2 research outputs found
Feasibility of using emergency department patient experience surveys as a proxy for equity of care
Collecting and examining equity data can help inform quality improvement initiatives but is a relatively new practice in health care. The overall goal of this study was to assess different methods of administering patient experience surveys as a feasible starting point in measuring equity in an urban Emergency Department (ED) that serves a diverse patient population. Socio-demographic characteristics of patients visiting an ED were compared with those of patients who responded to provincial patient experience surveys routinely administered by mail. Patient experience survey data were collected over an 11-week period in an urban ED using different survey administration methods (face-to-face interviews vs. handout) among study participants from vulnerable populations (elderly, low income, homeless, and mental health or substance use issues). Patient populations receiving care in the ED were shown to be different from those who responded to routinely mailed patient experience surveys with elderly patients over-represented, and contrarily, low income, mental health or substance use and homeless/unstable housing populations under-represented in survey responses. From a total of 111 study participants, the response rate for face-to-face surveys was significantly higher than for surveys that were handed out (p = 0.002), but no significant difference in the percentage of positive responses was evident. Delivering patient experience surveys immediately upon discharge is an effective way of capturing unique responses from patients in vulnerable populations, supporting a valuable means of assessing equity in the ED. Survey administration method poses important implications when used to inform quality improvement efforts and performance measurement
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Isolated- and Beckwith-Wiedemann syndrome related- lateralised overgrowth (hemihypertrophy): Clinical and molecular correlations in 94 individuals.
The congenital imprinting disorder, Beckwith-Wiedemann syndrome (BWS) is associated with variable clinical features including hemihypertrophy/lateralised overgrowth (LO) and embryonal tumour predisposition. BWS-associated (epi)genetic alterations occur in a subset of patients with isolated LO (ILO), leading to the concept of BWS spectrum disorder (BWSp). We investigated the relationship between clinical features and molecular diagnostic results in a cohort with LO using the BWSp international consensus group (BWSICG) clinical scoring system. Clinical/molecular findings in 94 previously-unreported patients with LO referred for BWSp molecular studies were reviewed retrospectively. The BWSICG score was assigned and diagnostic rate calculated. BWSp-associated (epi)genetic alteration was identified in 15/94 (16%). The molecular diagnostic rate by MS-MLPA (blood DNA) for BWS-related molecular findings in patients with LO was positively correlated with the BWSICG score. 3/48 with ILO had a molecular alteration. No individuals with ILO had developed an embryonal tumour at last follow up. Among a cohort of individuals with LO referred for BWSp molecular testing, the BWSICG score correlated with diagnostic yield. The embryonal tumour risk in children with ILO and negative molecular testing appeared very low, however longer- and more complete follow up is required to better define tumour risks in this group