Patient Experience Research Articles

Patients as knowledge partners in the context of complex chronic conditions

This article conveys how taking patient knowledge seriously can improve patient experience and further medical science. In clinical contexts related to infection-associated chronic conditions and other complex chronic illnesses, patient...

Rapid haemostasis to achieve dressing longevity: evaluation trial results using StatSeal catheter exit site protection.

Peripherally inserted central catheters (PICCs) are vital in delivering intravenous therapy. Despite their advantages, PICCs can lead to complications such as catheter exit site bleeding, which can cause patient distress and increase infection risk. This study evaluated the efficacy of StatSeal, a topical haemostatic device, in managing PICC exit site bleeding. StatSeal uses a hydrophilic polymer and potassium ferrate to form a seal, reducing access site bleeding and minimising dressing changes. For this study, Patients were recruited at Frimley Health NHS Foundation Trust; the trial involved 177 patients with StatSeal, and shows that 99% did not require additional dressing changes within the standard 7-day period. The findings demonstrate StatSeal's effectiveness in improving patient outcomes by reducing exit site bleeding and associated complications, enhancing the efficiency of vascular access maintenance and potentially lowering associated healthcare costs. The trial emphasises the importance of innovative solutions such as StatSeal to advance PICC care and improve patient experience.

Experiences and challenges of acute coronary syndrome patients in care provision: a qualitative systematic review

BackgroundCoronary artery disease including acute coronary syndrome (ACS) constitutes the most common cause of death in people with cardiovascular disease. Prompt diagnosis and early initiation of treatment significantly impact on patient outcomes. Positive patient experience with their initial care is linked to positive clinical outcomes.ObjectiveThis qualitative review aimed to investigate patients’ experience of care provision and the challenges faced by them during their different stages of care following an ACS.MethodsSearches of four databases - MEDLINE, Embase, CINAHL and PsychINFO - were conducted from inception until July 13, 2022, and were limited to English-language publications. Assessment of methodological quality of studies was performed using the Jonna Briggs Institute (JBI) qualitative assessment and review instrument. Data were extracted using the standardised data extraction tool from JBI. Data synthesis following the JBI approach of meta-aggregation was performed. The level of confidence for each synthesised finding was established based on ConQual.ResultsOverall, from 578 records, 10 studies were included with 39 findings extracted from the included studies. The main synthesised findings were the need to provide tailored information and appropriate management at different stages of care, and that timely management and trust in health care workers are associated with greater patient satisfaction and more positive experiences.ConclusionPatients with an ACS experience many challenges during different stages of their care. Clinicians should be aware of the challenges they face and provide tailored information to patients that is appropriate for their different stages of management in order to best optimise patient experience and improve patient outcomes.

GIBPS technique-a novel sequential technique of performing shoulder corticosteroid injections.

The introduction of the xxxxxxxx (GIBPS) technique represents a patient-centric novel and innovative method of ultrasound guided corticosteroid injection targeting the Glenohumeral joint (GHJ) and the Subacromial-Subdeltoid (SASD) bursa in a sequential manner, in the same setting. By integrating the two different sites of injection into a single technique, the procedure has the potential of transforming musculoskeletal interventional radiology and maximising patient care in shoulder pathologies. This procedure aims to reduce patient discomfort, optimise procedural efficiency, and enhance treatment precision through ultrasound guidance and improve the overall patient experience.

Effectiveness, acceptability, and potential of lay student vaccinators to improve vaccine delivery.

Task sharing can fill health workforce gaps, improve access to care, and enhance health equity by redistributing health services to providers with less training. We report learnings from a demonstration project designed to assess whether lay student vaccinators can support community immunizations. Between July 2022 and February 2023, 27 undergraduate and graduate students were recruited from the University of Toronto Emergency First Responders organization and operated 11 immunization clinics under professional supervision. Medical directives, supported with online and in-person training, enabled lay providers to administer and document vaccinations when supervised by nurses, physicians, or pharmacists. Participants were invited to complete a voluntary online survey to comment on their experience. Lay providers administered 293 influenza and COVID-19 vaccines without adverse events. A total of 141 participants (122 patients, 17 lay vaccinators, 1 nurse, and 1 physician) responded to our survey. More than 80% of patients strongly agreed to feeling safe and comfortable with lay providers administering vaccines under supervision, had no concerns with lay vaccinators, and would attend another lay vaccinator clinic. Content and thematic analysis of open-text responses revealed predominantly positive experiences, with themes about excellent vaccinators, organized and efficient clinics, and the importance of training, communication, and access to regulated professionals. The responding providers expressed comfort working in collaborative immunization teams. Lay student providers can deliver vaccines safely under a medical directive while potentially improving patient experiences. Rather than redeploying scarce professionals, task sharing strategies could position trained lay vaccinators to support immunizations, improve access, and foster community engagement.

Re-imagining the future state of the ventricular assist device controller interface through human-centered design.

Ventricular assist devices (VADs) are effective therapy for patients with end-stage heart failure. Current VAD controllers offer improved interactivity, yet limitations of the visual, tactile, and auditory interface persist that impact patient experience and quality of life (QoL). This study explores how VAD controllers can be redesigned using a human-centered design approach to enhance the emotional and functional experience of the device for patients. VAD patients (n = 21), caregivers (n = 4) and healthcare practitioners (n = 24) were interviewed to uncover design opportunities. From this, a series of realistic scenarios to design for emerged. A "design by analogy" method took inspiration from existing consumer products to ideate new functionality for the VAD wearable system, creating concepts for a controller interface and paired wearable device. An additional 15 patients and 2 caregivers were engaged to explore current VAD controller experiences and evaluate the future-state concepts. This research validated the need for increased automation and emergency functionality in VAD controllers, including remote monitoring of data, accurate communication of battery status, and automated medical alerts for critical device alarms. "Manage my health," "Feeling normal," "Social belonging," "Feeling safe," and "Sense of control" emerged as key patient concerns to be met by future VAD controller designs. The study demonstrated an innovative and relevant approach to improve usability of future VAD peripherals. By considering both emotional and functional perspectives in the design of lifesaving medical devices such as VADs, device manufacturers can uncover new opportunities to improve patient QoL through improved user experiences.

Effect of Clinician Posture on Patient Perceptions of Communication in the Inpatient Setting: A Systematic Review.

Nonverbal communication plays a pivotal role in the provision of effective patient care and has been associated with important patient health outcomes. Clinician posture, a nonverbal form of communication, may influence the patient experience and satisfaction. The relationship between clinician posture (i.e., standing or at the patient's eye level) and patient perceptions of clinician communication in the hospital-a setting with heightened power dynamics between patient and clinician-is currently unknown. We conducted searches of Ovid MEDLINE, EBSCO CINAHL Complete, EBSCO PsycInfo, Elsevier Embase/Embase Classic, Elsevier Scopus, and Web of Science Core Collection upto May 2023. English language studies were included if they compared clinician posture (eye-level or standing) during adult inpatient (including emergency department) interactions. Two authors independently abstracted data from included studies and assessed risk of bias or quality of evidence. A third author arbitrated any disagreements. Studies reported adherence to the posture intervention and/or patient perception outcomes. The latter included encounter duration, preferences for posture type, perceptions of interaction quality and clinician communication and compassion, and standardized assessments of patient satisfaction. Fourteen studies (six randomized controlled trials, four quasi-experimental studies, four observational studies) assessed clinician posture at the bedside. Ten noted at least one favorable outcome for clinicians who communicated at the patient's eye level, three revealed no differences in patient perceptions between standing and sitting, and one noted higher patient ratings for standing clinicians. Findings were limited by variation in interventions and outcomes, generally high risk of bias, and relatively low adherence to assigned posture groups. Compared to standing, eye-level communication by clinicians appears beneficial. The magnitude and types of benefits clinicians and patients may gain from this behavior remain unclear given heterogeneity and generally high risk of bias in available studies. With its relatively easy implementation and potential for benefit, clinicians should consider communicating with their hospitalized patients at eye level. PROSPERO, CRD42020199817.

Patient perceptions of the impact of inducible laryngeal obstruction on quality of life.

Inducible laryngeal obstruction (ILO) accounts for or contributes to dyspnea in a noteworthy proportion of treatment seeking populations including those misdiagnosed with asthma. Despite increasing awareness of the disorder, literature exploring patient experience is limited. The aim of this work is to report patient perspectives on ILO and the way in which it impacts quality of life. This qualitative study utilized methods detailed in the literature on grounded theory and phenomenological research to analyze interviews collected from participants diagnosed with ILO. Interviews were conducted, audio recorded, and transcribed. Transcriptions underwent content-analysis using Burnard's 14 step method [15], which included review of content codes across multiple raters until consensus regarding analyses was reached. Twenty-six participants were included in the study. Most participants were female (92%). Ages ranged from 18-72 with a mean age of 45 for female participants and 37 for male participants. Without specific prompting to do so, all participants offered descriptions of the specific symptoms they experienced and the triggers for their symptoms. In the content analysis process, "descriptions of symptoms and triggers" was thus labeled a theme that was present in all interviews. Seven additional themes were shared consistently and judged to encapsulate the interview material. These themes were: 2) diagnosis and treatment, 3) emotional impact of ILO, 4) perception of health and prognosis, 5) ameliorating factors, 6) influence of ILO on lifestyle, 7) the physical impact of ILO, and 8), social consequences of ILO. In addition, 54 subthemes were identified. Patients appear to place particular emphasis on the emotional and psychosocial consequences of ILO as well as factors that ameliorate the condition. As such, future efforts to treat ILO and to collect outcomes measures should account for these aspects of the patient experience.

Neurodivergent patient experience in a tertiary children's hospital-a qualitative analysis

IntroductionSensory processing challenges are commonly encountered in pediatric patients, particularly in those who are neurodivergent. We previously developed a novel clinical pathway (named “Sensory Pathway”) which aimed at improving patient care for those with sensory barriers via staff training, provision of sensory toolkits and early integration of families throughout the hospital stay. We hypothesized that utilization of this pathway will result in improved patient experience and provide valuable feedback to improve care.MethodsA voluntary survey was made available to all patients who utilized this resource as part of our hospital wide patient satisfaction survey. Qualitative data was coded using open coding as part of the constant comparison method data using NVivo 12 for Windows software for analysis. Software was used to create word clouds and clusters for visualization, which confirmed the themes and patterns that were noted from initial open coding.ResultsBetween 2021 and 2022, surveys were obtained from 160 patients who utilized the Sensory Pathway. More than 50% reported that the most helpful components of the pathway were the approach by the staff and sensory tools. The three major themes identified from the survey were (1) Tools and techniques that benefited their children; (2) Positive interactions and communication with the hospital staff, and (3) Suggestions for future improvement.ConclusionThe survey results highlight the importance of having tools readily available to aid with sensory regulation and comfort of patients during healthcare encounters, the value of a positive patient and staff encounter, as well as opportunities for improvement.

Exploring the Experience of Patients Who Received Mechanical Ventilation Support during Their Intensive Care Unit Stay

Objective: The objective of this study is to explore the experiences of patients who received mechanical ventilation (MV) support during their intensive care unit (ICU) stay in Jordan. Methods: A phenomenological hermeneutic approach was conducted, informed by the philosophy of Martin Heidegger. Fifteen patients participated in interviews regarding their experiences during their time in the critical care unit of three public hospitals in Jordan. Interpretive Phenomenological Analysis (IPA) was used to analyse the data. Findings: The findings of the current study indicated that patients who received MV support during their ICU stays experienced both physical and psychological suffering. A pattern of shared experiences among intensive care patients was identified. Five main themes captured the patients’ experiences: (1) feeling powerless, (2) being unable to recognise time, (3) feeling dead, (4) experiencing physical pain, and (5) having future concerns. Conclusion: The current study found that mechanically ventilated ICU patients suffer both physically and psychologically. Nurses should use specific strategies to relieve discomfort in addition to pain treatment. This is especially essential for non-verbal patients, whose actions may resemble those of their clinicians in pain.

Psychometric Properties of the Persian Version of the Intensive Care Experience Questionnaire (ICE-Q).

Background and Purpose: It is important to assess the experience of patients who have been admitted to an intensive care unit to provide the best treatment and nursing care possible. Therefore, a valid and reliable tool is necessary for measurement. This study aimed to determine the psychometric properties of the Persian version of the Intensive Care Experience Questionnaire (ICEQ) for open-heart surgery patients. Methods: The study was conducted in four steps: translation, face and content validity, confirmatory factor analysis, and reliability assessment. The adapted questionnaire was administered to 200 Iranian cardiac surgery patients who had received treatment in an intensive care unit within the past month. Results: In the final Persian version of ICEQ, there are 4 factors and 21 items. Following the translation and cultural adaptation process, the content validity was evaluated. Three items had content validity ratio < 0.6, so they were deleted. Scale-level content validity index/Average was 0.81 and more than 0.7 for each item on the scale. This scale was validated through confirmatory factor analysis using fit indicators (comparative fit index, normalized fit index, root mean square error of approximation, and chi-square). There was Cronbach's alpha of 0.71-0.85, and intraclass correlation coefficients were 0.82-0.93 for subscales. Conclusions: The Persian version of ICEQ showed appropriate psychometric properties. This scale may be useful to inform the development of effective interventions to improve subsequent outcomes for Iranian open-heart surgery patients.

Informed patient choice: A national approach to collect, analyze, and report orthotic/prosthetic patient experience data in Australia.

Informed patient choice: A national approach to collect, analyze, and report orthotic/prosthetic patient experience data in Australia.

How the CAHPS Clinician and Group Patient Experience Survey Data Have Been Used in Research: A Systematic Review

How the CAHPS Clinician and Group Patient Experience Survey Data Have Been Used in Research: A Systematic Review

Protocol for the development and validation of a Polypharmacy Assessment Score

BackgroundAn increasing number of people are using multiple medications each day, named polypharmacy. This is driven by an ageing population, increasing multimorbidity, and single disease-focussed guidelines. Medications carry obvious benefits, yet polypharmacy is also linked to adverse consequences including adverse drug events, drug-drug and drug-disease interactions, poor patient experience and wasted resources. Problematic polypharmacy is ‘the prescribing of multiple medicines inappropriately, or where the intended benefits are not realised’. Identifying people with problematic polypharmacy is complex, as multiple medicines can be suitable for people with several chronic conditions requiring more treatment. Hence, polypharmacy is often potentially problematic, rather than always inappropriate, dependent on clinical context and individual benefit vs risk. There is a need to improve how we identify and evaluate these patients by extending beyond simple counts of medicines to include individual factors and long-term conditions.AimTo produce a Polypharmacy Assessment Score to identify a population with unusual levels of prescribing who may be at risk of potentially problematic polypharmacy.MethodsAnalyses will be performed in three parts:1. A prediction model will be constructed using observed medications count as the dependent variable, with age, gender and long-term conditions as independent variables. A ‘Polypharmacy Assessment Score’ will then be constructed through calculating the differences between the observed and expected count of prescribed medications, thereby highlighting people that have unexpected levels of prescribing.Parts 2 and 3 will examine different aspects of validity of the Polypharmacy Assessment Score:2. To assess ‘construct validity’, cross-sectional analyses will evaluate high-risk prescribing within populations defined by a range of Polypharmacy Assessment Scores, using both explicit (STOPP/START criteria) and implicit (Medication Appropriateness Index) measures of inappropriate prescribing.3. To assess ‘predictive validity’, a retrospective cohort study will explore differences in clinical outcomes (adverse drug reactions, unplanned hospitalisation and all-cause mortality) between differing scores.DiscussionDeveloping a cross-cutting measure of polypharmacy may allow healthcare professionals to prioritise and risk stratify patients with polypharmacy using unusual levels of prescribing. This would be an improvement from current approaches of either using simple cutoffs or narrow prescribing criteria.

How to Involve Patients in GRAPPA Research as Partners.

Patient research partners (PRPs) have been actively participating in the Group for Research and Assessment of Psoriasis and Psoriatic Arthritis (GRAPPA) annual meetings, working groups, and research activities since 2013. As they have evolved, the PRPs operate as a cohesive group supported by their GRAPPA-approved handbook and policy documents. The number of involved PRPs has increased, allowing more opportunity for the incorporation of the patient voice and experience in GRAPPA activities. In the GRAPPA proceedings, PRPs regularly report on their involvement in the meetings and research projects. During a 30-minute plenary session at the GRAPPA 2023 annual meeting, attendees were informed about the evolving roles of PRPs in GRAPPA and beyond and were asked to provide feedback on their experience and opinions regarding PRP involvement in psoriatic disease research. Here we report the key messages of the session, including polling results, examples of PRP involvement, and ongoing challenges.

A protocol for the formative evaluation of the implementation of patient-reported outcome measures in child and adolescent mental health services as part of a learning health system

BackgroundMental health conditions affect one in seven young people and research suggests that current mental health services are not meeting the needs of most children and youth. Learning health systems are an approach to enhancing services through rapid, routinized cycles of continuous learning and improvement. Patient-reported outcome measures provide a key data source for learning health systems. They have also been shown to improve outcomes for patients when integrated into routine clinical care. However, implementing these measures into health systems is a challenging process. This paper describes a protocol for a formative evaluation of the implementation of patient-reported measures in a newly operational child and adolescent mental health centre in Calgary, Canada. The purpose is to optimize the collection and use of patient-reported outcome measures. Our specific objectives are to assess the implementation progress, identify barriers and facilitators to implementation, and explore patient, caregivers and clinician experiences of using these measures in routine clinical care.MethodsThis study is a mixed-methods, formative evaluation using the Consolidated Framework for Implementation Research. Participants include patients and caregivers who have used the centre’s services, as well as leadership, clinical and support staff at the centre. Focus groups and semi-structured interviews will be conducted to assess barriers and facilitators to the implementation and sustainability of the use of patient-reported outcome measures, as well as individuals’ experiences with using these measures within clinical care. The data generated by the patient-reported measures over the first five months of the centre’s operation will be analyzed to understand implementation progress, as well as validity of the chosen measures for the centres’ population.DiscussionThe findings of this evaluation will help to identify and address the factors that are affecting the successful implementation of patient-reported measures at the centre. They will inform the co-design of strategies to improve implementation with key stakeholders, which include patients, clinical staff, and leadership at the centre. To our knowledge, this is the first study of the implementation of patient-reported outcome measures in child and adolescent mental health services and our findings can be used to enhance future implementation efforts in similar settings.

A realist evaluation protocol: assessing the effectiveness of a rapid response team model for mental state deterioration in acute hospitals

BackgroundMental state deterioration poses significant challenges in healthcare, impacting patients and providers. Symptoms like confusion and agitation can lead to prolonged hospital stays, increased costs, and the use of restrictive interventions. Despite its prevalence, there's a lack of consensus on effective practices for managing mental state deterioration in acute hospital settings. To address this gap, a rapid response team model has been proposed as a potential intervention, aiming to provide early identification and targeted interventions.MethodsBased on realist evaluation steps, first, initial program theories are formulated to understand the logic behind the intervention. Second, literature synthesis identifies empirical evidence on contexts, mechanisms, and outcomes elements, refining initial theories. During the third step, data will be collected using qualitative methods such as field observations and interviews, as well as quantitative methods such as surveys of the staff, audits of electronic medical records, and analysis of incident records of mental state deterioration. Analysing this data informs configurations of contexts, mechanisms, and outcomes. In the fifth step, the configurations are synthesised, presenting refined, evidence-informed program theories.ConclusionThis study addresses the knowledge gap by evaluating the rapid response model's effectiveness in managing mental state deterioration in acute hospital settings. Realist principles guide the exploration of causal mechanisms and their interaction with specific implementation contexts. The objective is to identify what works, for whom, and under what circumstances, aiming to manage deterioration, reduce restrictive interventions, and enhance the experience for patients and staff by implementing a proactive model of care. The findings contribute to evidence-based approaches for managing mental state deterioration in hospital settings, informing policy and practice in this crucial area of healthcare.

Analysis of the Ghanaian Health System and Patients Safety within the IHI Triple Aim Framework

Objective: To analyze Ghana’s healthcare system challenges through the Institute for Healthcare Improvement’s Triple Aim framework encompassing population health, patient experience and per capita cost metrics. Method: Dimensional analysis of peer-reviewed papers, government data and case studies assessed population health indicators and equity, literature on patient perspectives regarding quality and responsiveness of care along with evaluation of cost trends and deficiencies driving expenditure growth. Results: Gaps persist in universal health coverage amid rural-urban disparities in access and financial protection. Care experiences vary significantly by socioeconomic status and geography. Rising costs attributed to inefficiencies in areas like procurement and prescriber practices. Scientific Novelty: Unique application of Triple Aim framework for structured health systems analysis in a lower-middle income sub-Saharan country enabling robust diagnosis of coverage, quality, sustainability gaps. Practical Significance: Demonstrates utility of balanced Triple Aim methodology for health policymakers in low-resource settings to systematically evaluate healthcare priorities across access, outcomes, experiences and costs.

Patient experiences and clinical outcomes of admissions to municipal acute wards versus a hospital: a multicentre randomised controlled trial in Norway

Background In Norway, municipal acute wards (MAWs) were implemented as alternatives to hospitalisation. Evaluations of the quality of MAW services are lacking. The primary objective of this study was to compare patient experiences after admission to a MAW versus to a hospital. The secondary objective was to compare ‘readmissions’, ‘length of stay’, ‘self-assessed health-related quality of life’ as measured by the EuroQol 5 items 5 level (EQ-5D-5L) index, and ‘health status’ measured by the RAND-12, in patients admitted to a MAW versus a hospital. Methods A multicentre randomised controlled trial (RCT), randomising patients to either MAW or hospital. Results In total, 164 patients were enrolled in the study; 115 were randomised to MAW and 49 to hospital. There were no significant differences between the MAW and hospital groups regarding patient experience, which was rated positively in both groups. Patients in the MAW group reported significantly better physical health status as measured by the RAND-12 four to six weeks after admittance than those randomised to hospital (physical component summary score, 31.7 versus 27.1, p = 0.04). The change in EQ-5D index score from baseline to four to six weeks after admittance was significantly greater among patients randomised to MAWs versus hospitals (0.20 versus 0.02, p = 0.03). There were no other significant differences between the MAW and hospital groups. Conclusions In this study, patient experiences and readmissions were similar, whether patients were admitted to a MAW or a hospital. The significant differences in health status and quality of life favouring the MAWs suggest that these healthcare services may be better for elderly patients. However, unfortunately we did not reach the planned sample size due to challenges in the data collection posed by the Covid-19 pandemic.

Severe acute pancreatitis in the era of endoscopically placed lumen-apposing metal stents (LAMS): critical care outcomes from a large UK pancreatobiliary centre

Objectives1. Describe characteristics of patients with severe acute pancreatitis (SAP) requiring admission to Critical Care, including interventional management of pancreatic fluid collections.2. Quantify whether patients requiring drainage of collections via...