Reliability of telephone administration of the PedsQL™ Generic Quality of Life Inventory™ and Neuromuscular Module™ in spinal muscular atrophy (SMA)

2010 ◽  
Vol 20 (3) ◽  
pp. 162-165 ◽  
Author(s):  
Sally Dunaway ◽  
Jacqueline Montes ◽  
Megan Montgomery ◽  
Vanessa Battista ◽  
Benjamin Koo ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Spinal Muscular Atrophy ◽  
Muscular Atrophy ◽  
Quality Of Life Inventory ◽  
Generic Quality ◽  
Life Inventory ◽  
Telephone Administration

scholarly journals Quality of life of  children with spinal muscular atrophy  and their caregivers  from the perspective of caregivers :  a Chinese cross-sectional study

2020 ◽  
Author(s):  
Mei Yao ◽  
Ying Ma ◽  
Ruiying Qian ◽  
Yu Xia ◽  
Changzheng Yuan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Muscular Atrophy ◽  
Cross Sectional Study ◽  
Type I ◽  
Type Ii ◽  
Cross Sectional ◽  
Type Iii ◽  
Quality Of Life Inventory ◽  
Life Inventory

Abstract Background: Spinal muscular atrophy (SMA) is an autosomal-recessive motor neuron disease leading to dysfunction of multiple organs. SMA can impair the quality of life (QoL) of patients and family. We aimed to evaluate the QoL of children with SMA and their caregivers and to identify the factors associated with QoL in a cross-sectional study conducted in China.Methods: We recruited 101 children aged 0-17 years with SMA and their caregivers from a children’s hospital in China. Twenty-six children had type I SMA, 56 type II and 19 type III. Each child’s QoL was measured by the Pediatric Quality of Life Inventory 3.0 Neuromuscular Module (PedsQL NMM), which was completed by the child’s caregivers. The caregiver’s QoL was measured by the Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM). Information on sociodemographic characteristics, disease-specific characteristics, and treatments were collected using the proxy-reported questionnaire. Two-sample t-tests and one-way ANOVA were used to compare differences in average scores of QoL across subgroups.Results: Children with type III SMA had a higher average Total score of PedsQL NMM and higher average scores in domains Neuromuscular disease and Family resources than children with type I or type II SMA (p < 0.001). Caregivers of children with type III SMA reported higher average scores in the domains of Physical, Emotional, Social, and Cognitive functioning of the PedsQL FIM than those of children with types I or II SMA (p < 0.05). In addition, disease-related characteristics (e.g. limited mobility, stable course of disease, skeleton deformity, and digestive system dysfunction) and respiratory support were associated with lower average scores of PedsQL NMM and PedsQL FIM (p < 0.05). Exercise training, multidisciplinary team management and use of the medication Nusinersen were each associated with higher average scores in both PedsQL NMM and FIM (p < 0.05). Conclusion: Our study has demonstrated factors that may impair or improve QoL of children patients with SMA and their parents. Particularly, QoL was relatively poor in children with type I and type II SMA as well as in their caregivers compared to those with type III SMA. We strongly recommend that standard of care in a multidisciplinary team (MDT) be strengthened to improve the QoL of SMA patients. Our study called for increased attention from clinical physicians on measuring QoL in their clinical practices in order to enhance the understanding of impacts of SMA and to make better decisions regarding treatment.

scholarly journals Quality of life of  children with spinal muscular atrophy  and their caregivers  from the perspective of caregivers :  a Chinese cross-sectional study

2020 ◽  
Author(s):  
Mei Yao ◽  
Ying Ma ◽  
Ruiying Qian ◽  
Yu Xia ◽  
Changzheng Yuan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Muscular Atrophy ◽  
Cross Sectional Study ◽  
Type I ◽  
Type Ii ◽  
Cross Sectional ◽  
Type Iii ◽  
Quality Of Life Inventory ◽  
Life Inventory

Abstract Background: Spinal muscular atrophy (SMA) is an autosomal-recessive motor neuron disease leading to dysfunction of multiple organs. SMA can impair the quality of life (QoL) of patients and family. We aimed to evaluate the QoL of children with SMA and their caregivers and to identify the factors associated with QoL in a cross-sectional study conducted in China.Methods: We recruited 101 children aged 0-17 years with SMA and their caregivers from a children’s hospital in China. Twenty-six children had type I SMA, 56 type II and 19 type III. Each child’s QoL was measured by the Pediatric Quality of Life Inventory 3.0 Neuromuscular Module (PedsQL NMM), which was completed by the child’s caregivers. The caregiver’s QoL was measured by the Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM). Information on sociodemographic characteristics, disease-specific characteristics, and treatments were collected using the proxy-reported questionnaire. Two-sample t-tests and one-way ANOVA were used to compare differences in average scores of QoL across subgroups.Results: Children with type III SMA had a higher average Total score of PedsQL NMM and higher average scores in domains Neuromuscular disease and Family resources than children with type I or type II SMA (p < 0.001). Caregivers of children with type III SMA reported higher average scores in the domains of Physical, Emotional, Social, and Cognitive functioning of the PedsQL FIM than those of children with types I or II SMA (p < 0.05). In addition, disease-related characteristics (e.g. limited mobility, motor degeneration, skeleton deformity, and digestive system dysfunction) and respiratory support were associated with lower average scores of PedsQL NMM and PedsQL FIM (p < 0.05). Exercise training, multidisciplinary team management and use of the medication Nusinersen were each associated with higher average scores in both PedsQL NMM and FIM (p < 0.05).Conclusion: Our study has demonstrated factors that may impair or improve QoL of children patients with SMA and their parents. Particularly, QoL was relatively poor in children with type I and type II SMA as well as in their caregivers compared to those with type III SMA. We strongly recommend that standard of care in a multidisciplinary team (MDT) be strengthened to improve the QoL of SMA patients. Our study called for increased attention from clinical physicians on measuring QoL in their clinical practices in order to enhance the understanding of impacts of SMA and to make better decisions regarding treatment.

scholarly journals Quality of life of children with spinal muscular atrophy and their caregivers from the perspective of caregivers: a Chinese cross-sectional study

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Mei Yao ◽  
Ying Ma ◽  
Ruiying Qian ◽  
Yu Xia ◽  
Changzheng Yuan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Muscular Atrophy ◽  
Cross Sectional Study ◽  
Type I ◽  
Type Ii ◽  
Cross Sectional ◽  
Type Iii ◽  
Quality Of Life Inventory ◽  
Life Inventory

Abstract Background Spinal muscular atrophy (SMA) is an autosomal-recessive motor neuron disease leading to dysfunction of multiple organs. SMA can impair the quality of life (QoL) of patients and family. We aimed to evaluate the QoL of children with SMA and their caregivers and to identify the factors associated with QoL in a cross-sectional study conducted in China. Methods We recruited 101 children aged 0–17 years with SMA and their caregivers from a children’s hospital in China. Twenty-six children had type I SMA, 56 type II and 19 type III. Each child’s QoL was measured by the Pediatric Quality of Life Inventory 3.0 Neuromuscular Module (PedsQL NMM), which was completed by the child’s caregivers. The caregiver’s QoL was measured by the Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM). Information on sociodemographic characteristics, disease-specific characteristics, and treatments were collected using the proxy-reported questionnaire. Two-sample t tests and one-way ANOVA were used to compare differences in average scores of QoL across subgroups. Results Children with type III SMA had a higher average Total score of PedsQL NMM and higher average scores in domains Neuromuscular disease and Family resources than children with type I or type II SMA (p < 0.001). Caregivers of children with type III SMA reported higher average scores in the domains of Physical, Emotional, Social, and Cognitive functioning of the PedsQL FIM than those of children with types I or II SMA (p < 0.05). In addition, disease-related characteristics (e.g. limited mobility, stable course of disease, skeleton deformity, and digestive system dysfunction) and respiratory support were associated with lower average scores of PedsQL NMM and PedsQL FIM (p < 0.05). Exercise training, multidisciplinary team management and use of the medication Nusinersen were each associated with higher average scores in both PedsQL NMM and FIM (p < 0.05). Conclusion Our study has demonstrated factors that may impair or improve QoL of children patients with SMA and their parents. Particularly, QoL was relatively poor in children with type I and type II SMA as well as in their caregivers compared to those with type III SMA. We strongly recommend that standard of care in a multidisciplinary team be strengthened to improve the QoL of SMA patients. Our study called for increased attention from clinical physicians on measuring QoL in their clinical practices in order to enhance the understanding of impacts of SMA and to make better decisions regarding treatment.

scholarly journals Quality of Life of Children With Spinal Muscular Atrophy and Their Caregivers: A Chinese Cross-sectional Study

2020 ◽  
Author(s):  
Mei Yao ◽  
Ying Ma ◽  
Ruiying Qian ◽  
Yu Xia ◽  
Changzheng Yuan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Muscular Atrophy ◽  
Cross Sectional Study ◽  
Type I ◽  
Type Ii ◽  
Cross Sectional ◽  
Type Iii ◽  
Quality Of Life Inventory ◽  
Life Inventory

Abstract Background: Spinal muscular atrophy (SMA) is an autosomal recessive motor neuron disease leading to multiple organs dysfunction, which can impair the quality of life (QoL) of patients and family. We aimed to evaluate QoL of children with SMA and their caregivers, and to assess the associated factors in a Chinese cross-sectional study.Methods: 101 caregivers and children aged 0-14 years with SMA were recruited from a children hospital. 26 children had type I SMA, 56 type II and 19 type III. Children’s QoL was measured by the Pediatric Quality of Life Inventory 3.0 Neuromuscular Module (PedsQL NMM) that was filled by caregivers. Caregiver’s QoL was measured by the Pediatric Quality of Life Inventory Family Impact Module (PedsQL FIM). Information on sociodemographic, disease-specific characteristics, and treatments were collected by the proxy-reported questionnaire. Two independent t-tests and one-way ANOVA were applied to compare differences in scores of QoL across subgroups.Results: Children with type III SMA had higher total score of PedsQL NMM, and scores in neuromuscular disease and family resources domain than those with type I and type II SMA (p < 0.001). Caregivers of children with type III SMA reported higher scores in domains of physical, emotional, social, and cognitive function of PedsQL FIM than those of children with types I and II (p < 0.05). In addition, disease-related characteristics (e.g. limited mobility, motor degeneration, skeleton deformity, and digestive system dysfunction) and respiratory support were associated with lower scores of PedsQL NMM and PedsQL FIM (p < 0.05). Exercise training, multidisciplinary team management and using the medication nusinersen were associated with higher scores of QoL in both PedsQL NMM and FIM (p < 0.05). Conclusion: Our study has demonstrated the factors that may impair or improve QoL of children patients with SMA and their parents. Particularly, QoL was relatively poor in children with type I and type II SMA as well as in their caregivers than those with type III SMA. Our study called for attention from clinical physicians on measuring QoL in their clinical practices in order to enhance the understanding of impacts of SMA and make better decisions regarding treatment.

Associations of Age, Gender, and Family Income with Quality of Life in Children With Advanced Cancer

2021 ◽  
pp. 104345422199232
Author(s):  
Piera C. Robson ◽  
Mary S. Dietrich ◽  
Terrah Foster Akard
Keyword(s):  
Quality Of Life ◽  
Advanced Cancer ◽  
Family Income ◽  
Hematologic Malignancy ◽  
Secondary Analysis ◽  
Quality Of Life Inventory ◽  
Younger Age ◽  
Self Reports ◽  
Life Inventory

Background: Children with cancer often experience decreased quality of life (QOL) throughout the illness trajectory. The purpose of this study was to explore the associations of demographic characteristics with QOL in children with advanced cancer. Methods: This secondary analysis was part of a larger randomized clinical trial that evaluated the efficacy of a legacy intervention for children (7–17 years) with relapsed/refractory cancer and their primary parent caregivers. Assessments included child self-reports on the Pediatric Quality of Life Inventory (PedsQL) Cancer Module. Researchers used descriptive and linear regression statistical methods. Results: Children ( n = 128) averaged 10.9 years (SD = 3.0). The majority were female ( n = 68, 53%), white ( n = 107, 84%), had a hematologic malignancy ( n = 67, 52%), with family incomes of $50,000 or less ( n = 81, 63.3%). Statistically significant positive associations of both age and income level with PedsQL scores were observed ( p < .05) but not gender ( p > .05). The strongest correlations for age were with the procedural anxiety ( beta = 0.42), treatment anxiety ( beta = 0.26), and total ( beta = 0.28) scores (all p < .01). In general, there was a positive correlation between family income levels and PedsQL scores ( p < .05). The strongest correlations for income were with nausea ( R = 0.49), appearance ( R = 0.44), pain, and treatment anxiety (both R = 0.42) (all p < .01). Associations adjusted for age remained essentially the same (all p < .01). Discussion: Children with advanced cancer with lower family income and younger age are at high risk for poorer QOL. Oncology nurses should seek to identify families who may benefit from additional resources to promote QOL.

Validity and reliability of the French version of the Pediatric Quality of Life Inventory™ brain tumor module

2021 ◽  
Author(s):  
Maxime Caru ◽  
Sébastien Perreault ◽  
Ariane Levesque ◽  
Serge Sultan ◽  
Leandra Desjardins ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Brain Tumor ◽  
Validity And Reliability ◽  
French Version ◽  
Quality Of Life Inventory ◽  
Life Inventory

The development of the Tuebingen Cushing’s disease quality of life inventory (Tuebingen CD-25). Part II: normative data from 1784 healthy people

2012 ◽  
Vol 76 (6) ◽  
pp. 861-867 ◽  
Author(s):  
Monika Milian ◽  
Philipp Teufel ◽  
Juergen Honegger ◽  
Baptist Gallwitz ◽  
Guenter Schnauder ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cushing’S Disease ◽  
Normative Data ◽  
Healthy People ◽  
Cushing's Disease ◽  
Quality Of Life Inventory ◽  
Life Inventory
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