Tesis

Validation in Indonesian Cultural Adaptation of LYMPH-Q Upper Extremity Module = Validasi dan Adaptasi Budaya Indonesia dari Modul Ekstremitas Atas LYMPH-Q.

Background: The LYMPH-Q Upper Extremity module, developed by the Q-Portfolio team at McMaster University, Canada, is a widely utilized patient-reported outcome measure (PROM) questionnaire to identify health-related quality of life in patients with breast cancer-related lymphedema (BCRL). To date, however, no institution has undertaken its validation and reliability testing in the Indonesian culture and language. Methods: Translation was performed in accordance with the International Society for Pharmacoeconomics and Outcomes Research best practice guidelines. To validate the Indonesian LYMPH-Q, this single-center study was conducted. Internal consistency was determined using Cronbach’s a. The test-retest reliability was measured using the intraclass correlation coefficient. Arm function in daily activity was assessed by comparing the mean Rasch equivalent scores stratified by the severity stages of lymphedema. Result: Validation was performed using a cohort of 30 patients, with the majority were in the state of irreversible stage of International Society of Lymphedema (ISL) stage 2 early (2A) and 2 Late. The internal consistency of all domains was acceptable to excellent ( a, 0.72-0.99). The intraclass correlation coefficient ranged from 0.84 to 0.99. Decreased arm function (91.30±12.49 vs 41.36±31.76; p=0.001) were observed between ISL stage 2A and stage 2 late, respectively (MD=49.9, 95% CI [19.61, 80.26], p=0.002). This study highlights Indonesian respondents’ perspectives on the translated LYMPH-Q, reflecting the influence of religious beliefs and cultural characteristics specific to Indonesia. Conclusion: The Indonesian LYMPH-Q Upper Extremity Module was conceptually equivalent to the English original and exhibited strong reliability and validity as a PROM tool, with robust findings across diverse cultural and religious settings in Indonesian BCRL patients.
Keywords: breast cancer-related lymphedema, LYMPH-Q, patient-reported outcome measure, translation, validation, arm sleeve


Pendahuluan: LYMPH-Q Upper Extremity Module yang dikembangkan oleh tim Q-Portfolio di McMaster University, Kanada, merupakan kuesioner patient-reported outcome measure (PROM) yang banyak digunakan untuk menilai kualitas hidup terkait kesehatan pada pasien dengan limfedema akibat kanker payudara (breast cancer-related lymphedema / BCRL). Namun hingga saat ini, belum ada institusi yang melakukan uji validitas dan reliabilitas instrumen ini dalam konteks budaya dan bahasa Indonesia. Metode: Proses penerjemahan dilakukan sesuai dengan pedoman praktik terbaik dari International Society for Pharmacoeconomics and Outcomes Research. Studi validasi ini dilaksanakan di satu pusat penelitian untuk menilai sifat psikometrik versi Bahasa Indonesia dari LYMPH-Q. Konsistensi internal dievaluasi menggunakan nilai Cronbach’s α, sedangkan reliabilitas test–retest diukur dengan intraclass correlation coefficient (ICC). Fungsi lengan dalam aktivitas sehari-hari dinilai dengan membandingkan rerata skor ekuivalen Rasch yang dikelompokkan berdasarkan tingkat keparahan limfedema. Hasil: Validasi dilakukan terhadap 30 pasien, dengan sebagian besar berada pada stadium tidak reversibel, yaitu International Society of Lymphology (ISL) stadium 2 awal (2A) dan stadium 2 lanjut (2B). Konsistensi internal seluruh domain tergolong baik hingga sangat baik (α = 0,72– 0,99). Reliabilitas test–retest juga kuat dengan nilai ICC antara 0,84 hingga 0,99. Penurunan fungsi lengan yang signifikan ditemukan antara stadium ISL 2A dan 2B (91,30 ± 12,49 vs. 41,36 ± 31,76; p = 0,001; selisih rerata = 49,9; 95% CI [19,61, 80,26]; p = 0,002). Temuan ini juga menyoroti pandangan responden Indonesia terhadap versi terjemahan LYMPH-Q, yang mencerminkan pengaruh kepercayaan religius dan karakteristik budaya khas Indonesia. Kesimpulan: Versi Bahasa Indonesia dari LYMPH-Q Upper Extremity Module terbukti secara konseptual ekuivalen dengan versi asli berbahasa Inggris dan menunjukkan reliabilitas serta validitas yang sangat baik sebagai alat ukur PROM. Hasil penelitian ini konsisten di berbagai konteks budaya dan religius pada pasien BCRL di Indonesia.
Kata kunci: limfedema akibat kanker payudara, LYMPH-Q, patient-reported outcome measure, terjemahan, validasi, manset lengan