The effect of informing patients with video before cardiac surgery on intensive care experience: A randomized controlled trial.

Objectives: To study the effect of informing patients with video before cardiac surgery on intensive care experience. Methods: This randomized controlled trial was conducted between December 2021 and December 2022 in the cardiovascular surgery clinic of a public hospital with the participation of 90 patients (45 patients in experimental group - 45 patients in control group) who were scheduled to undergo cardiac surgery. Patient Information Form and Intensive Care Experiences Scale were used for study data. Patients in experimental group were informed with video about the intensive care before cardiac surgery. Results: It was found that the total score on ICES of the experimental group (74.5±3.9) was statistically and significantly higher than that of the control group (63.9±6.4) (p<0.001). The sub-dimension of awareness of surroundings (20.8±1.7), the frightening experiences (18.6±1.0), and the recall of experience (18.5±1.5) and satisfaction with care (16.7±1.4) were found to be statistically significantly higher in the experimental group, than in the control group sub-dimension scores (p<0.001). Conclusion: It was found that informing patients with video about the intensive care setting and process before cardiac surgery had a positive effect on the intensive care experience. Note: The study was produced from a master's thesis and was not presented. All participants gave informed consent for the study, and that their anonymity was preserved.Trial Registration NO.: NCT05255887.

Patients' experiences of clinical trial participation involving a product remotely assessing study drug adherence.

Background: The participation of patients in clinical trials is crucial for the development of healthcare. There are several challenges in the recruitment of trial participants with acute medical conditions. The registry-based randomized DAPA-MI clinical trial recruited patients during hospitalization for myocardial infarction and provided study drugs in bottles with smart caps that used wireless technology to transmit monitoring data. This interview study aimed to investigate patients' experience of participation in a clinical trial and their attitude to the new bottle cap technology. Methods: A subset of patients participating in the DAPA-MI trial were recruited from four hospitals in Sweden. Semi-structured interviews were conducted and analysed using manifest content analysis. Results: Video interviews were performed including 21 patients (four women and 17 men). The median age was 59 years (range 44-80). Four categories of patients' experiences were identified. A willingness to contribute consisted of patients' positive attitudes to participation and to be a part of development and research. The perception of information emphasized the value of the oral information as well as the importance of time for reflection. Be in a vulnerable condition highlighted the impaired ability to perceive and remember in the acute medical condition. Adaptation to a new technology described the overall positive experiences of the smart bottle cap to evaluate adherence. Conclusions: Patients' experiences of trial participation were in general positive but some challenges in the acute setting of a myocardial infarction were revealed. The smart bottle cap was well accepted, despite some handling difficulties.

Exploring perceptions of inpatient hospital attire in children with cancer.

BACKGROUND: Attire bolsters identity, self-expression, and comfort. Hospital gowns are known to be distressing in adults. Attitudes of children with cancer toward hospital attire remain uninvestigated and may be a modifiable factor in overall well-being. METHODS: A 39-item mixed methods survey evaluated perceptions of patient attire in children with cancer. Children aged 7-18 years were recruited at an academic medical center. Data analysis included simple statistics and thematic analysis. RESULTS: Forty children with cancer receiving oncologic care participated. Participants' mean age was 12.4 (SD = 3.0, range = 7-17) years, and 25 (62%) were male. Quantitative data revealed 81% of participants preferred their own attire when admitted to the hospital, feeling more comfortable in such when well (91%) or sick (75%). They did not feel like they "must" wear a gown when admitted (60%) and did not want to be asked about preferred inpatient attire (63%). Thematic analysis revealed that children had strong negative views of gowns and preferred to wear their own attire in the hospital, which provided physical and emotional comfort. Children worried wearing their own clothing could impede their care. CONCLUSION: Children with cancer prefer wearing their own clothes in the hospital for physical and emotional comfort. They are willing to wear gowns for ease of care; however, they do not want to arbitrate when they need to make that choice. Providers may ease distress by considering a child's own clothes as default hospital attire with instructions for when a gown is necessary for good clinical care.

Patient-centric comparative analysis of experiences in open upright and conventional closed MRI scanners.

INTRODUCTION: MRI often induces anxiety, leading to incomplete scans and claustrophobia-related distress. Open MRI systems aim to enhance patient comfort. This study examines how prior MRI experiences impact subsequent encounters in an open upright MRI scanner. METHODS: In this cross-sectional study, 118 adult patients completed a self-administered questionnaire from August 2022 to October 2023. It covered previous MRI experiences, including questions about claustrophobia, premature scan terminations, sedative medication usage, general MRI experiences, and interactions with radiology technologists. RESULTS: Patients in open upright MRI reported less claustrophobia compared to closed MRI systems (18.4% vs. 58.3%), fewer premature scan terminations (5.3% vs. 31.0%), and less sedative use (5.3% vs. 46.9%). Moderate positive correlations were found between past and current claustrophobic events and premature scan terminations. Effective communication with radiology technologists was essential for patient comfort and reduced claustrophobia. Scan duration and noise triggered discomfort in 26.1% and 21.6% of study participants respectively. Persons without prior MRI experience were more satisfied with the examination and expressed no clear preference for future MRI settings, contrasting those with previous exposure favoring the open MRI setup. CONCLUSION: The study emphasizes the benefits of open upright MRI for high-risk claustrophobic patients. It identifies the lasting impact of negative MRI experience on future examinations and highlights the crucial role of radiology technologists. IMPLICATIONS FOR PRACTICE: Integrating open MRI scanners in medical facilities and prioritizing effective communication with radiology technologists enhances patient comfort. Positive experiences with open MRI may improve patient compliance and offer greater flexibility for future examinations.

'You Just Struggle on Your Own': Exploring Older People and Their Caregivers' Perspectives About Falls Prevention Education in Hospitals.

BACKGROUND: Providing older patients with an opportunity to participate in individualised falls preventive education, has been shown to reduce hospital falls. However, few studies have explored older peoples' perspectives of hospital falls prevention education. This study aimed to explore older people and their caregivers' knowledge and awareness about hospital falls prevention, including their reflections on the education they received when hospitalised. METHODS: A qualitative, exploratory study with focus groups and semistructured interviews was conducted. Participants were a purposively selected sample of community-dwelling older people (65+ years) admitted to a hospital in the past 5 years and caregivers of older people. Data were thematically analysed using deductive and inductive approaches, and a capability-opportunity-motivation-behaviour model was applied to understand key determinants of implementing falls education for hospitalised older people. RESULTS: Participants' [n = 46 (older people n = 37, age range 60-89 years), caregivers n = 9] feedback identified five themes: distress and disempowerment if the participant did have a hospital fall or nearly fell, anxiety and uncertainty about what behaviour was required while in hospital, insufficient and inconsistent falls prevention education, inadequate communication and underlying attitudes of ageism. Applying a behaviour change model suggested that older people and their caregivers did not develop falls prevention knowledge, awareness or motivation to engage in falls prevention behaviour. Older people were also provided with limited opportunities to engage in falls preventive behaviour while in hospital. CONCLUSION: Older people in our study received sporadic education about falls prevention during their hospital admissions which did not raise their awareness and knowledge about the risk of falls or their capability to engage in safe falls preventive behaviour. Conflicting messages may result in older people feeling confused and anxious about staying safe in hospital.

Patient Evaluation of Patient-Controlled Analgesia for Pain Crises in Sickle Cell Disease.

BACKGROUND: Vaso-occlusive crisis causing severe pain can be seen in patients with sickle cell anemia and potent opioids should be used in this process. Although sickle cell disease (SCD) patients use patient-controlled analgesia (PCA), we encountered no study evaluating this method from the participants' perspective. AIM: This descriptive study aimed to evaluate the use and effectiveness of PCA administered using the Mersin Algology Protocol (MAP) during painful episodes of SCD based on participants reports. METHODS: After obtaining approval from the local ethics committee, 109 SCD participants using PCA as per the MAP between 2018 and 2020 were recruited for the study. The participants answered a 28-item questionnaire regarding their annual number of pain crises, sites of pain, knowledge about PCA, the number of times they used PCA, and the positive and negative aspects of the PCA method. RESULTS: The mean age of the participants was 28.80 ± 11.5 years. Ninety-nine (90.8%) of the participants considered PCA superior to other pain management methods they had used previously. The 53 participants (48.6%) who waited for their pain to worsen before administering the demand dose expressed fear of taking high doses of medication. As the number of times a participant used PCA increased, NRS scores for pain at the time of demand dosing decreased from 7-10 to 4-6 (p = .013). Eighty-five (78%) of the participants reported having no problems related to the device or drug while using PCA. CONCLUSION: We found that PCA was used more correctly by participants with more experience using the device. Participants who delay demand dosing do so because of anxiety about developing dependence and to avoid high doses.

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

Purpose: Patient experience is a key aspect of care quality. The Consumer Assessment of Healthcare Providers and Systems Clinician and Group (CG-CAHPS®) survey measures experiences with ambulatory care providers to inform public reporting, pay-for-performance initiatives, interventions, patient choice of physicians/practices, and quality improvement. Since the survey's 2007 release, no systematic review of its use in research has been published. Methods: We reviewed English-language, peer-reviewed articles published since 2008 using CG-CAHPS survey data in the U.S. We followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines and used the Checklist for Analytical Cross-Sectional Studies. Results: We examined 126 articles and included 52. Twenty-seven articles focused on general primary care, and the others focused on ambulatory specialty care. Of the 52 studies, 37 were cross-sectional, and the majority conducted patient-level regression analysis, controlling for patient characteristics. The most-used CAHPS measures were overall provider rating and the provider communication composite. CG-CAHPS data were primarily utilized to evaluate interventions (24 studies) and examine cross-sectional associations (21 studies) of site-level (eg, organizational climate), provider-level (physician empathy), and patient-level (medication adherence) factors with patient experience. Four studies reported disparities in patient experience. Conclusions: The widespread use of CG-CAHPS data implies the survey's value in measuring and improving care quality. Unlike facility or plan surveys, the CG-CAHPS survey was designed to allow attribution to medical groups and clinicians, which, as evidence shows, is its main strength. Policymakers, researchers, clinicians, and health care leaders can leverage CG-CAHPS data in quality improvement efforts and interventions supporting patient-centered care.

Experiences and preferences of people with stroke and caregivers, around supports provided at the transition from hospital to home: a qualitative descriptive study.

BACKGROUND: Transitioning home from the structured hospital setting poses challenges for people with stroke (PWS) and their caregivers (CGs), as they navigate through complex uncertainties. There are gaps in our understanding of appropriate support interventions for managing the transition home. In this qualitative study, we explored the perspectives of PWS and their CGs regarding their support experiences and preferences during this period. METHODS: Between November 2022 and March 2023, and within six months of hospital discharge, audio-recorded, semi-structured interviews were conducted with PWS and CGs. All interviews were transcribed, imported into NVivo software, and analysed using reflexive thematic analysis. RESULTS: Sixteen interviews were conducted, nine with PWS and seven with CGs. Four themes relevant to their collective experiences and preferences were identified: (i) Need for tailored information-sharing, at the right time, and in the right setting; (ii) The importance of emotional support; (iii) Left in limbo, (iv) Inequity of access. Experiences depict issues such as insufficient information-sharing, communication gaps, and fragmented and inequitable care; while a multi-faceted approach is desired to ease anxiety and uncertainty, minimise delays, and optimise recovery and participation during transition. CONCLUSIONS: Our findings highlight that regardless of the discharge route, and even with formal support systems in place, PWS and families encounter challenges during the transition period. The experiences of support at this transition and the preferences of PWS and CGs during this important period highlights the need for better care co-ordination, early and ongoing emotional support, and equitable access to tailored services and support. Experiences are likely to be improved by implementing a partnership approach with improved collaboration, including joint goal-setting, between PWS, CGs, healthcare professionals and support organisations.

Rare disease 101: an online resource teaching on over 7000 rare diseases in one short course.

BACKGROUND: An estimated 3.5 million people in the UK live with a rare disease however due to the rarity of each individual condition this is not currently reflected in mainstream medical education. As a result, common features of living with a rare condition include diagnostic delay, poor coordination of health and social care and lack of access to specialist care and treatment. This is well documented in reports published by patient advocacy groups collating the patient experience and has been highlighted by the Department of Health and Social Care in its UK Rare Diseases Framework. One of the four priority areas outlined in this policy published in 2021 is 'increasing awareness amongst healthcare professionals'. Medics4RareDiseases (M4RD), a charity based in the UK, has proposed a disease-agnostic approach to educating doctors about rare disease, focusing on the common challenges experienced across this heterogeneous collection of conditions, rather than on the minutiae of each of the > 7000 rare conditions. A literature search using MEDLINE, PubMed Central and Bookshelf confirmed a lack of broad rare disease teaching in medical literature; none of the 10 final resources identified focused on the topic as a whole. RESULTS: To address this, M4RD created the course 'Rare Disease 101'. It is accessed online using a learning management system that is free, contains interactive lessons, hosts a discussion board and is easily updated. In the 29 months since going live, 942 individuals have registered with 204 having completed the course; early feedback from 33 respondents was unanimously positive (all participants rated at least good (76%: excellent)) demonstrating that both clinicians and patients can benefit from broad rare disease education. The course is freely available to all at https://learn.m4rd.org/ . CONCLUSIONS: Disease-agnostic training about rare disease as a large patient population, focusing on its unique profile of unmet needs, is required. Rare Disease 101 provides a pragmatic approach to an educational challenge that leads to poor patient outcomes. Early results suggest that the educational programme is well-received but further evaluation and assessment is needed.

Content validity of patient-reported measures evaluating experiences of the quality of transitions in healthcare settings-a scoping review.

No reviews so far have been conducted to define the constructs of patient-experienced quality in healthcare transitions or to identify existing generic measures of patients' experience of the quality within healthcare transitions. Our aim was to identify domains relevant for people experiencing healthcare transitions when evaluating the quality of care they have received, map the comprehensiveness of existing patient-reported experience measures (PREM), and evaluate the PREMs' content validity. The method was guided by the Joanna Briggs Institutes' guidance for scoping reviews. The search was performed on 07 December 2021 and updated 27 May 2024, in the electronic databases Medline (Ovid), Embase (Ovid), and Cinahl (EBSCO). The search identified 20,422 publications, and 190 studies were included for review. We identified 30 PREMs assessing at least one aspect of adults' experience of transitions in healthcare. Summarising the content, we consider a model with two domains, organisational and human-relational, likely to be adequate. However, a more comprehensive analysis and adequate definition of the construct is needed. None of the PREMs were considered content valid.

Sedation Experiences of Pediatric Intensive Care Nurses: Exploring PICU Nurse Perspectives on Sedative Management and Communication.

Objective: This study's purpose is to better understand pediatric intensive care nursing perspectives on sedative management as a precursor to improving aspects of sedation assessment, titration, and communication. Methods/Design: We queried nurses in the pediatric intensive care unit at a 40+ bed quaternary care using an electronic survey about their experiences with sedation management. Data was collected using REDCap and statistical analyses were performed to assess for differences between experience levels in areas. Results: Seventy nurses responded with 42% response rate. More than 95% were comfortable calculating sedation and delirium scores. Those with less than 5 years' experience were significantly more likely to consider sedation scores helpful (P = .04) and also significant more likely to agree that delirium scores are used effectively (P = .01). Eighty-eight percent of respondents were comfortable raising concerns about sedation to the multidisciplinary team, but those with less than 5 years' experience were significantly less likely to express concerns to attending (P = .001). Conclusion: Newer nurses are more inclined to support use of standardized scoring systems for sedation and delirium, but less comfortable approaching attending clinicians with their concerns. Intensive care teams should pay careful attention to team dynamics, particularly as they apply to sedative management and work to improve communication, collaboration, and educational interventions to improve patient care. Further work understanding nursing perspectives and further attempts to improve interprofessional communication seems a wise investment and could obviate barriers that may exist.

Telemedicine and Patient Experience Ratings at an Academic Integrative Medicine Practice: Retrospective Examination.

BACKGROUND: The use of telemedicine (TELE) increased exponentially during the COVID-19 pandemic. While patient experience with TELE has been studied in other medical disciplines, its impact and applicability to integrative medicine practices remain unknown. OBJECTIVE: The aim of this study is to assess the impact of visit modality, TELE versus face-to-face (F2F) encounters, on patient experience at an integrative medicine practice at a single academic medical center. Given the significant role of the patient-physician relationship, therapeutic presence, and touch in integrative medicine, we hypothesized that TELE would result in reduced patient experience compared to traditional F2F encounters. METHODS: A retrospective examination of Press Ganey surveys at an academic, consultative, and integrative medicine practice was conducted. Anonymous surveys completed by patients, older than 18 years of age, who had TELE or F2F appointments from April 1, 2020, to March 31, 2023, were included. At our medical center, patients commonly travel in from out of state for complex care. We examined percentage "top box" scores (ie, the percentage of respondents who selected the most positive response category on the survey, "very good"), across a variety of experience metrics. ANOVA and chi-square analyses were completed, with a significance threshold of P<.05. RESULTS: Over the 36 months, a total of 1066 surveys were completed and returned (TELE: n=333; F2F: n=733). Overall, 73% (n=778) of respondents were female with an average age of 57.6 (SD 13.84) years. Most patients were English-speaking (n=728, 99.3%), White (n=1059, 92.7%), and not Hispanic or Latino (n=985, 92.4%). There was significantly higher satisfaction with access to care for TELE visits compared to F2F visits. There were no differences in satisfaction with the care provider or in overall experience. When examining the specific aspects of using technology during TELE visits, there were no differences in audio quality, visual quality, or ease of talking to the care provider based on sex. There was, however, a difference in video quality based on age, where those 80 years and older rated significantly lower video quality compared to all other age groups. CONCLUSIONS: Top-level patient experience can be attained with TELE integrative medicine visits. Additional studies, particularly those correlating positive experience findings with specific behaviors used during TELE visits, would further our understanding of the integrative medicine patient experience. In the meantime, efforts should be made to ensure a policy that promotes the ongoing provision of TELE in integrative medicine.

What role does compassion have on quality care ratings? A regression analysis and validation of the SCQ in emergency department patients.

OBJECTIVE: To examine the unique contribution of patient reported experiences of compassion to overall patient quality care ratings. Additionally, we assess whether patients' reported experiences of compassion in the emergency department differed between sociodemographic groups. METHODS: Provincial data for this cross-sectional study were collected from 03/01/2022 to 09/05/2022 from 14 emergency departments in Alberta, Canada. Data from 4501 emergency department patients (53.6% women, 77.1% White/European) were analyzed. The primary outcome was patients' overall quality care ratings during their most recent ED visit. Measures included in the hierarchical stepwise regression included demographics, and those drawn from the Emergency Department Patient Experience of Care (EDPEC) questionnaire: single and multi-item measures of patient information (e.g., patient perceptions health) and patient experience (e.g., physician communication), and compassion (e.g., Sinclair Compassion Questionnaire; SCQ-ED). RESULTS: Data from 4501 ED patients were analysed. Stepwise hierarchical linear multiple regression indicated that of 21 included variables, compassion most strongly predicted overall quality care ratings (b=1.61, 95% CI 1.53-1.69, p<.001, f2=.23), explaining 19% unique variance beyond all other measures. One-way ANOVAs indicated significant demographic differences in mean compassion scores, such that women (vs. men) reported lower compassion (MD=-.15, 95% CI=-.21, -.09, p<.001), and Indigenous (vs. White) patients reported lower compassion (MD=-.17, 95% CI =-.34, -.01, p=.03). CONCLUSIONS: Compassion was identified as a key contributor to ED overall quality care ratings, and experiences of compassion varied as a function of demographics. Patient-reported compassion is an indicator of quality care that needs to be formally integrated into clinical care and quality care assessments.

Perception of Periodontitis Patients about Treatment Outcomes: A Cross-Sectional Study in Saudi Arabia.

Patient compliance following periodontal therapy is extremely important in predicting the prognosis of the disease and maintaining treatment outcomes. Therefore, this study aimed to investigate the perception of periodontitis patients about treatment outcomes. A cross-sectional study was conducted among periodontitis patients in a single dental center through a pre-validated questionnaire that was distributed to each participant in the waiting area of periodontal clinics by utilizing a convenience sampling technique. Median and interquartile ranges were used in addition to frequency and percentages. Bivariate analyses were performed using the Mann-Whitney U and Kruskal-Wallis test. Among the 300 male and female participants, the median score (interquartile range) of the current level of pain revealed that males experienced more pain than females, with a median score of 5 (0-7) for males and 4 (0-6) for women. However, the median (interquartile range) for desired and expected pain levels in both genders was 0 (0-1), 0 (0-4). There were significant differences in median score ratings between males and females for expected, distress, success, and importance levels (p-value < 0.05). Patients with periodontitis provided valuable insights into the experiences of individuals undergoing treatment for periodontal disease, indicating overall patient satisfaction with the expected levels of periodontal outcomes.

Women's engagement with community perinatal mental health services: a realist evaluation.

BACKGROUND: In recognition of the burden of Perinatal Mental Health problems, NHS England invested £365 million to transform women's access to mental health care, including investment in Community Perinatal Mental Health Services. This study examined how elements of provider care affected women's engagement with these services. METHODS: Semi-structured interviews were conducted with 139 women and explored their experiences of care from 10 different Community Perinatal Mental Health Teams; including which service components participants believed made a difference to their initial and continued engagement. Realist analysis was used to create context-mechanism-outcome configurations (CMOCs) across interviews, since not all parts of the configurations were always articulated within singular interviews. RESULTS: Four key pillars for engagement were identified: perinatal competence, relationship building, accurate reassurance, and reliability. The way perinatal competencies were relayed to women mattered; compassion, understanding and consistency were critical interactional styles. The extent to which these factors affected women's engagement varied by their context and personal characteristics. CONCLUSIONS: As mental health problems increase, disproportionately affecting vulnerable populations, it is critical to continue to ensure support is not only available, but appropriately meets the needs of those individuals. Our findings suggest that key staff behaviours applied at the right time can support women's engagement and potentially contribute to better treatment outcomes.

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

BACKGROUND: 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. METHODS: We conducted searches of Ovid MEDLINE, EBSCO CINAHL Complete, EBSCO PsycInfo, Elsevier Embase/Embase Classic, Elsevier Scopus, and Web of Science Core Collection up to 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. RESULTS: 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. DISCUSSION: 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. REGISTRATION: PROSPERO, CRD42020199817.

Advancements in eye movement measurement technologies for assessing neurodegenerative diseases.

Eye movements have long been recognized as a valuable indicator of neurological conditions, given the intricate involvement of multiple neurological pathways in vision-related processes, including motor and cognitive functions, manifesting in rapid response times. Eye movement abnormalities can indicate neurological condition severity and, in some cases, distinguish between disease phenotypes. With recent strides in imaging sensors and computational power, particularly in machine learning and artificial intelligence, there has been a notable surge in the development of technologies facilitating the extraction and analysis of eye movements to assess neurodegenerative diseases. This mini-review provides an overview of these advancements, emphasizing their potential in offering patient-friendly oculometric measures to aid in assessing patient conditions and progress. By summarizing recent technological innovations and their application in assessing neurodegenerative diseases over the past decades, this review also delves into current trends and future directions in this expanding field.

Measuring patient-reported experience of solid organ transplantation healthcare: A scoping review of condition- and transplant-specific measures.

BACKGROUND: Measures of patient experience are increasingly valued as key to healthcare quality assessment. We aimed to identify and describe publicly available measures assessing patient-reported experience of solid organ transplantation healthcare, and identify patient groups, healthcare settings, or aspects of patient experience underserved by existing measures. METHODS: We systematically searched MEDLINE, Embase, CINAHL, PsycINFO, Cochrane CENTRAL, Scopus and Web of Science from inception to 6th July 2023; supplemented with grey literature searches. Two reviewers independently screened search hits; outputs reporting patient-reported measures of multiple aspects of established solid organ transplantation healthcare were eligible. We abstracted measure context, characteristics, content (i.e., attributes of patient experience assessed), and development and validation processes. RESULTS: We identified nine outputs reporting eight measures of patient experience; these related only to kidney (n = 5) or liver (n = 3) transplantation, with no available measures relating to heart, lung, pancreas or intestinal transplantation. Of the identified measures, four were specific to solid organ transplant recipients. Measures sought to assess "patient satisfaction" (n = 4) and "patient experience" (n = 4) of healthcare. Measures mapped to between five and 16 of 20 attributes of patient experience, most often Information and education, Communication, and Access to care (all n = 7). Six measures reported a development process, only three reported a validation process. CONCLUSIONS: Publicly available patient-reported measures of organ transplantation healthcare experiences are limited to kidney and liver transplantation. There is heterogeneity in measure context, characteristics, and content, and insufficient clarity concerning how well measures capture the specific experiences of transplant recipients. Formalised measures of patient experience, specific to solid organ transplantation, with transparent reporting of development and validity are needed.

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

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

"There is a lot of shame that comes with this": A qualitative study of patient experiences of isolation, embarrassment, and stigma associated with overactive bladder.

AIMS: Beyond causing physical discomfort, overactive bladder (OAB) is distressing to patients across a variety of psychosocial domains. In this qualitative component of a larger mixed methods study, we explore patients' lived experience with OAB to understand how this condition impacts individuals on a personal and social level, as well as their experiences interacting with the health care system. METHODS: A total of 20 patients and 12 physicians completed a questionnaire and semi-structured interview. The interview guide, developed in an iterative fashion by the authors, included questions about treatment decision making as well as experiences living with or treating OAB; this manuscript focuses on the questions probing lived experiences and interactions between patients and physicians. The interviews were recorded, transcribed and inductively coded and analyzed according to the principles of interpretive description to develop themes. RESULTS: Analysis of patient and physician interviews yielded five key themes: isolation due to OAB diagnosis, social stigma associated with noticeable OAB symptoms, embarrassment from interactions with the health care system, feeling invalidated and dismissed by physicians, and OAB patients as a "vulnerable" population with "desperation" for cure. CONCLUSIONS: OAB causes patients marked distress beyond their physical symptoms; it causes feelings of isolation from friends and family and makes them feel embarrassed to discuss their condition with loved ones and physicians alike. Efforts to destigmatize OAB, validate patient experiences, and improve access to OAB care may help diminish the psychosocial burden of OAB.