{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,4,30]],"date-time":"2026-04-30T16:02:08Z","timestamp":1777564928372,"version":"3.51.4"},"reference-count":39,"publisher":"Public Library of Science (PLoS)","issue":"11","license":[{"start":{"date-parts":[[2024,11,11]],"date-time":"2024-11-11T00:00:00Z","timestamp":1731283200000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/501100004515","name":"Universiti Kebangsaan Malaysia","doi-asserted-by":"publisher","award":["GUP-2021-059"],"award-info":[{"award-number":["GUP-2021-059"]}],"id":[{"id":"10.13039\/501100004515","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["www.plosone.org"],"crossmark-restriction":false},"short-container-title":["PLoS ONE"],"abstract":"\nIntroduction<\/jats:title>\nParkinson disease (PD), a neurodegenerative disorder that progresses over time, is steadily growing in number and prevalence worldwide. PD in Malaysia is expected to increase five-fold by 2040 from the existing estimate of 20,000 patients in 2018. Treatment program of PD in Malaysia is rather unstructured, and there is no known comprehensive PD family caregiver training program available to date. To ensure the quality of a program, it must be tested for feasibility, effectiveness and sustainability. This paper describes the protocol of a study that evaluates the effectiveness of a structured, comprehensive training program of family caregiver to persons with PD in comparison to usual care.<\/jats:p>\n<\/jats:sec>\n\nMaterials and methods\u2013Study protocol<\/jats:title>\nA total of 60 pairs of persons with PD of stage II and III, and their primary family caregiver will be recruited and allocated into either an experimental or a control group for 12 weeks of intervention. The experimental group will undergo initial training from multi-disciplinary healthcare providers and will be given a physical module containing weekly tasks that must be practised at home. While the control group will receive a usual care. Both groups will be assessed in terms of physical functions, functional mobility, quality of life (QoL), caregiver burden and knowledge using standardised assessment tools namely Movement Disorder Society-Unified Parkinson\u2019s Disease Rating Scale (MDS-UPDRS), Timed Up and Go (TUG) test, Parkinson\u2019s Disease Questionnaire (PDQ-39), European Quality of Life five-dimensions (EQ-5D), Malay version of Zarit Burden Interview (MZBI) and Knowledge of Parkinson Disease Questionnaire (KPDQ). In addition, the feasibility and sustainability of the interventions will be evaluated, alongside its cost-effectiveness based on the average and incremental cost effectiveness ratio. All data will be analysed using descriptive and inferential statistics, particularly mixed model ANOVA.<\/jats:p>\n<\/jats:sec>\n\nDiscussion<\/jats:title>\nThere is a significant gap in the literature pertaining family caregiver training programs for people with PD. Documented programs are lacking in term of comprehensiveness of content, application approach and the measurement of training outcomes including the program cost-effectiveness. The feasibility and effectiveness of such training program in a Malaysian setting also requires investigation due to differences in living environment, support system and population\u2019s perception. This study will assist to fulfil the existing literature gap and demonstrate the potential benefit of caregiver involvement in mediating the care and therapy for PD in the home setting. Optimum knowledge and skills gained through the training are expected to enhance the confidence and ability of the family caregivers and may possibly reduce their perceived caregiving burden.<\/jats:p>\n<\/jats:sec>\n\nProtocol registration<\/jats:title>\nThe protocol of this study is registered in the Australian-New Zealand Clinical Trial Registry (ANZCTR) with a registration number ACTRN12623000336684<\/jats:ext-link>.<\/jats:p>\n<\/jats:sec>","DOI":"10.1371\/journal.pone.0309648","type":"journal-article","created":{"date-parts":[[2024,11,11]],"date-time":"2024-11-11T18:37:33Z","timestamp":1731350253000},"page":"e0309648","update-policy":"https:\/\/doi.org\/10.1371\/journal.pone.corrections_policy","source":"Crossref","is-referenced-by-count":1,"title":["A single-blind, randomised control trial on the effectiveness of a structured multi component training module for family caregiver of persons with Parkinson\u2019s disease: A study protocol"],"prefix":"10.1371","volume":"19","author":[{"ORCID":"https:\/\/orcid.org\/0009-0007-1402-6745","authenticated-orcid":true,"given":"Nur Izyan","family":"Mohd Amin","sequence":"first","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Nor Azlin","family":"Mohd Nordin","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Aniza","family":"Ismail","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Sharmila Gopala Krishna","family":"Pillai","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]},{"given":"Hanif Farhan","family":"Mohd Rasdi","sequence":"additional","affiliation":[],"role":[{"role":"author","vocabulary":"crossref"}]}],"member":"340","published-online":{"date-parts":[[2024,11,11]]},"reference":[{"issue":"3","key":"pone.0309648.ref001","doi-asserted-by":"crossref","first-page":"1851","DOI":"10.3390\/ijms23031851","article-title":"A Review of the Common Neurodegenerative Disorders: Current Therapeutic Approaches and the Potential Role of Nanotherapeutics","volume":"23","author":"RNL Lamptey","year":"2022","journal-title":"Int J Mol Sci"},{"key":"pone.0309648.ref002","unstructured":"Department of Statistics Malaysia. Statistics of Parkinson\u2019s Disease in Malaysia. 2018."},{"issue":"3","key":"pone.0309648.ref003","doi-asserted-by":"crossref","first-page":"270","DOI":"10.1111\/cns.13549","article-title":"Quality Of Life In Parkinson\u2019s Disease: A Systematic Review And Meta\u2010Analysis Of Comparative Studies","volume":"27","author":"N Zhao","year":"2020","journal-title":"CNS Neuroscience & Therapeutics"},{"issue":"5","key":"pone.0309648.ref004","article-title":"Perception on the quality of life, communication and life satisfaction among individuals with Parkison\u2019s and their caregivers","volume":"29","author":"SY Chu","year":"2019","journal-title":"Ethiopian Journal of Health Sciences"},{"issue":"1","key":"pone.0309648.ref005","doi-asserted-by":"crossref","first-page":"42","DOI":"10.14802\/jmd.20079","article-title":"Health-related Quality of Life for Parkinson\u2019s Disease Patients and Their Caregivers","volume":"14","author":"M Lubomski","year":"2021","journal-title":"Journal of 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Kang","year":"2021","journal-title":"Journal of educational evaluation for health professions"},{"issue":"10","key":"pone.0309648.ref021","doi-asserted-by":"crossref","first-page":"e0275738","DOI":"10.1371\/journal.pone.0275738","article-title":"Exploring the feasibility of technological visuo-cognitive training in Parkinson\u2019s: Study protocol for a pilot randomised controlled trial","volume":"17","author":"J Das","year":"2022","journal-title":"Plos one"},{"issue":"7","key":"pone.0309648.ref022","doi-asserted-by":"crossref","first-page":"e0270766","DOI":"10.1371\/journal.pone.0270766","article-title":"Efficacy of an asynchronous telerehabilitation program in post-COVID-19 patients: A protocol for a pilot randomized controlled trial","volume":"17","author":"B Carpallo-Porcar","year":"2022","journal-title":"PloS one"},{"issue":"1","key":"pone.0309648.ref023","doi-asserted-by":"crossref","first-page":"108","DOI":"10.1186\/s13012-017-0635-3","article-title":"Psychometric assessment of three newly developed implementation outcome measures","volume":"12","author":"B. 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Salleh","year":"2023","journal-title":"PloS one"},{"issue":"15","key":"pone.0309648.ref025","doi-asserted-by":"crossref","first-page":"2129","DOI":"10.1002\/mds.22340","article-title":"Movement Disorder Society\u2010sponsored revision of the Unified Parkinson\u2019s Disease Rating Scale (MDS\u2010UPDRS): scale presentation and clinimetric testing results","volume":"23","author":"CG Goetz","year":"2008","journal-title":"Movement disorders: official journal of the Movement Disorder Society"},{"issue":"1","key":"pone.0309648.ref026","doi-asserted-by":"crossref","first-page":"114","DOI":"10.2522\/ptj.20090126","article-title":"Minimal Detectable Change Of The Timed \"Up & Go\" Test And The Dynamic Gait Index In People With Parkinson Disease","volume":"91","author":"SL Huang","year":"2011","journal-title":"Physical Therapy"},{"issue":"6","key":"pone.0309648.ref027","doi-asserted-by":"crossref","first-page":"733","DOI":"10.2522\/ptj.20070214","article-title":"Test-retest reliability and minimal detectable change on balance and ambulation tests, the 36-item short-form health survey, and the unified Parkinson disease rating scale in people with parkinsonism.","volume":"88","author":"T Steffen","year":"2008","journal-title":"Physical therapy"},{"key":"pone.0309648.ref028","doi-asserted-by":"crossref","first-page":"S10","DOI":"10.1007\/PL00007730","article-title":"PDQ-39: a review of the development, validation and application of a Parkinson\u2019s disease quality of life questionnaire and its associated measures","volume":"245","author":"V Peto","year":"1998","journal-title":"Journal of neurology"},{"key":"pone.0309648.ref029","doi-asserted-by":"crossref","first-page":"100","DOI":"10.1016\/j.jocn.2024.03.032","article-title":"Psychometric properties of the Parkinson\u2019s disease Questionnaire\u2212 39 and its short form Parkinson\u2019s disease Questionnaire\u2212 8: A systematic review and meta-analysis","volume":"123","author":"I Ruotolo","year":"2024","journal-title":"Journal of Clinical Neuroscience"},{"key":"pone.0309648.ref030","unstructured":"EuroQoL Research Foundation. EQ-5D-5L User Guide, 2019. Available from: https:\/\/euroqol.org\/publications\/user-guides."},{"key":"pone.0309648.ref031","doi-asserted-by":"crossref","DOI":"10.1007\/1-4020-5511-0","author":"A. Szende","year":"2007","journal-title":"EQ-5D Value Sets: Inventory, Comparative Review and User Guide"},{"key":"pone.0309648.ref032","doi-asserted-by":"crossref","first-page":"715","DOI":"10.1007\/s40273-018-0758-7","article-title":"EQ-5D-5L valuation for the Malaysian population","volume":"37","author":"AA Shafie","year":"2019","journal-title":"Pharmacoeconomics"},{"issue":"2","key":"pone.0309648.ref033","first-page":"3","article-title":"Validation of the Malay Version of Zarit Burden Interview (MZBI)","volume":"26","author":"VK Shim","year":"2018","journal-title":"Malaysian Journal of Psychiatry"},{"issue":"4","key":"pone.0309648.ref034","doi-asserted-by":"crossref","first-page":"865","DOI":"10.3233\/JPD-150594","article-title":"Knowledge of Parkinson\u2019s disease in a multiethnic urban Asian setting","volume":"5","author":"AH Tan","year":"2015","journal-title":"Journal of Parkinson\u2019s Disease"},{"issue":"4","key":"pone.0309648.ref035","first-page":"662","article-title":"Estimating an EQ-5D-5L Value Set for China, Value in Health,","volume":"20","author":"Nan Luo","year":"2017"},{"key":"pone.0309648.ref036","unstructured":"Cohen J, Statistical Power Analysis for the Behavioral Sciences (2nd ed.), 1988."},{"issue":"3\u20134","key":"pone.0309648.ref037","first-page":"131","article-title":"Quality of Life and Caregivers\u2019 Burden of Parkinson\u2019s Disease. 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