazio Region.

“It is also important from this point of view to be able to do a collaborative study between hospital, university and rehabilitation centres,” Altavista stressed.

Acting promptly, an analysis of stroke networks

A recent survey, also conducted by ISA-AII, showed that the 208 Stroke Units are unevenly distributed throughout the country. Only 22% of Stroke Units are located in Southern Italy, with 45 facilities, while the country’s centre hosts 26% with 55 departments. In the meantime, the north has 52%, with 108 units.

Speaking to Euractiv on the state of national policies for stroke treatment, Francesca Romana Pezzella, ISA-AII secretary and co-chair of the Stroke Action Plan for Europe of the European Stroke Organisation (ESO), stressed that the last few years have seen “definitely an improvement,” but critical issues remain.

Pezzella quoted a study by the Technical Group for the Development of Proposals for the Implementation and Evolution of the Stroke Care Network of the National Agency for Regional Health Services (AGENAS).

The study, published in March 2023, addressed the challenge of analysing stroke networks in Italy, ranging from ischemic stroke, already the subject of much analysis, to hemorrhagic stroke, less studied but equally relevant. The goal was to enhance tools and methods to implement care networks across the country effectively.

Among the main issues found was considerable variability in the effectiveness of regional networks, with heterogeneous levels persisting even within similar geographic areas. Added to this is the insufficiency of hospital places equipped to manage stroke, especially in the acute phase, which, according to the study, is “a key obstacle” affecting both mortality and disability.

Among the document’s authors, in her capacity as AGENAS consultant for stroke networks, Pezzella pointed out the existence of a “bias” related to the lack of a unique code for stroke so the performance of that specialist branch could be monitored.

“What we know is the number of united strokes in Italy. But what we don’t know is how many people pass through these [stroke] units,” he said. To find this data, the scientific society writes directly to each unit head to ask how many patients are admitted. “So the scientific society has this data,” but not the Ministry of Health.

“The problem is that this code that uniquely identifies Stroke Units is missing,” he points out.

There is currently no specific Stroke Unit coding in the Healthcare Service Specification Program (HSSP) used to achieve interoperability of health and social processes at local, trans-regional and trans-national levels.

The discipline of neurology, in combination with intensive care and neurosurgery, is used as a proxy. In fact, in the study prepared by AGENAS, it is recommended that the Stroke Unit should also be included within the coding of disciplines as soon as possible to enable more precise monitoring and better territorial planning.

A good organisation is like a good drug

According to Pezzella, critical pathway issues relate to implementation at multiple levels, that is, of the continuum level of stroke care starting from the first manifestation of the stroke event to reduce the chances of complications and spasticity in the post-event.

“If we want to focus on a global level, certainly more work needs to be done in the hyperacute phase, which is pre-notification because it improves access to stroke care. So, if without pre-notification you have a patient having thrombolysis in an hour with pre-notification, that patient can have thrombolysis in 40 minutes, 45 minutes.”

Pezzella points out that prenotification’s benefit is 15 to 20 minutes to the patient, “which is not small considering how many neurons die every second.”

In fact, according to a study conducted a few years ago titled “Time is brain- quantified” when a stroke occurs every hour 120 million neurons die, 830 million synapses are lost, and 714 km of myelin fibres are lost.

This leads to accelerated ageing of the person. As noted by Pezzella, every hour of ischemia “leads to an aging of almost four years,” while for every minute, three weeks of life is lost.

“There is a problem that has not yet been well perceived in Italy, which is that good organisation is like good medicine, while bad organisation is like bad medicine,” Pezzella points out, stressing that, even in the face of the new drugs available, it is essential to work on organisational aspects.

 [Edited by Giedrė Peseckytė/Alice Taylor]

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