United States Acculturation and Cancer Patients' End-of-Life Care

Background: Culture shapes how people understand illness and death, but few studies examine whether acculturation influences patients' end-of-life treatment preferences and medical care. Methods and Findings: In this multi-site, prospective, longitudinal cohort study of terminally-ill cancer patients and their caregivers (n = 171 dyads), trained interviewers administered the United States Acculturation Scale (USAS). The USAS is a 19-item scale developed to assess the degree of "Americanization" in first generation or non-US born caregivers of terminally-ill cancer patients. We evaluated the internal consistency, concurrent, criterion, and content validity of the USAS. We also examined whether caregivers' USAS scores predicted patients' communication, treatment preferences, and end-of-life medical care in multivariable models that corrected for significant confounding influences (e.g. education, country of origin, English proficiency). The USAS measure was internally consistent (Cronbach α = 0.98); and significantly associated with US birthplace (r = 0.66, P<0.0001). USAS scores were predictive of patients' preferences for prognostic information (AOR = 1.31, 95% CI:1.00-1.72), but not comfort asking physicians' questions about care (AOR 1.23, 95% CI:0.87-1.73). They predicted patients' preferences for feeding tubes (AOR = 0.68, 95% CI:0.49-0.99) and wish to avoid dying in an intensive care unit (AOR = 1.36, 95% CI:1.05-1.76). Scores indicating greater acculturation were also associated with increased odds of patient participation in clinical trials (AOR = 2.20, 95% CI:1.28-3.78), compared with lower USAS scores, and greater odds of patients receiving chemotherapy (AOR = 1.59, 95% CI:1.20-2.12). Conclusion: The USAS is a reliable and valid measure of "Americanization" associated with advanced cancer patients' end-of-life preferences and care. USAS scores indicating greater caregiver acculturation were associated with increased odds of patient participation in cancer treatment (chemotherapy, clinical trials) compared with lower scores. Future studies should examine the effects of acculturation on end-of-life care to identify patient and provider factors that explain these effects and targets for future interventions to improve care (e.g., by designing more culturally-competent health education materials). © 2013 Wright et al

An IL1RL1 genetic variant lowers soluble ST2 levels and the risk effects of APOE-ε4 in female patients with Alzheimer’s disease

Changes in the levels of circulating proteins are associated with Alzheimer’s disease (AD), whereas their pathogenic roles in AD are unclear. Here, we identified soluble ST2 (sST2), a decoy receptor of interleukin-33–ST2 signaling, as a new disease-causing factor in AD. Increased circulating sST2 level is associated with more severe pathological changes in female individuals with AD. Genome-wide association analysis and CRISPR–Cas9 genome editing identified rs1921622, a genetic variant in an enhancer element of IL1RL1, which downregulates gene and protein levels of sST2. Mendelian randomization analysis using genetic variants, including rs1921622, demonstrated that decreased sST2 levels lower AD risk and related endophenotypes in females carrying the Apolipoprotein E (APOE)-ε4 genotype; the association is stronger in Chinese than in European-descent populations. Human and mouse transcriptome and immunohistochemical studies showed that rs1921622/sST2 regulates amyloid-beta (Aβ) pathology through the modulation of microglial activation and Aβ clearance. These findings demonstrate how sST2 level is modulated by a genetic variation and plays a disease-causing role in females with AD

Relatives in end-of-life care – part 1: a systematic review of the literature the five last years, January 1999–February 2004

Aim. To review systematically research conducted during the past five years focusing on the relatives’ situation and needs in end‐of‐life care. Background and aim. That relatives make a large contribution in the care of the dying is well‐known. In this situation, relatives often have to solve many new practical problems in the care as well as dealing with the sorrow of both themselves and the dying person. In recent years, palliative care has been developed in many countries and many new studies have been carried out. Methods. A systematic search of the literature was performed in the CINAHL and Medline databases. Of the 94 papers analysed, there were 59 qualitative and 35 quantitative studies with differing designs. The studies were carried out in 11 countries and were published in 34 different journals. Results. The results were categorized in two main themes with several subthemes: (1) being a close relative – the situation: (i) exposed position – new responsibility, (ii) balance between burden and capacity and (iii) positive values; (2) being a close relative – needs: (i) good patient care, (ii) being present, (iii) knowing and communicating and (iv) support from and trusting relationship with the professional. The relative's feelings of security and trust in the professional were found to be of great importance. Conclusion. More than twice as many studies had a descriptive/explorative design, which is of importance in the assessment of evidence. However, different studies complement one another and in summary, it can be said that analytic evidence is unequivocal: good patient care, communication, information and the attitude of the professional are of decisive importance regarding relatives' situation. These results are also in accord with earlier review studies. Relevance to clinical practice. Staff members have a great deal of responsibility for assuring that the patient feels as good as possible, facilitating relatives’ involvement based on the family's wishes and limiting the stress and difficulties experienced by the family. The results showed that the relative's satisfaction could depend on the attitude of the professional as well as on good communication, good listening and good information. This can also be viewed as a prerequisite for the professional to get to know the family and to provide ‘care in the light’