267th ENMC International workshop: psychological interventions for improving quality of life in slowly progressive neuromuscular disorders

Pater, Ronne; Zaldua, Joana Garmendia; Gallais, Benjamin; Graham, Christopher D.; Voet, Nicoline

doi:10.1016/j.nmd.2023.03.012

Cited by 7 publications

(6 citation statements)

References 65 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…Some interventions in this direction were addressed to children and adolescents with DMD and their families [ 66 , 67 ]. We emphasize the importance of psychological and social support for people with INMD and their family members or caregivers, in order to improve quality of life and to reduce fatigue [ 4 ]. Further research is however needed to identify evidence-based programs to promote resilience in persons with INMD.…”

Section: Discussionmentioning

confidence: 99%

“…All are characterized by progressive loss of muscle strength and a worsening ability to perform functional activities of daily living. They are also characterized by common psychosocial challenges (physical, social, and emotional), changing across each different stage of the disease [ 4 ].…”

Section: Introductionmentioning

confidence: 99%

“…The importance of treating patients not only by trying to lower negative symptomatology but also to promote well-being and improve resilience has been repeatedly highlighted [ 4 ]. Resilience can be defined as “the capacity of a system to adapt successfully to disturbances that threaten the viability, function, or development of the system” [ 14 ].…”

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Psychosocial resources and psychopathology among persons with neuromuscular disorders during the COVID-19 pandemic

Sanzo’,

Tizzoni,

Previtali

et al. 2024

BMC Psychol

Self Cite

View full text Add to dashboard Cite

Background The COVID-19 pandemic substantially affected the lives of persons with inherited neuromuscular disorders (INMD), causing disruption in clinical and support services. While several studies have investigated mental health, distress and psychosocial resources in the general population during the pandemic, little is known about the experience of persons with INMD. Methods This study was aimed to fill this gap by jointly investigating both psychopathological symptoms and psychosocial resources – specifically, resilience and perceived social support – among persons with INMD during the pandemic, taking into account demographic and clinical factors. Between April and December 2020, 59 participants with INMD (aged 15–59, 71.2% M) completed a questionnaire collecting demographic and clinical data, the Multidimensional Scale of Perceived Social Support, the Resilience Scale for Adults, and the Achenbach System of Empirically Based Assessment. Results Overall, participants showed good levels of resilience and perceived social support. A minority of participants reported clinically relevant psychopathological symptoms, 28.81% for anxiety and depression. Most psychopathological symptoms were negatively correlated with resilience (-0.347 < r < − .420), but not significantly associated with social support. Consistent with previous studies, regression analyses highlighted that participants with Duchenne muscular dystrophy were more prone to report anxious and depressive symptoms (B = 1.748, p = .028, OR = 5.744), and participants with myotonic dystrophy, attention problems (B = 2.339, p = .006, OR = 10.376). Resilience emerged as a potential predictor of lower anxious-depressive symptoms (B=-1.264, p = .012, OR = 0.283). Conclusions The findings suggest the importance to investigate psychosocial resources in addition to psychopathology among persons with INMD, and to design interventions supporting resilience as a protective factor for mental health promotion.

show abstract

Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 1 more Smart Citation

Psychosocial resources and psychopathology among persons with neuromuscular disorders during the COVID-19 pandemic

Sanzo’,

Tizzoni,

Previtali

et al. 2024

BMC Psychol

Self Cite

View full text Add to dashboard Cite

show abstract

“…Therefore, early neuropsychosocial interventions supported by routine screening protocols in the early stages of development of these patients are essential ( Birnkrant et al, 2018a ; Tyagi et al, 2020 ; Gosar et al, 2021 ) and it is recommended that they be instituted as soon as the neuromuscular diagnosis is made ( Darke et al, 2006 ). It has been shown that psychosocial approaches, including the creation of social support networks and the facilitation of personal pragmatic tools for interaction, reduce the anxiety and depression that these pediatric patients frequently experience ( Travlos et al, 2019 ; Tesei et al, 2020 ; Pater et al, 2023 ). In addition, specific neuropsychological training for children in SC has been found to be effective ( Hofmann et al, 2016 ), which favors more functional and social adaptation-related aspects ( Hinton et al, 2007 ; Banerjee et al, 2011 ) and, ultimately, has an impact on improving quality of life ( Maat et al, 2012 ; Fernández-Sotos et al, 2019 ).…”

Section: Discussionmentioning

confidence: 99%

Difficulties in social cognitive functioning among pediatric patients with muscular dystrophies

García,

Martínez,

López-Paz

et al. 2024

Front. Psychol.

View full text Add to dashboard Cite

IntroductionPediatric muscular dystrophies (MDs) are a heterogeneous group of rare neuromuscular diseases characterized by progressive muscle degeneration. A neuropsychosocial approach is crucial for these patients due to associated cognitive, behavioral, and psychiatric comorbidities; however, the social cognitive domain has not been adequately addressed.MethodsThis study aimed to analyze on social cognition performance in a pediatric MD patient cohort. This cross-sectional study included 32 pediatric patients with MD and 32 matched-healthy controls. The Social Perception Domain of the NEPSY-II, the Reading the Mind in the Eyes Test–Child and Happé’s Strange Stories Test were administered. General intelligence and behavioral and emotional symptoms were controlled for to eliminate covariables’ possible influence. The assessments were performed remotely.ResultsChildren with MDs performed significantly worse on most of the social cognition tasks. The differences found between the groups could be explained by the level of general intelligence for some aspects more related to theory of mind (ToM) (TM NEPSY-II: F = 1.703, p = .197; Verbal task: F = 2.411, p = .125; RMET-C: F = 2.899, p = .094), but not for emotion recognition. Furthermore, these differences were also independent of behavioral and emotional symptoms.DiscussionIn conclusion, social cognition is apparently impaired in pediatric patients with MD, both for emotion recognition and ToM. Screening assessment in social cognition should be considered to promote early interventions aimed at improving these patient’s quality of life.

show abstract

“…Positive health philosophy has created shifts in focus across disciplines and specialties towards enhancing capability in treatment and improving health and resilience through first and fore- most seeing patients as people with full lives coupled with shared decisionmaking (SDM). This approach identifies patient priorities and preferences which then inform opportunities for people to be and do things they value and find personally meaningful in the context of also living with a serious health condition (86)(87)(88)(89)(90). First-line pharmacologic interventions for individuals with rheumatologic conditions with moderate to severe depression include selective serotonin reuptake inhibitors (SSRIs) such as fluoxetine, paroxetine, fluvoxamine, citalopram and sertraline.…”

Section: What Do We Know About Ways To Intervene?mentioning

confidence: 99%

Mental health in paediatric and adult myositis-related diseases: current state of research, interventions, and future steps from the MIHRA Psychological Impact Scientific Working Group

Lanis,

Alexanderson,

Ardalan

et al. 2024

Clinical and Experimental Rheumatology

View full text Add to dashboard Cite

Psychological and emotional well-being are critical aspects of overall health for individuals with chronic rheumatologic conditions. Mental health-related literature, however, predominantly focuses on systemic lupus erythematosus or rheumatoid arthritis, with limited emphasis on idiopathic inflammatory myopathies (IIMs). High proportions of those with juvenile myositis report psychological distress at levels warranting mental health referral. Adults with dermatomyositis diagnosed with depression or anxiety do not receive adequate mental health care. Mental health symptoms in those with IIMs are associated with worse health-related quality of life, medication adherence, and disease outcomes. Despite demonstrated high rates of mental health burden, access to mental health care remains severely lacking. Data related to mental health burden is limited by small sample size, limited generalisability, variable methods of assessment, and inconsistent diagnosis codes to define mental health conditions. Additional research is needed to validate current screening tools in myositis populations. Other relevant measurable factors include disease severity, non-health-and health-related trauma exposure, loneliness, isolation, loss of control, sleep difficulties, fatigue, pain, self-esteem, body image, sexual health, and health inequities. Studies are needed investigating the efficacy of therapeutic and pharmacologic interventions among patients with myositis

show abstract

267th ENMC International workshop: psychological interventions for improving quality of life in slowly progressive neuromuscular disorders

Cited by 7 publications

References 65 publications

Psychosocial resources and psychopathology among persons with neuromuscular disorders during the COVID-19 pandemic

Psychosocial resources and psychopathology among persons with neuromuscular disorders during the COVID-19 pandemic

Difficulties in social cognitive functioning among pediatric patients with muscular dystrophies

Mental health in paediatric and adult myositis-related diseases: current state of research, interventions, and future steps from the MIHRA Psychological Impact Scientific Working Group

Contact Info

Product

Resources

About