scholarly journals Friendships and social participation as markers of quality of life of adolescents and adults with fragile X syndrome and autism

Autism ◽  
2017 ◽  
Vol 23 (2) ◽  
pp. 383-393 ◽  
Author(s):  
Leann Smith DaWalt ◽  
Lauren V Usher ◽  
Jan S Greenberg ◽  
Marsha R Mailick
Keyword(s):  
Quality Of Life ◽  
Intellectual Disabilities ◽  
Fragile X Syndrome ◽  
Social Participation ◽  
Social Impact ◽  
Developmental Stages ◽  
Fragile X ◽  
Adolescents And Adults ◽  
Individuals With Intellectual Disabilities

Friendships and social participation are key domains of quality of life for individuals with intellectual disabilities. This study examined the friendships, social and recreational activities, and family social networks of individuals with intellectual disabilities from two distinct diagnostic groups: individuals diagnosed with fragile X syndrome (n = 81) compared with those diagnosed with autistic disorder (n = 226). Within each diagnostic group, individuals in two developmental stages were compared: adolescence and adulthood. Quality of life in friendships and social participation domains was notably low for individuals with fragile X and those with autism. Individuals with fragile X had more friendships and a less negative social impact on the family than individuals with autism. Across both groups, adolescents spent less time with friends and neighbors, and more time in exercising, than did adults.

scholarly journals Active Time in Cooperative Activities, Quality of Life and Body Mass Index in Individuals with Intellectual Disabilities. A Model of Structural Equations

2021 ◽  
Vol 13 (4) ◽  
pp. 2341
Author(s):  
Gabriel González-Valero ◽  
Josep Vidal-Conti ◽  
Félix Zurita-Ortega ◽  
Pere Palou-Sampol
Keyword(s):  
Quality Of Life ◽  
Body Mass Index ◽  
Cooperative Learning ◽  
Intellectual Disabilities ◽  
Body Mass ◽  
Structural Equations ◽  
Overweight And Obesity ◽  
Active Time ◽  
Individuals With Intellectual Disabilities

Current research shows that individuals with intellectual disabilities do not engage in enough physical activity to acquire health benefits. However, cooperative learning has been shown to be an effective tool for inclusion and for improving healthy physical habits. The aim of this study is to contrast an explanatory model which incorporates quality of life, active time in cooperative activities, body mass index and age, as well as to analyze, using multi-group structural equations, the existing associations according to the sex of subjects with intellectual disabilities. The convenience sampling used allowed the collection of data from a total of 156 subjects in Granada (Spain), aged between 18–55 years. In terms of gender, the sample was homogeneous, representing 52.6% (n = 82) for women and 47.4% (n = 74) for men. The active time during the cooperative learning was recorded with the Xiaomi Mi Band 2 activity band, for the quality of life scale (GENCAT) was used, and the body mass index was calculated through its standardized equation. Age was directly associated with body mass index in both sexes. Likewise, age was positively related to the active time of women. Quality of life was directly associated with active time and body mass index was inversely related to active time. This study shows the importance of active time during work and cooperative learning in individuals with intellectual disabilities, as it is associated with an improvement in the quality of life and a reduction in the problems of sedentarism, overweight, and obesity.

Social/economic costs and health-related quality of life in patients with fragile X syndrome in Europe

2016 ◽  
Vol 17 (S1) ◽  
pp. 43-52 ◽  
Author(s):  
Karine Chevreul ◽  
◽  
Coralie Gandré ◽  
Karen Berg Brigham ◽  
Julio López-Bastida ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Fragile X Syndrome ◽  
Social Economic ◽  
Fragile X ◽  
Health Related Quality ◽  
Economic Costs ◽  
Related Quality ◽  
Health Related

Behavioral Intervention for Problem Behavior in Children With Fragile X Syndrome

2011 ◽  
Vol 116 (6) ◽  
pp. 457-478 ◽  
Author(s):  
Lauren J Moskowitz ◽  
Edward G Carr ◽  
V. Mark Durand
Keyword(s):  
Quality Of Life ◽  
Problem Behavior ◽  
Fragile X Syndrome ◽  
Behavioral Intervention ◽  
Fragile X ◽  
Family Quality Of Life ◽  
Baseline Design ◽  
Intervention Plan ◽  
The Given

Abstract Parents and professionals typically report problem behavior as a significant concern for children with fragile X syndrome. In the present study, the authors explored whether behaviorally based interventions would result in a reduction in problem behavior and an improvement in quality of life for 3 children with fragile X syndrome and their families. A multiple baseline design was used to demonstrate intervention effects for specific high-priority contexts (i.e., bedtime, running errands, and toileting). A multicomponent intervention plan was developed to teach the parents and child to effectively cope with the particular context. After intervention, there were substantial improvements in problem behavior and family quality of life within the given contexts. Results of this study demonstrated the effectiveness of behavioral intervention for children with fragile X syndrome.

3.38 PEDIATRIC QUALITY-OF-LIFE INVENTORY IN FRAGILE X SYNDROME

2019 ◽  
Vol 58 (10) ◽  
pp. S207
Author(s):  
Sarah Fitzpatrick ◽  
Lauren Schmitt ◽  
Ryan Adams ◽  
Ernest V. Pedapati ◽  
Rebecca Shaffer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Fragile X Syndrome ◽  
Fragile X ◽  
Quality Of Life Inventory ◽  
Life Inventory

scholarly journals Examination of Correlates to Health-Related Quality of Life in Individuals with Fragile X Syndrome

2020 ◽  
Vol 10 (4) ◽  
pp. 213
Author(s):  
Marika C. Coffman ◽  
Rebecca C. Shaffer ◽  
Lauren M. Schmitt ◽  
Kelli C. Dominick ◽  
Ernest Pedapati ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Fragile X Syndrome ◽  
Fragile X ◽  
Parent Report ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
Pedsql 4.0 ◽  
Degree Of Association

Health-related quality of life (HRQoL) is a multidimensional concept involving physical, psychological, social, and cognitive aspects of life. Individuals with Fragile X syndrome (FXS) experience a life-long disorder that impacts the HRQoL of the affected individual and their family. Thus, HRQoL may be an important outcome measure following intervention. However, it is yet not known whether HRQoL concerns relate to observed impairments in FXS. In the present study, we examined the nature and degree of association between HRQoL and established measures of functioning in FXS using the Parent Report for Children version of the PedsQL 4.0 Generic Core Scales and Cognitive Functioning Scale. We observed significant relationships between HRQoL a nd measures of adaptive behavior, maladaptive behaviors, and social functioning. The present study has implications for treatment outcomes for clinical trials in FXS.

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