Healthcare Experiences Of Patients Research Articles

The last year of life for patients dying from cancer vs. non-cancer causes: a retrospective cross-sectional survey of bereaved relatives

PurposeTo compare health care experiences of patients with cancer or non-cancer diseases in their last year of life.MethodsA cross-sectional post-bereavement survey was conducted using an adapted German version of the VOICES questionnaire (VOICES-LYOL-Cologne). Differences in the reported experiences were assessed using a two-sided Pearson’s chi-square test and Mann–Whitney U test.ResultsWe collected data from 351 bereaved relatives. More than half of non-cancer patients were not informed that their disease could lead to death (p < 0.001). When this was communicated, in 46.7% of non-cancer and 64.5% of cancer patients, it was reported by the hospital doctor (p = 0.050). In all, 66.9% of non-cancer and 41.6% of cancer patients were not informed about death being imminent (p < 0.001). On average, non-cancer patients had significantly fewer transitions and hospital stays in their last year of life (p = 0.014; p = 0.008, respectively). Non-cancer patients were treated more often by general practitioners, and cancer patients were treated more often by specialists (p = 0.002; p = 0.002, respectively). A substantially lower proportion of non-cancer patients were treated by at least one member of or in the setting of general or specialized palliative care (p < 0.001).ConclusionsNon-cancer patients experience disadvantages in communication regarding their care and in access to specialized palliative care in their last year of life compared to cancer patients. Regarding the assessment of palliative care needs and the lack of communication of an incurable disease, non-cancer patients are underserved. An early identification of patients requiring palliative care is a major public health concern and should be addressed irrespective of diagnosis.Trial registrationProspectively registered by the German Clinical Trials Register (DRKS00011925, data of registration: 13.06.2017).

Improving Gender-Affirming Surgery Terminology: A Multicenter Patient Survey.

To promote patient safety and build trust, plastic surgeons must use patient-centered language when discussing gender-affirming surgery. However, the existing terminology has not been evaluated from a patient perspective. This study sought to understand how gender-affirming surgery patients from 3 US geographic regions perceive common terminology. An anonymous, 24-item electronic survey was distributed to gender-affirming surgery patients seen in Tennessee, Colorado, and California. After institutional review board exemption, the survey instrument was pretested and piloted with gender-affirming surgery patients. Internal consistency was assessed by computation of Cronbach α (0.87). A total of 306 participants completed the survey: 68 from a Tennessee academic center (response rate, 56%), 131 from a California private practice (response rate, 8%), and 107 from a Colorado academic center (response rate, 53%). A greater proportion of respondents felt the terms "top surgery" and "bottom surgery" were appropriate (83% and 82%, respectively) relative to "chest surgery" and "genital surgery" (41% and 30%, respectively). More respondents favored the phrase "gender-affirming surgery" than "gender-confirming surgery" (86% vs 67%). Nearly half (43%) perceived the phrase "sex reassignment surgery" as inappropriate. Most respondents (80%) preferred their surgeon ask for their pronouns. Optimizing communication is an actionable way for plastic surgeons to improve the healthcare experiences of gender-affirming surgery patients. "Top surgery" and "bottom surgery" are favored terms, and "gender-affirming surgery" is the preferred name for this discipline. Language preferences should be openly discussed with each patient to ensure professional communication.

Home Care Use and Out-of-Hospital Death in Pancreatic Cancer Patients: A Retrospective Cohort Study.

Objective: This study aimed to determine the factors associated with usage of home care, including palliative home care, in patients with pancreatic cancer in Ontario. In addition, this study attempted to investigate factors associated with early-onset palliative home care as well as the impact of home care services on survival and out-of-hospital death. Methods: The Ontario Cancer Registry (OCR) was used to identify and capture basic patient/cancer characteristics of index cases of pancreatic cancer diagnosed between April first, 2010 and March 31st, 2016. Patients that received home care were identified using the Home Care Database (HCD) and stratified into general, transition-to-palliative, and early-onset palliative home care. Logistic regressions were used to describe determinants of home care use and determinants of out-of-hospital death. Results: A total of 6888 pancreatic cancer patients met eligibility criteria for this study. A high proportion of patients (83.7%) received home care, including palliative home care (56.8%). In general, older patients (OR = 3.07) and those with more advanced malignancy (OR = 4.98) for stage 4 versus stage 1) had greater odds of receiving palliative home care. Patients receiving home care (P < .01) and those residing in rural regions (P < .01) had greater odds of out-of-hospital death. Conclusion: A large proportion of patients with pancreatic cancer are directed to home care and those that do are more likely to die outside of hospital. Age and stage at diagnosis are significant predictors of home care use. Differences exist in the healthcare experience of patients depending on if they receive home care services and the type of home care.

"I Don't Want to Spend the Rest of my Life Only Going to a Gender Wellness Clinic": Healthcare Experiences of Patients of a Comprehensive Transgender Clinic.

BackgroundTransgender individuals are less likely to have had a primary care visit in the last year than cisgender individuals. While the importance of multidisciplinary clinics for transgender care has been established, little is known about the healthcare experiences of transgender patients with these clinics.ObjectiveTo describe how patients experience transgender clinics and how these experiences compare to those experiences in other settings.ParticipantsTwenty-one adult patients of a gender health program.Design and ApproachSemi-structured interviews of transgender patients. The interviews focused on two domains: healthcare experiences and relationships with healthcare providers.Key ResultsOverall, transgender patients expressed a need for healthcare services, particularly for primary care, that are partially met by the comprehensive care clinic model. Limitations in access included the lack of willing providers, where the patients live, and long wait times for appointments. Participants recounted a range of experiences, both positive and negative, with providers outside of the transgender clinic, but only positive experiences to share about providers from the transgender clinic.ConclusionOutside specialty transgender settings, many patients had negative experiences with providers who were unwilling or unable to provide care. This study speaks to the need for primary care providers who can and will treat transgender patients, as well as the need for healthcare spaces that feel safe to transgender patents.Supplementary InformationThe online version contains supplementary material available at 10.1007/s11606-022-07408-5.

Using Data Integration to Improve Health and Welfare Insights.

The Australian Institute of Health and Welfare (AIHW) is a leader in the provision of high-quality health and welfare information. Its work program has built a strong evidence base for better decisions that deliver improved health and welfare outcomes. The evolution of the AIHW’s data integration program has exemplified innovation in identifying and addressing key information gaps, as well as responsiveness to opportunities to develop and capture the data required to inform national priorities. The AIHW conducts data integration in partnership with data custodians and specialists in integration and analysis. A linkage project requiring the integration of Australian government data must be undertaken by an accredited integrating authority. The AIHW has met stringent criteria covering project governance, capability, and data management to gain this accreditation. In this capacity, the AIHW is trusted to integrate Australian government data for high-risk research projects. To date, the AIHW’s integration projects have generated improved research outcomes that have identified vulnerable population groups, improved the understanding of health risk factors, and contributed to the development of targeted interventions. These projects have fostered new insights into dementia, disability, health service use, patient experiences of healthcare, and suicide. Upcoming projects aim to further the understanding of interrelationships between determinants of wellbeing.

Insights for conducting large-scale surveys with veterans who have experienced homelessness

ABSTRACT Surveys of underserved patient populations are needed to guide quality improvement efforts but are challenging to implement. The goal of this study was to describe recruitment and response to a national survey of Veterans with homeless experience (VHE). We randomly selected 14,340 potential participants from 26 U. S. Department of Veterans Affairs (VA) facilities. A survey contract organization verified/updated addresses from VA administrative data with a commercial address database, then attempted to recruit VHE through 4 mailings, telephone follow-up, and a $10 incentive. We used mixed-effects logistic regressions to test for differences in survey response by patient characteristics. The response rate was 40.2% (n = 5766). Addresses from VA data elicited a higher response rate than addresses from commercial sources (46.9% vs 31.2%, p < .001). Residential addresses elicited a higher response rate than business addresses (43.8% vs 26.2%, p < .001). Compared to non-respondents, respondents were older, less likely to have mental health, drug, or alcohol conditions, and had fewer VA housing and emergency service visits. Collectively, our results indicated a national mailed survey approach is feasible and successful for reaching VA patients who have recently experienced homelessness. These findings offer insight into how health systems can obtain perspectives of socially disadvantaged groups. Abbreviations: H-PACTS: Homeless-Patient Aligned Care Teams; SHEP: Survey of Healthcare Experiences of Patients; SRG: Strategic Research Group; USPS: United States Postal Service; VA: U.S. Department of Veterans Affairs; VHE: veterans with homeless experience

Criterion-Based Measurements of Patient Experience in Health Care

Criterion-Based Measurements of Patient Experience in Health Care

Attitudes and Intentions of US Veterans Regarding COVID-19 Vaccination

Compared with the general population, veterans are at high risk for COVID-19 and have a complex relationship with the government. This potentially affects their attitudes toward receiving COVID-19 vaccines. To assess veterans' attitudes toward and intentions to receive COVID-19 vaccines. This cross-sectional web-based survey study used data from the Department of Veterans Affairs (VA) Survey of Healthcare Experiences of Patients' Veterans Insight Panel, fielded between March 12 and 28, 2021. Of 3420 veterans who were sent a link to complete a 58-item web-based survey, 1178 veterans (34%) completed the survey. Data were analyzed from April 1 to August 25, 2021. Veterans eligible for COVID-19 vaccines. The outcomes of interest were veterans' experiences with COVID-19, vaccination status and intention groups, reasons for receiving or not receiving a vaccine, self-reported health status, and trusted and preferred sources of information about COVID-19 vaccines. Reasons for not getting vaccinated were classified into categories of vaccine deliberation, dissent, distrust, indifference, skepticism, and policy and processes. Among 1178 respondents, 974 (83%) were men, 130 (11%) were women, and 141 (12%) were transgender or nonbinary; 58 respondents (5%) were Black, 54 veterans (5%) were Hispanic or Latino, and 987 veterans (84%) were non-Hispanic White. The mean (SD) age of respondents was 66.7 (10.1) years. A total of 817 respondents (71%) self-reported being vaccinated against COVID-19. Of 339 respondents (29%) who were not vaccinated, those unsure of getting vaccinated were more likely to report fair or poor overall health (32 respondents [43%]) and mental health (33 respondents [44%]) than other nonvaccinated groups (overall health: range, 20%-32%; mental health: range, 18%-40%). Top reasons for not being vaccinated were skepticism (120 respondents [36%] were concerned about side effects; 65 respondents [20%] preferred using few medications; 63 respondents [19%] preferred gaining natural immunity), deliberation (74 respondents [22%] preferred to wait because vaccine is new), and distrust (61 respondents [18%] did not trust the health care system). Among respondents who were vaccinated, preventing oneself from getting sick (462 respondents [57%]) and contributing to the end of the COVID-19 pandemic (453 respondents [56%]) were top reasons for getting vaccinated. All veterans reported the VA as 1 of their top trusted sources of information. The proportion of respondents trusting their VA health care practitioner as a source of vaccine information was higher among those unsure about vaccination compared with those who indicated they would definitely not or probably not get vaccinated (18 respondents [26%] vs 15 respondents [15%]). There were no significant associations between vaccine intention groups and age (χ24 = 5.90; P = .21) or gender (χ22 = 3.99; P = .14). These findings provide information needed to develop trusted messages used in conversations between VA health care practitioners and veterans addressing specific vaccine hesitancy reasons, as well as those in worse health. Conversations need to emphasize societal reasons for getting vaccinated and benefits to one's own health.

7.N. Workshop: Engaging the young stakeholders in planning for recovery from the Covid-19 pandemic

Health in children and young people (CYP) has been impacted by the COVID-19 pandemic. Restrictions in mobility and social contacts limited children and young people in their social development and led to adverse psychological impact. Rising rates of poverty because of lockdowns have been shown to particularly impact families with children, which may exacerbate already existing health inequalities. Containment policies have decreased access to health services and decreased support for CYP from health and social care professionals during the pandemic, which have posed a significant threat to children and young people's physical health, mental and emotional health. To ensure that policies aimed at mitigating the impact of the pandemic on CYP are relevant, it is vital that the voices of CYP are heard. Article 12 of UNCRC establishes the right of a child to express their views in all matters affecting them and for those to be given appropriate consideration. This is a right that is largely not upheld in policymaking, and therefore it is important that the public health sector as advocates for children and young people (CYP) lead on this.The aims of this skill building workshop are to: Showcase positive examples of engagement of CYP in policymakingGain knowledge on the practicalities to make engagement with CYP a mutually beneficial experience Workshop Format The session will be chaired by a young person to role-model the inclusion of CYP, this workshop advocates for.Professor Sonia Saxena, President of the EUPHA section on Child and Adolescent Public Health, will open the session with key points on the importance of engaging CYP in policy making during the COVID-19 pandemic and beyond.A further two presentations will be delivered by young people who will reflect on their own experience of engagement with policy/research and utilise the lessons learnt to improve CYP engagement in the future.This will be followed by a presentation by a paediatric doctor reflecting on their role in engaging with children and young people to develop a national healthcare patient experience guideline.This series of short presentations will be followed by an interactive case scenario on CYP engagement during the C-19 pandemic. The case study will aim to discuss some of the key practicalities to consider when engaging children and young people in policy making.The session will close with a short panel discussion with the presenters and consensus vote by attendees of next steps to take the learning from the workshop forward. Workshop proceedings will be written up and submitted for publication in a peer-reviewed journal. Twitter hashtags will be devised to allow attendees to share work they embark upon within an online community. This community will also be fostered through meetings supported by EUPHA where members can share best practice and solutions to problems encountered.Speakers/Panelists Sonia Saxena Imperial College London, London, UK Rakhee Shah Imperial College, London, UK Gabrielle Mathews Imperial College London, London, UK Bea Albermann University of Zurich, Zurich, Switzerland Jinane Ghattas UCLouvain, Saint-Josse-ten-Noode, Belgium Key messages COVID19 will have a large impact on children and young people’s health.Engaging children and young people to co-produce policies that affect them, when planning for recovery from the pandemic is crucial in ensuring our policies and research are most impactful.

Receiving healthcare for drug-resistant TB: a cross-sectional survey from Pakistan.

To describe and quantify patients' self-reported experiences of receiving healthcare from Pakistan's Programmatic Management of Drug-Resistant Tuberculosis (PMDT) model of care, and to understand these experiences within the broader context of Pakistan's health system. This was a cross-sectional survey of patients attending three PMDT clinics in Khyber-Pakhtunkhwa Province in Pakistan. The median consultation time at the PMDT clinics was 10 minutes. In their most recent visit to the PMDT clinic, 34.9% of patients spent >40% of their monthly income to access treatment. To specify, 71% of patients reported spending out-of-pocket for ancillary medicines and 44.7% for laboratory tests. In 10.5% of cases, medicines for drug-resistant TB (DR-TB) were dispensed without the patient attending the clinic. Only 43.7% of treatment supporters regularly accompanied patients to the clinic, and 6% supervised the patient's intake of medicines. Disbursement of financial support was irregular in 98.6% of cases. Only 6.2% of patients received their daily injections from a public facility, the rest went elsewhere. Several shortcomings in PMDT services, including hurried consultations, irregularities in financial support, and gaps in Pakistan's broader health system undermined healthcare experience of patients with DR-TB. To improve health outcomes and patients' care experience these service gaps need to be addressed.

Veteran Experiences with Telehealth

Research ObjectiveIn FY18‐19, VA Office of Rural Health initiated a pilot program to increase access to services in underserved areas by funding 13 telehealth hubs. Understanding Veterans' experiences with telehealth hubs is essential to its delivery, especially in its scale‐up nationally and in response to the pandemic in FY20. We examine characteristics and ratings of care among Veterans with telehealth hub visits compared to usual primary care (PC) during the pilot program.Our objectives are to: Understand Veteran experiences with access, care coordination, comprehensiveness and primary care provider (PCP) communication during a telehealth pilot program. Examine Veteran characteristics associated with telehealth hub visits during a pilot program. Study DesignRegression analysis of a cross‐sectional data: VA Survey of Healthcare Experiences of Patients – Patient‐Centered Medical Home (SHEP‐PCMH), which uses Consumer Assessment of Healthcare Providers and Systems (CAHPS) questionnaires to survey Veterans on their healthcare experiences. We derived dichotomous outcomes from SHEP‐PCMH composite indices, indicating optimal experiences with access, care coordination, PCP communication, comprehensiveness (based on the percentages of responses that fall in the top category (Always or Yes) and PCP rating (9 or 10 out of 10). Key predictors were telehealth hub v. usual care index visit and proportion of telehealth hub visits in 6 months prior to the index visit. Other covariates included age, gender, race/ethnicity, education, number of PC visits in past year, self‐rated overall and mental health, and year of visit. We conducted multivariate logistic regression analyses to predict optimal care experiences, controlling for demographics, healthcare use, health status and year.Population StudiedVeterans receiving care at VA PC clinics offering telehealth hub visits during FY2018‐2019.Principal FindingsIn FY2018‐2019, 3201 out of 57,793 Veterans had a telehealth hub index visit. Telehealth hub utilization 6 months prior to index visit: 0.25% usual care v. 83% telehealth. Compared to usual care, the telehealth hub group was significantly older (age ≥ 65: 60% telehealth, 50.5% usual care), had fewer PC visits (0–1 visits: 69% telehealth, 56% usual care). In multivariate models, we failed to detect statistically significant difference between telehealth hub and usual care groups for the composite measures of Veteran experiences. Adjusted Odds Ratio (AOR) (95% CI): 0.68 (0.12–3.81), 0.3 (0.07–1.35), 1.55 (0.48–4.95), 0.47 (0.18–1.22), and 0.66 (0.18–2.49) for access, coordination, PCP communication, comprehensiveness, and PCP rating, respectively. Older age and greater number of PC visits were associated with greater likelihood of optimal care ratings; fair/poor overall and mental health were associated with lower likelihood of optimal experiences.ConclusionsCompared to usual care, telehealth hub users did not differ in likelihood ratings of optimal care experience although they are distinct in their demographics and healthcare utilization. Further study is needed, since the population of telehealth hub users is quite different from usual care population during pilot program.Implications for Policy or PracticeTelehealth hub visits were not associated with decrements in care experience. Our findings suggest that Veterans' experiences with tele‐health during the COVID‐19 pandemic might be similar to usual care. This is of importance since the Covid‐19 pandemic necessitates expanded use of virtual care to ensure patient safety.Primary Funding SourceDepartment of Veterans Affairs.

Health Care Experiences of Patients with Nonbinary Gender Identities.

The primary purpose of this study was to characterize the health care experiences of diverse patients with nonbinary gender identities across a range of geographic locations. A secondary aim was to use the qualitative findings to inform recommendations for clinics and providers to create gender-affirming health care environments for nonbinary patients. We conducted 3 focus group discussions with 7-9 participants, for a total of 24 unique participants. To be eligible, participants were required to be 18 years of age or older, live in the United States, speak English, have the ability to access Zoom in a private room, have a nonbinary gender identity, and be able to attend one of three scheduled focus groups. Participants reported frequent negative health care experiences, including misgendering, invalidation, and pathologization, even within clinics that signaled alliance with transgender communities. Participants described strategies they use to cope with negative experiences, including health care avoidance, identity concealment, and seeking out providers that are matched in terms of gender minority status and/or race. Recommendations for the provision of gender-affirming health care for nonbinary patients include nonbinary-inclusive intake forms and electronic health records, having providers be proactive in eliciting preferred names and pronouns, and requiring education for providers and staff at all levels on the provision of nonbinary-inclusive gender-affirming health care.

Inequalities in Health Care Experience of Patients with Chronic Conditions: Results from a Population-Based Study.

Patients’ experience is an acknowledged key factor for the improvement of healthcare delivery quality. This study aims to explore the differences in healthcare experience among patients with chronic conditions according to individual sociodemographic and health-related variables. A population-based and cross-sectional study was conducted. The sample consisted of 3981 respondents of the Basque Health Survey (out of 8036 total respondents to the individual questionnaire), living in the Basque Country, aged 15 or older, self-reporting at least one chronic condition. Patient experience was assessed with the Instrument for Evaluation of the Experience of Chronic Patients questionnaire, which encompasses three major factors: interactions between patients and professionals oriented to improve outcomes (productive interactions); new ways of patient interaction with the health care system (the new relational model); and the ability of individuals to manage their care and improve their wellbeing based on professional-mediated interventions (self-management). We conducted descriptive and regression analyses. We estimated linear regression models with robust variances that allow testing for differences in experience according to sociodemographic characteristics, the number of comorbidities and the condition (for all chronic or for chronic patients’ subgroups). Although no unique inequality patterns by these characteristics can be inferred, females reported worse global results than males and older age was related to poorer experience with the new relational model in health care. Individuals with lower education levels tend to report lower experiences. There is not a clear pattern observed for the type of occupation. Multimorbidity and several specific chronic conditions were associated (positive or negatively) with patients’ experience. Health care experience was better in patients with greater quality of life. Understanding the relations among the patients’ experience and their sociodemographic and health-related characteristics is an essential issue for health care systems to improve quality of assistance.

Quality of life in breast cancer patients with cancer treatment-related cardiac dysfunction: a qualitative study.

Although improved breast cancer (BC) treatment has decreased mortality, these anti-cancer regimens may have serious cardiovascular side effects that affect patients' long-term prognosis and quality of life (QoL). BC patients with cancer treatment-related cardiac dysfunction (CTRCD) can suffer from a variety of symptoms, such as dyspnoea and fatigue. The impact of CTRCD after BC treatment on patients' daily life has not been qualitatively explored yet. This study aims to explore the influence of CTRCD on QoL of women with BC, as defined by the concept of positive health. Second, we aim to evaluate the personal experience with cardiac surveillance during the BC trajectory. A qualitative study with semi-structured interviews was conducted and thematically analysed to explore the QoL and healthcare experiences of BC patients with CTRCD. Twelve patients participated in this study. Five themes are selected in response to the study objective: (i) patients: overwhelming fatigue, (ii) patients: mental burden of anxiety, (iii) social setting: lack of understanding and acceptance, (iv) medical specialists: lack of knowledge and acknowledgement, and (v) patients: need for personalized care. This study identified core components of the impact CTRCD has on the QoL of BC patients. Patients experienced an increased health-related burden due to CTRCD, affecting their physical, social, and psychosocial well-being. Healthcare experiences were largely affected by a lack of acknowledgement and professional communication. Patients underlined the need for personalized care during follow-up.

Methods for capturing patient experience and satisfaction in healthcare services.

Patient experience in healthcare has long been recognised in the UK and internationally as a crucial benchmark for assessing quality of care in healthcare settings. It is increasingly becoming part of a nurse's role to conduct, analyse and present the findings of patient satisfaction audits and research projects, and to implement changes to services based on the data collected. To undertake these audits and projects effectively, nurses require knowledge of how to use various data collection methods and research tools, determine their validity and reliability, and minimise bias. This article provides information about these areas, with the aim of assisting nurses in designing and implementing patient satisfaction audits and research projects in their clinical area, which can subsequently be used to improve patient experience.

Impact of Advanced Diabetes Centers on the healthcare experience of patients with type 2 diabetes using the IEXPAC tool

AimsTo determine the experience with healthcare among patients with type 2 diabetes according to the assistance model provided in their primary care centers, and to determine factors related with their experience. MethodsThis was a cross-sectional study performed in patients with type 2 diabetes with cardiovascular or renal complications. The patients were divided in two groups according to whether they had been attended in Advanced Diabetes centers (ADC) or the traditional assistance centers. Patient’s healthcare experience was assessed with the “Instrument for Evaluation of the Experience of Chronic Patients” (IEXPAC) questionnaire, with possible scores ranging from 0 (worst experience) to 10 (best experience). ResultsA total of 451 patients (215 from ADC and 236 from traditional assistance centers) were included. The mean overall IEXPAC scores were 5.9 ± 1.7 (ADC) and 6.0 ± 1.9 (traditional assistance centers; p = 0.82). In the multivariant analyses, in ADC, the regular follow-up by the same physician (p = 0.01) and follow-up by a nurse (p = 0.01), were associated with a better patient experience, whereas receiving a higher number of medications with a worse patient experience (p = 0.04). In the traditional assistance centers, only the regular follow-up by the same physician was associated with a better experience (p = 0.02). Patients from ADC centers reported a higher score in the quality of life scale (69.1 ± 16.5 vs 64.6 ± 17.5; p = 0.008). ConclusionsIn general, the healthcare experience of type 2 diabetic patients with their sanitary assistance can be improved. Patients from ADC centers report a higher score in the quality of life scale.

Rural Veterans' Experiences With Outpatient Care in the Veterans Health Administration Versus Community Care.

The 2014 Veterans Access, Choice and Accountability Act was intended to improve Veterans' access to timely health care by expanding their options to receive community care (CC) paid for by the Veterans Health Administration (VA). Although CC could particularly benefit rural Veterans, we know little about rural Veterans' experiences with CC. The objective of this study was to compare rural Veterans' experiences with CC and VA outpatient health care services to those of urban Veterans and examine changes over time. Retrospective, cross-sectional study using data from the Survey of Healthcare Experiences of Patients (SHEP) and VA Corporate Data Warehouse. Subjects: All Veterans who responded to the SHEP survey in Fiscal Year (FY) 16 or FY19. Outcomes were 4 measures of care experience (Access, Communication, Coordination, and Provider Rating). Independent variables included care setting (CC/VA), rural/urban status, and demographic and clinical characteristics. Compared with urban Veterans, rural Veterans rated CC the same (for specialty care) or better (for primary care). Rural Veterans reported worse experiences in CC versus VA, except for specialty care Access. Rural Veterans' care experiences improved between FY16 and FY19 in both CC and VA, with greater improvements in CC. Rural Veterans' reported comparable or better experiences in CC compared with urban Veterans, but rural Veterans' CC experiences still lagged behind their experiences in VA for primary care. As growing numbers of Veterans use CC, VA should ensure that rural and urban Veterans' experiences with CC are at least comparable to their experiences with VA care.

Factors Influencing Healthcare Experience of Patients with Self-Declared Diabetes: A Cross-Sectional Population-Based Study in the Basque Country.

Background: Diabetes affects more than 400 million people around the world. Few published studies incorporate questionnaires that comprehensively cover every aspect of a patient’s experience of healthcare. This study analyzes potential differences in the healthcare experience for patients with diabetes based on their sociodemographic, economic, and health-related characteristics from a comprehensive viewpoint in an integrated delivery system. Methods: We used data from the 2018 Basque Health Survey, which includes a questionnaire for the measurement of the experiences of patients with chronic problems. We present descriptive and regression analyses to explore differences by sociodemographic, economic, and health-related characteristics of patients’ experiences with different healthcare services. Results: Having diabetes plus other comorbidities significantly decreases the quality of the experience with all healthcare services and decreases the global healthcare experience score. When comorbidities are present, the elderly seem to report better experiences than younger patients. Some differences in experience can be explained by sociodemographic and economic factors. No differences exist between conditions co-occurring with diabetes. Conclusion: Patients with diabetes who also suffer from other conditions report worse experiences than individuals who suffer from diabetes only. No specific conditions explain the differences in care experience.

Reexamining “Defining Patient Experience”: The human experience in healthcare

In 2014, the authors came together with the explicit purpose of understanding how people were defining patient experience.1 Our broad review and analysis of the literature led us to a few critical points. One, as our review showed, there was an absence of a commonly used definition around patient experience in healthcare. Two, while consistency in the use of one definition was not revealed, there was great alignment around central components seen as critical to patient experience. Three, we highlighted the recurrence of key concepts from the literature that are also found in the definition offered by The Beryl Institute that include: ‘sum of all interactions,’ ‘the influence of organizational culture,’ ‘patient perceptions,’ and the importance of considering experiences ‘across the continuum of care.’ While this initial inquiry took place seven years ago, we would suggest that these core definitional concepts are no less relevant today and, in fact, may have grown in significance, as those in healthcare have come to better understand the scope and scale of experience. Hence, the purpose of this paper is to assess how the definition has evolved to encompass novel and timely viewpoints that complement the original definition and understand how - and in what ways - the definition has advanced. The definition of patient experience was a significant milestone. It provided simple language for the truly complex nature of what patient experience is and has ultimately served as a foundation for framing the human experience in healthcare. The human experience in healthcare integrates the sum of all interactions, every encounter among patients, families and care partners and the healthcare workforce. It is driven by the culture of healthcare organizations and systems that work tirelessly to support a healthcare ecosystem that operates within the breadth of the care continuum into the communities they serve and the ever-changing environmental landscapes in which they are situated. The human experience in healthcare ultimately is the fruit born from the core of patient experience itself. Experience Framework This article is associated with the Culture & Leadership lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework). Access other PXJ articles related to this lens. Access other resources related to this lens

Remote primary care consultations for people living with dementia during the COVID-19 pandemic: experiences of people living with dementia and their carers.

BackgroundCOVID-19 has accelerated remote healthcare provision in primary care, with changes potentially permanent. The implementation of remote provision of health care needs to be informed by vulnerable populations, such as people living with dementia.AimTo understand the remote healthcare experiences of patients living with dementia and their family carers during the COVID-19 pandemic.Design and settingQualitative interviews with community-based patients living with dementia and their carers were carried out between May–August 2020, while the COVID-19 pandemic was ongoing in England.MethodSemi-structured interviews were conducted remotely by telephone or video call with 30 patients living with dementia and 31 carers. Data were analysed using thematic analysis.ResultsThree main themes were derived relating to: proactive care at the onset of COVID-19 restrictions; avoidance of healthcare settings and services; and difficulties with remote healthcare encounters. People living with dementia and their carers felt check-up calls were reassuring but limited in scope and content. Some avoided healthcare services, wishing to minimise COVID-19 risk or reduce NHS burden, or encountering technological barriers. Difficulties in remote consultations included lack of prompts to remember problems, dealing with new emerging difficulties, rescheduling/missed calls, and inclusion of the voice of the person with dementia.ConclusionWhile remote consultations could be effective, proactive calls could be more structured around needs. Consideration should be given to replace non-verbal prompts to describe problems, particularly for new health concerns. In continuing remote consultations, it is important to facilitate engagement with patients living with dementia and their carers to ensure good practice.