Development of a descriptive system for patient experience

This thesis was submitted for the award of Doctor of Philosophy and was awarded by Brunel University LondonEfficient allocation of public resources requires identification, measurement and quantification of costs and benefits of alternative programs. Patient reported outcomes (PROs) are routinely incorporated into economic evaluations of health technologies, but patient experience is often overlooked. This thesis aims to develop a descriptive system for patient experience that can be valued and used to inform economic evaluation. The generation and selection of items is key in the development of any PRO measure. The thesis provides a contemporary overview of recommended methods and those actually used by instrument developers. Frequently a staged approach is used to establish dimensions first, using exploratory factor analysis, followed by item selection using item response theory (IRT), Rasch or structural equation modelling (SEM). I demonstrate the use of different methods for item selection and its underlying mechanics, followed by comparison of the methods. An existing patient dataset, the Inpatient survey (2014) that collected information on nearly 70 aspects of healthcare delivery from NHS users was used. Logistic regression analyses were applied with respondents’ rating of overall patient experience specified as dependent variable. Advanced statistical analyses focussed mostly on patients who had an operation or procedure. Latent construct or dimensions were derived and measurement model was confirmed using confirmatory factor analysis. IRT and factor analysis were employed in each one-factor model for item selection. Regression analyses identified many significant variables but most overlapped conceptually. An 11 and 8 factor model for patients with A&E and planned admissions respectively was determined. A generalised partial credit model and a factor analysis model identified different items to include in each dimension. Broadly the items identified by different methods related to respect, comfort and clear communication to patients. This thesis presents descriptive systems for patient experience that is amenable to valuation. It also demonstrates that different patient experience instruments are generated based on patient population used and item selection technique adopted

Exploring what lies behind public preferences for avoiding health losses caused by lapses in healthcare safety and patient lifestyle choices

© 2013 Singh et al.; licensee BioMed Central Ltd. This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/2.0),which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited.This article has been made available through the Brunel Open Access Publishing Fund.Background: Although many studies have identified public preferences for prioritising health care interventions based on characteristics of recipient or care, very few of them have examined the reasons for the stated preferences. We conducted an on-line person trade-off (PTO) study (N=1030) to investigate whether the public attach a premium to the avoidance of ill health associated with alternative types of responsibilities: lapses in healthcare safety, those caused by individual action or lifestyle choice; or genetic conditions. We found that the public gave higher priority to prevention of harm in a hospital setting such as preventing hospital associated infections than genetic disorder but drug administration errors were valued similar to genetic disorders. Prevention of staff injuries, lifestyle diseases and sports injuries, were given lower priority. In this paper we aim to understand the reasoning behind the responses by analysing comments provided by respondents to the PTO questions. Method: A majority of the respondents who participated in the survey provided brief comments explaining preferences in free text responses following PTO questions. This qualitative data was transformed into explicit codes conveying similar meanings. An overall coding framework was developed and a reliability test was carried out. Recurrent patterns were identified in each preference group. Comments which challenged the assumptions of hypothetical scenarios were also investigated. Results: NHS causation of illness and a duty of care were the most cited reasons to prioritise lapses in healthcare safety. Personal responsibility dominated responses for lifestyle related contexts, and many respondents mentioned that health loss was the result of the individual’s choice to engage in risky behaviour. A small proportion of responses questioned the assumptions underlying the PTO questions. However excluding these from the main analysis did not affect the conclusions. Conclusion: Although some responses indicated misunderstanding or rejection of assumptions we put forward, the results were still robust. The reasons put forward for responses differed between comparisons but responsibility was the most frequently cited. Most preference elicitation studies only focus on eliciting numerical valuations but allowing for qualitative data can augment understanding of preferences as well as verifying results.EPSRC through the MATCH programme(EP/F063822/1 and EP/G012393/1) and HERG within Brunel University

Ethnic Speech and Ethnic Action as Ethnic Behavior: Part 1. Construction of the Brunel Ethnic Behavior Inventory

© 2016 Taylor & Francis.This article reports the construction of a new survey—specifically, the Brunel Ethnic Behavior Inventory (BEBI)—designed to measure ethnic speech and ethnic action as separate, yet related, aspects of individuals’ ethnic behavior. Using Tajfel’s social identity theory as a conceptual frame of reference, this study sought an answer to the research question of how many factors actually are measured by the BEBI, and tested the hypothesis that a two-factor model (i.e., Ethnic Speech and Ethnic Action as two correlated factors) would provide significantly better goodness of fit to the correlational data than would a one-factor model (i.e., Ethnic Behavior as one undifferentiated factor). Across one pilot sample (n = 101) and two main samples (n = 120 for Sample 1, n = 148 for Sample 2), the study found that not only did the BEBI measure two factors at most (i.e., Ethnic Speech and Ethnic Action) but, consistent with the hypothesis, the two-factor model yielded better goodness of fit than did the one-factor model. Implications for the conceptualization and measurement of Verkuyten’s “ways of ethnicity” are discussed

Amaze: a randomized controlled trial of adjunct surgery for atrial fibrillation

OBJECTIVES: Atrial fibrillation (AF) reduces survival and quality of life (QoL). It can be treated at the time of major cardiac surgery using ablation procedures ranging from simple pulmonary vein isolation to a full maze procedure. The aim of this study is to evaluate the impact of adjunct AF surgery as currently performed on sinus rhythm (SR) restoration, survival, QoL and costeffectiveness. METHODS: In a multicentre, Phase III, pragmatic, double-blinded, parallel-armed randomized controlled trial, 352 cardiac surgery patients with >3 months of documented AF were randomized to surgery with or without adjunct maze or similar AF ablation between 2009 and 2014. Primary outcomes were SR restoration at 1 year and quality-adjusted life years at 2 years. Secondary outcomes included SR at 2 years, overall and stroke-free survival, medication, QoL, cost-effectiveness and safety. RESULTS: More ablation patients were in SR at 1 year [odds ratio (OR) 2.06, 95% confidence interval (CI) 1.20–3.54; P = 0.009]. At 2 years, the OR increased to 3.24 (95% CI 1.76–5.96). Quality-adjusted life years were similar at 2 years (ablation - control -0.025, P = 0.6319). Significantly fewer ablation patients were anticoagulated from 6 months postoperatively. Stroke rates were 5.7% (ablation) and 9.1% (control) (P = 0.3083). There was no significant difference in stroke-free survival [hazard ratio (HR) = 0.99, 95% CI 0.64–1.53; P = 0.949] nor in serious adverse events, operative or overall survival, cardioversion, pacemaker implantation, New York Heart Association, EQ-5D-3L and SF-36. The mean additional ablation cost per patient was £3533 (95% CI £1321–£5746). Cost-effectiveness was not demonstrated at 2 years. CONCLUSIONS: Adjunct AF surgery is safe and increases SR restoration and costs but not survival or QoL up to 2 years. A continued follow-up will provide information on these outcomes in the longer term

Mini-Stern Trial: A randomised trial comparing mini-sternotomy to full median sternotomy for aortic valve replacement

Objective Aortic valve replacement (AVR) can be performed either through full median sternotomy (FS) or upper mini-sternotomy (MS). The Mini-Stern trial aimed to establish whether MS leads to quicker postoperative recovery and shorter hospital stay after first-time isolated AVR. Methods This pragmatic, open-label, parallel RCT compared MS with FS for first-time isolated AVR in two UK NHS hospitals. Primary endpoints were duration of postoperative hospital stay and the time to fitness for discharge from hospital after AVR, analysed in the intent-to-treat population. Results In this RCT, 222 patients were recruited and randomised (118 MS, 104 FS). Compared to FS patients, MS patients had longer hospital stay (mean 9.5 vs. 8.6 days) and took longer to achieve fitness for discharge home (mean 8.5 vs. 7.5 days). Adjusting for valve type, sex and surgeon, hazard ratios (HR) from Cox models did not show a statistically significant effect of MS (relative to FS) on either hospital stay (HR 0.874, 95% CI 0.668-1.143, p-value 0.3246) or time to fitness for discharge (HR 0.907, 95% CI 0.688-1.197, p-value 0.4914). During mean follow up of 760 days (MS:745 and FS:777 days), 12 (10%) MS and 7 (7%) FS patients died (HR 1.871, 95% CI 0.723-4.844, p-value 0.1966). Average extra cost for MS was £1,714, during the first 12 months after AVR. Conclusions Compared to FS for AVR, MS did not result in shorter hospital stay, faster recovery or improved survival and was not cost-effective. MS approach is not superior to FS for performing AVR

Cardiac output Optimisation following Liver Transplant (COLT) trial: study protocol for a feasibility randomised controlled trial

Abstract Background Patients with liver cirrhosis undergoing liver transplantation have a hyperdynamic circulation which persists into the early postoperative period making accurate assessment of fluid requirements challenging. Goal-directed fluid therapy (GDFT) has been shown to reduce morbidity and mortality in a number of surgery settings. The impact of GDFT in patients undergoing liver transplantation is unknown. A feasibility trial was designed to determine patient and clinician support for recruitment into a randomised controlled trial of GDFT following liver transplantation, adherence to a GDFT protocol, participant withdrawal, and to determine appropriate endpoints for a subsequent larger trial to evaluate the efficacy of GDFT in patients undergoing liver transplantation. Methods The Cardiac output Optimisation following Liver Transplant (COLT) trial is designed as a prospective, single-centre, randomised controlled study to assess the feasibility and safety of GDFT in liver transplantation for patients with cirrhosis. Consenting adults (aged between 18 and 80 years) with biopsy-proven liver cirrhosis who have been selected to undergo a first liver transplantation will be included in the trial and randomised into GDFT or standard care starting immediately after surgery and continuing for the first 12 h thereafter. Both groups will have cardiac output and stroke volume monitored using the FloTrac (EV1000) device. The intervention will consist of a protocolised GDFT approach to patient management, using stroke volume optimisation. The control group will receive standard care, without stroke volume and cardiac output measurement. After 12 h the patient’s fluid management will revert to standard of care. The primary endpoint of this study is feasibility. Secondary endpoints will include a safety assessment of the intervention, graft and patient survival, liver function, postoperative complications graded by Clavien-Dindo criteria, length of intensive care and hospital stay and quality of life across the intervention and control groups. Discussion There is a growing body of evidence that the use of perioperative GDFT in surgical patients can improve outcomes; however, signals of harm have also been detected. Patients with liver cirrhosis undergoing liver transplantation have markedly different cardiovascular physiology than general surgical patients. If GDFT is proven to be feasible and safe in this patient group, then a multicentre trial to demonstrate efficacy and cost-effectiveness will be required. Trial registration International Standard Randomised Controlled Trial Registry, ID: ISRCTN10329248. Registered on 4 April 2016

Can Social Care Needs and Wellbeing be Explained by the EQ-5D? Analysis of the Health Survey for England

Aim: The recent shift to an integrated approach to health and social care aims to provide cohesive support to those who are in need of care, but raises a challenge for resource-allocation decision-making, in particular for comparison of diverse benefits from different types of care across the two sectors. This study aims to investigate the relationship of social care needs and wellbeing with a generic health status, measure using multivariate regression. Methods: We empirically compared responses to health and wellbeing measures and social care needs from a cross-sectional dataset of the general population (the Health Survey for England). Multivariate regression analyses were conducted to examine whether social care needs measured by the Barthel Index (BI) can be explained by health status as captured by the EQ-5D and the wellbeing measures WEMWBS and GHQ-12. Results: Our study found that poor overall scores for EQ-VAS, EQ-5D Index, GHQ-12 and WEMWBS indicated a need for social care. Investigation of the dimensions found that the EQ-5D dimensions self-care and pain/discomfort were statistically significantly associated with the need for social care. None of the GHQ-12 dimensions and two dimensions from WEMWBS, ‘been feeling useful’ and ‘had energy to spare,’ were statistically significantly associated with the BI. Conclusions: The results show that the need for social care, which is dependent on the ability to perform personal day-to-day activities, is more closely related to the EQ-5D dimensions than wellbeing measures WEMWBS and GHQ-12.EuroQoL Foundatio