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

Meilani E, Zanudin A, Nordin NAM

Medicine (Baltimore), 2020 Dec 24;99(52):e23897.
PMID: 33350786 DOI: 10.1097/MD.0000000000023897

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.
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

Meilani E, Zanudin A, Nordin NAM

Lymphat Res Biol, 2024 Apr 12.
PMID: 38608242 DOI: 10.1089/lrb.2023.0045

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

Zanudin A, Mercer TH, Jagadamma KC, van der Linden ML

Gait Posture, 2017 10;58:30-40.
PMID: 28711651 DOI: 10.1016/j.gaitpost.2017.07.005

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

Mohd Nordin NA, Hui Shan E, Zanudin A

Int J Environ Res Public Health, 2019 12 16;16(24).
PMID: 31888294 DOI: 10.3390/ijerph16245145

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

Mohd Iqbal HA, Ho WS, Zanudin A, Hisham H, Mohd Nordin NA

World J Clin Cases, 2023 Dec 26;11(36):8595-8602.
PMID: 38188206 DOI: 10.12998/wjcc.v11.i36.8595

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.