This qualitative study examines differences between perceptions of parents and pediatricians regarding the needs of children with autism spectrum disorders (ASDs) and their families within the medical home. Two separate focus groups of parents of children with ASDs and pediatricians were conducted. Parents and pediatricians identify unmet needs within medical homes of children with ASDs. Parents perceived that physicians did not act early upon their concerns about development, and that care is less comprehensive, coordinated and family-centered than desired. Pediatricians desire to improve services but cite lack of time, training and resources as barriers. Medical homes for children with ASDs would benefit from better pediatrician ASD education and medical systems that support extended visits, care coordination and interdisciplinary collaboration.
Parents of children with autism spectrum disorders (ASD) (n = 144) and primary care providers (PCPs) (n = 144) completed similar surveys assessing the ability of the PCP to address ASD-specific needs. Parents also rated their PCP's ability to deliver family-centered care. A majority of parents rated their PCP's ability as "not good" in addressing 14 of 17 ASD-specific needs, while a majority of PCPs rated themselves as "good" in addressing 10 of 17 areas. On 7 of 17 items, parents rated their PCPs lower than PCPs rated themselves. Parents who reported receiving family-centered care were more likely to rate the PCP's ability to meet ASD specific needs as "good". Both parents and PCPs identified areas for improvement in caring for children with ASD.
Frontotemporal dementia (FTD) has rarely been reported in Chinese populations. There are many potential reasons for this, including possible hesitancy on the part of patients or families to bring FTD-related symptoms to medical attention. Here, we present data on eight Chinese individuals, all of whom met criteria for the behavioral variant of FTD or the semantic variant of primary progressive aphasia. These patients presented for neurological evaluation at a relatively advanced stage. The mean MMSE score at initial presentation was 15. Behavioral symptoms were common and usually elicited during the medical history only after direct questioning. Delay in presentation was attributed to a variety of issues, including family disagreements about whether the symptoms represented a disease and lack of medical insurance. These cases illustrate that the symptoms of FTD in Chinese Americans are similar to those in Caucasians but various factors, some potentially culturally-relevant, may influence the likelihood and timing of clinical presentation for FTD, as well as other dementias. Additional study of FTD in diverse ethnic groups needs to address barriers to clinical presentation, including factors that may be culturally specific.
Alzheimer's disease (AD) shortens life-expectancy, but the effects of pharmacological treatments for this disorder on mortality have not been studied. We compared two commonly prescribed medications, donepezil and memantine, with respect to the length of survival of veterans presumed to have AD. The Computerized Medical Records System at the Veterans Affairs Palo Alto Health Care System (VAPAHCS) was used to identify all patients prescribed these medications between 1997 and 2008. The VAPAHCS approved donepezil in 1997 and memantine in 2004. Kaplan-Meier and Cox regression analyses were used to test for chronological and drug-related associations with survival in 2,083 male veterans aged 55 years and older receiving prescriptions for donepezil, memantine, or both. Overall patient mortality decreased in the 2004 to 2008 era, compared with the 1997 to 2003 era, pre-memantine (HR: 0.75; 95% CI: 0.63, 0.89; p = 0.001). In analyses confined to the 2004 to 2008 era, patients prescribed memantine alone survived significantly longer than those prescribed donepezil alone (HR: 2.24; 95% CI: 1.53, 3.28; p < 0.001) or both donepezil and memantine (HR: 1.83; 95% CI: 1.14, 2.94; p = 0.012). While this study has several limitations, these findings suggest that memantine treatment is associated with an increased life-expectancy relative to donepezil treatment. Additional research is needed to replicate these unexpected findings and identify potential mechanisms to explain this apparent association, to establish if the relationship applies to other cholinesterase inhibitors, and to discover whether the findings generalize to women and patient populations with characteristics different from those of the veterans in this study.
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