Patient Experience Research Articles

Association Between Patient Experience and Medical Dispute Costs.

Patient experience is increasingly being recognised as a core component of quality healthcare. It captures various dimensions of a patient's interaction with healthcare providers that may influence patient satisfaction and ultimately impact the incidence of complaints or disputes. However, only limited research has investigated the financial implications of patient experience, particularly its association with medical dispute costs. This study sought to understand whether patient experience scores correlate with medical dispute costs and to provide insights into cost-effective strategies in patient-centred care. We used a dataset that included patient experience scores and medical dispute costs over a defined period. Descriptive analysis, frequency distribution of disputes, and odds ratios were calculated to examine the initial patterns. Logistic regression models were applied using both logged and ratio-based dispute-cost transformations to assess the relationship between patient experience and dispute costs. The models were stratified according to patient experience type. The analysis revealed that higher patient experience scores were generally associated with reduced medical dispute costs, with significant relationships observed in specific models. In a cost-ratio model, doctor interactions showed a strong correlation with reduced dispute costs. For nurses, significant associations were observed in a logged cost model, suggesting that both nurses and doctors contributed uniquely to dispute costs. This study demonstrated that improving specific domains of patient experience, such as patient rights, may serve as a cost-effective strategy for reducing medical dispute costs. These findings emphasize the importance of fostering patient-centred care and addressing institutional and contextual factors. These insights provide a foundation for targeted strategies to enhance patient satisfaction while promoting financial and operational stability in healthcare institutions.

A Health System-Wide Approach to Addressing Unmet Social Needs Among Children With Asthma.

It is well known that unhealthy housing, financial hardships, and lack of access to resources contribute to higher rates of asthma morbidity and health disparities. Despite extensive literature demonstrating that social factors drive health inequities in pediatric asthma, and although general social risk screening has been used in hospital settings to identify and address health-related social risks, asthma-specific screening models have not been well described. Furthermore, whereas social risk screening involves the identification of specific adverse conditions associated with poor health outcomes, social needs screening shifts the focus to patient and family preferences and priorities, which may facilitate more efficient, effective, and equitable provision of resources. Using the Exploration, Preparation, Implementation, and Sustainment framework, we describe the process of implementing a health system-wide, asthma-specific social needs checklist. The community-based asthma program at our institution had previously implemented social needs screening in 2018, and we report on the process of expanding its use to multiple settings at a single urban pediatric medical center. We evaluate the feasibility, acceptability, and sustainability of implementation in these new settings and describe the social needs of families of children with asthma at our institution. Screening was broadly acceptable to families. Feasibility and sustainability varied by site and was more successful at sites with leadership buy-in and dedicated staffing. Overall, screening revealed a high burden of unmet social needs. Future work includes addressing barriers to screening and studying the impact of a system-wide, longitudinal approach on patient experience and outcomes.

Patient Experiences of Bullous Pemphigoid: Symptoms and Health-Related Quality of Life Impacts.

Bullous pemphigoid (BP) is a chronic autoimmune blistering disorder that imposes a significant health-related quality of life burden on the lives of patients; however, there are limited data on patient experiences. We conducted qualitative open-ended interviews of patients from the USA, Spain, and France, to understand BP symptoms and impacts, and develop a conceptual model. Adults with a confirmed BP diagnosis were included. Patients with pemphigus or drug-induced BP were excluded. Thirty participants were recruited. The mean (standard deviation) age was 63.6 (16.0) years. Eleven signs and symptoms and 24 impacts were reported; six signs and symptoms, and 13 impacts affected ≥ 50% of participants with an average disturbance rating of ≥ 5 out of 10 (scale of 0 to 10 [0, not disturbing; 10, extremely disturbing]). All participants reported typical signs and symptoms of classic and/or mucosal BP. Overall, five of six salient symptoms and four of 13 salient impacts had an average disturbance rating of ≥ 7.5/10, indicating that BP is highly burdensome. Regarding corticosteroids, participants expressed a strong desire to avoid taking them again, due to the associated unwanted side effects. The conceptual model presented here can be the basis for endpoint selection in studies of new therapies for BP.

Hallways Feel Like Homelessness: The Geriatric Boarder Experience.

Boarding in the Emergency Department (ED) is associated with increased delirium, morbidity, and mortality. Geriatric patients are especially vulnerable to these harms and are more likely to board for a prolonged time. Although multiple studies have investigated clinical outcomes for older adults, we present the first study examining the subjective experience of geriatric boarders through qualitative methods. We conducted semi-structured interviews between June 2024 and July 2024 at a large urban academic hospital. We recruited patients over the age of 65 boarding in the ED for over four hours after an inpatient bed request. Patients were located in hallway care spaces, ED rooms, or in a dedicated unit for ED boarding patients. Interviews were transcribed, coded, and discussed for themes using grounded theory. We halted interviews when we reached thematic saturation. We recruited 26 participants (mean age 77). Four themes emerged: (1) Care space location matters, and border units are far preferable to hallways, (2) patients were able to compartmentalize the kindness of the hospital staff and quality of medical care from their environment, (3) boarding elicits feelings of powerlessness, and (4) older adults felt acuity of condition and dementia or frailty, rather than age, should determine who should be prioritized for an inpatient room. Our sample of older adults felt stressed and powerless while boarding. They especially struggled in hallway care spaces and preferred dedicated units for boarding. They felt comorbidities and acuity of condition should determine prioritization for inpatient beds rather than age. These insights can help guide health systems how to improve the boarding experience for geriatric patients. More research is needed to understand the older adult's experience boarding in the ED and how to improve it.

Redefining value assessment and healthcare funding priorities for medicines: the journey to patient-centric decision making in APAC - a systematic literature review.

This study explored patient involvement in healthcare decision-making in the Asia Pacific region (APAC) by identifying roles and factors influencing differences between healthcare systems. Proposed recommendations to enhance patient engagement were made. This systematic literature review was conducted using studies from Australia, China, Japan, Malaysia, New Zealand, the Philippines, South Korea, Singapore, Taiwan, and Thailand. Studies were included if they provided data on patient involvement in health technology assessment (HTA) and/or funding decisions for medicines. Extracted data were scored according to eleven parameters adapted from the National Health Council (NHC) rubric, which assessed the level of patient involvement in healthcare system decision-making. We identified 159 records between 2018 and 2022, including methodology guidelines from Government websites. Most mentioned parameters were patient partnership, patient-reported outcome, and mechanism to incorporate patient input. Limited information was available on diversity and patient-centered data sources. Tools for collecting patient experience included quality-of-life questionnaires, focus groups, interviews, and surveys, with feedback options like structured templates, videos, and public sessions.Beyond input in assessment process, involvement of patients in decision-making phase has evolved within HTA bodies over time with considerable variation. Few APAC healthcare systems involve patients in the appraisal process as members of the recommendation or decision-making committee. The findings indicate that while patient involvement in pharmaceutical reimbursement decisions exists, improvements are needed. Effective integration of patient input requires transparency, education, and resource planning. This study establishes a baseline to track progress and assess the long-term impact of patient involvement.

Factors impacting patient flows in the emergency department

Purpose Emergency departments (EDs) are essential to hospital operations, involving complex processes and interactions with several hospital departments. As the entry point for many patients, EDs often face challenges such as overcrowding, staffing shortages and disruptions to patient flow, all of which negatively impact patient satisfaction. This paper aims to use discrete-event simulation and lean healthcare to analyse patient flows, exploring multiple scenarios to improve both patient experience and operations management. Design/methodology/approach Researchers combined Lean principles with discrete-event simulation to model the entire patient flow through the ED and its interactions with other hospital departments. Various scenarios were simulated to explore potential improvements in resource allocation, inpatient admissions and reductions in non-urgent cases. Findings This study demonstrates that reducing wait times for inpatient admissions significantly decreases all ED patients’ average length of stay (ALOS). Furthermore, reducing the number of non-urgent patient admissions has a substantial impact on ED metrics, as these patients represent over 40% of admissions and consume significant resources. Overall, combining all improvements led to a reduction in ALOS by more than 30%. Originality/value This paper uses simulation to characterise ED operations and assess the influence of other hospital departments on patient flow. This approach provides a quantitative understanding of the role these departments play in ED overcrowding. In addition, this study compares different patient workflow characteristics and their effects, highlighting the importance of workflow decisions in shaping patient experiences.

The experience of subjective financial distress on cancer patients in China: A qualitative study.

To explore the experience of Chinese cancer patients with SFD (Subjective Financial Distress), and add new evidence to studies on the SFD of cancer. Cancer patients and caregivers hospitalized in the oncology department of a Grade A hospital in Jiangsu Province from August 2022 to October 2022 were recruited as participants for semi-structured interviews using purposeful sampling and the maximum variation principle. The themes were extracted using Colaizzi's phenomenological data analysis method. The interview involved 24 participants who qualified, comprising 15 patients and 9 caregivers. A total of 3 themes and 9 sub-themes were extracted from interviews: (1) financial risk perception (increasing objective financial burden, decreasing financial accessibility); (2) coping behaviors (changes in daily consumption patterns, changes in work status, changes in treatment plans, and seeking support); (3) negative psychological response (personal dimension, family dimension, and social dimension). SFD is widely present in Chinese cancer families and is being dealt with passively, which adversely affects the lives or work of cancer families. Healthcare professionals should pay attention to this phenomenon and conduct early and comprehensive assessments so that future interventions can be implemented to alleviate their SFD.

Elevating the Patient Voice: Understanding Treatment Preferences in Patients with Advanced Prostate Cancer.

With multiple oral medications currently available for patients with prostate cancer, there is a need to understand how patients' preferences and experiences are impacted by several factors including pill burden and dosing frequency. This study aimed to understand medication preferences from patients with advanced prostate cancer (APC). We conducted a cross-sectional, online survey of patients with APC living in the USA. The survey was completed by 100 patients with a median age of 65years (range 35-79). Most patients were White (53%) with 31% Black and 15% Hispanic. Nearly half (48%) reported taking more than five pills per day and 50% reported taking more than three prescription medications per day. Nearly two-thirds (63%) reported difficulty remembering to take pills multiple times per day and 91% said they would choose a one-pill-once-daily option over a multi-pill regimen. Twenty-two (22%) patients had difficulty swallowing pills or were unsure. Of these 22, 21 (95%) considered it important that a pill can be dispersed in water or applesauce. Most patients (81%) had undergone chemotherapy previously and 80% reported taking oral medications for prostate cancer. Eighty-nine (89%) patients said they would prefer an oral treatment option compared to intravenous chemotherapy. Most patients prefer a one-pill-once-daily regimen. Most patients prefer the option of an oral treatment regimen over intravenous chemotherapy. When discussing treatment options, providers should consider the individual patient's preferences and engage in shared decision-making.

Analyzing Usage of the Metaverse by Associations of Patients With Prostate Cancer During the 2023 Blue Ribbon Campaign: Cross-Sectional Survey Study.

It is important to explain early diagnosis and treatment plans to patients of prostate cancer due to the different stages that diagnosis is made at and the corresponding stage-specific treatment options, as well as the varying prognoses depending on the choices made. Although various studies have implemented metaverse-based interventions across diverse clinical settings for medical education, there is a lack of publications addressing the implementation and validation of patient education using this technology. This study explored the potential of the metaverse as an educational and informational tool for prostate cancer. We measured and analyzed participants' satisfaction and perceptions following a metaverse-based prostate cancer awareness campaign. We also evaluated the feasibility and potential effectiveness of the metaverse as a platform for hosting a virtual patient association and delivering health education. The study was conducted via a questionnaire administered from September 15 to October 20, 2023, during the Blue Ribbon Campaign organized by the Korean Urological Association and the Korean Society of Urological Oncology. The postevent questionnaire was designed to assess the effectiveness of using the metaverse to increase awareness of prostate cancer. A total of 119 participants, including patients, caregivers, and members of the general population, completed the survey within the metaverse space and assessed their satisfaction and perceived awareness using a 5-point Likert scale. The mean educational satisfaction score was 4.17 (SD 0.65), the mean psychological satisfaction score was 4.06 (SD 0.70), the mean overall satisfaction score was 4.12 (SD 0.72), and the mean awareness score was 4.09 (SD 0.72) out of a possible 5 points. Among responses rated 4 or higher ("agree" or "strongly agree"), 82.8% (394/476) were in the educational aspect, 76.6% (365/476) in psychological satisfaction, 81% (289/357) in overall satisfaction, and 80.4% (287/357) in awareness. Statistical analysis revealed significant differences in psychological (median 4.0, IQR 3.50-4.63, vs median 4.50, IQR 4.0-4.56) and overall (median 4.0, IQR 3.67-4.83, vs median 4.33, IQR 4.0-4.67) aspects between the general population group and patients and caregivers (median 4.0, IQR 3.33-4.33, vs median 4.67, IQR 4.0-4.67). The findings suggest that the metaverse holds promise as a platform for health care education and patient support, offering accessible and engaging experiences for patients, caregivers, and members of the general population. Our approach demonstrated a positive influence on participants' satisfaction and perceived awareness, highlighting its potential to enhance health communication and patient engagement. Despite these encouraging results, limitations, such as the sample being skewed toward younger participants and reliance on self-reported data, underscore the need for more rigorous and multidimensional assessment strategies. Future studies should incorporate objective knowledge assessments, behavioral follow-ups, and qualitative methods to better evaluate the intervention's effectiveness. This study provides early evidence that metaverse-based interventions can support disease awareness and promote preventive health behaviors, contributing to the ongoing evolution of digital health education.

Mapping maternity care journeys: a qualitative comparison of patient experiences in private and government hospitals in India

Purpose This study aims to explore the challenges experienced by maternity patients in the selected private and government hospitals in India. Design/methodology/approach The study is cross-sectional and adopts a qualitative research design. The data collection technique uses in-depth interviews of 60 patients to create journey maps for patients visiting a private corporate hospital from Maharashtra and a government medical college in Kerala. Findings Persona 1 (working woman, less than 30 years, first-time delivery) and Persona 2 (housewife, more than 33 years of age and has delivered earlier) were the dominant personas in the private hospital. The pain points experienced included the unavailability of wheelchairs, high waiting time, delay in shifting from the labour room to wards, tasteless food, poor quality of clothing for newborn babies, final bills exceeding the estimated expenditures and limited avenues for registering complaints and grievances. In the government hospital, the dominant personas included Persona 1 (Young, first-time mothers) and Persona 2 (middle aged, with children). The pain points experienced included a lack of awareness about hospital services, dealing with extensive paperwork, the risk of losing medical records, uncomfortable seating arrangements and delays in accessing beds, difficulty in locating the hospital departments and lack of post-pregnancy counselling. Originality/value To the best of the authors’ knowledge, this is one of the first studies comparing the journey of maternity patients in both government and private hospitals in India. The challenges experienced by maternity patients are significantly different in private and public hospitals. In both types of hospitals, first-time mothers face information-related challenges and second-time mothers are more accommodating.

Understanding the Patient Experience of Advanced Parkinson's Disease: Qualitative Research with Patients and Expert Clinicians to Identify Symptoms and Associated Health-Related Quality of Life Impacts.

Parkinson's disease (PD) is a progressive neurodegenerative condition, characterized by motor symptoms (MS) and non-motor symptoms (NMS). Currently, there is no global definition of advanced PD, but those in advanced stages experience diverse and severe symptomatology, and significant impacts to their health-related quality of life (HRQoL). This qualitative interview study aimed to explore the experience of symptoms and HRQoL impacts of advanced PD from the patient and clinician perspective and identify key concepts for assessment in PD clinical trials. A targeted review of literature and qualitative concept elicitation interviews conducted with people with advanced PD (N = 20) and expert clinicians (N = 3) in the US aimed to identify symptoms of advanced PD and their impact on HRQoL. People with advanced PD (PwP) were defined as those diagnosed ≥ 5years, experiencing ON/OFF motor fluctuations despite levodopa therapy, and classified as modified Hoehn and Yahr stages 2-4. In total, 65 symptoms (48 NMS, 17 MS) were identified across the reviewed literature and qualitative interviews. The most frequently reported MS included tremor, rigidity, balance issues, and slowness of movement. Several NMS were also frequently reported by participants, including fatigue, cognitive dysfunction (e.g., difficulty thinking), neuropsychiatric symptoms (e.g., apathy), pain, sleep problems, urinary dysfunction, autonomic dysfunction, excessive daytime sleepiness, gastrointestinal dysfunction, and sensory dysfunction. Participants reported these to impact HRQoL, including daily activities, emotional functioning, physical functioning, social functioning, work/study, and financial well-being. The study provides in-depth insights into the symptoms and HRQoL impacts experienced by those with advanced PD. A comprehensive conceptual model of the patient experience of advanced PD was developed to support the identification of relevant concepts for assessment in PD clinical trials.

Trial Protocol: OPEN: Optimising Patient Experience in head and Neck radiotherapy, A phase 3 randomised control trial comparing open versus closed face masks for patients undergoing head and neck radiotherapy.

Background Current radiotherapy treatment techniques for head and neck cancer use closed thermoplastic masks to ensure accurate and effective immobilization. Patients often tolerate these masks poorly, and many experience symptoms of claustrophobia and distress. This prospective randomized controlled Phase III trial has been developed to compare the setup accuracy and patient experience between three types of masks for head and neck cancer patients: standard closed 5 points, open 5 points, and open 3 point radiotherapy masks. Methods The study will be conducted across a 3 site radiotherapy network, including 201 patients. Patients will be randomised into three arms on a 1:1:1 basis. The inclusion criteria will be all patients undergoing radical radiotherapy of 30-35 fraction duration for head and neck cancer. To ensure daily set up accuracy and patient safety, patients on all three arms will be imaged daily with cone beam CT (CBCT). Surface-guided technology will be used for open arms measuring both inter- and intrafraction motion. Patient distress and experience with masks will be evaluated through a GHQ 12 questionnaire and questions on their perceptions. Discussion Studies have demonstrated the safety of open masks when combined with surface-guided technology to maintain adequate setup accuracy for treatment delivery. The reduced surface in contact with the patient requires robust evaluation to ensure effective immobilization. An earlier study in claustrophobic patients was conducted; however, open masks were not evaluated in a large randomized trial for patients without claustrophobia. The overall purpose of the trial was to evaluate whether open face masks in conjunction with modern treatment verification technology should be the new standard of care, providing safe and effective immobilization and better treatment experience for all patients undergoing head and neck radiotherapy. Trial Registration CTI 23-24, Caner Trials Ireland January 24 https://www.cancertrials.ie/cti-trials/open/ NCT06327139 January 2024 https://clinicaltrials.gov/ct2/show/NCT06327139/

Clinical and patient-reported outcomes of self-administered outpatient parenteral antimicrobial treatment (S-OPAT): a scoping review.

This study aimed to provide a comprehensive overview of the existing literature on Self-administered Outpatient Parenteral Antimicrobial Therapy (S-OPAT), focusing on safety and clinical outcomes, factors influencing these outcomes, and the experiences of patients and caregivers. We searched the databases MEDLINE, CINAHL, Embase and Cochrane library. Publications were included if they reported on the clinical outcomes, safety, and/or experiences of patients and caregivers with S-OPAT. Study selection and data extraction were performed independently by two reviewers. Quantitative and qualitative data were summarized in data charting forms. Forty-four studies were included: 41 primary studies, 2 systematic reviews and 1 clinical guideline. Clinical outcomes were reported in 17 and safety in 23 primary studies. Eleven studies compared S-OPAT to other OPAT delivery models. These studies showed that all models were generally comparable regarding clinical outcomes, but two studies reported an increased number of adverse events with S-OPAT. Nine studies, exploring a total of 7 potential risk factors, identified older age, comorbidities and Staphylococcus aureus infections as contributors to adverse events. The results of 14 studies on patient-centred outcomes showed that patients and caregivers considered S-OPAT a suitable alternative to other OPAT delivery models. We conclude that S-OPAT is a viable model of care, demonstrating favourable clinical outcomes, although some safety concerns have been reported. The growing care demand now and in the future urges further development of S-OPAT care. Gaps of knowledge still exist, and we provide recommendations for future research.

Patient-related experience measurement scales for endoscopy procedures - A systematic review, COSMIN and conceptual model evaluation.

Patient experience is a quality indicator in gastrointestinal endoscopy, as recognized by the European Society of Gastrointestinal Endoscopy (ESGE). Despite this, no standardized tools or metrics have been formally endorsed for routine use. To identify and evaluate patient-reported experience measures (PREM) used in endoscopic procedures, assessing their psychometric properties and conceptual completeness, and to explore gaps for future development. A systematic literature review was conducted up to March 2023, including studies involving adults (>18 years) who underwent endoscopic procedures and completed PREM. Instruments were assessed using the COSMIN risk of bias tool and a patient experience conceptual model. Of 1.911 articles screened, 10 studies met the inclusion criteria. The Colonoscopy Experience Score Tool (CEST) proved the strongest psychometric performance, while the Endoscopic Patient-Reported Experience Measure (ENDOPREM) showed superior conceptual coverage. However, no single instrument met both psychometric and conceptual standards. A critical gap identified across all tools was the absence of items related to patient health motivation. CEST is psychometrically superior and ENDOPREM is conceptually robust. Future PREM should adopt a hybrid approach-combining the psychometric strengths of CEST with the conceptual complexity of ENDOPREM-while also incorporating domains such as patient motivation to improve relevance and impact. Measuring patient experience requires tools that are currently both scientifically rigorous and patient-centered. Developing a Hybrid PREM is an essential next step to support quality improvement in endoscopic care.

Safety and efficacy of ambulatory total knee arthroplasty with enhanced recovery after surgery protocols in well-selected patients aged 80 years and older.

An enhanced recovery after surgery protocol following total knee arthroplasty (TKA) offers multiple benefits. However, there are concerns about whether old age should be a criterion for exclusion from this protocol. This study aimed to determine the safety and outcomes of ambulatory TKA for patients aged ≥80 years. A retrospective study was conducted using data from our hospital knee registry database (2021-2024). We compared the length of hospital stay, complication rate, readmission rate, three-month postoperative functional outcomes and overall experiences of patients (aged ≥80 years) who underwent ambulatory TKA with patients (aged ≥80 years) who underwent non-ambulatory TKA and younger patients who underwent ambulatory TKA. Functional outcomes were evaluated using Oxford Knee Score (OKS), Knee Society Clinical Score (KSS) and Knee Society Functional Score (KSFS). The minimal clinically important difference cutoffs for OKS, KSFS and KSS were 5.0, 6.4 and 5.9, respectively. There were clinically significant improvements in the three-month postoperative functional scores compared to preoperative scores in all patient groups. Patients aged ≥80 years who underwent ambulatory TKA had lower complication and readmission rates compared to the other patient groups. They also had better three-month postoperative functional scores than patients who underwent non-ambulatory TKA (P = 0.004 for OKS, P = 0.003 for KSFS), and similar outcomes as younger patients (P > 0.050 for OKS, KSFS). Length of hospital stay, satisfaction rates and rates of expectation met were comparable between patients aged ≥80 years and younger patients who underwent ambulatory TKA. In carefully selected patients aged ≥80 years, ambulatory TKA is safe and yields outcomes comparable to those of younger patients.

Advancing Future Amyotrophic Lateral Sclerosis Medicines by Incorporating The Patient Voice Into Patient-Centered Holistic Measurement Strategies for Clinical and Real-World Studies: Results from Targeted Literature Reviews.

This analysis sought to understand the patient experience in amyotrophic lateral sclerosis (ALS) and to assess whether commonly used clinical outcome assessments (COAs) reliably and validly capture that experience. Two targeted literature reviews were conducted to identify and describe key concepts potentially important to patients (signs, symptoms, impacts), and identify commonly used COAs in ALS. Insights gained were used to map target COAs to concepts identified as potentially relevant to patients and their caregivers. COAs of interest were further examined to evaluate evidence of their validity and reliability within ALS. Forty-three articles were identified for concept extraction. Signs and symptoms were identified across multiple themes: motor; non-motor; respiratory; cognitive; and behavioral. Patient impacts were identified across multiple themes: physical; functional; emotional; social; and other aspects of well-being. Caregiver impacts were identified across four themes: general; emotional; social; and physical. Of 236 unique COAs identified, 6 were found to provide the greatest coverage of potentially important concepts. Closer examination of these showed some evidence gaps supporting content validity and/or psychometric properties. Several concepts related to ALS were identified that are relevant to patients in their daily lives. We identified and reviewed COAs commonly used in assessing these concepts, and found gaps in their content validity and/or psychometric properties. These findings suggest the need for further testing/refinement of existing tools, and the opportunity to use other instruments alongside those most frequently used (e.g., ALSFRS-R) to comprehensively capture the patient experience of ALS in future clinical trial and real-world studies.

Virtual Reality in Otolaryngology Patient Outcomes: A Systematic Review and Meta-Analysis.

Patients commonly report experiencing anxiety or pain before, during, and after undergoing surgery or medical procedures. Instead of solely relying on pharmacologic options to improve the patient's experience, complementary options such as virtual reality (VR) have been used in multiple specialties to decrease anxiety and pain for patients perioperatively. The objective of this systematic review and meta-analysis was to assess the effectiveness of the VR intervention on anxiety/stress, pain, and satisfaction scores following otolaryngology procedures. PubMed, Embase, and Web of Science. The PRISMA methodology was used in this study to systematically identify articles from October 1994 to August 2024. The search phrases inputted into PubMed, Embase, and Web of Science produced a total of 2068 articles, with 9 studies being included in the systematic review and meta-analysis. The 9 randomized control studies included in this systematic review and meta-analysis encompassed a total of 370 patients, 182 of whom underwent VR intervention. The Cohen's d standardized mean difference (SMD) for anxiety/stress was -0.84 (95% CI: -1.14 to -0.54, p < 0.001). SMD for pain and satisfaction scores were - 0.36 (95% CI: -0.62 to -0.10, p = 0.01) and 0.55 (95% CI: 0.30 to 0.81, p < 0.001), respectively. VR intervention was shown to improve anxiety/stress, pain, and satisfaction scores for patients who underwent otolaryngology procedures. VR intervention was shown to improve anxiety/stress, pain, and satisfaction scores for patients undergoing otolaryngology procedures. Future studies may include comparing the effects of VR intervention to other nonpharmacologic interventions. NA.

Navigating the diagnosis and treatment of primary progressive aphasia: Lived experience of a rural patient.

Frontotemporal dementias (FTD) are a group of early-onset neurodegenerative disorders that primarily affect the frontal and temporal lobes, leading to changes in behavior, motor abilities, communication, and executive functions. Primary progressive aphasias (PPA), the language variant of FTD, specifically impair speech and language abilities. The heterogeneous presentation of FTD, particularly PPA, complicates differential diagnosis and treatment selection for healthcare professionals. These challenges are further exacerbated for patients in rural areas due to limited access to specialized healthcare services. This cross-sectional, descriptive case study examines a 76-year-old male patient diagnosed with agrammatic primary progressive aphasia (nfvPPA) living in a rural area in the U.S. We conducted a semi-structured interview with his caregiver to explore the lived experience of being diagnosed and treated for PPA in a rural setting and to identify challenges encountered during the diagnostic and therapeutic processes. Several critical barriers were identified, including poor interprofessional communication, inadequate practitioner-patient and caregiver communication, limited access to educational resources, inconsistent intervention and follow-ups, and restricted healthcare services. To improve the patient and caregiver experience, we propose a collaborative management model centered around speech-language pathologists with expertise in FTD/PPA. This model aims to facilitate smoother navigation of the healthcare system and improve patient outcomes. Effective care management requires clear and continuous communication among providers, patients, caregivers, and other professionals. Additionally, educating and supporting FTD/PPA patients and their families is essential. Research gaps in rural areas regarding diagnosis and treatment outcomes further hinder care, underscoring the need for targeted studies to enhance clinical practices and improve the quality of life for both patients and caregivers.

The Kübler-Ross Five Stages of Grief Model: A Framework for Human-Centered Health Informatics.

The Kübler-Ross Five Stages of Grief Model (KR model) is examined in the context of human-centered health informatics. The KR model is positioned as a non-linear set of heuristics which can assist in contextualizing the complexities of human cognitive-emotional processing of distressing events (e.g., organizational change, technology implementation, trauma). Thus, unique perspectives can be provided in each conceptual stage: 1) Denial and Isolation, 2) Anger, 3) Bargaining, 4) Depression, 5) Acceptance. This scoping review sought to: 1) Examine the application of the KR model in the design, evaluation or implementation of healthcare technology, 2) Determine if the KR model has been used to guide context specific user-experience (UX) activities (i.e., persona creation, journey mapping) to understand the patient, physician, nurse or caregiver experiences. The findings underscored that the KR model has various healthcare applications and use, however it remains underutilized as a valuable tool to contextualize human experiences.

Patient Experience of Heart Disease with Elevated Lipoprotein(a): Views from a Patient, His Physician, and a Patient Association.

This article presents three points of view on lipoprotein(a) [Lp(a)]: that of a patient, his endocrinologist, and a patient association, the Association Nationale des Hypercholestérolémies familiales et Lipoprotéines (a) (ANHET). By sharing his story, the patient reveals the severe impact his high Lp(a) levels had on his health, his daily life, and his family. The endocrinologist explains what Lp(a) is and its role as a risk factor for cardiovascular disease. As an expert in the field, he reviews the recommendations for the screening and management of Lp(a). The vice-president of ANHET describes the association's fight to increase awareness of this risk factor among patients, the medical profession, and even politicians, and to bring about changes in the healthcare system. Given the large number of people concerned, the perspectives of the patient, the physician, and the patient association converge in raising awareness of the negative impact of high levels of Lp(a) on health and the importance of intensifying Lp(a) screening.See the Supplementary Material for a French-language version of this abstract.