An evaluation of the ALSSQOL-SF in the Malaysian context through cognitive interviewing

Quality of life is an important goal of care for people living with amyotrophic lateral sclerosis (ALS) and their carers. The ALS Specific Quality of Life instrument Short Form (ALSSQOL-SF) has been translated and validated in various cultural contexts, however its utility in the Malaysian cultural context has not yet been evaluated. The quality of life of 21 patients with ALS was evaluated using the ALSSOL-SF in either the English version or translated to the Malay language. A cognitive interview approach was utilized and the responses were transcribed and thematically analyzed. Culture and language-related factors affecting the application of the ALSSQOL-SF were identified. Interpretations of intimacy and religiosity varied and sometimes differed significantly from the constructs underlying the ALSSQOL-SF domains. The ALSSQOL-SF captured items from the physical domain better than those from the psycho-social and spiritual domains. Cognitive interviewing showed that patients mostly could not grasp the intended meaning of the items from the psycho-social and spiritual domains despite translation into the Malay language. There are limitations in adapting the ALSSQOL-SF for use in evaluation of QOL in Malaysian ALS patients. In the local setting a better understanding is needed about how aspects such as religion, intimacy and spiritual well-being are culturally reflected and expressed. Quality of life is especially important to people living with ALS. It includes feeling well physically, psychologically and spiritually terms but this may be difficult to measure in numbers. Patients may experience their disease differently and find different things most important, for example family, work, finances, symptoms and others. The ALSSQOL-SF is a questionnaire designed to measure these problems and it has been shown to be well understood and useful in Northern America. In Malaysia like in many other countries however, people may have different cultural backgrounds which affect how they think about quality of life. This study interviewed patients while they completed the original ALSSQOL-SF and a newly translated Malay version. It showed that the understanding of intimacy, feeling close to others, could be understood in different ways and also that religiosity may not seem a relevant issue to patients from backgrounds other than Christianity or Islam. Depending on the cultural background the ALSSQOL-SF in its original form could be used for some Malaysian patients. For patients who do not consider themselves religious it may be more appropriate to replace the issue of religiosity with spirituality. This may include seeing or finding meaning in life and feeling at peace.