Health activation of patients in the face of a novel and unknown syndrome, Long COVID

BACKGROUND: Long COVID can still be considered as a novel disease. Although several clinical guidelines on the management of this disease have already been published, treatment options are still limited. This has left these patients frustrated in seeking treatment, and they express a willingness to try anything to manage their symptoms. The objective of this study is to analyze the level of activation of these patients in their own health. METHODS: A cross-sectional study was performed. The sample consisted of 134 patients with Long COVID in Spain. The main variable was the activation of the patient in his own health. It was collected using the Patient Activation Measure (PAM). This tool evaluates the skills, knowledge and confidence perceived by the patient when carrying out health self-management activities. It consists of 13 items that are evaluated on a scale from 1 (totally disagree) to 4 (totally agree). The resulting score ranges from 13 to 52, and is stratified into 4 activation levels (level 1, poor activation - level 4, adequate activation). A descriptive statistical analysis was performed using the SPSS v.25 program. Frequencies and percentages were calculated for each of the ranges. RESULTS: Although there was a large percentage of participants with low levels of activation in health (28% within level 1, and 17% within level 2 activation), more than half of the study participants showed an adequate level of activation in the management and care of their own health (30% within level 3, and 23% within level 4 of activation). CONCLUSIONS: Patients with Long COVID present an adequate activation in managing their own health, which can support the actions of the professionals involved in interdisciplinary treatments for this disease. However, excessive activation and the search for any resource for symptoms management (over-the-counter medications, dietary changes, supplements) without professional control could be harmful and worsen their symptoms. KEY MESSAGES: • Patients with Long COVID present an adequate degree of activation in managing their own health. • People with Long COVID express a willingness to try anything in order to control and manage their symptoms.