The challenges faced by patients with hereditary myopathy during the COVID-19 pandemic.

BACKGROUND: Neuromuscular diseases are inherited and the prevalance of neuromuscular disease is estimated to be around 1:2000. METHODS: This cross-sectional research was conducted with a qualitative research model. Data were collected from patients with an online survey using the snowball sampling method. The study was conducted in accordance with the STROBE checklist methodology. Frequencies and percentages were used to analyse demographic data, and content analysis was used for qualitative opinions. RESULTS: Most of the participants were men and their education levels were low. Participants reported experiencing physical and socio-economic barriers to accessing healthcare. Participants also stated that these barriers have worsened since COVID-19. CONCLUSIONS: Patients with hereditary myopathy are stigmatised by society and face different problems depending on the type of disease and level of function. It is recommended that decision-makers enable patients with hereditary myopathy in exceptional situations to access healthcare services and take steps to resolve their problems.

Development of the self-efficacy scale in caregivers of Duchenne muscular dystrophy patients.

BACKGROUND: It is important to measure the self-efficacy knowledge of the caregiver of Duchenne muscular dystrophy (DMD) patients in order to overcome the problems that arise and carry out the care process in a healthy manner. OBJECTIVE: This research was carried out to develop a self-efficacy scale in caregivers of individuals with DMD. METHODS: The study was conducted with 99 volunteer DMD caregivers to evaluate the psychometric properties of the developed scale. Exploratory Factor Analysis (EFA) was performed with the SPSS 25 Package Program to determine the factors of the scale. Confirmatory Factor Analysis (CFA) analysis was performed with AMOS 23 to confirm the factors obtained by EFA. Cronbach's alpha coefficient was used for the internal consistency of the DMD-CSES. RESULTS: A valid and reliable scale was obtained to measure the self-efficacy of caregivers of DMD patients. CONCLUSION: Although some scales have been developed to evaluate the care burden of family members who care for patient-centered symptoms and functional changes in patients with DMD, there is no single scale that adequately describes the conditions and resources of caregivers on a global scale. The search for a definitive scale is expected to continue until a definitive treatment for the disease is found. Developing a valid and reliable scale to identify the self-efficacy, knowledge, skills and resources of caregivers with a common perspective of physicians and health management team centred on patients with DMD will be effective in practice.

Vaccine hesitancy in patients with COVID-19 who have back pain.

OBJECTIVES: Musculoskeletal pain is among the most common symptoms in patients diagnosed with coronavirus disease 2019 (COVID-19), and it has placed a significant burden on health worldwide during the pandemic. This study explored vaccine hesitancy and associated factors in patients with positive COVID-19 polymerase chain reaction test results who were hospitalized and had back pain. METHODS: A cross-sectional study was conducted among 170 hospitalized COVID-19 patients over 18 years of age. Data were analyzed using descriptive statistics with IBM SPSS ver. 25.0. RESULTS: COVID-19 patients who were married considered COVID-19 vaccinations riskier than unmarried COVID-19 patients. Patients who had not been vaccinated expressed higher levels of distrust towards COVID-19 vaccines than patients who had been vaccinated. Participants had relatively little hesitation toward the Sinovac vaccine. High vaccine confidence was found in all participants regardless of vaccination status. Those who had not received the COVID-19 vaccine reported higher risk perceptions than those who had received at least 1 dose of any COVID-19 vaccine. CONCLUSION: Measurements of the hesitancy of vaccinated and non-vaccinated patients or members of society towards vaccines can be an important parameter for health authorities to find solutions.

Validity and reliability of the Pandemic Fatigue Scale (PFS) in the Turkish population.

BACKGROUND: The measures developed to fight the COVID-19 pandemic caused fear, stress and anxiety in people over time. It was reported that pandemic fatigue, associated with the gradual loss of motivation to follow the implemented protective measures, emerged in societies. OBJECTIVE: This cross-sectional-methodological study aimed to validate the Turkish version of the Pandemic Fatigue Scale, developed by Lilleholt et al. (2020). METHODS: A web-based questionnaire was conducted to examine the validity and reliability of the Turkish version of the PFS. 1149 participants from all regions in Turkey participated. Exploratory Factor Analysis (EFA) and Confirmatory Factor Analysis (CFA) were performed. RESULTS: As a result of the KMO and Bartlett's Test of Sphericity, the scale was suitable for the factor analysis. According to EFA, the scale has two sub-factors. The first sub-factor explained 48.7%, and the second sub-factor explained 16.7% of the total variance. Factor loadings of items varied between 0.67 and 0.89. CFA shows that acceptable fit values were obtained for the RMSEA, GFI, AGFI, CFI, NFI and IFI fit indices. CONCLUSIONS: The results support that PFS is a valid and reliable screening tool that can be used to measure the phenomenon of pandemic fatigue.