The eHealth well-being service for patients with SMA and other neuromuscular disorders during the COVID-19 emergency

The aim of the Wellbeing and Emotional Activities (WEA) project was to sustain families, to reduce the impact of COVID-19 and to create web meetings using Microsoft Teams during which children with muscular dystrophies could interact, have fun and learn. The goals of this study were to compare the perception of service users, both from the point of view of parents and children, measured with a users' satisfaction questionnaire, and to correlate if the level of satisfaction of the children could be correlated to trait self-concepts of the Piers-Harris Children's Self-Concept Scale. Eleven children with neuromuscular disorders participated in the project. The WEA program included 12 web meetings, consisting of 1 hour, 3 times a week over a 1-month period. It included game activities aimed at enhancing cognitive functions, promoting critical thinking and managing emotions. Results indicated that both children and parents perceived the same level of satisfaction. Correlations between children's satisfaction in life and the self-concept scale were found. This study highlights the benefits and disadvantages of the use of a WEA web-based program from the service users' perspective. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

The eHealth well-being service for patients with SMA and other neuromuscular disorders during the COVID-19 emergency

The aim of the Wellbeing and Emotional Activities (WEA) project was to sustain families, to reduce the impact of COVID-19 and to create web meetings using Microsoft Teams during which children with muscular dystrophies could interact, have fun and learn. The goals of this study were to compare the perception of service users, both from the point of view of parents and children, measured with a users' satisfaction questionnaire, and to correlate if the level of satisfaction of the children could be correlated to trait self-concepts of the Piers-Harris Children's Self-Concept Scale. Eleven children with neuromuscular disorders participated in the project. The WEA program included 12 web meetings, consisting of 1 hour, 3 times a week over a 1-month period. It included game activities aimed at enhancing cognitive functions, promoting critical thinking and managing emotions. Results indicated that both children and parents perceived the same level of satisfaction. Correlations between children's satisfaction in life and the self-concept scale were found. This study highlights the benefits and disadvantages of the use of a WEA web-based program from the service users' perspective. (PsycInfo Database Record (c) 2022 APA, all rights reserved)

Sleep and sleep-modifying factors in chronic migraine patients during the COVID-19 lockdown.

AIMS: The objective of the present study was to evaluate sleep features and sleep-modifying factors in patients with chronic migraine (CM) during the first Italian COVID-19 lockdown. MATERIAL AND METHODS: The study was based on an e-mail survey addressed to CM patients of our headache center. The survey investigated demographic, life-style, sleep, psychological, and migraine features during the first COVID-19 lockdown period and the month before. The outcomes were sleep quality (measured using PSQI) and variation in sleep quality, duration, and latency. RESULTS: Ninety-two patients were included. The mean PSQI was 11.96. Sleep quality was improved in 14.1%, stable in 47.8%, and worsened in 38.0%. Sleep latency was reduced in 5.4%, stable in 46.7%, and increased in 47.8%. Sleep duration was reduced in 29.3%, stable in 34.8%, and increased in 35.9%. Significant associations were found with age, work/study, remote working, job loss, meal quality change, smoking variation, COVID-19 province prevalence, home-inhabitant relationship, ratio of house size/number of people, stress, state anxiety, anxiety/depression variation, future concern variation, computer hours, internet hours, and television hours. CONCLUSION: The study described sleep features of chronic migraineurs during COVID-19 lockdown, pinpointing the main factors involved in sleep quality and sleep changes. Our findings revealed that migraineurs' sleep was closely linked with life-style and psychological features. Several modifiable factors came to light and they should be considered in order to develop an optimal management of CM. An appropriate and more aware treatment of sleep problems could be a way to improve migraineurs' life.

Chronic migraine in the first COVID-19 lockdown: the impact of sleep, remote working, and other life/psychological changes.

AIMS: The objective of this study was to evaluate the impact of the first Italian COVID-19 lockdown on patients with chronic migraine (CM). MATERIAL AND METHODS: The study was based on an e-mail survey addressed to CM patients of our headache center. The survey evaluated demographic, life style, sleep, psychological, and migraine features during the COVID-19 lockdown period and the month before. The outcomes were migraine impact on daily life and variation in attack frequency, attack duration, migraine pain intensity, migraine symptomatic drugs use per week, and efficacy. RESULTS: Ninety-two patients completed the survey. During the lockdown period, attack frequency was stable in 40,2%, increased in 33,7%, and reduced in 26,1% of patients; attack duration was stable in 55,4%, increased in 23,9%, and reduced in 20,7%. Migraine pain was stable or reduced in 65,2% and increased in 34,8%; number of symptomatic drugs per week was stable in 50%, reduced in 29,3%, and increased in 20,7%; migraine drug efficacy was stable in 73,9%, reduced in 17,4%, and increased in 8,7%. Patients had a HIT-6 score of 64,63 ± 8,81. Significant associations were found with remote working, smoke, education, discontinuation of the therapy performed within headache center, migraine familiarity, sleep, anxiety, perceived stress, concern about future, and COVID-19. CONCLUSION: During the lockdown, approximately half of the patients had a clinical stability, a quarter an improvement, and another quarter a worsening. We identified different migraine-influencing elements; in particular, the remote working could represent an easy way to ameliorate migraineurs' life.

The hamletic dilemma of patients waiting for kidney transplantation during the COVID-19 pandemic: To accept or not to accept (an organ offer)?

The outbreak of COVID-19 led to a reduction in the number of organ transplant interventions in most Countries. In April 2020, at the Tor Vergata University in Rome, Italy, two patients on the waiting list for kidney transplantation (KT) declined a deceased donor's kidney offer. Therefore, between April 20 and 25, 2020, we conducted a telephone survey among our 247 KT waitlist patients. Our aim was to explore: (a) the COVID-19 diffusion among them and (b) their current willingness to be transplanted in case of a kidney offer from a deceased donor. Two hundred and forty-three patients participated in a phone interview. One patient had died from COVID-19. Eighty-five (35%) KT candidates would decline any kidney offer, in most cases until the end of the COVID-19 pandemic. Upon a multivariate analysis, female gender (OR = 2.25, 95% CI = 1.26-4.03, P = .006), high cardiovascular risk (OR = 2.33, 95% CI = 1.06-5.08, P = .034), a waiting list time <3 years (OR = 0.375, 95% CI = 0.15-0.95, P = .04), and the need to be transferred to another hospital for HD (OR = 2.56, 95% CI = 1.10-5.9, P = .03) were associated with such refusal. The COVID-19 pandemic led to a fear of transplantation in a third of the KT candidates. Proactive educational webinars could be a useful tool to remove, or at least lessen, any doubts on the part of KT candidates and to avoid losing the opportunity to quit dialysis.