Patient-centered outcomes and outcome measurements for people aged 65 years and older-a scoping review.

INTRODUCTION: The aging population is a challenge for the healthcare system that must identify strategies that meet their needs. Practicing patient-centered care has been shown beneficial for this patient-group. The effect of patient-centered care is called patient-centered outcomes and can be appraised using outcomes measurements. OBJECTIVES: The main aim was to review and map existing knowledge related to patient-centered outcomes and patient-centered outcomes measurements for older people, as well as identify key-concepts and knowledge-gaps. The research questions were: How can patient-centered outcomes for older people be measured, and which patient-centered outcomes matters the most for the older people? STUDY DESIGN: Scoping review. METHODS: Search for relevant publications in electronical databases, grey literature databases and websites from year 2000 to 2021. Two reviewers independently screened titles and abstracts, followed by full text review and extraction of data using a data extraction framework. RESULTS: Eighteen studies were included, of which six with involvement of patients and/or experts in the process on determine the outcomes. Outcomes that matter the most to older people was interpreted as: access to- and experience of care, autonomy and control, cognition, daily living, emotional health, falls, general health, medications, overall survival, pain, participation in decision making, physical function, physical health, place of death, social role function, symptom burden, and time spent in hospital. The most frequently mentioned/used outcomes measurements tools were the Adult Social Care Outcomes Toolkit (ASCOT), EQ-5D, Gait Speed, Katz- ADL index, Patient Health Questionnaire (PHQ9), SF/RAND-36 and 4-Item Screening Zarit Burden Interview. CONCLUSIONS: Few studies have investigated the older people's opinion of what matters the most to them, which forms a knowledge-gap in the field. Future research should focus on providing older people a stronger voice in what they think matters the most to them.

Leveraging sensor-based functional outcomes to enhance understanding of the patient experience: challenges and opportunities.

INTRODUCTION: Sensor-based digital health technology (DHT) has emerged as a promising means to assess patient functioning within and outside clinical trials. Sensor-based functional outcomes (SBFOs) provide valuable insights that complement other measures of how a patient feels or functions to enhance understanding of the patient experience to inform medical product development. AREAS COVERED: This perspective paper provides recommendations for defining SBFOs, discusses the core evidence required to support SBFOs to inform decision-making, and considers future directions for the field. EXPERT COMMENTARY: The clinical outcome assessment (COA) development process provides an important starting point for developing patient-centered SBFOs; however, given the infancy of the field, SBFO development may benefit from a hybrid approach to evidence generation by merging exploratory data analysis with patient engagement in measure development. Effective SBFO development requires combining unique expertise in patient engagement, measurement and regulatory science, and digital health and analytics. Challenges specific to SBFO development include identifying concepts of interest, ensuring measurement of meaningful aspects of health, and identifying thresholds for meaningful change. SBFOs are complementary to other COAs and, as part of an integrated evidence strategy, offer great promise in fostering a holistic understanding of patient experience and treatment benefits, particularly in real-world settings.

Patient outcome quality indicators for older persons in acute care: original development data using interRAI AC-CGA.

BACKGROUND: A range of strategies are available that can improve the outcomes of older persons particularly in relation to basic activities of daily living during and after an acute care (AC) episode. This paper outlines the original development of outcome-oriented quality indicators (QIs) in relation to common geriatric syndromes and function for the care of the frail aged hospitalized in acute general medical wards. METHODS: Design QIs were developed using evidence from literature, expert opinion, field study data and a formal voting process. A systematic literature review of literature identified existing QIs (there were no outcome QIs) and evidence of interventions that improve older persons' outcomes in AC. Preliminary indicators were developed by two expert panels following consideration of the evidence. After analysis of the data from field testing (indicator prevalence, variability across sites), panel meetings refined the QIs prior to a formal voting process. SETTING: Data was collected in nine Australian general medical wards. PARTICIPANTS: Patients aged 70 years and over, consented within 24 h of admission to the AC ward. MEASUREMENTS: The interRAI Acute Care - Comprehensive Geriatric Assessment (interRAI AC-CGA) was administered at admission and discharge; a daily risk assessment in hospital; 28-day phone follow-up and chart audit. RESULTS: Ten outcome QIs were established which focused on common geriatric syndromes and function for the care of the frail aged hospitalized in acute general medical wards. CONCLUSION: Ten outcome QIs were developed. These QIs can be used to identify areas where specific action will lead to improvements in the quality of care delivered to older persons in hospital.

Improving Communication with Family Members during a Global Pandemic: Effect on Patient Experience.

OBJECTIVES: Communication with patients and their families/caregivers to facilitate informed decision making is an integral part of patient/family-centered care. Due to the high coronavirus disease 2019 (COVID-19) infection rates and limited personal protective equipment, healthcare systems were forced to restrict patient visitors, limit patient-provider interactions, and implement other changes in treatment protocols that disturbed traditional communications and risked eroding patient/family-centered care and adversely affected patient satisfaction. This article focuses on changes in patient experience in two dedicated COVID-19 units of an academic medical center located in the US South as a result of the enhanced communication process implemented specifically during the COVID-19 pandemic. METHODS: This retrospective quality improvement project used data from Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) surveys, fielded between January 1, 2021 and August 31, 2021, to understand the role of a proactive communication initiative in patient satisfaction. RESULTS: Our results show that HCAHPS scores for hospital unit hospital unit 4 (HSP4) in all categories increased over time, with the greatest improvements seen in the responsiveness of staff and care transition; however, HCAHPS scores for hospital unit HSP3 remained stable, with a small increase in responsiveness of staff. CONCLUSIONS: Our findings suggest that communication is a critical factor in patient satisfaction, demonstrating the efficacy of a swift and innovative initiative to improve communication with family/caregivers, which may have been linked to better patient experiences. Developing communication strategies is crucial for enhancing patient satisfaction.

Patient experience with bronchoscopy: topical versus monitored anesthesia.

BACKGROUND: This study aimed to compare patient experiences during bronchoscopy procedures using either topical anesthesia (TA) or monitored anesthesia care (MA). The goal was to identify circumstances where patients could achieve similar levels of tolerance and satisfaction using only TA, especially in resource-limited settings. METHODS: This study included consecutive patients who underwent bronchoscopy with either TA or MA. Data collected included demographics, indications for bronchoscopy, procedure time, and complications during the procedure. A quality assurance survey was administered to assess patient experience and satisfaction with both procedures. A pre-specified subgroup analysis was performed based on procedure invasiveness and time. RESULTS: This study enrolled 350 (TA 251; MA 99) patients, with an average age of 65 years. Main indications for bronchoscopy included tumor diagnosis (38%), esophageal cancer staging (18%), and pulmonary infection (17%). The average duration of the procedures was 20 min, with MA being associated with a significantly longer procedure time than TA (31 min vs. 16 min; P < 0.001). The overall satisfaction rating with bronchoscopy was significantly higher in the MA group (visual analogue scale, 8.9 vs. 8.2; P = 0.001). Subgroup analyses showed that when less invasive or shorter procedures were performed, TA patients reported tolerance and satisfaction levels comparable to MA patients. CONCLUSIONS: Bronchoscopy with MA offered patients a better experience and greater satisfaction; however, in settings with limited resources, TA alone may provide similar levels of patient tolerance and satisfaction during less invasive or shorter procedures.

Development and Validation of a Measure to Assess Patient Experiences With Video Care Encounters.

Importance: As video-based care expands in many clinical settings, assessing patient experiences with this care modality will help optimize health care quality, safety, and communication. Objective: To develop and assess the psychometric properties of the video visit user experience (VVUE) measure, a patient-reported measure of experiences with video-based technology. Design, Setting, and Participants: In this survey study, veterans completed a web-based, mail, or telephone survey about their use of Veterans Healthcare Administration (VHA) virtual care between September 2021 and January 2022. The survey was completed by patients who reported having a VHA video visit on their own device or a VHA-issued device and linked to VHA utilization data for the 6 months following the survey. Data analysis was performed from March 2022 to February 2023. Main Outcomes and Measures: The survey included 19 items about experiences with video visits that were rated using a 4-point Likert-type scale (strongly disagree to strongly agree). First, an exploratory factor analysis was conducted to determine the factor structure and parsimonious set of items, using the McDonald Omega test to assess internal consistency reliability. Then, a confirmatory factor analysis was conducted to test structural validity, and bivariate correlations between VVUE and VHA health care engagement were calculated to test concurrent validity. Finally, predictive validity was assessed using logistic regression to determine whether VVUE was associated with future VHA video visit use. Results: Among 1887 respondents included in the analyses, 83.2% (95% CI, 81.5%-84.8%) were male, 41.0% (95% CI, 38.8%-43.1%) were aged 65 years or older, and the majority had multiple chronic medical and mental health conditions. The exploratory factor analysis identified a 10-item single-factor VVUE measure (including questions about satisfaction, user-centeredness, technical quality, usefulness, and appropriateness), explaining 96% of the total variance, with acceptable internal consistency reliability (ω = 0.95). The confirmatory factor analysis results confirmed a single-factor solution (standardized root mean squared residual = 0.04). VVUE was positively associated with VHA health care engagement (ρ = 0.47; P < .001). Predictive validity models demonstrated that higher VVUE measure scores were associated with future use of video visits, where each 1-point increase on VVUE was associated with greater likelihood of having a video visit in subsequent 6 months (adjusted odds ratio, 1.04; 95% CI, 1.02-1.06). Conclusions and Relevance: The findings of this study of veterans using video visits suggest that a brief measure is valid to capture veterans' experiences receiving VHA virtual care.

Recreating the village: the patient experience with a hybrid model of Group Perinatal Care (GPPC) in an academic family health team.

BACKGROUND: Group prenatal care (GPC) has been shown to have a positive impact on social support, patient knowledge and preparedness for birth. We developed an interprofessional hybrid model of care whereby the group perinatal care (GPPC) component was co-facilitated by midwives (MW) and family medicine residents (FMR) and alternating individual visits were provided by family physicians (FP's) within our academic family health team (FHT) In this qualitative study, we sought to explore the impact of this program and how it supports patients through pregnancy and the early newborn period. METHODS: Qualitative study that was conducted using semi-structured telephone interviews with 18 participants who had completed GPPC in the Mount Sinai Academic Family Health Team in Toronto, Canada and delivered between November 2016 and October 2018. Interviews were audio-recorded and transcribed verbatim. Thematic analysis was conducted by team members using grounded theory. RESULTS: Four over-arching themes emerged from the data: (i) Participants highly valued information they received from multiple trusted sources, (ii) Participants felt well cared for by the collaborative and coordinated interprofessional team, (iii) The design of GPPC enabled a shared experience, allowing for increased support of the pregnant person, and (iv) GPPC facilitated a supportive transition into the community which positively impacted participants' emotional well- being. CONCLUSIONS: The four constructs of social support (emotional, informational, instrumental and appraisal) were central to the value that participants found in GPPC. This support from the team of healthcare providers, peers and partners had a positive impact on participants' mental health and helped them face the challenges of their transition to parenthood.

A scoping review examining patient experience and what matters to people experiencing homelessness when seeking healthcare.

BACKGROUND: Homelessness is associated with significant health disparities. Conventional health services often fail to address the unique needs and lived experience of homeless individuals and fail to include participatory design when planning health services. This scoping review aimed to examine areas of patient experience that are most frequently reported by people experiencing homelessness when seeking and receiving healthcare, and to identify existing surveys used to measure patient experience for this cohort. METHODS: A scoping review was undertaken reported according to the PRISMA-ScR 2020 Statement. Databases were searched on 1 December 2022: MEDLINE, EMBASE, APA PsychINFO and CINAHL. Included studies focused on people experiencing homelessness, healthcare services and patient experience, primary research, published in English from 2010. Qualitative papers and findings were extracted and synthesized against a modified framework based on the National Institute for Health and Care Excellence guidelines for care for people experiencing homelessness, the Institute of Medicine Framework and Lachman's multidimensional quality model. People with lived experience of homelessness were employed as part of the research team. RESULTS: Thirty-two studies were included. Of these, 22 were qualitative, seven quantitative and three mixed methods, from the United States of America (n = 17), United Kingdom (n = 5), Australia (n = 5) and Canada (n = 4). Health services ranged from primary healthcare to outpatient management, acute care, emergency care and hospital based healthcare. In qualitative papers, the domains of 'accessible and timely', 'person-centred', and values of 'dignity and respect' and 'kindness with compassion' were most prevalent. Among the three patient experience surveys identified, 'accessible and timely' and 'person-centred' were the most frequent domains. The least frequently highlighted domains and values were 'equitable' and 'holistic'. No questions addressed the 'safety' domain. CONCLUSIONS: The Primary Care Quality-Homeless questionnaire best reflected the priorities for healthcare provision that were highlighted in the qualitative studies of people experiencing homelessness. The most frequently cited domains and values that people experiencing homelessness expressed as important when seeking healthcare were reflected in each of the three survey tools to varying degrees. Findings suggest that the principles of 'Kindness and compassion' require further emphasis when seeking feedback on healthcare experiences and the domains of 'safety', 'equitable', and 'efficiency' are not adequately represented in existing patient experience surveys.

Patient experiences and perspectives of health service access for carpal tunnel syndrome in Aotearoa New Zealand: a normalisation process theory-informed qualitative study.

BACKGROUND: Early access to care for carpal tunnel syndrome (CTS) can avoid higher rates of surgery and permanent harm yet is often delayed, particularly for populations more likely to underutilise care. OBJECTIVE: We sought to explore patient experiences and perspectives of health service access for CTS to inform an equity-focussed co-design of a health service for improving early care access. METHODS: In this Normalisation Process Theory (NPT)-informed qualitative study we conducted semistructured in-depth interviews with 19 adults with experience of CTS. Recruitment prioritised New Zealand Maori, Pasifika, low-income, and rural populations. Data were analysed using deductive then inductive thematic analysis. RESULTS: We identified five major themes: (1) the 'Significant Impact of CTS' of the sense-making and relational work to understand the condition, deciding when to get care, compelling clinicians to provide care, and garnering help from others; (2) 'Waiting and Paying for Care'- the enacting, relational, and appraising work to avoid long wait times unless paying privately, particularly where quality of care was low, employment relations poor, or injury compensation processes faltered; (3) circumstances of 'Occupation and CTS Onset' whereby the burden of proof to relate onset of CT symptoms to occupation created excessive relational and enacting work; (4) the 'Information Scarcity' of good information about CTS and the high relational and appraising work associated with using online resources; (5) 'Negotiating Telehealth Perspectives' where telehealth was valued if it meant earlier access for all despite the challenges it held for many. CONCLUSION: Quality, culturally and linguistically responsive information and communication from clinicians and health services will improve equitable early access to CTS care including realising the potential of telehealth modes of care. Policy changes that reduce individual burden of proof in injury compensation claims processes, enable time off work to attend health appointments, and increase public funding for surgical resources would improve early access to CTS care particularly for Maori and Pacific populations and those in small and rural workplaces. NPT is valuable for understanding where opportunities lie to reduce inequitable delays to accessing care including the impact of racism, particularly for populations more likely to underutilise care.

Improving Data Infrastructure for Person-Centered Outcomes Research on Intellectual and Developmental Disabilities.

Individuals with intellectual and developmental disabilities (IDD) continue to experience disparities in health and well-being despite improved provisions of person-centered care. Patient-centered outcomes research (PCOR) translates evidence into practice for meaningful outcomes. This piece describes findings from an environmental scan and stakeholder outreach to identify and prioritize opportunities to enhance IDD PCOR data infrastructure. These opportunities include developing a standardized research definition; advancing data standards for service systems; improving capture of IDD at point of care; developing standardized outcome measures; and encouraging Medicaid data use for IDD research. Within this piece, we discuss the implications of addressing data gaps for enhanced research. While the identified activities provide a path towards advancing IDD PCOR data infrastructure, collaborative efforts between government, researchers, and others are paramount.

Why surveys are 'very hard': exploring challenges and insights for collection of authentic patient experience information with speakers of Australian First Nations languages.

INTRODUCTION: Health services collect patient experience data to monitor, evaluate and improve services and subsequently health outcomes. Obtaining authentic patient experience information to inform improvements relies on the quality of data collection processes and the responsiveness of these processes to the cultural and linguistic needs of diverse populations. This study explores the challenges and considerations in collecting authentic patient experience information through survey methods with Australians who primarily speak First Nations languages. METHODS: First Nations language experts, interpreters, health staff and researchers with expertise in intercultural communication engaged in an iterative process of critical review of two survey tools using qualitative methods. These included a collaborative process of repeated translation and back translation of survey items and collaborative analysis of video-recorded trial administration of surveys with languages experts (who were also receiving dialysis treatment) and survey administrators. All research activities were audio- or video-recorded, and data from all sources were translated, transcribed and inductively analysed to identify key elements influencing acceptability and relevance of both survey process and items as well as translatability. RESULTS: Serious challenges in achieving equivalence of meaning between English and translated versions of survey items were pervasive. Translatability of original survey items was extensively compromised by the use of metaphors specific to the cultural context within which surveys were developed, English words that are familiar but used with different meaning, English terms with no equivalent in First Nations languages and grammatical discordance between languages. Discordance between survey methods and First Nations cultural protocols and preferences for seeking and sharing information was also important: the lack of opportunity to share the 'full story', discomfort with direct questions and communication protocols that preclude negative or critical responses constrained the authenticity of the information obtained through survey methods. These limitations have serious implications for the quality of information collected and result in frustration and distress for those engaging with the survey. CONCLUSION: Profound implications for the acceptability of a survey tool as well as data quality arise from differences between First Nations cultural and communication contexts and the cultural context within which survey methods have evolved. When data collection processes are not linguistically and culturally congruent there is a risk that patient experience data are inaccurate, miss what is important to First Nations patients and have limited utility for informing relevant healthcare improvement. Engagement of First Nations cultural and language experts is essential in all stages of development, implementation and evaluation of culturally safe and effective approaches to support speakers of First Nations languages to share their experiences of health care and influence change.

Patient experiences of resection versus responsive neurostimulation for drug-resistant epilepsy.

This study explored illness experiences and decision-making among patients with epilepsy who underwent two different types of surgical interventions: resection versus implantation of the NeuroPace Responsive Neurostimulation System (RNS). We recruited 31 participants from a level four epilepsy center in an academic medical institution. We observed 22 patient clinic visits (resection: n = 10, RNS: n = 12) and conducted 18 in-depth patient interviews (resection: n = seven, RNS: n = 11); most visits and interviews included patient caregivers. Using an applied ethnographic approach, we identified three major themes in the experiences of resection versus RNS patients. First, for patients in both cohorts, the therapeutic journey was circuitous in ways that defied standardized first-, second-, and third- line of care models. Second, in conceptualizing risk, resection patients emphasized the permanent loss of "taking out" brain tissue whereas RNS patients highlighted the reversibility of "putting in" a device. Lastly, in considering benefit, resection patients perceived their surgery as potentially curative while RNS patients understood implantation as primarily palliative with possible additional diagnostic benefit from chronic electrocorticography. Insight into the perspectives of patients and caregivers may help identify key topics for counseling and exploration by clinicians.

Validation of French versions of the 15-item picker patient experience questionnaire for adults, teenagers, and children inpatients.

Objectives: No French validated concise scales are available for measuring the experience of inpatients in pediatrics. This study aims to adapt the adult PPE-15 to a pediatric population, and translating it in French, as well as to establish reference values for adults, teenagers, and parents of young children. Methods: Cultural adaptation involved forward and backward translations, along with pretests in all three populations. Dimensional structure and internal consistency were assessed using principal component analysis, exploratory factor analysis, and Cronbach's alpha. Construct validity was assessed by examining established associations between patient satisfaction and inpatient variables, including length of stay, and preventable readmission. Results: A total of 25,626 adults, 293 teenagers and 1,640 parents of young children completed the French questionnaires. Factor analysis supported a single dimension (Cronbach's alpha: adults: 0.85, teenagers: 0.82, parents: 0.80). Construct validity showed the expected pattern of association, with dissatisfaction correlating with patient- and stay-related factors, notably length of stay, and readmission. Conclusion: The French versions of the PPE-15 for adults, teenagers and parents of pediatric patients stand as valid and reliable instruments for gauging patient satisfaction regarding their hospital stay after discharge.

Improving the transgender patient experience in the breast imaging center.

PURPOSE: This review discusses how breast centers can optimize patient experience scores among transgender patients. FINDINGS: High patient experience scores impact patient care and compliance. Increased regulations have been enacted to ensure that health systems are effectively meeting the health concerns of sexual minorities. This will be reflected in the patient experience surveys. A leading patient survey will be assessed to help breast imaging centers optimize the transgender patient experience and question types will be provided. SUMMARY: Breast Centers can be equipped to enhance the transgender patient experience.

Patient experiences and perceived value of genetic testing in inherited retinal diseases: a cross-sectional survey.

This study evaluated patient experiences with genetic testing for inherited retinal diseases (IRDs) and the association between underlying knowledge, testing outcomes, and the perceived value of the results. An online survey was distributed to adults with IRDs and parents/guardians of dependents with IRDs who had had genetic testing. Data included details of genetic testing, pre- and post- test perceptions, Decision Regret Scale, perceived value of results, and knowledge of gene therapy. Of 135 responses (85% from adults with IRDs), genetic testing was primarily conducted at no charge through public hospitals (49%) or in a research setting (30%). Key motivations for genetic testing were to confirm IRD diagnosis and to contribute towards research. Those who had received a genetic diagnosis (odds ratio: 6.71; p < 0.001) and those self-reported to have good knowledge of gene therapy (odds ratio: 2.69; p = 0.018) were more likely to have gained confidence in managing their clinical care. For over 80% of respondents, knowing the causative gene empowered them to learn more about their IRD and explore opportunities regarding clinical trials. Key genetic counselling information needs include resources for family communications, structured information provision, and ongoing genetic support, particularly in the context of emerging ocular therapies, to enhance consistency in information uptake.

Investigating patient engagement associations between a postdischarge texting programme and patient experience, readmission and revisit rates outcomes.

OBJECTIVES: This study aimed (1) to examine the association between patient engagement with a bidirectional, semiautomated postdischarge texting programme and Hospital Consumer Assessment of Healthcare Providers and Systems (HCAHPS) survey outcomes, readmissions and revisit rates in a large health system and (2) to describe operational and clinical flow considerations for implementing a postdischarge texting programme. SETTING: The study involved 1 main academic hospital (beds: 2500+) and 6 community hospitals (beds: 190-400, averaging 300 beds per hospital) in Houston, Texas. METHODS: Retrospective, observational cohort study between non-engaged patients (responded with 0-2 incoming text messages) and engaged patients (responded with 3+ incoming, patient-initiated text messages) between December 2022 and May 2023. We used the two-tailed t-test for continuous variables and χ2 test for categorical variables to compare the baseline characteristics between the two cohorts. For the binary outcomes, such as the revisit (1=yes, vs 0=no) and readmissions (1=yes vs 0=no), we constructed mixed effect logistic regression models with the random effects to account for repeated measurements from the hospitals. For the continuous outcome, such as the case mix index (CMI), a generalised linear quantile mixed effect model was built. All tests for significance were two tailed, using an alpha level of 0.05, and 95% CIs were provided. Significance tests were performed to evaluate the CMI and readmissions and revisit rates. RESULTS: From 78 883 patients who were contacted over the course of this pilot implementation, 49 222 (62.4%) responded, with 39 442 (50%) responded with 3+ incoming text messages. The engaged cohort had higher HCAHPS scores in all domains compared with the non-engaged cohort. The engaged cohort used significantly fewer 30-day acute care resources, experiencing 29% fewer overall readmissions and 20% fewer revisit rates (23% less likely to revisit) and were 27% less likely to be readmitted. The results were statistically significant for all but two hospitals. CONCLUSIONS: This study builds on the few postdischarge texting studies, and also builds on the patient engagement literature, finding that patient engagement with postdischarge texting can be associated with fewer acute care resources. To our knowledge, this is the only study that documented an association between a text-based postdischarge programme and HCAHPS scores, perhaps owing to the bidirectionality and ease with which patients could interact with nurses. Future research should explore the texting paradigms to evaluate their associated outcomes in a variety of postdischarge applications.