Psychometric Evaluation of the Bahasa Malaysia Version of the Lymphedema Functioning, Disability, and Health Questionnaire for Upper Limb Lymphedema in Patients with Breast Cancer-Related Lymphedema.

Background: Breast cancer-related lymphedema (BCRL) is the most prevalent comorbidity that occurs following breast cancer treatments and has negative impact on the patients' quality of life (QoL). The Lymphedema Functioning, Disability, and Health Questionnaire for Upper Limb Lymphedema (Lymph-ICF-UL) is a valid and reliable instrument in assessing the QoL of patients with BCRL. However, the Bahasa Malaysia (BM) version is not available yet. This study aimed to translate the Lymph-ICF-UL into BM and to evaluate its validity and reliability. Methods and Results: A forward-backward translation was performed based on Sousa's guideline, and then, the face, content, construct validity, internal consistency, and test-retest reliability were tested. Face validity was assessed by five patients, and content validity was evaluated by six experts. Then, construct validity and internal validity were assessed in 107 patients. Finally, test-retest reliability was analyzed in 21 patients. Two items were eliminated following suggestions from the patients and experts. All patients found the scoring system and items clear and relevant. The results showed sufficient content validity index and modified kappa statistics value. Confirmatory factor analysis showed acceptable fit indices. Cronbach's alpha values ranged from 0.67 to 0.95, intraclass correlation coefficient ranged from 0.88 to 0.99, standard error measurement was 2.29-6.15, and the Bland-Altman plot showed an agreement between two test occasions. Conclusion: These results suggested that the Lymph-ICF-UL BM has good validity and reliability in evaluating the QoL of patients with BCRL in Malaysia.

Body Mass Index, Physical Activity, Cardiorespiratory Endurance and Quality of Life among Children with Physical Disabilities.

BACKGROUND: Children with physical disabilities (PD) have reduced levels of physical activity (PA) compared to typically developing children, which increases their risk of becoming overweight and obese, which leads to numerous adverse health consequences. This study aimed to determine the differences between groups classified by body mass index (BMI) percentile in terms of PA levels, cardiorespiratory endurance and quality of life (QoL), and also to evaluate the relationship between BMI percentile and PA levels, cardiorespiratory endurance and QoL in children and adolescents with physical disabilities. METHODS: A total of 172 children and adolescents with PD aged between 5 and 17 years from Hospital Tunku Azizah were included in this cross-sectional study. The BMI percentile was calculated to determine the weight status. PA levels were assessed with the Physical Activity Questionnaire for Older Children (PAQ-C), cardiorespiratory endurance was measured by the Six-Minute Walk Test (6MWT) and QoL was measured by the Paediatric Quality of Life Inventory version 2.0 (PedsQL 2.0). RESULTS: According to the BMI percentile, 70.3% had a healthy BMI percentile (50th to 84th percentile), 11.6% were overweight (50th to 84th percentile), 11% were underweight (0-49th percentile) and 7.0% were obese (95th percentile and above). Most children reported a healthy weight, and the rates of being overweight and obese were higher in children who could ambulate without aids (6.4% and 3.5%, respectively) compared to those who used walking aids (5.2% and 3.5%, respectively). Significant differences were found in the PAQ-C, 6MWT and PedsQL 2.0 scores between different BMI percentile groups (p < 0.05). There were also significant correlations between the BMI percentile and the PAQ-C (r = 0.209, p < 0.001), 6MWT (r = 0.217, p < 0.001) and PedsQL 2.0 (r = 0.189, p < 0.001). CONCLUSION: The rate of being overweight and obese is greater among children who ambulate without aids than among those with aids. An increase in the BMI percentile can reduce the QoL in different ways. This study suggests that children with PD who can walk without aids are at a greater risk of being overweight and obese. Hence, the engagement of this population in PA is crucial for their weight management.

Effects of video game-based therapy in an adolescent with cerebral palsy: A case report.

BACKGROUND: Herein, we report the case of a 13-year-old boy with spastic quadriplegia cerebral palsy (CP) at Gross Motor Function Classification System (GMFCS) level II, engaging in a 6-wk video game-based therapy (VBT) program. This study aimed to offer essential insights regarding VBT's impact on enhancing the physical function and improving the quality of life (QoL) of adolescents diagnosed with CP. This report provides a distinctive viewpoint that can inform and direct future clinical practices and research endeavors. CASE SUMMARY: The boy presented with moderate mobility, balance, and overall well-being. He faced challenges with diminished lower limb strength, which affected his daily living and physical fitness capabilities. Our participant was diagnosed with spastic quadriplegic CP at GMFCS level II. He participated in a 6-wk program of VBT using a play station. This innovative approach incorporates warm-up exercises, interactive activities, and cool-down routines, targeting various movements, including single-leg stance, weight shifting, kicking, jumping, marching, and squatting. After VBT, the strength of the left hip extensor significantly increased from 199.3 N to 541.3 N. Distance covered as part of a 6-min walk test increased by 82 m. His Paediatric QoL Inventory score increased dramatically by 25.9%. CONCLUSION: VBT is an innovative, individualized therapy that enhances physical function and QoL in CP, emphasizing its role in ambulatory patients.

Psychometric Properties of Quality of Life Questionnaires for Patients with Breast Cancer-Related Lymphedema: A Systematic Review.

BACKGROUNDS: Assessing quality of life (QoL) using a well-developed and validated questionnaire is an essential part of a breast cancer-related lymphedema (BCRL) treatment. However, a QoL questionnaire with the best psychometric properties is so far unknown. The aim of this systematic review is to evaluate the psychometric properties of the questionnaires measuring the QoL of patients with BCRL. METHODS: A thorough search was performed to identify published studies in electronic databases such as Medline (via Ovid), EBSCOhost, PubMed, Scopus, and Web of Science, on 8 February 2022, by using search terms as follows: 'quality of life'; 'breast cancer'; 'upper limb'; 'lymphedema'; 'questionnaire'; and 'measurement properties.' Two reviewers conducted article selection, data extraction, and quality assessment independently. The third reviewer helped solve any possible disagreements between the two reviewers. The COSMIN checklist and manual were used to assess the quality of included studies. RESULTS: A total of nineteen articles with nine questionnaires were included and assessed using the COSMIN Risk of Bias checklist. Most studies only assessed content validity, structural validity, internal consistency, reliability, and construct validity. Lymph-ICF-UL showed the most 'sufficient' and 'high' quality of evidence ratings for its measurement properties. CONCLUSION: The most appropriate questionnaire for use based on our assessment is Lymph-ICF-UL.

Psychometric properties of quality of life questionnaires for patients with breast cancer-related lymphedema: A protocol for a systematic review.

BACKGROUND: Breast-cancer related lymphedema (BCRL) is a common condition among breast cancer survivors that could impact the quality of life (QoL) of patients. Exploring the QoL of the patients with BCRL using valid and reliable QoL is crucial to capture the status of this important aspect hence appropriate intervention could be implement to patient. However, so far no scientific review is available, which reports the psychometric properties of the QoL questionnaires used in BCRL. The purpose of this systematic review is to comprehensively assess the psychometric properties of QoL questionnaires in patients with BCRL. METHODS: We will perform comprehensive searches of published studies in electronic databases such as Medline (via Ovid), EBSCOhost, PubMed, Scopus, and Web of Science by using the following search terms: "quality of life"; "breast cancer"; "upper limb"; "lymphedema"; "questionnaire"; and "measurement properties." Only full-text articles in English language are included. Two reviewers will independently conduct the article selection, data extraction, and quality assessment. Any possible conflict between the 2 reviewers is going to be solved with the help of a third reviewer. The Consensus-based Standards for the Selection of Health Measurement Instrument (COSMIN) checklist and manual will be used to assess the selected study quality. RESULTS: This review will provide an updated overview of available lymphedema-specific questionnaires used in BCRL population and then recommend the most valid and reliable QoL questionnaire for clinical and research use in patients with BCRL. CONCLUSION: This review may help the clinician and researcher to find an updated overview of various questionnaires used to assess BCRL patients' QoL. ETHICS AND DISSEMINATION: This review will use data from published studies. Therefore, ethical approval is not required prior to this review. The results of this review will be published in a peer-reviewed journal or presented at conferences. STUDY REGISTRATION: OSF osf.io/8xwym.

The Unmet Needs of Parents of Highly Dependent Children with Cerebral Palsy.

The overall care for children with cerebral palsy (CP) is challenging to the family which causes significant impacts to their livelihood. There is limited qualitative research that reports the unmet needs of parents with physically disabled children, especially highly dependent CP. The aim of this study was to explore the unmet needs of parents of highly dependent children with CP. A qualitative study using semi-structured face to face interviews was carried out among nine parents of children with CP with gross motor classification function score (GMFCS) levels III, IV, and V. The interviews were tape-recorded and transcribed verbatim. Transcribed data was analysed using thematic analysis method. Several unmet needs were highlighted by the parents; namely the needs in receiving information regarding CP conditions, getting psychological and financial support and explaining the child's condition to strangers. In addition, parents expressed the need for better support from the social welfare department, as well as in effectively organising family functioning. The findings of this study indicate that there is a need for the healthcare professionals to develop suitable strategies to assist the parents of highly dependent children with CP in fulfilling their specific needs. The role of relevant agencies should be optimised in addressing this area of concern.

Psychometric properties of measures of gait quality and walking performance in young people with Cerebral Palsy: A systematic review.

Availability of outcome measures (OMs) with robust psychometric properties is an essential prerequisite for the evaluation of interventions designed to address gait deterioration in young people with Cerebral Palsy (CP). This review evaluates evidence for the reliability, validity and responsiveness of outcome measures of gait quality and walking performance in young people with CP. A systematic search was performed in MEDLINE, CINAHL, PubMed and Scopus. Articles that met the eligibility criteria were selected. Methodological quality of studies was independently rated by two raters using the modified COnsensus-based Standard for the selection of health status Measurement INstruments checklist. Strength of evidence was rated using standardised guidelines. Best evidence synthesis was scored according to Cochrane criteria. Fifty-one articles reporting on 18 distinct OMs were included for review. Best evidence synthesis indicated a moderate to strong evidence for the reliability for OMs of walking performance but conflicting evidence for the reliability of OMs of gait quality. The evidence for responsiveness for all OMs included in this review was rated as 'unknown'. The limitations of using the modified COSMIN scoring for small sample sizes are acknowledged. Future studies of high methodological quality are needed to explore the responsiveness of OMs assessing gait quality and walking performance in young people with CP.

Perinatal events and motor performance of children born with ELBW and nondisabled.

PURPOSE: To explore the relationship between perinatal variables and motor performance in children who were born with extremely low birth weight (ELBW) and were nondisabled at 1 and 4 years. METHODS: Children without neurological or cognitive impairment (n = 48) born weighing less than 1000 g between 1992 and 1994 were assessed at 1 and 4 years corrected age using the Neurosensory Motor Developmental Assessment (NSMDA). Scores were used to categorize motor performance as normal or abnormal. RESULTS: Chronic lung disease (CLD) of prematurity, necrotizing enterocolitis (NEC), and patent ductus arteriosus were associated with NSMDA category at 1 year. Chronic lung disease, male gender, and NEC were associated with NSMDA category at 4 years. Multiple regression analyses revealed that CLD and NEC were independently associated with abnormal motor outcomes at 1 year. CONCLUSIONS: Early assessment and motor therapy is recommended for infants with CLD, because of its effect on motor performance in this otherwise healthy group of children born with ELBW.

Perinatal factors in non-disabled ELBW school children and later performance.

AIM: To determine the association between perinatal events and subsequent motor performance, cardiorespiratory endurance and respiratory function in non-disabled extremely low birthweight (ELBW) school children at 12 years of age. METHODS: Forty-eight ELBW infants were included in this study. The Movement Assessment Battery for Children (MABC), VO(2) max score as a measure of cardiorespiratory endurance and respiratory function testing were performed and perinatal variables were extracted from the children's hospital files. Children with MABC score ≤ 15th centile were described as having suspect motor performance. Children were classified as being unfit with a VO(2) max > 1 standard deviation below the mean according to gender and age. Perinatal risk factors were explored as risk factors for motor outcome, cardiorespiratory endurance and respiratory function. RESULTS: MABC category was significantly related with gender (P = 0.005) and chronic neonatal lung disease (P = 0.013). Multiple regression analysis showed motor outcome at 12 years to be independently related to male gender (P = 0.03) and chronic neonatal lung disease (P = 0.045). Sixty-five percent of all the children were identified as unfit. Chronic neonatal lung disease was significantly related to cardiorespiratory endurance (P = 0.03) and predicted VO(2) max at 12 years (P = 0.05). No perinatal factors were significantly related to respiratory function variables. CONCLUSION: Male gender and chronic neonatal lung disease were associated with later motor outcome of ELBW school children. It is suggested that objective and consistent follow-up from childhood through preadolescence are important to address motor and fitness issues especially for male children born with ELBW.