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.

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 GAMBARAN KARIES RAMPAN PADA SISWA PENDIDIKAN ANAK USIA DINI DI DESA PINELENG II INDAH

e-GIGI ◽  
2015 ◽  
Vol 3 (1) ◽  
Author(s):  
Sherit Unaya Winda ◽  
Paulina Gunawan ◽  
Dinar A. Wicaksono
Keyword(s):  
Cross Sectional Study ◽  
Female Students ◽  
Type I ◽  
Type Ii ◽  
Cross Sectional ◽  
Childhood Education ◽  
Type Iii ◽  
Type Iv ◽  
The Village ◽  
Rampant Caries

Abstract: Rampant caries is one of the health problems of the teeth and mouth that often occurs in children. This affects the growth and development of children’s teeth. Rampant caries is often found in children aged fives, and the spread of highest in children aged 3 years. The purpose of this research is to know the description of the rampant caries in student of early childhood education in the village of pineleng II indah. This is a cross-sectional research with a sample of students of the aged 3-5 years old, with 74 people. The technique of the sample used is total sampling. Examination of rampant caries was done using criteria WHO then diagnosed based on the level of expansion. The result showed that rampant caries most widely encountered is type III in 19 student (38,78%), followed by type I in 14 student (28,57%, type II in 13 student (26,53%), and type IV in 3 student (6,12%). The conclusion of this research is rampant caries most of the students seen in the 5 years old and on female students. Type rampant caries most is the type III and the least that is the type IV.Keywords : rampant caries, childAbstrak: Karies rampan merupakan salah satu masalah kesehatan gigi dan mulut yang sering terjadi pada anak. Hal ini memengaruhi pertumbuhan serta perkembangan gigi anak. Karies rampan sering ditemukan pada anak usia balita dan penyebaran tertinggi pada anak usia 3 tahun. Tujuan penelitian ini untuk mengetahui gambaran karies rampan pada siswa Pendidikan Anak Usia Dini di desa Pineleng II Indah. Penelitian yang dilakukan merupakan jenis penelitian cross-sectional study dengan sampel siswa yang berusia 3-5 tahun yaitu sebanyak 74 orang. Teknik pengambilan sampel yang digunakan ialah total sampling. Pemeriksaan karies rampan dilakukan dengan menggunakan kriteria WHO kemudian didiagnosis berdasarkan tingkat perluasannya. Hasil penelitian menunjukkan bahwa tipe karies rampan yang paling banyak ditemui yaitu pada tipe III 19 siswa (38,78%), kemudian terbanyak kedua ialah tipe I 14 siswa (28,57%), terbanyak ketiga yaitu tipe II 13 siswa (26,53%), dan yang paling sedikit yaitu tipe IV 3 siswa (6,12%).Kesimpulan dari penelitian ini yaitu karies rampan paling banyak dijumpai pada siswa yang berumur 5 tahun dan pada siswa yang berjenis kelamin perempuan. Tipe karies rampan yang paling banyak yaitu tipe III dan yang paling sedikit yaitu tipe IV.Kata kunci : karies rampan, anak

scholarly journals Aspects of motor development and quality of life in the context of child obesity

2021 ◽  
Vol 31 (1) ◽  
pp. 58-65
Author(s):  
Maria Iara Socorro Martins ◽  
Natália Aguiar Moraes Vitoriano ◽  
Cristiany Azevedo Martins ◽  
Elisete Mendes Carvalho ◽  
Renata Viana Brígido de Moura Jucá ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Motor Development ◽  
Anxiety And Depression ◽  
Pediatric Endocrinology ◽  
Cross Sectional ◽  
Quality Of Life Inventory ◽  
Severely Obese ◽  
Life Inventory

Introduction: Child development is a period of progressive and complex transformations related to growth, maturation, learning, motor skills, and psychosocial issues. Objective: Analyze the influence of obesity on the aspects of motor development and quality of life of children aged three to eight years, and and their mothers’ levels of anxiety and depression. Methods: Cross-sectional descriptive and quantitative approach study with children enrolled and attended at a pediatric endocrinology in Fortaleza, CE, in the period between June and November 2017. The study sample consisted of 24 children from three to eight years of age. We used the anthropometric quantification, the Motor Development Scale, and the Pediatric Quality of Life Inventory (PedsQL™) for children. We applied the Beck anxiety and depression questionnaires for mothers. Results: 16 were female, and 17 were severely obese. Most of the sample showed motor development changes 42,85% classified as “inferior” in the obesity category, and 41.17% in the severely obese category. Both groups revealed”complete right-handed” and “undefined” laterality in around 40% of the individuals. The quality of life had a low mean score. The majority of mothers from both groups presented minimal anxiety and depression. Conclusions: Obesity interferes negatively with the overall motor development, determination of laterality, and quality of life of children, perceiving more severe levels of anxiety and depression in mothers of children severely obesity.

scholarly journals Kualitas Hidup Penderita Talasemia berdasarkan Instrumen Pediatric Quality of Life Inventory 4.0 Generic Core Scales di Ruang Rawat Anak Rumah Sakit Umum Cut Meutia Aceh Utara

Sari Pediatri ◽  
2018 ◽  
Vol 20 (1) ◽  
pp. 11
Author(s):  
Muhsinun Nikmah ◽  
Mauliza Mauliza
Keyword(s):  
Quality Of Life ◽  
Cross Sectional ◽  
Quality Of Life Inventory ◽  
Pedsql 4.0 ◽  
Life Inventory

Latar belakang. Talasemia merupakan kelainan genetik yang diderita seumur hidup dan akan menimbulkan banyak masalah akibat proses penyakit itu sendiri maupun karena pengobatannya. Hal ini akan memengaruhi kualitas hidup anak.Tujuan. Mengetahui kualitas hidup penderita talasemia berdasarkan instrumen Pediatric Quality of Life Inventory (PedsQL) 4.0 Generic Core Scales di Ruang Rawat Anak Rumah Sakit Umum Cut Meutia Aceh Utara.Metode. Penelitian deskriptif dengan desain penelitian cross sectional dengan besar sampel sebanyak 41 orang anak.Hasil. Hasil analisis univariat didapatkan rerata kualitas hidup subjek penelitian adalah 60,48. Kualitas hidup paling tinggi terdapat pada kelompok usia 13-18 tahun (68,42), jenis kelamin laki-laki (62,86), pendidikan SMA/Sederajat (81,52), kadar Hb pre-transfusi <9 g/dL (60,51), mendapat transfusi 3 bulan terakhir (61,60), lama sakit >5 tahun (65,74), dan pendapatan orangtua per bulan > Rp.3.5.000.000 (68,59).Kesimpulan. Rerata kualitas hidup penderita talasemia di Rumah Sakit Umum Cut Meutia Aceh Utara adalah buruk, khususnya pada fungsi sekolah.

The Study of Sexual Dimorphism in Lip Print Patterns Among Igbos in Anambra State of Nigeria: A Cross-Sectional Study

2020 ◽  
Vol 11 (2) ◽  
pp. 240-244
Author(s):  
Chijioke Mmadueke Okeke ◽  
Onyechege Ann ◽  
Ukoha Ukoha Ukoha ◽  
Uchechukwu Dimkpa ◽  
Ijeoma Enemuo
Keyword(s):  
Sex Determination ◽  
Cross Sectional Study ◽  
Frequent Pattern ◽  
Type I ◽  
Type Ii ◽  
Sectional Study ◽  
Cross Sectional ◽  
Type Iii ◽  
Type Iv ◽  
Significant Difference

Aim: To characterize the lip print pattern in a study population and to ascertain its potential for sex determination. Materials and Methods: A cross-sectional study was conducted among 300 undergraduate students (144 males and 156 females). Simple random sampling was used. Lip prints were obtained with lipstick and were classified according to Suzuki and Tsuchihashi classification. Data were analyzed with the Statistical Package for Social Sciences (SPSS) version 22 (IBM Corp., Armonk, NY, USA). The prevalence of lip print patterns was presented as frequencies and percentages, and the test of significance of gender difference was done with chi-square at the 95 percent confidence interval. Result: No two lip print patterns were found to be the same. There was a significant difference in the lip print patterns of females and males. In females, the pattern with the highest frequency was type II (40.4%). This was followed by type I (36.5%), type III (13.5%), type V (7.1%), and type IV (2.6%). In males, the pattern with the highest frequency was type IV (28.5%). This was followed by type III (26.4%), types I and V (each 16.0%), and type II (13.2%). When both sexes were considered together, type II was the most frequent pattern. Conclusion: Lip print is unique to individuals and it has potential for sex determination. The most prevalent patterns in females and males were type II and type IV, respectively.

Sign in / Sign up

Export Citation Format

Share Document