Energy management education for people living with Long COVID
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The EMERGE project, funded by the Swiss National Science Foundation, evaluates the effectiveness of Energy Self-Management Education (EME). This is an ergotherapeutic rehabilitation course that supports people living with Long COVID, helping them to identify the most effective energy management strategies for coping with daily activities.
Tiredness and fatigue are frequent symptoms in those who have contracted the coronavirus. But for some, these conditions persist even months after a negative Sars-CoV-2 test result.
These are the people affected by Long Covid Fatigue, a condition with a prolonged course and a strong impact on daily life. Sufferers struggle to maintain usual levels of performance in everyday activities and routines, at home and at work. The result is a noticeable disruption and sense of suffering. However, it is possible to manage the consequences of Long Covid Fatigue and to re-emerge with an appropriate therapeutic approach.
At SUPSI, the Rehabilitation Research Laboratory (2R Lab) is at the forefront of this issue with the EMERGE study, which is being conducted together with the Swiss Long COVID Association, Altea Network, the Rehabilitation Rehabilitation Clinic of Basel (REHAB), the University Hospital of Zurich and the Inselspital Bern.
EMERGE is funded by the Swiss National Science Foundation and aims to measure the effectiveness of Energy Self-Management Education (EME): an ergotherapeutic rehabilitation course that supports people with Long COVID to find the most effective energy management strategies to cope with everyday activities.
Ruth Hersche is project leader of EMERGE and researcher at 2r lab SUPSI: "we developed the EME treatment based on the analysis of existing studies, integrating them with the expertise of occupational therapists and people living with the fatigue symptom to create a protocol suitable for the Swiss healthcare system. Between 2016 and 2018, the treatment was successfully adopted on patients with multiple sclerosis and people in remission from cancer. Following the first pandemic wave, the need to find a treatment for the first patients affected by Long Covid fatigue quickly emerged. Several institutions in Switzerland have therefore successfully integrated EME as an ergotherapeutic treatment, adapting it according to needs and offering this group of patients an innovative therapeutic contribution".
Today, EMERGE aims to provide scientific data to demonstrate the degree of effectiveness of EME treatment. The methodology involves comparing two groups of patients: the first will receive standard care (e.g. physiotherapy and other clinical interventions), the second will participate in the EME programme in addition to standard care. Four questionnaires will then be distributed: at the start of the study, after seven weeks (when the cycle of sessions ends), after two months (in the so-called follow-up phase), and a final one six months after the start of treatment, to measure the effect of EME on the impact of fatigue on daily life and quality of life.
These are the people affected by Long Covid Fatigue, a condition with a prolonged course and a strong impact on daily life. Sufferers struggle to maintain usual levels of performance in everyday activities and routines, at home and at work. The result is a noticeable disruption and sense of suffering. However, it is possible to manage the consequences of Long Covid Fatigue and to re-emerge with an appropriate therapeutic approach.
At SUPSI, the Rehabilitation Research Laboratory (2R Lab) is at the forefront of this issue with the EMERGE study, which is being conducted together with the Swiss Long COVID Association, Altea Network, the Rehabilitation Rehabilitation Clinic of Basel (REHAB), the University Hospital of Zurich and the Inselspital Bern.
EMERGE is funded by the Swiss National Science Foundation and aims to measure the effectiveness of Energy Self-Management Education (EME): an ergotherapeutic rehabilitation course that supports people with Long COVID to find the most effective energy management strategies to cope with everyday activities.
Ruth Hersche is project leader of EMERGE and researcher at 2r lab SUPSI: "we developed the EME treatment based on the analysis of existing studies, integrating them with the expertise of occupational therapists and people living with the fatigue symptom to create a protocol suitable for the Swiss healthcare system. Between 2016 and 2018, the treatment was successfully adopted on patients with multiple sclerosis and people in remission from cancer. Following the first pandemic wave, the need to find a treatment for the first patients affected by Long Covid fatigue quickly emerged. Several institutions in Switzerland have therefore successfully integrated EME as an ergotherapeutic treatment, adapting it according to needs and offering this group of patients an innovative therapeutic contribution".
Today, EMERGE aims to provide scientific data to demonstrate the degree of effectiveness of EME treatment. The methodology involves comparing two groups of patients: the first will receive standard care (e.g. physiotherapy and other clinical interventions), the second will participate in the EME programme in addition to standard care. Four questionnaires will then be distributed: at the start of the study, after seven weeks (when the cycle of sessions ends), after two months (in the so-called follow-up phase), and a final one six months after the start of treatment, to measure the effect of EME on the impact of fatigue on daily life and quality of life.
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The seven sessions in the programme take place in small groups, something that is not easy to achieve in the outpatient sector of the Swiss healthcare system. The fact that patients have to be at the same time at the same place always requires a considerable organisational and administrative effort. But this modality is highly appreciated because the exchange of experiences and advice on tried and tested strategies proves to be very rich. In the course of the sessions, occupational therapists and patients reflect on how to manage daily activities, how to simplify them and alternate them with strategic breaks, or how to communicate one's condition effectively to others. The aim is for participants to recognise the factors that influence their energy levels and to learn how to manage and prevent fatigue.
Ruth Hersche emphasises the centrality of the patient: 'One of the key elements of this treatment is empowerment, which aims to make the patient aware of and protagonist in his or her own treatment pathway. The concept of self-management is therefore central: the therapist educates the patient to find the best solutions for his or her own well-being, rather than imposing directives on him or her. It is an educational pathway, aimed at adapting one's daily habits to one's own condition, and getting more satisfaction from the energy one has at one's disposal'.
At the moment, only a few institutions in Switzerland offer EME treatment in group mode as part of their standard services, with such demand that it has led to patients being placed on waiting lists. However, the results of the study, which is currently in the planning stage, could also influence other rehabilitation centres to adopt EME treatment as a standard protocol for patients with Long Covid.
The objectives of EMERGE - recalls project leader Ruth Hersche - are threefold: firstly, we want to assess whether the integration of EME into standard care improves outcomes in people with Long COVID fatigue. Secondly, we want to understand which behavioural changes people manage to implement and which of them are considered the most effective. Finally, we will perform a cost-effectiveness analysis of the treatment.
The project is not limited to the application of the EME protocol to Long Covid patients. The results of the study will contribute to the improvement of treatment for anyone suffering from chronic fatigue syndrome, regardless of the origin of the cause.
Ruth Hersche emphasises the centrality of the patient: 'One of the key elements of this treatment is empowerment, which aims to make the patient aware of and protagonist in his or her own treatment pathway. The concept of self-management is therefore central: the therapist educates the patient to find the best solutions for his or her own well-being, rather than imposing directives on him or her. It is an educational pathway, aimed at adapting one's daily habits to one's own condition, and getting more satisfaction from the energy one has at one's disposal'.
At the moment, only a few institutions in Switzerland offer EME treatment in group mode as part of their standard services, with such demand that it has led to patients being placed on waiting lists. However, the results of the study, which is currently in the planning stage, could also influence other rehabilitation centres to adopt EME treatment as a standard protocol for patients with Long Covid.
The objectives of EMERGE - recalls project leader Ruth Hersche - are threefold: firstly, we want to assess whether the integration of EME into standard care improves outcomes in people with Long COVID fatigue. Secondly, we want to understand which behavioural changes people manage to implement and which of them are considered the most effective. Finally, we will perform a cost-effectiveness analysis of the treatment.
The project is not limited to the application of the EME protocol to Long Covid patients. The results of the study will contribute to the improvement of treatment for anyone suffering from chronic fatigue syndrome, regardless of the origin of the cause.