Qian, Emily and Thong, Meow Keong and Flodman, Pamela and Gargus, Jay (2019) A comparative study of patients’ perceptions of genetic and genomic medicine services in California and Malaysia. Journal of Community Genetics, 10 (3). pp. 351-361. ISSN 1868-310X, DOI https://doi.org/10.1007/s12687-018-0399-8.
Full text not available from this repository.Abstract
In the era of personalized and genomic medicine, awareness of patients with rare diseases is increasing as new approaches to diagnosis and treatment are developed. This study examined perceived barriers experienced by families with rare diseases and explored possible differences between participants in Malaysia and California, USA. The study involved N = 108 participants recruited in genetics clinic appointments at the University of Malaya Medical Center and three sites in Southern California. Participants completed a survey involving multiple choice and Likert scale items pertaining to perceived barriers to access genetics-related healthcare. Results from this study provide evidence of similar perceived barriers, despite differences in the two populations. Participants selected the expansion of healthcare provider knowledge of rare diseases to be the most beneficial approach to overcome perceived barriers. In both locations, it was also noted that travel distance to clinic was not perceived as a large stress factor. Taking these observations together, a healthcare model with a central location of providers well-versed in medical genetics may be considered if further data support our findings. The data from this study support a need for improving healthcare provider knowledge of genetics. Future studies exploring how these perceived stress factors are impacting families as well as different methods of educating providers are suggested by findings from the study, as well as studies querying the opinions of those who are unable to access genetics services. © 2018, Springer-Verlag GmbH Germany, part of Springer Nature.
| Item Type: | Article |
|---|---|
| Funders: | UNSPECIFIED |
| Uncontrolled Keywords: | Genetic counseling; Genetics services; Malaysia; Provider knowledge; Rare disease; Southeast Asia |
| Subjects: | R Medicine |
| Divisions: | Faculty of Medicine |
| Depositing User: | Ms. Juhaida Abd Rahim |
| Date Deposited: | 11 Feb 2020 01:10 |
| Last Modified: | 11 Feb 2020 01:10 |
| URI: | http://eprints.um.edu.my/id/eprint/23725 |
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