Chronic Fatigue Syndrome (CFS), Myalgic Encephalomyelitis (ME)
Conditions
Keywords
Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS);, energy management;, pacing, fatigue, physical function, quality of 19 life.)
Brief summary
The study focuses on rehabilitation nursing care for adults diagnosed with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in a home setting. The objective is to evaluate the effects of an individualised rehabilitation programme, which aims to empower participants to manage their energy effectively, observing the impacts on functionality and fatigue.
Detailed description
During the study, we collected sociodemographic data, information about the clinical evolution, patient perception of the disease. Instruments were applied to assess quality of life, functionality, and fatigue levels. This will allow to understand how to improve rehabilitation nursing care.
Interventions
BEHAVIORALIntervention Group
An educational program focused on energy management and developed by the United Kingdom's NICE. The overall aim of the intervention was the empowerment of patients with self-management strategies that could help them to maximize their autonomy, independence and daily activities without exceeding their perceived energy reservoir.
Sponsors
Escola Superior de Saúde Norte da Cruz Vermelha Portuguesa
Study design
Allocation
NA
Intervention model
SINGLE_GROUP
Primary purpose
SUPPORTIVE_CARE
Masking
NONE
Eligibility
Sex/Gender
ALL
Age
18 Years to No maximum
Healthy volunteers
No
Inclusion criteria
* Portuguese-speaking individuals with age of 18 years or older; * Individuals with official residence in Portugal; * An official diagnosis of ME/CFS based on the NICE guidelines; * A Chalder's Fatigue Questionnaire (CFQ) score higher than 18 points.
Exclusion criteria
* Individuals without official residence in Portugal; * Patients without a diagnosis of ME/CFS; * Patients with a diagnosis of ME/CFS whose case definitions used was not known; * Patients without a diagnosis of ME/CFS who had previously participated in any kind of rehabilitation programme, including pacing therapy, cognitive behavioural therapy or graded-exercise therapy.
Design outcomes
Primary
| Measure | Time frame | Description |
|---|---|---|
| Functional Assessment | Assessment at two time points: M0 - before the start of the intervention; M1 - 12 weeks after the end of the intervention. | Short Form Health Survey: SF 36 v2 (physical dimension) |
| Quality of Life Measure | Assessment at two time points: M0 - before the start of the intervention; M1 - 12 weeks after the end of the intervention. | Quality-of-life measure: EuroQoL 5D-5L |
| Fatigue Assessment | Assessment at two time points: M0 - before the start of the intervention; M1 - 12 weeks after the end of the intervention. | Application of the Chalder Fatigue Scale |
Countries
Portugal
Outcome results
None listed