An all-Italian study, conducted by the Mario Negri Institute and financed by the Ministry of Health, has highlighted the needs, priorities and satisfaction of patients with amyotrophic lateral sclerosis (ALS) and their caregivers, connecting, for the first time , the needs and expectations of patients, caregivers and doctors when faced with the disease. The investigation – presented in Rome, during a Talk broadcast by Adnkronos – involved 841 patients from the national registry of Aisla, the Italian Amyotrophic Lateral Sclerosis Association, with the final participation of 154 patients and 211 caregivers.
The importance of the research was underlined by the founder and president of the Mario Negri Irccs Pharmacological Research Institute, Silvio Garattini, who was joined by the message of the president of Aisla, Fulvia Massimelli, who highlighted the crucial role of the experience of patient associations. Valuable knowledge, useful for guiding decision-making choices within the care, assistance and research system. From today, these data are transformed into a precious ally not only for monitoring needs but, above all, for improving the capacity for clinical and research response.
It was the coordinator of the study and head of the Epidemiology Unit of Neurodegenerative Diseases of the Mario Negri Institute, Elisabetta Pupillo, who presented the results obtained from the prospective cohort whose photograph shows predominantly male patients (64.9%), with an average age of 63.5 years. The diagnosis arrives at approximately 58.5 years of age, with a diagnostic delay of 1 year (12.1 months). Among patients, the most urgent need was identified as seeking a cure (95.5%), followed by discovering risk factors (72.1%). And it is precisely the absence of therapeutic responses that highlights how, for more than half of the interviewees (54.9%), the safety of experimental drugs is of little relevance. In confirmation, the majority of patients (75.5%) did not express the need for a second opinion in case of availability of a new drug. According to Federica Cerri, neurologist at the Nemo Clinical Center in Milan and scientific director of the National ALS Registry, the heterogeneity of the disease poses constant challenges, both in clinical management and in the search for new treatments. The Registry, in fact, was created as a pilot project which sees the direct participation of patients – patient driven – and is a precious tool for the targeted sharing of information on which to better develop clinical and scientific approaches.
Caregivers largely confirmed the needs expressed by patients, but some differences in disease management were identified. Family members who care for patients are predominantly women (75%), with an average age of almost 58 years. As the disease progresses, the need for assistance becomes increasingly complex, with a heavy impact on the quality of life of both the patient and her loved ones. This is testified by Claudio Cresta, Aisla Lazio councilor and sports manager who saw his life, and that of his family, turn upside down with the arrival of ALS.
On average, more than half of the caregivers interviewed (55.8%) suffer from severe physical tiredness when managing their loved one. Interestingly, only a low percentage of caregivers (37.1%) believe they need psychological support; yet, in 47.4%, the family stress questionnaire highlighted an urgent need, with a strong recommendation to seek such support in 33.7% of cases. Overall, 74.5% of patients stated that they had a good interaction with their doctor and 58.1% of caregivers confirmed this. On the other hand, for all doctors the priority is to stop the disease (100%), followed by the commitment to finding solutions that can improve the quality of life of patients (88.9%).
“From the results of the survey – comments the Undersecretary of Health, Marcello Gemmato – it emerges how important it is to invest in research and to promote a model of care that puts the patient at the centre, enhancing the relationship of trust between doctor and patient. The Ministry of Health Salute remains firmly committed to supporting initiatives that respond to these needs, improving the care and quality of life of people affected by ALS and their families. Commitments and objectives that we will continue to address in synergy with the associations”.
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