Dataset Information

Protocol for a patient-reported experience measures (PREMs) survey of patients discharged during the COVID-19 pandemic and their family caregivers.

ABSTRACT:

Introduction

In the Swiss canton of Valais, the first cases of SARS-CoV-2 were detected on 28 February 2020. Discharged patients' and their family caregivers' experiences in relation to safety, quality of care, trust and communication during the COVID-19 hospitalisation period remain unexplored. The study aims to collect the patient-reported experience measures (PREMs) survey of patients discharged during the COVID-19 pandemic and their family caregivers.

Methods and analysis

Patients aged ?18 years, hospitalised between 28 February and 11 May 2020 and then discharged home, plus their family caregivers will be invited to complete a self-administrated questionnaire made up of 14 closed questions and 1 open-ended question. The questionnaire will include items on the patient's hospital trajectory and assess the interpersonal trust placed in nurses and physicians based on Krajewska-Ku?ak et al's Trust in Nurse Scale and Anderson et al's Trust in Physician Scale. Participants' perceived stress will be assessed using Cohen et al's Perceived Stress Scale. Feelings of safety will be examined based on Dryhurst et al's questionnaire on Risk Perception During Pandemics. After ethical clearance, data will be collected using a postal paper questionnaire and via an online web link. Descriptive and inferential statistics will be computed, and the open question will undergo a qualitative thematic analysis. We will analyse perceptions of the different hospital trajectories experienced by patients undergoing surgery with and without a SARS-CoV-2 infection.

Ethics and dissemination

The Human Research Ethics Committee of Vaud (2020-02025) authorised this study. Gathering experiences and learning about the impact of the COVID-19 pandemic on the social determinants of health among discharged patients and families fit in well with the Triple Aim framework and the PREMs survey. The study will formulate recommendations to support interventions in the face of the second wave of COVID-19 pandemic and their effects on patients' and their family caregivers' experiences.

SUBMITTER: Bonvin E

PROVIDER: S-EPMC7907615 | biostudies-literature | 2021 Feb

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Protocol for a patient-reported experience measures (PREMs) survey of patients discharged during the COVID-19 pandemic and their family caregivers.

Bonvin Eric E Tacchini-Jacquier Nadine N Monnay Sevrine S Verloo Henk H

BMJ open 20210223 2

<h4>Introduction</h4>In the Swiss canton of Valais, the first cases of SARS-CoV-2 were detected on 28 February 2020. Discharged patients' and their family caregivers' experiences in relation to safety, quality of care, trust and communication during the COVID-19 hospitalisation period remain unexplored. The study aims to collect the patient-reported experience measures (PREMs) survey of patients discharged during the COVID-19 pandemic and their family caregivers.<h4>Methods and analysis</h4>Pati ...[more]

PMID: 33622957

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Project description:Aim To study (a) the covariation between patient reported experience measures (PREMs) and registered process measures of access and continuity when ranking providers in a primary care setting, and (b) whether registered process measures or PREMs provided more or less information about potential linkages between levels of access and continuity and explaining variables.BackgroundAccess and continuity are important objectives in primary care. They can be measured through registered process measures or PREMs. These measures do not necessarily converge in terms of outcomes. Patient views are affected by factors not necessarily reflecting quality of services. Results from surveys are often uncertain due to low response rates, particularly in vulnerable groups. The quality of process measures, on the other hand, may be influenced by registration practices and are often more easy to manipulate. With increased transparency and use of quality measures for management and governance purposes, knowledge about the pros and cons of using different measures to assess the performance across providers are important.MethodsFour regression models were developed with registered process measures and PREMs of access and continuity as dependent variables. Independent variables were characteristics of providers as well as geographical location and degree of competition facing providers. Data were taken from two large Swedish county councils. Findings Although ranking of providers is sensitive to the measure used, the results suggest that providers performing well with respect to one measure also tended to perform well with respect to the other. As process measures are easier and quicker to collect they may be looked upon as the preferred option. PREMs were better than process measures when exploring factors that contributed to variation in performance across providers in our study; however, if the purpose of comparison is continuous learning and development of services, a combination of PREMs and registered measures may be the preferred option. Above all, our findings points towards the importance of a pre-analysis of the measures in use; to explore the pros and cons if measures are used for different purposes before they are put into practice.

Project description:BACKGROUND:The use of Patient Reported Experience Measures (PREMs) has great potential in healthcare service improvement, but a limited use. This paper presents an empirical case of PREMs innovation in Italy, to foster patient data use up to the ward level, by keeping strengths and addressing weaknesses of previous PREMs survey experiences. The paper reports key lessons learned in this ongoing experience of action research, directly involving practitioners. METHODS:The aim of this paper is to present the results of an ongoing action research, encompassing the innovation of PREMs collection, reporting and use, currently adopted by 21 hospitals of two Italian regions. The continuous and systematic PREMs collection has been implemented between 2017 and 2019 and includes: a continuous web-based administration, using web-services; an augmented and positive questionnaire matching standard closed-ended questions with narrative sections; the inclusion and benchmarking of patient data within a shared performance evaluation system; public disclosure of aggregated anonymized data; a multi-level and real-time web-platform for reporting PREMs to professionals. The action research was carried out with practitioners in a real-life and complex context. The authors used multiple data sources and methods: observations, feedback of practitioners, collected during several workshops and meetings, and analysis of preliminary data on the survey implementation. RESULTS:A continuous and systematic PREMs observatory was developed and adopted in two Italian regions. PREMs participation and response rates tend to increase over time, reaching stable percentages after the first months. Narrative feedback provide a 'positive narration' of episodes and behaviours that made the difference to patients and can inform quality improvement actions. Real-time reporting of quantitative and qualitative data is enabling a gratifying process of service improvement and people management at all the hospitals' levels. CONCLUSIONS:The PREMs presented in this paper has been recognized by healthcare professionals and managers as a strategic and positive tool for improving an actual use of PREMs at system and ward levels, by measuring and highlighting positive deviances, such as compassionate behaviours.

Project description:ObjectivesTo identify patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) in clinical quality registries, for people with cutaneous melanoma, to inform a new Australian Melanoma Clinical Outcomes Registry; and describe opportunities and challenges of routine PROM/PREM collection, especially in primary care.DesignSystematic review.Primary and secondary outcome measuresWhich PROMs and PREMs are used in clinical quality registries for people with cutaneous melanoma, how they are collected, frequency of collection, participant recruitment methods and funding models for each registry.Results1134 studies were identified from MEDLINE, PreMEDLINE, Embase, PsychInfo, Cochrane Database of Abstracts of Reviews of Effects databases and TUFTS Cost-Effectiveness Analysis Registry, alongside grey literature, from database inception to 5th February 2020. Following screening, 14 studies were included, identifying four relevant registries: Dutch Melanoma Registry, Adelphi Real-World Disease-Specific Programme (Melanoma), Patient-Reported Outcomes Following Initial treatment and Long-term Evaluation of Survivorship Registry, and Cancer Experience Registry. These used seven PROMs: EuroQol-5 Dimensions, Functional Assessment of Cancer-General (FACT-G) and FACT-Melanoma (FACT-M), European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-Cancer 30 (EORTC QLQ-C30), Fatigue Assessment Scale Hospital Anxiety and Depression Scale, Patient-Reported Outcome Measures Information System-29 and one PREM; EORTC QLQ-Information Module 26. PROMs/PREMs in registries were reported to improve transparency of care; facilitate clinical auditing for quality assessment; enable cost-effectiveness analyses and create large-scale research platforms. Challenges included resource burden for data entry and potential collection bias toward younger, more affluent respondents. Feedback from patients with melanoma highlighted the relevance of PROMs/PREMs in assessing patient outcomes and patient experiences.ConclusionsClinical registries indicate PROMs/PREMs for melanoma care can be incorporated and address important gaps, however cost and collection bias may limit generalisability.Prospero registration numberCRD42018086737.

Project description:BackgroundWith the rise of digital health technologies and telemedicine, the need for evidence-based evaluation is growing. Patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) are recommended as an essential part of the evaluation of telemedicine. For the first time, a systematic review has been conducted to investigate the use of PROMs and PREMs in the evaluation studies of telemedicine covering all application types and medical purposes.ObjectiveThis study investigates the following research questions: in which scenarios are PROMs and PREMs collected for evaluation purposes, which PROM and PREM outcome domains have been covered and how often, which outcome measurement instruments have been used and how often, does the selection and quantity of PROMs and PREMs differ between study types and application types, and has the use of PROMs and PREMs changed over time.MethodsWe conducted a systematic literature search of the MEDLINE and Embase databases and included studies published from inception until April 2, 2020. We included studies evaluating telemedicine with patients as the main users; these studies reported PROMs and PREMs within randomized controlled trials, controlled trials, noncontrolled trials, and feasibility trials in English and German.ResultsOf the identified 2671 studies, 303 (11.34%) were included; of the 303 studies, 67 (22.1%) were feasibility studies, 70 (23.1%) were noncontrolled trials, 20 (6.6%) were controlled trials, and 146 (48.2%) were randomized controlled trials. Health-related quality of life (n=310; mean 1.02, SD 1.05), emotional function (n=244; mean 0.81, SD 1.18), and adherence (n=103; mean 0.34, SD 0.53) were the most frequently assessed outcome domains. Self-developed PROMs were used in 21.4% (65/303) of the studies, and self-developed PREMs were used in 22.3% (68/303). PROMs (n=884) were assessed more frequently than PREMs (n=234). As the evidence level of the studies increased, the number of PROMs also increased (τ=-0.45), and the number of PREMs decreased (τ=0.35). Since 2000, not only has the number of studies using PROMs and PREMs increased, but the level of evidence and the number of outcome measurement instruments used have also increased, with the number of PREMs permanently remaining at a lower level.ConclusionsThere have been increasingly more studies, particularly high-evidence studies, which use PROMs and PREMs to evaluate telemedicine. PROMs have been used more frequently than PREMs. With the increasing maturity stage of telemedicine applications and higher evidence level, the use of PROMs increased in line with the recommendations of evaluation guidelines. Health-related quality of life and emotional function were measured in almost all the studies. Simultaneously, health literacy as a precondition for using the application adequately, alongside proper training and guidance, has rarely been reported. Further efforts should be pursued to standardize PROM and PREM collection in evaluation studies of telemedicine.

Project description:ObjectivesTo evaluate the feasibility of a digital and continuous collection and reporting of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) for chronic heart failure (CHF).DesignA single-site pilot study was settled for evaluating the feasibility of the intervention, both using qualitative and quantitative data (ie, workshop, surveys).SettingThe pilot has been implemented in a Tuscan specialised hospital (Italy).Participants162 patients were involved. Inclusion criteria were: a previous diagnosis of HF, age ≥18 years, absence of cognitive impairment or active tumours, ability to provide informed consent to study participation.InterventionThe continuous collection and reporting of PROMs and PREMs has been designed and implemented in 2018. PREMs questionnaires for patients were developed, while Kansas City Cardiomyopathy Questionnaire-12 was used for assessing PROMs. Questionnaires are administered at specific time points: discharge; 30 days, 7 and 12 months after the discharge. Enrolment of patients, administration and real-time reporting of questionnaires are carried on through a digital platform.Outcome measuresEnrolment, response and drop-out rates were considered to assess the feasibility of the intervention. Qualitative data were collected during meetings and workshops with health workers. The representativeness of the recruited sample with respect to the population characteristics was also evaluated.ResultsThe system has been successfully implemented during 2018. Response rates have been consistently above 50%, demonstrating patients' transversal willingness to participate. All the involved stakeholders acknowledged the feasibility of the design. The recruited sample is significantly different in terms of age and educational level compared with the overall population characteristics.ConclusionIt is possible to run a web-based systematic collection and reporting system for CHF patient-reported data. Systematic collection and reporting of PROMs and PREMs data allows professionals to increasingly assume CHF patient perspective in their daily work. Limitations will be used to improve the system.

Dataset Information

Protocol for a patient-reported experience measures (PREMs) survey of patients discharged during the COVID-19 pandemic and their family caregivers.

Introduction

Methods and analysis

Ethics and dissemination

Publications

Protocol for a patient-reported experience measures (PREMs) survey of patients discharged during the COVID-19 pandemic and their family caregivers.

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