There are diseases that, even when overcome, leave heavy aftermath. It happens to those affected by stroke, about 120 thousand people every year in Italy of which 45 thousand report often disabling neurological disorders, such as spasticity, which occurs in about 19% of cases at 3 months and from 17% to 38% at one year since the acute episode. Unfortunately, only 18% of patients who survive a stroke receive a diagnosis of spasticity and only 5,000 benefit from rehabilitation treatments which, especially if undertaken early, are able to allow the patient to restore many of the compromised functions and recover a good quality of life. To create awareness of the disease and the need for dedicated rehabilitation interventions, ISA-AII – Italian Stroke Associationwith the non-conditioning contribution of Ipsen SpA, conceived and promoted the communication campaign Strike on stroke launched in 2021.
Stroke, less than 2 out of 10 people access rehabilitation treatments by Sara Carmignani 27 October 2022
Pdta also for post-stroke rehabilitation
The post-stroke disorders that survivors encounter are numerous and have a very negative impact on life, preventing them from returning to work, walking, often even speaking and expressing themselves correctly.
“The incidence of stroke shows us that it is essential to define and disseminate PDTA (Diagnostic-Therapeutic Assistance Pathways) that take into consideration the importance of rehabilitation – explains Mauro Silvestrini, president of ISA-AII”. An appeal taken up by the Honorable Luciano Ciocchetti, Vice-President of the Social Affairs Commission in the Chamber of Deputies: “With initiatives like this, we want to send a message of closeness to people with post-stroke spasticity and their families, because they can strengthen the diagnostic and taking charge of this pathology is possible once the acute event has passed.With today’s meeting, I undertake to collect the requests of patients and the clinical world to work side by side with the Ministry of Health to strengthen the PDTA, the places of care on the territory and stimulate the creation of multidisciplinary networks within the reform of the hospital network (DM 70), guaranteeing a widespread and homogeneous healthcare offer in each Region”.
Ictus, an award for young neurologists by Dario Rubino 17 November 2022
The (worrying) results of the polls
With the Strike on stroke campaign, two surveys were carried out for doctors and patients who were asked to tell their experience in terms of rehabilitation. “The data that emerged – continues Silvestrini – are worrying: out of 250 clinicians, one in three confesses that they do not have adequate guidelines available to refer patients to suitable structures for taking care of them. Six out of ten do not know if there are regulations at a regional level dedicated to post-episode pathways. 38% of clinicians work in neurovascular units in which the person is discharged without being placed in a process of recovery of compromised functions. 64% admit that from hospitalization in the acute phase to arrival in the rehabilitation department more than seven days pass on average”.
Stroke, first cause of disability in Italy: more attention to the recovery of functionality by Irma D’Aria 15 May 2023
A time-dependent pathology
One of the major criticalities of the stroke concerns the timing. “Stroke – underlines Paola Santalucia, elected president of ISA-AII – is a time-dependent pathology: the sooner you intervene, the greater the chances of survival. This also applies to rehabilitation: immediately embarking on a rehabilitation process means significantly increasing the opportunities to resume talking, moving, having a life of relationships and work.The revascularization therapies of the hyperacute phase of the stroke are essential to restore blood flow to that part of the suffering brain, but the care of the patient affected by stroke lies in the taken care of in the dedicated units, the Stroke Units. Hospitalization in these centers is essential for the treatment of the pathology: the SU, after the revascularization therapies, is the cure for the stroke”.
Post stroke spasticity
Spasticity is among the most common and disabling post-stroke disorders. “It is a permanent increase in muscle tone that has a strong impact on the daily life of the patient with limb deformities and anomalous postures. It does not always appear immediately: 19% of people begin to show spasticity three months after the ictal event, when they often have after the hospitalization,” he adds Daniel Tony, Past President ISA-AII. Precisely because of the frequency of these cases, it is important that doctors and patients work in synergy: the former to keep the sick involved in a treatment process and the latter to remain alert, ready to recognize the symptoms and warn their specialist. Language and memory disorders are also common: in these cases, neurologists and speech therapists are able to allow a good recovery, provided that a path is started quickly, shortly after the symptoms appear”.
The role of botulinum toxin
Spasticity can be treated with botulinum toxin, a treatment included in the LEA. “The toxin – he explains Francesco Bono, National Coordinator of the Italian Botulinum Toxin Network – SIN (Italian Society of Neurology) – causes relaxation of the muscles affected by spasticity, reduces excess tone and consequently disability, because it facilitates the rehabilitation process. If we consider the frequency of cerebrovascular pathology and the number of people who receive treatment for spasticity, there is a clear discrepancy: the cause is an insufficient disclosure of the usefulness of this therapy and a scarce presence of specific public centers for the treatment of spasticity in large hospitals. These units are essential for patients to access treatments without distance becoming a deterrent. Their diffusion would also reduce the costs of assistance, because the better the patient is treated and the lower the public expenditure”.
Ensure continuity of care
The role of the institutions and health planning bodies is fundamental and experts ask them to make every effort to guarantee the maximum availability of beds in the stroke units, where it is essential that most, if not all, of the people affected by the disease are hospitalized.
“It is important to activate pathways in all hospital structures, which are clear for both doctors and patients, who must be informed about the available opportunities. In Italy we guarantee excellent assistance to people affected by this disease, thanks to standardized pathways and based on the quality of care in line with the National Guidelines and scientific evidence.We have achieved excellent results for the management of the acute phase of stroke, the time has come to guarantee the same high standards of care in continuity from the acute phase to rehabilitation”, adds Santalucia.
The voice of the patients
Words also shared by Royal NicolettePast President of ALICe., Italy – Association for the Fight against Cerebral Stroke: “Suitable and homogeneous pathways must be established throughout the national territory, as well as for diagnosis and treatment, also for rehabilitation, an equally important phase and delicate for those who have had a stroke and for their relatives/caregivers, because improvements in the affected functions are always possible”.
Among the problems these patients have to deal with there are also those of practical life: “Unfortunately, today those who survive this event are confronted every day with visible and invisible obstacles, which interfere with the resumption of a quality life – points out Roberto Messina, Senior President Italy FederAnziani. I’m talking about architectural barriers that prevent mobility and complications that force them to live a life below the possibilities. This is especially the case when the patient is older, with less resilience due to age and often with less support.”
The Strike on stroke campaign
In addition to the two surveys, a strong social activity was carried out as part of the awareness project, a commercial, two brochures and the publication of video clips featuring doctors and patients. “We are proud to support the Strike on Stroke campaign – he commented Patricia Olivari, chairman and CEO of Ipsen SpA – . We believe in the importance of knowing the pathology and promoting moments of discussion like today’s, in which patient associations, clinicians and institutions can discuss the barriers that exist at national and regional level in the management of patients who develop post-stroke disabilities. Our role as a company is also to work in partnership with the institutions for the definition of an adequate, sustainable and uniform access model for all”. On the ISA-AII website, at this link: you can view and download campaign brochures.