Dataset Information

Translation, Cultural Adaptation, and Validation of the Hiligaynon Montreal Cognitive Assessment Tool (MoCA-Hil) Among Patients With X-Linked Dystonia Parkinsonism (XDP).

ABSTRACT: Background: X-linked dystonia parkinsonism (XDP) is a neurodegenerative disease endemic to Filipinos with maternal lineage from Panay Island, Philippines. Patients present with dystonia concurrent with or followed by parkinsonism. Non-motor symptoms also predominate, affecting behavior and cognition. We aimed to translate and do cross-cultural adaptation and validation of the Montreal Cognitive Assessment Tool (MoCA) into Hiligaynon (MoCA-Hil), the language spoken in Panay Island, to perform baseline cognitive screening of XDP patients. Methods: Forward translation to Hiligaynon was done by two translators, then back translation of a single version was adapted and approved by a committee. A pilot testing was done yielding the final translated version, which was then tested on 46 XDP patients. The test-retest reliability was measured for 11 patients. The XDP-MDSP (Movement Disorder Society of the Philippines) rating scale was used to assess disease severity. Results: The MoCA-Hil showed an acceptable test-retest reliability [intraclass correlation (ICC) 0.74] and internal consistency (Cronbach's alpha 0.86 at baseline, 0.81 at 12 weeks). The two subscales with low ICC at 0.09 and 0.21 were delayed recall and orientation, respectively. Conclusion: Translation, cultural adaptation and validation of the MoCA to Hiligaynon was successfully done. This tool may now be used in clinical practice and in research for Hiligaynon-speaking subjects.

SUBMITTER: Aliling NB

PROVIDER: S-EPMC6892978 | biostudies-literature | 2019

REPOSITORIES: biostudies-literature

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Translation, Cultural Adaptation, and Validation of the Hiligaynon Montreal Cognitive Assessment Tool (MoCA-Hil) Among Patients With X-Linked Dystonia Parkinsonism (XDP).

Aliling Nicole B NB Rivera Adovich S AS Jamora Roland Dominic G RDG

Frontiers in neurology 20191128

<b>Background:</b> X-linked dystonia parkinsonism (XDP) is a neurodegenerative disease endemic to Filipinos with maternal lineage from Panay Island, Philippines. Patients present with dystonia concurrent with or followed by parkinsonism. Non-motor symptoms also predominate, affecting behavior and cognition. We aimed to translate and do cross-cultural adaptation and validation of the Montreal Cognitive Assessment Tool (MoCA) into Hiligaynon (MoCA-Hil), the language spoken in Panay Island, to perf ...[more]

PMID: 31849816

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Project description:ImportanceAnecdotal evidence suggests that deep brain stimulation (DBS) of the internal globus pallidus (GPi) is effective in ameliorating dystonia in X-linked dystonia parkinsonism (XDP), a disease that is usually refractive to medical therapy.ObjectiveTo determine the efficacy of GPi-DBS in a cohort of patients with XDP in a prospective study and identify predictors of postoperative outcomes.Design, setting, and participantsThis observational prospective cohort study enrolled patients in February 2013 and was completed in December 2014. The patients were followed up for up to 46 months. Patients from the Philippines were treated in a single center in Lübeck, Germany and followed up in the Philippines. Sixteen men with XDP (mean [SD] age, 40.9 [7.3] years; disease duration, 1-6 years) from the Philippines with predominant dystonia were selected.ExposuresAll patients underwent bilateral GPi-DBS in Lübeck, Germany.Main outcomes and measuresClinical assessment included the motor parts of the Burke-Fahn-Marsden scale (BFMDRS-M) and the Unified Parkinson's Disease Rating Scale (UPDRS-III). T1-based basal ganglia volumetry was performed and correlated with postoperative outcomes.ResultsThe study participants included 16 Filipino men (mean age, 40.9 years). Masked video ratings revealed significant improvements of dystonia severity 1 week (-55%; range, -94% to 59%; P < .01) and 6 months (-59%; range, -100% to 22%; P < .001) after surgery. The UDPRS-III score also improved, albeit to a lesser extent (-19%; range, -54% to 95%; and -27%; range, -70% to 124%; respectively). Unmasked long-term follow-up confirmed the continued efficacy of GPi-DBS up to 46 months after surgery. Important secondary end points improved, including activities of daily living, pain severity, weight, and quality of life. Caudate atrophy was a predictor of a less beneficial outcome (r = 0.817, P = .004).Conclusions and relevanceInternal globus pallidus DBS had a positive association in XDP with predominant dystonia (the primary end point) and contributed to an improved quality of life (the secondary end point). The response to DBS occurred within 1 week. Given the inverse correlation of postoperative benefit and caudate atrophy, GPi-DBS should be considered early during the disease course. Close international collaboration, training, and funding from multiple sources enabled the sustainable follow-up of patients with XDP in the Philippines.

Dataset Information

Translation, Cultural Adaptation, and Validation of the Hiligaynon Montreal Cognitive Assessment Tool (MoCA-Hil) Among Patients With X-Linked Dystonia Parkinsonism (XDP).

Publications

Translation, Cultural Adaptation, and Validation of the Hiligaynon Montreal Cognitive Assessment Tool (MoCA-Hil) Among Patients With X-Linked Dystonia Parkinsonism (XDP).

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