Let Their Voices Be Seen.

STUDY OBJECTIVE: The mutual distrust, in part caused by misunderstanding and bias, between sickle cell disease (SCD) patients and their emergency department (ED) providers has been widely documented in the SCD literature. This study seeks to illustrate the perceptions and experiences of adult sickle cell patients who have had at least 1 ED experience in the last 2 years. METHODS: Qsource, a nonprofit health care consultancy based in Tennessee, used photovoice, a qualitative research method, to facilitate the representation of patients' experiences in living with SCD. Photovoice has participants document their experiences through photography and then, as a group, discuss and analyze the emotional state behind the photographs. Eight participants with SCD took 25 photographs during 4 weeks. Then, in a 2-hour critical dialogue, participants identified recurring themes through consensus. RESULTS: Participants identified 6 themes that emerged from their discussion: unpredictability of SCD, fickleness of time, coping with pain, proximity to death, avoidance of the ED, and need for improved communication. They expressed their wish to be active participants in their care, and many described a fear of death, which is exacerbated by a lack of control in the ED setting. CONCLUSION: Factors such as poor patient experience and misunderstanding may contribute to delays in seeking care for SCD patients. This may, in turn, escalate pain crises and increase the likelihood of hospital admission. We believe that photovoice may be a new means to educate ED providers on SCD patient perceptions, ultimately resulting in better ED care.

The hard Test Your Memory. Evaluation of a short cognitive test to detect mild Alzheimer's disease and amnestic mild cognitive impairment.

OBJECTIVE: The aim of this study is the evaluation of a novel cognitive test, the hard Test Your Memory (H-TYM), in the detection of mild Alzheimer's disease (AD) and amnestic mild cognitive impairment (aMCI). METHODS: This paper uses a prospective study in an outpatient memory clinic. We recruited 97 patients with a diagnosis of mild AD or aMCI aged between 50 and 80 years. All scored 20 or more on the mini mental state examination (MMSE). We recruited 200 controls from a similar background. The patients were given a novel short cognitive test (H-TYM) designed to test recall of newly learnt visual and verbal material together with the Addenbrooke's Cognitive Assessment Revised, MMSE, and TYM test. RESULTS: Alzheimer's disease/aMCI patients completed the H-TYM with an average recall score of 6.69 (SD 3.45); control participants scored an average of 20.4 (SD 4.54). The H-TYM detected 95% of cases of mild AD/aMCI on the basis of an optimum cutoff point. The area under the receiver operating characteristic for the H-TYM ratio was calculated to be 0.989 with a 95% confidence interval of 0.980-0.997. CONCLUSIONS: The H-TYM test has an excellent ability to discriminate between AD/aMCI cases and healthy controls. The H-TYM is a useful tool for the detection of mild AD/aMCI, and it detects AD/aMCI in the majority of patients who "pass" the MMSE and Addenbrooke's Cognitive Assessment Revised.