METHODS: The HomeSat subscale of the Dutch SASC-19 questionnaire (11 items) underwent back-to-back translation to produce a Malay language version. Content validation was done by Family Medicine Specialists involved in community post-stroke care. Community social support services in the original questionnaire were substituted with equivalent local services to ensure contextual relevance. Internal consistency reliability was determined using Cronbach alpha. Exploratory factor analysis was done to validate the factor structure of the Malay version of the questionnaire (SASC10-My™). The SASC10-My™ was then tested on 175 post-stroke patients who were recruited at ten public primary care healthcentres across Peninsular Malaysia, in a trial-within a trial study.
RESULTS: One item from the original Dutch SASC19 (HomeSat) was dropped. Internal consistency for remaining 10 items was high (Cronbach alpha 0.830). Exploratory factor analysis showed the SASC10-My™ had 2 factors: discharge transition and social support services after discharge. The mean total score for SASC10-My™ was 10.74 (SD 7.33). Overall, only 18.2% were satisfied with outpatient stroke care services (SASC10-My™ score ≥ 20). Detailed analysis revealed only 10.9% of respondents were satisfied with discharge transition services, while only 40.9% were satisfied with support services after discharge.
CONCLUSIONS: The SASC10-My™ questionnaire is a reliable and valid tool to measure caregiver or patient satisfaction with outpatient stroke care services in the Malaysian healthcare setting. Studies linking discharge protocol patterns and satisfaction with outpatient stroke care services should be conducted to improve care delivery and longer-term outcomes.
TRIAL REGISTRATION: No.: ACTRN12616001322426 (Registration Date: 21st September 2016.
METHODS: This cross-sectional study was conducted from June 2021 until April 2022, and SLE patients were recruited to complete the SLEQoL, LupusQoL and Short Form Health Survey (SF-36) in Malay language. Disease activity were recorded using the modified SLE Disease Activity Index (M- SLEDAI) and British Isles Lupus Assessment Group 2004 (BILAG-2004) index. Presence of organ damage was determined using the SLICC Damage index. Cronbach's alpha was calculated to determine internal consistency while exploratory factor analysis was done to determine the construct validity. Concurrent validity was evaluated using correlation with SF-36. Multiple linear regression analysis was deployed to determine the factors affecting each domain of SLEQoL and LupusQoL.
RESULTS: A total of 125 subjects were recruited. The Cronbach's α value for the Malay-SLEQoL (M-SLEQoL) and Malay-LupusQOL (M-LupusQoL) was 0.890 and 0.944 respectively. Exploratory factor analysis found formation of similar number of components with the original version of questionnaires and all items have good factor loading of >0.4. Both instruments also had good concurrent validity with SF-36. M-SLEQoL had good correlations with BILAG-2004 and M-SLEDAI scores. Musculoskeletal (MSK) involvement was independently associated with lower M-SLEQoL in physical function, activity and symptom domains. Meanwhile, MSK and NPSLE were associated with fatigue in M-LupusQoL.
CONCLUSION: Both M-SLEQoL and M-LupusQoL are reliable and valid as disease -specific QoL instruments for Malaysian patients. The M-Lupus QoL has better discriminative validity compared to the M-SLEQoL. SLE patients with MSK involvement are at risk of poor QoL in multiple domains including physical function, activity, symptoms and fatigue.
METHOD: The process of scientific translation of this selfreport instrument followed the guidelines of the Task Force for Translation and Cultural Adaptation of the International Society for Pharmacoeconomics and Outcomes Research (ISPOR).
RESULTS: The Malay version and its adaptation for a new cultural context are described.
CONCLUSION: The Malay version achieved the aims of the original version and its conceptual and operational equivalence. It may be used as the first Malay instrument to measure anxiety among children in research and in clinical and community settings.