Use of the Assessment of Caregiver Experience with Neuromuscular Disease (ACEND) in Spinal Muscular Atrophy.

Background: Spinal muscular atrophy (SMA) has a remarkable impact on function and participation. Subsequently, the caregivers of individuals with SMA are impacted as well. Providers and the SMA community should be aware of the presence of and likely expectations for the existence of caregiver burden. Methods: The Assessment of Caregiver Experience with Neuromuscular Disease (ACEND) quantifies caregivers' perceptions of function and quality of life pertaining to time, finance and emotion. Analyses were conducted among SMA types and ambulatory and ventilatory status. Participants with SMA had varying ranges of function and were on pharmaceutical treatment. Total ACEND score, longitudinal change in total ACEND score, total quality of life (QOL) score, change in total QOL score and subdomains for QOL, including time, emotion and finance, were all explored. Results: Overall, the ACEND demonstrated discriminant validity and some observed trends. Total ACEND scores improved for caregivers of those with SMA 2, remained stable longitudinally for caregivers of those with SMA 1 and 3 and were not influenced by ventilation status. The caregivers of individuals with SMA 1 had the lowest total quality of life (QOL) score, as did the caregivers of non-ambulatory individuals and those requiring assisted ventilation. Longitudinally, there were no changes in total QOL between caregivers of individuals with different SMA types or ambulatory or ventilation status. There were some differences in emotional needs, but no differences in financial impact between the caregivers of individuals with different types of SMA or ambulatory and ventilatory status. Conclusions: With this information enlightening the presence of caregiver burden and expected changes in burden with pharmaceutical treatment, providers, third party payors and the SMA community at large can better assist, equip and empower those providing the necessary assistance to enable the lives of those with SMA.

Surgical versus nonsurgical treatment selection patterns among Asian American patients with pelvic floor disorders: a matched cohort study.

INTRODUCTION AND HYPOTHESIS: The objective was to determine if Asian racial identity was associated with the selection of surgical versus nonsurgical treatments for pelvic floor disorders (PFDs). Secondarily, we aimed to determine if there were other demographic or clinical characteristics associated with treatment selection patterns. METHODS: This was a retrospective matched cohort study that examined new patient visits (NPVs) of Asian patients at an academic urogynecology practice in Chicago, IL, USA. We included NPVs with primary diagnoses of anal incontinence, mixed urinary incontinence, stress urinary incontinence, overactive bladder, or pelvic organ prolapse. We identified Asian patients with self-identified racial identity recorded in the electronic medical records. Every Asian patient was age matched to white patients in a 1:3 ratio. The primary outcome was surgical versus nonsurgical treatment selection for their primary PFD diagnosis. Comparison of demographic and clinical variables between the two groups and multivariate logistic regression models were performed. RESULTS: A total of 53 Asian patients and 159 white patients were included in this analysis. Asian patients were less likely to be English speaking (92% vs 100%, p=0.004), endorse history of anxiety (17% vs 43%, p<0.001), and report history of any pelvic surgery (15% vs 34%, p=0.009) than white patients. When controlling for race, age, history of anxiety, depression, prior pelvic surgery, sexual activity, Pelvic Organ Prolapse Distress Inventory, Colorectal-Anal Distress Inventory, and Urinary Distress Inventory scores, Asian racial identity (adjusted odds ratio 0.36 [95% CI 0.14-0.85]) was independently associated with decreased likelihood of choosing surgical treatments for PFDs. CONCLUSIONS: Asian patients with PFDs were less likely than white patients to undergo surgical treatment for their PFDs despite similar demographic and clinical characteristics.

Exploratory mixed methods study on care-seeking behaviors of Asian Americans with pelvic floor symptoms.

INTRODUCTION AND HYPOTHESIS: The objective was to evaluate whether younger age was associated with noncare-seeking behavior among Asian Americans with pelvic floor symptoms, and secondarily, to explore multilevel factors that may contribute to noncare-seeking behavior in this population. METHODS: We performed a concurrent mixed methods study and heterogeneously sampled Asian Americans with urinary incontinence, urgency-frequency, vaginal bulge, or anal incontinence. We stratified the participants into two groups, care seekers vs noncare seekers. Using Anderson's model as the main framework, we administered validated questionnaires and conducted semi-structured interviews to explore factors associated with care-seeking behaviors. RESULTS: Seventy-eight surveys and 20 interviews were completed and analyzed. Most participants reported urinary leakage (67%), followed by urinary urgency-frequency (50%), anal incontinence (18%), and vaginal bulge (17%). The mean age of the study cohort was 46.1 ± 16.2 years. We found noncare seekers to be younger and with an increased proportion of lifetime spent in the USA than care seekers. When controlling for age, proportion of lifetime spent in the USA, symptom severity, and individual-level resources, both younger age and increased proportion of lifetime spent in USA remained independently associated with noncare-seeking behavior. From qualitative data, we found that noncare seekers often experienced anti-Asian racism across workplace, neighborhoods, and health care settings. Additionally, noncare seekers also reported symptom minimization and decreased self-efficacy when coping with their pelvic floor symptoms. CONCLUSIONS: We found that one's age and proportion of lifetime spent in the USA may affect the extent of exposure to anti-Asian racism that is associated with symptom minimization, increased perceived barrier, and noncare-seeking behavior.

Microscopy illumination engineering using a low-cost liquid crystal display.

Illumination engineering is critical for obtaining high-resolution, high-quality images in microscope settings. In a typical microscope, the condenser lens provides sample illumination that is uniform and free from glare. The associated condenser diaphragm can be manually adjusted to obtain the optimal illumination numerical aperture. In this paper, we report a programmable condenser lens for active illumination control. In our prototype setup, we used a $15 liquid crystal display as a transparent spatial light modulator and placed it at the back focal plane of the condenser lens. By setting different binary patterns on the display, we can actively control the illumination and the spatial coherence of the microscope platform. We demonstrated the use of such a simple scheme for multimodal imaging, including bright-field microscopy, darkfield microscopy, phase-contrast microscopy, polarization microscopy, 3D tomographic imaging, and super-resolution Fourier ptychographic imaging. The reported illumination engineering scheme is cost-effective and compatible with most existing platforms. It enables a turnkey solution with high flexibility for researchers in various communities. From the engineering point-of-view, the reported illumination scheme may also provide new insights for the development of multimodal microscopy and Fourier ptychographic imaging.