Feasibility of virtual reality and comparison of its effectiveness to biofeedback in children with Duchenne and Becker muscular dystrophies.

INTRODUCTION/AIMS: The utilization of virtual reality (VR) and biofeedback training, while effective in diverse populations, remains limited in the treatment of Duchenne and Becker muscular dystrophies (D/BMD). This study aimed to determine the feasibility of VR in children with D/BMD and compare the effectiveness of VR and biofeedback in children with D/BMD. METHODS: The study included 25 children with D/BMD. Eight children in the control group participated in a routine follow-up rehabilitation program, while the remaining children were randomly assigned to the VR (n = 9) and biofeedback (n = 8) groups for a 12-week intervention. The following evaluations were performed before, during (week 6), and after treatment: Muscle pain and cramps, laboratory studies, muscle strength, timed performance, function (Motor Function Measurement Scale-32, Vignos, and Brooke Scales), and balance (Pediatric Functional Reach Test and Balance Master System). Motivation for rehabilitation was determined. RESULTS: The median ages were 9.00 (VR), 8.75 (biofeedback), and 7.00 (control) years. The study found no significant differences between groups in pretreatment assessments for most measures, except for tandem step width (p < .05). VR and biofeedback interventions significantly improved various aspects (pain intensity, cramp frequency, cramp severity, muscle strength, timed performance, functional level, and balance) in children with D/BMD (p < .05), while the conventional rehabilitation program maintained patients' current status without any changes. The study found VR and biofeedback equally effective, with VR maintaining children's motivation for rehabilitation longer (p < .05). DISCUSSION: The study showed that both VR and biofeedback appear to be effective for rehabilitation this population, but additional, larger studies are needed.

Reliability and validity of the Turkish version of the Upper Limb Short Questionnaire in Duchenne muscular dystrophy.

PURPOSE: This study aimed to evaluate the construct validity and reliability of the Turkish version of the Upper Limb Short Questionnaire in Duchenne muscular dystrophy. MATERIALS AND METHODS: A total of 41 children with Duchenne muscular dystrophy have participated in the study. Upper and lower extremities functional levels were assessed with Vignos Scale and Brooke Upper Extremity Functional Rating Scale, respectively. The construct validity of the questionnaire was determined using the correlation between the Upper Limb Short Questionnaire and ABILHAND-Kids. The Cronbach alpha value was calculated to determine internal consistency. To determine test-retest reliability, 17 randomly selected children were evaluated seven days after the first evaluation, and the 'Intraclass Correlation Coefficient' value was calculated. RESULTS: There was a moderate level of positive correlation between the Upper Limb Short Questionnaire scores and the Vignos Scale (r = 0.52, p < 0.001) and the Brooke Upper Extremity Functional Rating Scale (r = 0.65, p < 0.001). There was a strong correlation between the Upper Limb Short Questionnaire and ABILHAND-Kids in the negative direction (r= -0.80, p < 0.001). Internal consistency of the ULSQ was fairly high (Cronbach's alpha = 0.785) and test-retest reliability was good (ICC = 0.86). CONCLUSION: The Turkish version of Upper Limb Short Questionnaire is a valid and reliable scale for children with Duchenne muscular dystrophy. It can be a useful tool in the UE clinical evaluation of children with Duchenne muscular dystrophy.

The effects of Kinesio taping on static and dynamic balance in children with down syndrome: a randomized controlled trial.

AIM: This study aimed to determine the effects of Kinesio tape applied to the plantar soles on static and dynamic balance in children with Down syndrome (DS). MATERIALS AND METHODS: The study was carried out in children with DS. The participants were grouped as Kinesio Taping (KT) (n = 12, DS) and Sham Taping (ST) (n = 12, DS). The Functional Reach Test (FRT) was used to evaluate functional balance and the Fast-Timed Up and Go (FAST-TUG) test to evaluate functional balance and capacity. The Modified Clinical test of Sensory Interaction on Balance (MCTSIB) was used to evaluate static balance. For both groups, all the assessments were made three times: at baseline (T0), right after the taping application (T1), and 40-45 minutes later (T2). RESULTS: Baseline FAST-TUG, FRT, and Eyes Open (EO) and Closed (EC) Sway velocity scores of the KT (medians- FAST-TUG:7.75 s, FRT:23.90 cm, EO: 0.70 deg/s, EC: 0.60 deg/s) and ST (medians-FAST-TUG:7.98 s, FRT:24 cm, EO: 0.85 deg/s, EC: 0.95 deg/s) groups were similar (p >0.05). Intragroup comparisons showed that FAST-TUG and FRT scores improved after the taping compared with T0 values in both KT (KT (FAST-TUG:7.75s-FRT:23.90cm)/KT1(FAST-TUG:7.55 s-FRT:28.25cm), KT(FAST-TUG:7.75s-FRT:23.90cm)/KT2(FAST-TUG:6.85s-FRT:27.50cm)) and ST groups (ST(FAST-TUG:7.98s-FRT:24cm)/ST1(FAST-TUG:7,95s-FRT:26.40cm), ST(FAST-TUG:7.98s-FRT:24cm)/ST2(FAST-TUG:7.26s-FRT:26.15cm)) (p < 0.05), while the sway velocity values were similar before and after the taping (p > 0.05). CONCLUSIONS: Taping on the plantar soles of children with DS may be affecting the immediate dynamic balance scores while it actually did not affect the static balance scores independent of the technique used. The interpretation of the results of this study should be made with caution. Further studies with long-term evaluations are needed.

The COVID-19 pandemic restrictions affect the healthcare and health status of paediatric patients with neuromuscular diseases: a developing country perspective.

PURPOSE: The COVID-19 pandemic has forced the rapid and unprecedented reorganisation of current practices in the treatment of neuromuscular disorders (NMD). Cessation of care and treatments can worsen the underlying condition, exacerbate symptoms, and increase anxiety, leading to a vicious circle and increased management concerns. This study aims to determine the changes in healthcare and health status of children with NMD from a developing country perspective. MATERIALS AND METHODS: Forty-seven children with NMD were included in this cross-sectional study. The participants were contacted via phone call. The survey conducted for the study was included demographic data, changes and problems in healthcare, perceived health status change, and satisfaction with the services provided. Descriptive statistics were used to characterise the sample. RESULTS: The mean age of the children was 7.86 ± 3.45 years. The participants encountered 24.83 ± 26.54% of difficulties in getting medication care, and there was 69.95 ± 24.47% disruption in accessing routine medical care. The participants' rehabilitation sessions were disrupted in the 78.54 ± 14.93%, and there were 95.83 ± 10.03% deficiencies in therapists' informing. Children with NMD indicated that their perceived health status decreased compared to before pandemic in all parameters. CONCLUSION: This study highlights the unfavourable indirect effect of the COVID-19 pandemic restrictions on healthcare and health status of paediatric patients with NMD. Since the COVID-19 pandemic is an uncertain process, the solutions or modifications should be promptly put into effect to improve the healthcare and health status of children with NMD.

Dual task impact on functional mobility and interaction of functional level and balance in patients with Duchenne muscular dystrophy.

BACKGROUND: Dystrophin, a protein crucial for various brain regions governing higher-order functions like learning and memory is notably absent in individuals with Duchenne muscular dystrophy (DMD). This absence of dystrophin in the brain is believed to underlie cognitive challenges in DMD. Cognitive and motor challenges observed in DMD could potentially hinder the execution of dual tasks. RESEARCH QUESTION: Is there a significant correlation between dual-task performance, functional mobility, and balance in children with DMD? METHOD: The study included 28 participants (14 DMD, 14 typical development). Timed Up and Go (TUG) test results were recorded for single and dual-task conditions (motor-motor, cognitive-motor). Functional level was assessed using Motor Function Measurement-32 (MFM-32), Brooke Upper Extremity Scale, and Vignos Scale. Balance was evaluated using Balance Master System and Pediatric Functional Reach Test (PFRT). RESULTS: Significant differences in TUG test scores across conditions were observed in both DMD and typical development groups (p < 0.05). Children with DMD exhibited longer completion times compared to typical development children (p < 0.05). Among children with DMD, there was a significant correlation between TUG scores in different task conditions and balance assessment (p < 0.05, r = 0.571 to -0.819). Lower MFM-32 scores in DMD children were correlated with worse TUG performance across conditions (p < 0.05, r = 0.586 to -0.868). SIGNIFIANCE: This study sheds light on the multifaceted nature of dual-tasking challenges in individuals with DMD, thereby contributing to a deeper understanding of the implications for rehabilitation strategies.

[The relation between health-related quality of life and pain, depression, anxiety, and functional independence in persons with chronic physical disability]. / Kronik fiziksel özürlü bireylerde agri, depresyon, anksiyete ve fonksiyonel bagimsizlik ile yasam kalitesi arasindaki iliski.

OBJECTIVES: This study was designed to investigate the relation between health- related quality of life and pain, depression, anxiety, and functional independence. METHODS: The study included 82 healthy subjects aged 38.18+/-11.06 and 89 physically disabled subjects aged 37.72+/-16.40. Physical and social characteristics of the subjects such as age, height, length, weight, gender, occupational and marital status, and level of education were recorded. Visual Analogue Scale, Beck Depression Inventory, Beck Anxiety Inventory, Nottingham Health Profile, and Functional Independence Measure were used to evaluate pain, depression, anxiety, quality of life, and functional independence, respectively. RESULTS: Compared to healthy individuals, chronically disabled subjects had higher pain, depression and anxiety and lower quality of life scores. Between-group comparison showed that there was a significant difference in pain, depression, anxiety levels and health-related quality of life (p<0.05). Similarly, both healthy and disabled individuals indicated a negative correlation between pain, depression, anxiety and quality of life (p<0.05). CONCLUSION: In individuals with chronic disabilities, pain may induce serious psychological problems, negatively affecting quality of life. This study showed that in chronically disabled individuals, there is a strong correlation between pain, depression, anxiety, and quality of life. These results should be considered carefully when planning assessment and rehabilitation programs for individuals with chronic disabilities.

Relationship among the Manual Ability Classification System (MACS), the Gross Motor Function Classification System (GMFCS), and the functional status (WeeFIM) in children with spastic cerebral palsy.

The aim of this study was to investigate the relationship among functional classification systems, the Manual Ability Classification System (MACS), the Gross Motor Function Classification System (GMFCS), and the functional status (WeeFIM) in children with spastic cerebral palsy (CP). One hundred and eighty-five children with spastic CP (101 males, 84 females), 65 (35.1%) diparetic, 60 (32.4%) quadriparetic, and 60 (32.4%) hemiparetic children, ranging from 4 to 15 years of age with a median age of 7 years, were included in the study. The children were classified according to the GMFCS for their motor function and according to the MACS for the functioning of their hands when handling objects in daily activities. The functional status and performance were assessed by using the Functional Independence Measure of Children (WeeFIM). A good correlation between the GMFCS and MACS was found in all children (r = 0.735, p < 0.01). There was also a correlation between the GMFCS and WeeFIM subscales according to subtypes and all parameters were correlated at the level of p < 0.01, the same as the MACS. There was no difference in the MACS scores among the age groups of 4-7, 8-11, and 12-15 years (p > 0.05). The use of both the GMFCS and MACS in practice and in research areas will provide an easy, practical, and simple classification of the functional status of children with CP. The adaptation of both of these scales and WeeFIM and using these scales together give the opportunity for a detailed analysis of the functional level of children with spastic CP and reflect the differences between clinical types of CP.

The effects of osteopathic treatment on constipation in children with cerebral palsy: a pilot study.

OBJECTIVE: This pilot study was designed to investigate the effectiveness of osteopathic treatment in children with cerebral palsy and chronic constipation. METHODS: This study included 13 children with cerebral palsy diagnosed as having chronic constipation by a gastroenterologist. The subjects were separated into 2 groups. Group 1 was treated with osteopathic methods and group 2 underwent both medical and exactly the same osteopathic treatments of group 1. Osteopathic treatments included fascial release, iliopsoas muscle release, sphincter release, and bowel mobilizations. Gross Motor Functional Classification System, Functional Independence Measure for Children, and Modified Ashworth Scale were used to determine the level of disability, functional independence, and muscle tonus, respectively. In addition, Constipation Assessment Scale was administered to the subjects to determine the severity of constipation. The satisfaction from the treatment was measured using a Visual Analogue Scale at 3 and 6 months. RESULTS: Most of the children included in this study were determined as level IV or V according to Gross Motor Functional Classification System. The satisfaction of the subjects or the families with the treatments was not different when the groups were compared (P > .05). Constipation Assessment Scale scores decreased significantly in both groups (P < .05). Pretreatment (initial evaluation) and posttreatment (follow-ups at 3 and 6 months) results revealed no difference between the groups in either aspects (P > .05). However, both groups showed significant improvements compared with baseline evaluations (P < .05). CONCLUSION: Osteopathic methods were as effective as osteopathic methods in addition to medical care for both treatment groups. The results of this study suggest that osteopathic methods may be helpful as an alternative treatment in constipation. Additional advanced studies should be conducted.

Relationship between quality of life and functional status of young adults and adults with cerebral palsy.

PURPOSE: The aim of this study was investigate the relation between health related quality of life (HRQoL) and functional status in young adult or adult cerebral palsied individuals. METHODS: The study included 45 cerebral palsied subjects who were divided into two groups as young adults (n = 21, group 1) and adults (n = 24, group 2), over the age 15 years. Gross Motor Function Classification System (GMFCS), Functional Independence Measurement (FIM), Physical Mobility Scale (PMS), Nottingham Health Profile (NHP), Visual Analogue Scale (VAS) were used as outcome measures. RESULTS: In group 1, GMFCS and PMS scores were significantly correlated with total the total score of FIM (p < 0.05). Although total FIM, PMS, LS and GMFCS scores were not correlated with the total NHP score (p > 0.05), pain subscale of NHP was significantly correlated with self care and mobility subscales of FIM (p < 0.05). Also, self care, mobility, locomotion subscales and total score of FIM were highly correlated with the physical activity subscale of NHP (p < 0.05). In group 2, our findings were also similar to those of young adults when the relations between total NHP score and total FIM, PMS, LS and GMFCS were investigated (p > 0.05) and also some subscales of FIM and NHP presented high correlations in between. In addition, there were significant differences between the groups in GMFCS, LS and locomotion and self care subscales of FIM (p < 0.05). CONCLUSION: Although HRQoL in young cerebral palsied individuals seems to be more effected by parameters related to physical condition, in cerebral palsied adults psychological and emotional aspects may be more important indicators related to HRQoL. For that reasons, more population specific measures have to be developed for in-depth analysis of these factors.

Investigation of interobserver reliability of the Gillette Functional Assessment Questionnaire in children with spastic diparetic cerebral palsy.

OBJECTIVES: Information obtained from families is of particular importance in the evaluation of functional mobility skills of children with cerebral palsy (CP) after orthopedic interventions and long-term rehabilitation applications. This study was designed to evaluate the interobserver reliability of the Gillette Functional Assessment Questionnaire (FAQ) which was administered to the mothers and the physiotherapist for children with CP. METHODS: The study included 52 spastic diparetic children with CP (22 girls, 30 boys; mean age 7.8+/-4.4 years; range 4 to 12 years) and their mothers. According to the Gross Motor Function Classification System (GMFCS), all the children were in level 1 to 3. The Gillette FAQ was administered to the mother and physiotherapist to determine the functional walking level of the child and the interobserver reliability of the FAQ was calculated. In addition, gross motor performance was evaluated by the standing and walking-running-jumping dimensions of the Gross Motor Performance Measure (GMPM), and functional independence level was evaluated by the transfer and locomotion dimensions of the Functional Independence Measure for Children (WeeFIM). Correlations were sought between the FAQ results of the physiotherapist and mothers and the GMFCS, GMPM, and WeeFIM. RESULTS: The intraclass correlation coefficient for interobserver reliability of the Gillette FAQ was 0.94 (95% CI 0.898-0.966). A highly significant correlation was found between the responses of the mother and physiotherapist to the Gillette FAQ (r=0.882, p<0.01). The responses of the mother and physiotherapist to the Gillette FAQ showed a negative correlation with the GMFCS level, and positive correlations with the dimensions of the GMPM and WeeFIM studied (p<0.01). CONCLUSION: The Gillette FAQ can be used by the physiotherapists to determine the functional changes in spastic diparetic children with CP and can help clinicians derive important information from the families about functional walking of their children.