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Description
Within the project, we will focus on improving the care for patients with SMA in healthcare facilities and expanding the services provided to them by the SMÁci patient organization.
The main topic addressed by the project are the large discrepancies in the patient approach in particular neuromuscular centers, which provide care for these patients, as well as non-compliance with the SMA Standards of Care. We will therefore conduct a questionnaire survey among patients, focused on their experience with the care of physicians and specialists in the neuromuscular centers. We will regularly publish the results on the website and use them to provide feedback to neuromuscular centers and their experts, and we will strive to improve their services and adhere to the SMA Standards of Care.
We will also organize training for patients, to inform them about the SMA Standards of Care. Patients will know what care they are entitled to and will be able to request it. Thanks to questionnaire surveys, they will be able to inform us about areas for improvement. The aim of this part of the project is to improve and balance the level of care for patients with SMA in neuromuscular centres in the Czech Republic.
The aim of the second part of the project is to improve the services that the patient organization provides to its members. We will expand the capacity of the telephone line for crisis intervention and psychosocial support. Crisis intervention and psychosocial support will also be provided directly in patients'' families.
Summary of project results
The project has significantly improved the care of patients with SMA. Prior to the project, the quality of care varied greatly between centres, making it difficult for patients to access the necessary support. By implementing crisis intervention and a special telephone hotline, we have ensured continuous support for patients even outside of the hospital setting. By standardizing procedures and improving information availability, we have contributed to an increased quality of life for patients. Despite the complications caused by the COVID-19 pandemic, the project has proven to be very successful. The project faced challenges with evaluation due to a lower willingness of patients to complete questionnaires.
Initially, we focused on streamlining the project''s operations, management, and planning. A crucial component was the active dissemination of information about the project to reach the widest possible audience. To provide more comprehensive support to patients, we expanded the patient organization''s team with newly trained staff. This enabled us to establish a crisis intervention hotline and offer direct assistance to patients and their families in challenging situations. One of the project''s key objectives was to improve access to immediate assistance for patients and their families during difficult times. Therefore, we focused on strengthening the capacity of the crisis intervention hotline. In addition to traditional telephone and email support, we introduced the option of face-to-face meetings with crisis workers. Thanks to this expanded service, we were able to provide patients and their loved ones with more comprehensive and individualized support, including not only professional counselling but also practical assistance with daily challenges. The project focused on improving care for patients with neuromuscular diseases. The project encompassed a range of activities, from strengthening the capacity of the patient organization to conducting surveys. In the area of improving care for patients with SMA in neuromuscular centres, we collected data through online surveys. Due to the low response rate, we later added the option of answering questions in person, through face-to-face interviews. We also held meetings with neuromuscular centres – we visited individual centres or contacted them remotely and informed them about the survey results. To gain a detailed overview of patients'' needs and experiences, we conducted extensive surveys and personal interviews. The results of this survey were subsequently consulted with experts from neuromuscular centres and used to further improve the care provided. A significant milestone of the project was the organization of an interdisciplinary meeting, which provided a forum for professional discussion and exchange of experiences among various experts working in the field of neuromuscular diseases. As part of the project, we also created a new website that serves as a source of information for patients, their families, and the professional community.
The project significantly improved care for patients with neuromuscular diseases. Targeted activities created a more stable and supportive environment for patients and their families. Increasing the number of employees in the patient organization by two and expanding crisis intervention services led to a significant improvement in the availability of support. Patients now have access not only to telephone and email support but also to inperson meetings with crisis workers, even after the project''s completion. A total of 75 direct interventions in families and 303 telephone/email consultations were provided, allowing patients to receive immediate support in challenging life situations. Extensive surveys and personal interviews provided 91 valuable insights into the needs of patients and their caregivers and their experiences with care. The results were consulted with 36 neuromuscular centres, leading to discussions about ways to improve care. The organization of an interdisciplinary meeting promoted collaboration among professionals from various fields and contributed to the exchange of the latest knowledge. The project brought concrete benefits to patients, such as better access to information about the disease and treatment options, improved quality of life thanks to the support provided, and reduced feelings of isolation. Thanks to closer cooperation among professionals, the complexity of patient care has improved. In conclusion, the project successfully achieved its goal and contributed to improving the quality of life of patients with neuromuscular diseases. The created conditions enable patients to better cope with their illness and live a more fulfilling life.