RESUMEN
PURPOSE: Quality of life concerns in patients with advanced diseases might be different from other patients and are shaped by sociocultural context. The objective of this qualitative study was to identify domains and themes of health-related quality of life (HRQoL) that Chinese patients with advanced cancer in Singapore considered relevant and important. METHODS: English- and Chinese-speaking patients with advanced solid cancer were recruited from a tertiary cancer center and a community-based hospice for in-depth interview or focused group discussion. Thematic analysis was used to identify subthemes, themes, and domains from the transcripts. RESULTS: Forty-six ethnic Chinese (aged 26-86, 48% male) participated in the study. Six domains of HRQoL concerns were identified: pain and suffering, physical health, social health, mental health, financial well-being, and spiritual health. Pain and suffering are not limited to the physical domain, reflecting the multidimensional nature of this concept. Pain and suffering must also be understood within the cultural context. Healthcare relations (i.e., social health), existential well-being and religious well-being (i.e., spiritual health), and suffering (i.e., pain and suffering) are not fully captured in the existing HRQoL instruments. In addition, financial issues and the practice of secrecy in interpersonal relationships emerged as unique features possibly arising from our sociocultural context and healthcare financing landscape. CONCLUSION: Socioculturally specific issues not measured by the existing HRQoL instruments for use in patients with advanced cancers or terminal diseases were found in our study. These are non-physical pain and suffering, meaning of illness, meaning of death, financial issues, and practice of secrecy in interpersonal relationships.
Asunto(s)
Neoplasias/psicología , Calidad de Vida/psicología , Adulto , Anciano , China , Etnicidad , Femenino , Cuidados Paliativos al Final de la Vida , Humanos , Masculino , Persona de Mediana Edad , Investigación Cualitativa , SingapurRESUMEN
OBJECTIVES: SLE patients require varying levels of health services since disease severity and activity differ among individuals. Understanding the factors associated with health service utilisation would be useful in improving equitable access. It would also help to identify modifiable factors and current good practices so as to improve quality of care and thus reduce utilisation. Thus, the objective of this review is to identify factors associated with health services utilisation. METHODS: Five electronic databases (PubMed, PsycINFO, EMBASE, International Pharmaceutical Abstract, Web of Science) and bibliographies of short-listed articles were searched. All indicators of health service utilisation (physician and specialist visits, hospitalisations, direct costs) and alternative medicine utilisation were accepted as outcomes in primary studies. Two authors independently selected the studies based on pre-specified inclusion and exclusion criteria. RESULTS: Of 1,276 papers retrieved from electronic and hand searches, 25 were finally selected and reviewed in totality, of which 13 were cross-sectional, 5 were prospective, and 7 were retrospective studies. A variety of service types (e.g. outpatient visits, hospitalisations, etc.) and factors (e.g. demographic, socioeconomic, laboratory indices, etc.) were evaluated. Type of health insurance, poorer physical functioning and greater disease severity were found to be associated with higher utilisation across several studies. CONCLUSION: Modifying the choice or coverage of health insurance plans of SLE patients is a possible option in improving equitable access. Better management of patient reported outcomes such as physical functioning and timely management of SLE to reduce disease severity may reduce health services utilisation in the long term.