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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.

Introduction  Patient experience is a crucial aspect of healthcare delivery, and it encompasses various elements that contribute to a patients perception of the care they receive. Patient satisfaction and patient experience are related but distinct concepts. Patient experience focuses on whether specific aspects of care occurred, while patient satisfaction gauges whether patient expectations were met. It goes beyond mere satisfaction and delves into the broader aspects of how patients interact with the healthcare system and the quality of those interactions, with health plans, doctors, nurses, and staff in various healthcare facilities. Other aspects highly valued by patients include elements such as timely access to care and information, good communication with the healthcare team, and friendly staff. Patient experience can influence both the healthcare and financial outcomes of healthcare facilities. It is well understood that positive patient experiences may lead to better care adherence, improved clinical outcomes, enhanced patient safety, and better care coordination. Payers, both public and private, have recognized the importance of patient experience. Improving patient experience benefits healthcare facilities financially by strengthening customer loyalty, building a positive reputation, increasing referrals, and reducing medical malpractice risk and staff turnover.  Methodology A multidisciplinary retrospective quality improvement initiative was initiated to effectively improve nurse-physician communication and organizational outcomes in several hospital units. Results Using an innovative staff-developed and driven acronym, IMOMW (Im on my way), the study demonstrated significant positive outcomes such as increased Epic documentation (Epic Systems Corporation, Verona, Wisconsin, United States) of physician and nursing rounding by 13%, a 10.5% rise in recommend facility net promoter score (NPS) patient experience survey scores, 13.4% increase in physician and nurse team communication, 5.4% increase in nursing communication, and a 5.3% increase in physician communication. Moreover, pilot units outperformed the control group consisting of medical-surgical units located in newer portions of the hospital. Conclusion This quality improvement study demonstrates improved interdisciplinary nurse-physician communication, Epic documentation, and patient experience scores. Further investigation is necessary to better understand the specific factors and/or processes that influence the sustainability of interventions that improve nurse-physician communication and patient experience.

Veterans enrolled in the Veterans Affairs (VA) health care system gained greater access to non-VA care beginning in 2014. We examined hospital and Veteran characteristics associated with hospital choice. We conducted a longitudinal study of elective hospitalizations 2011 to 2017 in 11 states and modeled patients choice of VA hospital, large non-VA hospital, or small non-VA hospital in conditional logit models. Patients had higher odds of choosing a hospital with an academic affiliation, better patient experience rating, location closer to them, and a more common hospital type. Patients who were male, racial/ethnic minorities, had higher VA enrollment priority, and had a mental health comorbidity were more likely than other patients to choose a VA hospital than a non-VA hospital. Our findings suggest that patients respond to certain hospital attributes. VA hospitals may need to maintain or achieve high levels of quality and patient experience to attract or retain patients in the future.

Purpose: To compare characteristics of temporomandibular disorders (TMDs) in patients with rheumatoid arthritis (RA) to patients without RA. Materials and Methods: The sample included 80 patients (aged 33 to 73 years; 88% women and 22% men) with 40 in each group. An international diagnostic protocol for TMDs was followed. Results: Arthralgia was the most prevalent TMD in the RA group. Orofacial pain was more common in the RA group than in the controls (42.5% vs 15%, P = .031), with higher chronic pain grade and pain intensity (P = .005). Somatization and depression were also increased (P < .001). In multiple logistic regression analysis, arthralgia (OR: 6.4; 95% CI: 1.1 to 37.1; P = .038) and age = 55 years were predictors of RA (OR: 3.9; 95% CI: 1.4 to 10.8; P = .009) when controlling for the effects of biological sex and pain intensity. TMDs were related to 7.4 times higher odds for presence of orofacial pain, while RA was related to 3.4 times higher odds for pain. Conclusions: RA patients experienced more orofacial pain and higher pain intensity, somatization, and depression compared to healthy individuals. Pain is more influenced by TMDs than by RA. [ABSTRACT FROM AUTHOR]

Background: World falls guidelines recommend that hospitalised older patients receive individualised falls prevention education, yet no studies have sought older people's feedback on how best to deliver falls prevention education in hospitals. The objective of the study was to explore the perspectives of older people and their caregivers about barriers and enablers to implementation of a tailored hospital falls education program. Methods: A qualitative descriptive design was used. Three focus groups and 16 semi-structured interviews were conducted. A purposive sample of older people who had previous hospital admissions and caregivers of older people were selected to review a co-designed patient falls education program (the revised Safe Recovery program). They provided feedback on how to implement the program in hospital settings. Data were thematically analysed taking an deductive-inductive approach. Results: Participants were 37 older people [female n = 24 (64.9%), age range 64 to 89 years] and nine caregivers (female n = 8). The first theme was that the Safe Recovery Program resources were of high quality, enabling strong patient engagement and increased knowledge and awareness about falls prevention in hospitals. The second theme identified practical strategies to enable program delivery in hospital wards. The key enablers identified were: timing of delivery around wellness and the patient's mobility; tailoring messages for each older patient; key staff members being assigned to lead program delivery. Participants recommended that staff assist older patients to set appropriate behavioural goals in relation to preventing falls in hospitals. They also recommended that staff raise older patients' confidence and motivation to take action to reduce the risk of falls. Providing resources in other languages and alternative shorter versions was recommended to enable broad dissemination. Conclusions: Older people and their caregivers advised that implementing falls education in hospitals can be enabled by using high quality resources, delivering falls education in a timely manner and personalising the education and support to individual needs. [ABSTRACT FROM AUTHOR]

ABSTRACT Aims Design Methods Results Conclusion Implications for the Profession and/or Patient Care Impact Reporting Method Patient Contribution The study aimed to describe patients' fundamental care needs and their experiences of nursing care, throughout surgical treatment of small intestinal neuroendocrine tumours.A qualitative descriptive study was performed.Patients' interviews (n = 19) were conducted in Sweden from May 2021 to January 2022 and analysed using directed qualitative content analysis guided by the Fundamentals of Care framework.The results are presented in three descriptive categories chronologically throughout the care chain. In the preoperative phase of care, the category was ‘Feeling safe but lonely and frightened, and struggling with existential thoughts’; experiences in the postoperative phase of care resulted in the category ‘Feeling cared for but suffering from physical symptoms and feelings of loneliness’; and the category in the discharge phase was ‘Lacking self‐care information and feeling worried about the future’.There were deficiencies in the delivery of fundamental care for patients with a rare tumour diagnosis throughout surgical treatment. Nursing care is mostly task focused and fragmented, and there is a lack of psychosocial and relational care across the care chain. Registered nurses and nursing managers need to take responsibility for their leadership in nursing care to fulfil patients' fundamental care needs. The Fundamentals of Care framework could be used for work improvements to include all aspects of nursing care. High‐quality nursing care is needed throughout the care chain, including self‐care after discharge, for patients with this rare tumour diagnosis. A higher awareness of patients' experiences and the importance of psychosocial support is warranted. Registered nurses and nursing managers must revise and improve routines to support patients' psychosocial needs. Registered nurses need to take responsibility for their leadership in nursing care to fulfil patients' fundamental care needs. What problem did the study address? This study highlights patients' fundamental care needs and experiences of nursing care throughout surgical treatment of small intestinal neuroendocrine tumours.What were the main findings? There are deficiencies in fulfilling patients' fundamental care needs across the care chain and in all dimensions of the Fundamental of Care framework throughout surgical treatment of small intestinal neuroendocrine tumours. Patients struggled with loneliness and existential thoughts, as well as worries about the future. Patients experienced a lack of information about plans for the day, self‐care, and follow‐ups.Where and on whom will the research have an impact? For clinicians to develop an understanding of, and improve, fundamental care needs for patients with small intestinal neuroendocrine tumours in a surgical context. For registered nurses to understand the importance of their leadership and nursing responsibility to fulfil fundamental care needs.The consolidated criteria for reporting qualitative research (COREQ): a 32‐item checklist for interviews and focus groups.The patients shared their experiences during the interviews, which has contributed to a deeper knowledge and understanding of the phenomena under study. [ABSTRACT FROM AUTHOR]

AbstractPurposeMethodsResultsConclusions\nIMPLICATIONS FOR REHABILITATIONTo assess content and readability of online patient educational materials (PEMs) for paediatric deep brain stimulation (DBS) and intrathecal baclofen (ITB).A content analysis of PEMs identified from top children’s hospitals, institutions affiliated with published neuromodulation research, and DBS and ITB device manufacturers was conducted. PEM content was analysed using a predetermined framework. Readability was assessed using the Simple Measure of Gobbledygook (SMOG).Of 109 PEMs (72 DBS; 37 ITB) identified, most (77 (71%)) originated in the United States. More ITB PEMs (27 (73%)) contained specific paediatric information than DBS PEMs (16 (22%)). PEMS more frequently described benefits (DBS: 92%; ITB: 89%) than risks (DBS: 49%; ITB: 78%). Frequent content included pre- and post-operative care, procedural details, and device information. Less common content included long-term lifestyle considerations, alternatives, patient experiences, and financial details. Median readability of PEMs was 13.2 (interquartile range [IQR]: 11.4–14.45) for DBS and 11.8 (IQR: 11–12.9) for ITB.Available ITB and DBS PEMs often miss important broader details of the treatments, and have additional shortcomings such as poor readability scores. Our findings highlight need for more holistic content within neuromodulation PEMs, improved accessibility, and more balanced representation of risks and benefits.Neuromodulation patient education materials (PEMs) require more comprehensive information to address needs of families of children with movement disorders.There is a paucity of online PEMs for paediatric deep brain stimulation (DBS), and limited English-language neuromodulation information originating outside the USA.Neuromodulation PEMs do not meet readability standards and underutilise testimonials and audiovisual communication.Benefits of neuromodulation are described more frequently than risk information in PEMs.Neuromodulation patient education materials (PEMs) require more comprehensive information to address needs of families of children with movement disorders.There is a paucity of online PEMs for paediatric deep brain stimulation (DBS), and limited English-language neuromodulation information originating outside the USA.Neuromodulation PEMs do not meet readability standards and underutilise testimonials and audiovisual communication.Benefits of neuromodulation are described more frequently than risk information in PEMs. [ABSTRACT FROM AUTHOR]

ABSTRACT Introduction Aim Method Results Discussion Implication for Research Prior mental healthcare utilisation presents an important window of opportunity for providing suicide prevention interventions. To date, no reviews have consolidated the help‐seeking needs of individuals in contact with mental health services. This warrants further attention given this group may have different needs for interventions compared with the general population who have not sought help previously.The purpose of this rapid scoping review was to summarise the available literature on help‐seeking needs related to suicide prevention among individuals in contact with mental health services from healthcare settings.Cochrane rapid review and Joanna Briggs Institute scoping review methodologies were adapted, and databases, including MEDLINE, Scopus, CINAHL, PsycInfo and EMBASE, were searched.A total of 42 primary studies were included in analysis. Reported barriers and facilitators to help‐seeking behaviours identified within studies were mapped onto the socio‐ecological model. Barriers and facilitators identified included knowledge and attitudes towards healthcare utilisation, family and peer support, interactions with healthcare professionals, provision of holistic care, and the creation of a supportive atmosphere and safe space to promote open discussions of suicide‐related concerns.The findings of this review offer valuable insights into areas for improvement in addressing help‐seeking needs for individuals who are in contact with health services related to suicide prevention.The findings serve as a foundation for shaping mental health initiatives informing approaches and care delivery tailored towards individuals who are in contact with health services. The reported barriers and facilitators offer insights to inform the development of mental health support tools to enhance care and considerations for evaluations. [ABSTRACT FROM AUTHOR]

AbstractObjectiveMethodsResultsConclusionsHealth coaching may supplement the multidisciplinary ALS clinic model to facilitate patient-centered health behavior change. The aim of this study was to determine the effects of nurse health coaching (NHC) on the quality of life and self-efficacy of individuals living with ALS.Twenty-nine participants were randomized at 1:1 to the standard of care and coaching arms. All participants attended multidisciplinary ALS clinic visits quarterly, at which times they completed assessments of quality of life and self-efficacy. Those in the coaching arm participated in monthly coaching with a nurse coach over 12 months. The coaching sessions utilized motivational interviewing to identify personal goals along with barriers and solutions to achieve them. Linear mixed-effect models were used to quantify the effect of coaching on quality of life and self-efficacy outcomes. Thematic analysis was performed to summarize the participants’ experiences with coaching.Adherence to the coaching intervention was good. No effects of coaching were observed on the primary outcomes of quality of life and self-efficacy, although debriefed participants reported that they would recommend it to others. Patients and caregivers reflected on the impacts of coaching that extended beyond the pre-defined study outcomes and measures put in place to gauge effectiveness.The elicited qualitative themes illustrating patient experience of coaching demonstrate the utility of nurse coaching as an important adjunct support to complement the multidisciplinary ALS clinic model. [ABSTRACT FROM AUTHOR]

For patients with epilepsy, one of the biggest problems is the unpredictability of the time when the next seizure will occur. Interestingly, some epileptic patients experience a sensory sensation preceding seizures, called aura, which helps them move to safety before a seizure. Here, we describe the development of the first animal model of auras, which could allow for a more detailed study of this phenomenon. Specifically, in mice, we presented sensory stimuli (sound and light cues) a few seconds before kindling an animal to induce seizures. Animals were kindled by electrical stimulation in the basolateral amygdalar nucleus. Over the course of stimulation sessions, animals started showing progressively stronger freezing behavior to sensory cues preceding kindling. Interestingly, seizures are known to cause retrograde amnesia, thus it was surprising that the association between seizures and preceding sensory cues developed in all experimental animals. In summary, our experiments show that similarly to auras, a sensory sensation can be associated with incoming generalized seizures and is not erased by retrograde amnesia. [ABSTRACT FROM AUTHOR]

Background: N-methyl-D-aspartate-receptor (NMDAR) encephalitis is a rare neurological autoimmune disease with severe neuropsychiatric symptoms during the acute phase. Despite good functional neurological recovery, most patients continue to experience cognitive, psychiatric, psychological, and social impairments years after the acute phase. However, the precise nature and evolving patterns over time of these long-term consequences remain unclear, and their implications for the well-being and quality of life of predominantly young patients have yet to be thoroughly examined. Methods: SAPIENCE is a European multi-center (n = 3) prospective observational cohort study studying the long-term cognitive, psychiatric, psychological, and social outcome in patients with NMDAR encephalitis. The study consists of three interconnected levels. Level 1 comprises a qualitative interview and focus groups with patients and their caregivers. Level 2 consists of a condensed form of the interview, standardized questionnaires, and a detailed neuropsychological examination of patients. Level 3 involves an online survey that will be open to patients world-wide and explores patient-reported outcomes (PROMs), and patient-reported experiences (PREMs) in association with clinical and cognitive outcomes. Levels 1 to 3 will progressively contribute developing of structured interviews, survey questions, and treatment guidelines by informing one another. Discussion: SAPIENCE is an in-depth study of the long-term effects of NMDAR encephalitis and bridges the gap between standardized assessments and individual patient experiences, intending to improve patient care and to increase awareness of the psychosocial long-term consequences of the disease. Through collaboration of experts in clinical neurology and social and health psychology across Europe, SAPIENCE aims to create online assessment tools and formulate guidelines for patient-centered post-acute care that will help enhance the quality of life for patients and caregivers. [ABSTRACT FROM AUTHOR]

Background: Lynch syndrome represents the most common hereditary cause of both colorectal and endometrial cancer. It is caused by defects in mismatch repair genes, as well as EPCAM. Universal screening of colon tumors for Lynch syndrome via microsatellite instability (MSI) and/or immunohistochemistry (IHC) can identify patients and families at risk to develop further cancers and potentially impact surveillance and treatment options. The approach to implementation of universal screening, taking ethical considerations into account, is critical to its effectiveness, with patient perspectives providing valuable insight. Methods: Patients whose colon tumors underwent universal screening at Penn State Hershey Medical Center over a period of 2.5 years were mailed a survey on universal screening in 2017. Along with the survey, they received a recruitment letter and a summary explanation of research. The survey included both multiple choice and free-response questions that covered topics including respondent knowledge of Lynch syndrome, attitudes toward universal screening and experiences with the screening protocol as implemented. Results: Sixty-six of 297 possible patients (22.2%) responded to the survey, including 13 whose screening results raised concern for Lynch syndrome. 75.8% of respondents supported universal tumor screening without informed consent. 92.4% preferred receiving screening results regardless of outcome. Respondents described benefits to screening for themselves and their families. Conclusions: While broadly supporting universal tumor screening without informed consent, respondents also wanted more information shared about the screening policy, as well as their results. These patient preferences should be one of many factors considered when implementing universal screening and can also inform practices regarding both tumor profiling and universal genetic testing, which is becoming more prevalent. [ABSTRACT FROM AUTHOR]

Background: Patients with head and neck cancers (HNC) experience many transitions in care (TiC), occurring when patients are transferred between healthcare providers and/or settings. TiC can compromise patient safety, decrease patient satisfaction, and increase healthcare costs. The evidence around TiC among patients with HNC is sparse. The objective of this study was to improve our understanding of TiC among patients with HNC to identify ways to improve care. Methods: This multimethod study consisted of two phases: Phase I (retrospective population-based cohort study) characterized the number and type of TiC that patients with HNC experienced using deterministically linked, population-based administrative health data in Alberta, Canada (January 1, 2012, to September 1, 2020), and Phase II (qualitative descriptive study) used semi-structured interviews to explore the lived experiences of patients with HNC and their healthcare providers during TiC. Results: There were 3,752 patients with HNC; most were male (70.8%) with a mean age at diagnosis of 63.3 years (SD 13.1). Patients underwent an average of 1.6 (SD 0.7) treatments, commonly transitioning from surgery to radiotherapy (21.2%). Many patients with HNC were admitted to the hospital during the study period, averaging 3.3 (SD 3.0) hospital admissions and 7.8 (SD 12.6) emergency department visits per patient over the study period. Visits to healthcare providers were also frequent, with the highest number of physician visits being to general practitioners (average = 70.51 per patient). Analysis of sixteen semi-structured interviews (ten patients with HNC and six healthcare providers) revealed three themes: (1) Navigating the healthcare system including challenges with the complexity of HNC care amongst healthcare system pressures, (2) Relational head and neck cancer care which encompasses patient expectations and relationships, and (3) System and individual impact of transitions in care. Conclusions: This study identified challenges faced by both patients with HNC and their healthcare providers amidst the frequent TiC within cancer care, which was perceived to have an impact on quality of care. These findings provide crucial insights that can inform and guide future research or the development of health interventions aiming to improve the quality of TiC within this patient population. [ABSTRACT FROM AUTHOR]

Discharge from psychiatric treatment has been established as an emotionally intense and vulnerable time for patients; however, to date no studies have investigated symptoms directly preceding discharge and the impact on post-discharge outcomes. Our primary aim was to assess the prevalence of elevations in depression and anxiety symptoms prior to discharge from a partial hospitalization program (PHP). Our secondary aim was to assess whether these pre-discharge elevations predict post-discharge outcomes. We analyzed daily depression and anxiety symptom severity from 4211 patients attending a PHP. Two subsamples (n = 113 and n = 70) completed post-discharge outcome measures of symptom severity, well-being, and/or functional impairment at two-weeks, one-month, and three-months post-discharge. Approximately two-thirds of patients demonstrated a significant increase in depression (p < .001) and anxiety (p < .001) symptom severity prior to discharge. These pre-discharge elevations did not significantly predict post-discharge measures when controlling for symptom severity at discharge. Our results suggest patients experience an increase in symptom severity preceding discharge, even after improvement; however, these elevations do not provide additional prognostic information. Clinicians may consider sharing these results with patients to normalize the experience of symptom elevation prior to discharge and highlight that it is not a prognostic indicator. [ABSTRACT FROM AUTHOR]

Introduction Purpose Methods Results Discussion Not all patients experience debilitating symptoms during Atrial Fibrillation (AF), some are asymptomatic. The reasons for this inter‐ and intrasubject variability is unknown.The study objective was NOAH characterize episode‐level and clinical characteristics associated with symptomatic versus asymptomatic episodes of AF in patients with an implantable cardiac monitor (ICM).Patients with an AF episode detected on an ICM between 2007 and 2021 with overlapping clinical data from aggregated Electronic Health Records in the Optum® deidentified data set were included. Symptomatic episodes were labeled in real‐time by the patient. Heart rate (HR) at onset, mean HR, AF Evidence Score (a measure of beat‐to‐beat irregularity), episode duration and Activity Index were evaluated for association with symptom status using multivariable regression modeling.11 267 patients had AF episodes with clinical data available. The 1776 (15.8%) patients who reported symptomatic AF episodes were younger (67 ± 12 years vs. 71 ± 11 years old, p < .001) and had fewer cardiovascular co‐morbidities than patients with asymptomatic AF exclusively. Symptomatic episodes were longer (5.5 [2.4, 14.4] h vs. 3.7 [1.7, 11] h, p < .001), had higher mean HR (103 ± 22 bpm vs. 88 ± 22 bpm, p < .001) and higher AF evidence scores (98 ± 27 vs. 82 ± 24, p < .001). These features were independently associated with symptomatic episodes on multivariable regression analysis and per‐subject analysis in patients who had both symptomatic and asymptomatic episodes.Episode‐level characteristics differed between symptomatic AF episodes versus asymptomatic episodes in patients with ICMs. Symptomatic patients also had less comorbidities. These parameters may be useful in understanding variable symptomatic manifestation and remote stratification of AF episodes. [ABSTRACT FROM AUTHOR]

Background: Incorporating principles of family-centered care into pediatric weight management interventions can improve the effectiveness and quality of treatment and reduce attrition rates. To assess the family-centeredness of interventions, reliable, valid, and easy-to-administer scales are needed. The purpose of the study was to develop a shortened version of the modified Family Centered Care Assessment (mFCCA) and assess its psychometric properties. Methods: The mFCCA, a scale to assess the family-centeredness of interventions for childhood obesity, was administered to families following the Connect for Health randomized control trial evaluating the effectiveness of a primary care-based pediatric weight management intervention. We iteratively removed items from the mFCCA and used Rasch modeling to examine the reliability and validity of the shortened scale. Results: We included data from 318 parents and the exploratory factor analysis showed the presence of a single factor. The results of the Rasch modeling demonstrated acceptable internal consistency of the scale (0.7) and strong validity as evidenced by the overall model fit and range of item difficulty. Following the psychometric analyses, we reduced the number of items from 24 to 8 items. Conclusion: The mFCCA short version demonstrates good psychometrics and can be used to evaluate the family-centeredness of childhood obesity interventions with reduced participant burden, thereby improving outcomes for children with obesity. Trial registration: Clinicaltrials.gov NCT02124460 registered on April 24, 2014. [ABSTRACT FROM AUTHOR]

Background: Delivering emergency care in rural areas can be challenging, but video consultation (VC) offers opportunities to make healthcare more accessible. The communication and relationship between professionals and patients have a significant impact on the patient's experience of safety and inclusion. Understanding the patient perspective is crucial to developing good quality healthcare, but little is known about patient experiences of emergency care via VC in a rural context. The aim of this study was to explore patient experiences of emergency care via VC in northern rural Sweden. Methods: Using a qualitative approach, semi- structured interviews (n = 12) were conducted with individuals aged 18—89 who had received emergency care with a registered nurse (RN) on site and VC with a general practitioner (GP). The interviews were conducted between October 2021 and March 2023 at community hospitals (n = 7) in Västerbotten County, Sweden. Interviews were analysed with content analysis. Results: The analysis resulted in main categories (n = 2), categories (n = 5) and subcategories (n = 20). In the main category, "We were a team of three", patients described a sense of inclusion and ability to contribute. The patients perceived the interaction between the GP and RN to function well despite being geographically dispersed. Patients highly valued the opportunity to speak directly to the GP. In the main category, "VC was a two-sided coin", some experienced the emergency care through VC to be effective and smooth, while some felt that they received a lower quality of care and preferred face-to-face consultation with the GP. The quality of the VC was highly dependent on the RN's ability to function as the hub in the emergency room. Conclusion: Patients in rural areas perceived being included in 'the team' during VC, however they experienced disadvantages with the system on individual basis. The nursing profession plays an important role, and a proper educational background is crucial to support RNs in their role as the hub of the visit. The GP's presence via VC was seen as important, but to fully enable them to fulfil their commitments as medical professionals, VC needs to be further improved with education and support from technical devices. [ABSTRACT FROM AUTHOR]

Purpose: Discharge summaries are important tools for communication between health care levels and can ensure continuity of rehabilitation. This study aims to gain insight into the content of discharge summaries written by hospital physiotherapists and occupational therapists regarding patients with stroke, and their adherence to recommended criteria for discharge summaries. Material and methods: 31 physiotherapy and multidisciplinary discharge summaries, for stroke patients discharged home from hospital with need of follow-up, were included in the study. We employed qualitative content analysis and descriptive statistics to explore and describe the content. Results: The physiotherapists and occupational therapists adhered to the recommended criteria for content in varying degree. The main focus for physiotherapists and occupational therapists were description of ADL, sensorimotor and general cognitive functions, they rarely report tolerance to exercise, and the specific cognitive abilities to follow instruction and learn were often omitted. Less focus was put on patients' experiences and needs during acute stroke, and description of goals were omitted in the physiotherapy discharge summaries. Conclusion: While the physiotherapists and occupational therapists complement each other in their assessment of patients and inform the reader about both sensorimotor and cognitive functions and abilities, they omit some of the specific criteria for rehabilitation. Despite the omissions, the information provided is specific to the patients' function and needs. [ABSTRACT FROM AUTHOR]

Objective Background Methods Results Conclusions To better understand the breadth and frequency of symptoms across the phases of the migraine cycle using data captured from qualitative patient interviews conducted through the Migraine Clinical Outcome Assessment System (MiCOAS) project.People living with migraine experience a range of symptoms across the pre‐headache, headache, post‐headache, and interictal phases of the migraine cycle. Although clinical diagnostic criteria and clinical trial endpoints focus largely on cardinal symptoms or monthly migraine days, migraine symptom profiles are far more complex. As a part of the MiCOAS project, semi‐structured qualitative interviews were undertaken to better understand the migraine‐related symptomology from the patient's viewpoint.This concept elicitation study used iterative purposeful sampling to select 40 people with self‐reported medical diagnosis of migraine for interviews that were conducted via audio‐only web conferencing. Key topics related to migraine symptoms, including mood/emotion symptoms, were identified using content analysis. Interview transcripts were also coded to reflect the phase of migraine under discussion, so that patient experiences could be compared by phase.Forty participants (50%, n = 20 episodic migraine; 50%, n = 20 chronic migraine), aged from 21 to 70 years old reported a total of 60 unique symptoms, which were categorized into 30 broader symptom categories. Participants reported between 7 and 22 unique symptom categories across all phases. During pre‐headache and headache, participants reported a median of 7.5 (interquartile range [IQR] = 5.5) and 8 (IQR = 4.0) different symptom categories compared to 4 (IQR = 3.0) and 1.5 (IQR = 2.5) for the post‐headache and interictal periods, respectively. Head pain during the headache phase was the only universally reported symptom (100%, n = 40). Pooling across all phases, the next most reported symptoms were light sensitivity (93%, n = 37), nausea (88%, n = 35), irritability/impatience (83%, n = 24), sound sensitivity (80%, n = 32), and fatigue/exhaustion (80%, n = 32). One or more interictal symptoms were reported by 73% (n = 29) of participants and included mood/emotion symptoms, such as anxiety (30%, n = 12), depression (18%, n = 7), and anger (15%, n = 6), as well as cardinal symptoms, such as light sensitivity (13%, n = 5) and nausea (13%, n = 5).Patients experience a range of symptoms across the phases of the migraine cycle. Results often aligned with clinical expectations, but non‐cardinal migraine‐related symptoms were reported both inside and outside the headache phase, including between attacks. These discoveries highlight the importance of assessing a range of symptoms and timing when developing patient‐reported outcome measures for migraine clinical trials. [ABSTRACT FROM AUTHOR]

Introduction: Qualitative research methods can be used to obtain a deeper understanding of patient experience by collecting information in the patients’ own words about their encounters, perspectives, and feelings. In this study, patients with schizophrenia were interviewed to capture their voice and to complement the quantitative data typically obtained in clinical trials. Methods: Semi-structured exit interviews were conducted with 41 patients who completed or prematurely discontinued from a phase 3, open-label trial (NCT02873208). The interview guide included open-ended questions on current and prior disease burden, symptoms, quality of life, and treatment experiences. Steps taken to reduce interview stress and secure the validity of data included interviewer sensitivity training specific to mental health conditions and schizophrenia, use of in-person interviews whenever possible and use of videoconferencing for remote interviews to promote trust and comfort, and working closely with clinical site staff to identify patient eligibility and willingness to participate. Transcripts based on audio recordings were content coded and analyzed using thematic analysis; a post-hoc quantitative content analysis was conducted. Results: Patients reported that the symptoms of schizophrenia negatively impacted their work, relationships, self-esteem, emotional health, and daily activities. Most patients had positive experiences with medications that alleviated hallucinations, depression, and anxiety. However, side effects of medications were associated with negative impacts on physical, emotional, behavioral, and cognitive health. Lack of energy/drowsiness, weight gain, mood changes, and involuntary movements were the most common side effects reported with the use of antipsychotic medications. Patients reported unmet treatment needs related to better symptom control and to improved social and physical functioning. Conclusion: Collection of qualitative information within a schizophrenia clinical development process provides value and insights into patients’ views on burden of illness, experiences with previous medications, and experiences following participation in a clinical trial and can inform design for future studies. [ABSTRACT FROM AUTHOR]

Peritoneal carcinomatosis (PC) is common in patients with advanced gynecologic and gastrointestinal cancers. Frequently, patients with PC undergo palliative surgery or procedures to manage disease-related complications and side effects. However, there are limited data regarding patients' and family caregivers' decision-making processes about these procedures. Thus, we sought to describe the decision-making experiences of patients with PC who elect to pursue palliative surgical procedures and their family caregivers. We conducted a secondary analysis of qualitative data collected during a pilot randomized controlled trial of BOLSTER, a nurse-led telehealth intervention for patients with PC and their caregivers after an acute hospitalization and palliative procedure. Participants in both study arms described their experiences in semi-structured interviews. We re-analyzed coded qualitative data with a focus on understanding decision-making experiences surrounding palliative surgery and procedures using conventional content analysis. Interviews from 32 participants, 23 patients and 9 caregivers, were analyzed. Participants reported their decision-making was complicated by illness uncertainty and a desire for clear, effective communication with surgical and medical oncology teams. Participants requested more information about the impact of palliative procedures on their daily life. Several also noted that, without improved understanding, a misalignment between patient and family caregiver goals and palliative procedures may inadvertently increase suffering. Discussions related to patients' goals and preferences can improve the quality of treatment decision-making in patients with PC and their caregivers. Future research should test interventions to improve advanced cancer patients' illness understanding and decision-making surrounding palliative surgery and procedures. • Patients and their caregivers may feel poorly prepared to decide whether or not to proceed with a palliative procedure. • Increased decision-making support surrounding palliative procedures and surgery is necessary. • Interventions that foster human connection may improve treatment decision-making. [ABSTRACT FROM AUTHOR]

Patients undergoing gynecologic cancer surgery at our centre are recommended up to 28 days of enoxaparin for extended post-operative thromboprophylaxis (EP). Baseline survey revealed 92% patient adherence, but highlighted negative effects on patient experience due to the injectable route of administration. We aimed to improve patient experience by reducing pain and bruising by 50%, increasing adherence by 5%, and reducing out-of-pocket cost after introducing apixaban as an oral alternative for EP. In this interrupted time series quality improvement study, gynecologic cancer patients were offered a choice between apixaban (2.5 mg orally twice daily) or enoxaparin (40 mg subcutaneously once daily) at time of discharge. A multidisciplinary team informed project design, implementation, and evaluation. Process interventions included standardized orders, patient and care team education programs. Telephone survey at 1 and 6 weeks and chart audit informed outcome, process, and balancing measures. From August to October 2022, 127 consecutive patients were included. Apixaban was chosen by 84%. Survey response rate was 74%. Patients who chose apixaban reported significantly reduced pain, bruising, increased confidence with administration, and less negative impact of the medication (p < 0.0001 for all). Adherence was unchanged (92%). The proportion of patients paying less than $125 (apixaban cost threshold) increased from 45% to 91%. There was no difference in bleeding and no VTE events. Introduction of apixaban for EP was associated with significant improvement in patient-reported quality measures and reduced financial toxicity with no effect on adherence or balancing measures. Apixaban is the preferred anticoagulant for EP at our centre. • Patients prefer oral over injectable anticoagulants for extended VTE prophylaxis after gynecologic cancer surgery. • Patients have improved confidence with administration, less pain and less bruising with apixaban compared to enoxaparin. • Apixaban was less expensive than enoxaparin. • Multi-disciplinary education, patient counselling, and order sets are effective interventions for program implementation. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To understand the link between severe mental illness and suboptimal physical health • To enhance your knowledge of the complex and multifaceted causes of diagnostic overshadowing • To contribute towards revalidation as part of your 35 hours of CPD (UK readers) • To contribute towards your professional development and local registration renewal requirements (non-UK readers). People with severe mental illness (SMI) often have suboptimal physical health and associated outcomes. An important issue for mental health nurses to be aware of is diagnostic overshadowing, which occurs when healthcare professionals misattribute a person’s physical health symptoms to their existing mental illness. This misattribution increases the likelihood of delays in treatment, potentially giving rise to complications that further negatively influence health outcomes. While the causes of diagnostic overshadowing are complex and multifaceted, mental health nurses need to ensure that their practice is not a contributing factor, which requires ongoing self-reflection on their knowledge, skills and attitudes. This article defines diagnostic overshadowing, proposes potential explanations for why it may occur and offers practical strategies to prevent it. Raising awareness of diagnostic overshadowing could help to improve physical health outcomes for people with SMI. [ABSTRACT FROM AUTHOR]

Background: Medications for opioid use disorder (MOUD) including buprenorphine are effective, but underutilized. Rural patients experience pronounced disparities in access. To reach rural patients, the US Department of Veterans Affairs (VA) has sought to expand buprenorphine prescribing beyond specialty settings and into primary care. Objective: Although challenges remain, some rural VA health care systems have begun offering opioid use disorder (OUD) treatment with buprenorphine in primary care. We conducted interviews with clinicians, leaders, and staff within these systems to understand how this outcome had been achieved. Design: Using administrative data from the VA Corporate Data Warehouse (CDW), we identified rural VA health care systems that had improved their rate of primary care–based buprenorphine prescribing over the period 2015–2020. We conducted qualitative interviews (n = 30) with staff involved in implementing or prescribing buprenorphine in these systems to understand the processes that had facilitated implementation. Participants: Clinicians, staff, and leaders embedded within rural VA health care systems located in the Northwest, West, Midwest (2), South, and Northeast. Approach: Qualitative interviews were analyzed using a mixed inductive/deductive approach. Key Results: Interviews revealed the processes through which buprenorphine was integrated into primary care, as well as processes insufficient to enact change. Implementation was often initially catalyzed through a targeted hire. Champions then engaged clinicians and leaders one-on-one to "pitch" the case, describe concordance between buprenorphine prescribing and existing goals, and delineate the supportive role that they could provide. Sites were prepared for implementation by developing new clinical teams and redesigning clinical processes. Each of these processes was made possible with the active, instrumental support of leadership. Conclusions: Results suggest that rural systems seeking to improve buprenorphine accessibility in primary care may need to alter primary care structures to accommodate buprenorphine prescribing, whether through new hires, team development, or clinical redesign. [ABSTRACT FROM AUTHOR]

This document presents the findings of a study that examined the experiences of older adults with limited English proficiency (LEP) in receiving preventive services and interacting with their healthcare providers. The study found that compared to older adults with English proficiency (EP), those with LEP had similar rates of receiving preventive services but reported poorer experiences with their healthcare providers. However, patients with LEP who had visit accompaniment had better experiences with their providers, including better communication, respect, and time spent with the patient. The study suggests that strategies to facilitate accompaniment, such as after-hours visits, may help improve the experiences of patients with LEP. The study acknowledges limitations, such as the cross-sectional design and self-reported data, and recommends interventions to improve the experiences of patients with LEP, such as interpreter use, AI-assisted translation, and multilingual health information. [Extracted from the article]

Background: Community health centers grapple with high no-show rates, posing challenges to patient access and primary care provider (PCP) utilization. Aim: To address these challenges, we implemented a virtual waiting room (VWR) program in April 2023 to enhance patient access and boost PCP utilization. Setting: Academic community health center in a small urban city in Massachusetts. Participants: Community health patients (n = 8706) and PCP (n = 14). Program Description: The VWR program, initiated in April 2023, involved nurse triage of same-day visit requests for telehealth appropriateness, then placing patients in a standby pool to fill in as a telehealth visit for no-shows or last-minute cancellations in PCP schedules. Program Evaluation: Post-implementation, clinic utilization rates between July and September improved from 75.2% in 2022 to 81.2% in 2023 (p < 0.01). PCP feedback was universally positive. Patients experienced a mean wait time of 1.9 h, offering a timely and convenient alternative to urgent care or the ER. Discussion: The VWR is aligned with the quadruple aim of improving patient experience, population health, cost-effectiveness, and PCP satisfaction through improving same-day access and improving PCP schedule utilization. This innovative and reproducible approach in outpatient offices utilizing telehealth holds the potential for enhancing timely access across various medical disciplines. [ABSTRACT FROM AUTHOR]

This document provides recommendations for faculty development in addressing implicit bias in clinical encounters and clinical learning environments. Implicit bias, which refers to unconscious associations about social identity groups, can impact clinical practice behaviors and contribute to health disparities. The document proposes a skills-based, longitudinal approach to faculty development that combines the Implicit Bias Recognition and Management framework with Transformational Learning Theory. It suggests content areas for faculty development programs, such as introducing implicit bias recognition and management, exploring personal narratives, restoring encounters when bias is perceived, and addressing bias within a clinical care team. The document emphasizes the importance of perspective-taking and developing skills to restore rapport when bias is perceived, and suggests using role-plays and simulations for practice. The authors argue that formal training on implicit bias for faculty can improve patient and learning outcomes, and these recommendations align with the mandates of medical education organizations to promote excellence and equity in healthcare. [Extracted from the article]

This article explores the development and testing of a new metric to assess and improve productivity in primary care clinics. The metric focuses on the value of care rather than just the quantity, and integrates four primary care outputs into an efficiency calculation. The study found wide variation in efficiency across clinics, with only a small percentage classified as efficient. The metric shows promise for supporting improvement initiatives and providing feedback to healthcare system leaders. [Extracted from the article]

Background: Opioid use disorder (OUD) is a chronic condition that requires regular visits and care continuity. Telehealth implementation has created multiple visit modalities for OUD care. There is limited knowledge of patients' and clinicians' perceptions and experiences related to multi-modality care and when different modalities might be best employed. Objective: To identify patients' and clinicians' experiences with multiple visit modalities for OUD treatment in primary care. Design: Comparative case study, using video- and telephone-based semi-structured interviews. Participants: Patients being treated for OUD (n = 19) and clinicians who provided OUD care (n = 15) from two primary care clinics within the same healthcare system. Approach: Using an inductive approach, interviews were analyzed to identify patients' and clinicians' experiences with receiving/delivering OUD care via different visit modalities. Clinicians' and patients' experiences were compared using a group analytical process. Key Results: Patients and clinicians valued having multiple modalities available for care, with flexibility identified as a key benefit. Patients highlighted the decreased burden of travel and less social anxiety with telehealth visits. Similarly, clinicians reported that telehealth decreased medical intrusion into the lives of patients stable in recovery. Patients and clinicians saw the value of in-person visits when establishing care and for patients needing additional support. In-person visits allowed the ability to conduct urine drug testing, and to foster relationships and trust building, which were more difficult, but not impossible via a telehealth visit. Patients preferred telephone over video visits, as these were more private and more convenient. Clinicians identified benefits of video, including being able to both hear and see the patient, but often deferred to patient preference. Conclusions: Considerations for utilization of visit modalities for OUD care were identified based on patients' needs and preferences, which often changed over the course of treatment. Continued research is needed determine how visit modalities impact patient outcomes. [ABSTRACT FROM AUTHOR]

Objective: Determine whether patient-level or provider-level factors have greater influence on patient satisfaction scores in an academic general internal medicine clinic. Methods: Two years of data (2017–2019) from the Clinician and Group Consumer Assessment of Healthcare Providers and Systems (CGCAHPS) surveys from ambulatory internal medicine clinic visits in an academic health center located in the Midwest United States were used. Patient satisfaction was measured using the overall provider satisfaction score (0–10), dichotomized with 9–10 defined as satisfactory and 0–8 as unsatisfactory. Provider-level independent variables included age, sex, race/ethnicity, provider type, service type, clinical effort, academic rank, and years since graduation. Patient-level factors included age, sex, race/ethnicity, education, and Epic Risk Score. Generalized mixed-effects logistic regression models were used to investigate associations between top-box satisfaction score and patient- and provider-level factors, accounting for the nesting of patients within providers. Results: Thirty-three providers and 4597 patients were included in the analysis. Male providers (OR, 1.57; 95% CI, 1.00, 2.47), minority group 2 (OR, 3.54; 95% CI, 1.24, 10.07) and minority group 3 (OR, 6.04; 95% CI, 1.45, 25.12), faculty (OR, 3.83; 95% CI, 1.56, 9.36), and primary care providers (OR, 5.60; 95% CI, 1.62, 19.34) had increased odds of having a top-box rating compared with females, minority group 1, advanced practice providers, and perioperative providers respectively. Age was the only patient independent correlate of top-box rating with a 3% increased odds of top-box rating for every year increase in age (OR, 1.03; 95% CI 1.02, 1.03). Conclusions: In this academic general internal medicine clinic, top-box satisfaction scores were more strongly associated with provider-level factors, including provider race/ethnicity, provider type, and service type, as opposed to patient-level factors. Further research is needed to confirm these findings and identify potential system-level interventions. [ABSTRACT FROM AUTHOR]

To compare health-related quality of life (QoL) in urinary, bowel, and sexual domains after combined external beam radiation therapy (EBRT) and either low-dose rate (LDR) or high-dose rate (HDR) prostate brachytherapy (BT). Eligible men with intermediate or high-risk prostate cancer treated with combined pelvic EBRT and BT were randomly assigned to either HDR (15 Gy) or LDR (110 Gy) boost. International Prostate Symptom Score, Index of Erectile Function, and Expanded Prostate Cancer Composite were collected at baseline, 1, 3, 6, and 12 months, every 6 months to 3 years and then annually along with prostate-specific antigen/testosterone. Fisher's exact test compared categorical variables and the Mann-Whitney U test Expanded Prostate Cancer Index Composite (EPIC) domain scores. From January 2014 to December 2019, a random number generator assigned 195 men: 108 to HDR and 87 to LDR. Median age was 71 years. Risk group was high in 57% and unfavorable intermediate in 43%. Androgen deprivation (used in 74%) began with 3 months neoadjuvant and continued for median 12 months. Baseline EPIC scores were similar for the LDR/HDR cohorts: 89 and 88 respectively for Genito-urinary; 92 and 93 for Gastro-intestinal. EPIC urinary scores decreased at 1 month for HDR but recovered promptly to a steady state by 6 months. LDR scores reached a nadir at 3 months with slow recovery to 18 months, after which urinary QoL was similar for HDR and LDR. Bowel QOL scores fell in both cohorts reaching respective nadirs at 12 months. HDR patients recovered close to baseline and maintained higher scores than LDR patients to 5 years. The decline for LDR patients remained more than the minimum clinically important difference out to 5 years. The patient experience for combined EBRT and prostate BT is improved with HDR BT. Urinary QoL improves over time to be equivalent between the 2 modalities after 18 months, but LDR patients report lasting bowel symptoms. [ABSTRACT FROM AUTHOR]

Using diagnostic computed tomography (dCT) scans instead of CT simulation (CTsim) scans can increase departmental efficiency and reduce patient burden. The goal of the DART trial was to assess the efficacy and acceptability of dCT-based planning workflows with a focus on patient experiences, plan deliverability and adequacy of target coverage, and workflows. Patients undergoing same-day CTsim and treatment for palliative radiation therapy to thoracic, abdominopelvic, or proximal limb targets with a recent dCT (within 28 days) in a reproducible position were eligible. After stratifying by target type (bone or soft tissue vs. visceral), participants were randomized (1:2 ratio) between CTsim-based (CTsim arm) vs. dCT-based planning (dCT arm). The primary endpoint was time in center (TIC), defined as total time spent in the cancer center on first day of treatment, from first radiation department appointment to first fraction completion. Secondary endpoints included plan deliverability, adequacy of target coverage, and stakeholder acceptability. Thirty-three patients (42 treatment sites) were enrolled between June 2022 and April 2023. The median age was 72 (interquartile range [IQR]: 67-78), 73% were male, and the most common primary cancers were lung (33%), prostate (24%), and breast (12%). The most common dose and fractionations were 8 Gy in 1 and 20 Gy in 5 fractions (50% and 43% of plans, respectively). TIC was 4.7 ± 1.1 hours (mean ± SD) in the CTsim arm vs. 0.41 ± 0.14 hours in the dCT arm (P <.001). All dCT plans were deliverable. All plans in both arms were rated as "acceptable" (80% CTsim; 81% dCT) or "acceptable with minor deviation" (20% CTsim; 19% dCT). Patient perception of acceptability was similar in both arms with the exception of time burden, which was rated as "acceptable" by 50% in the CTsim arm vs. 90% in the dCT arm (P =.025). dCT-based radiation planning substantially reduced TIC without detriment in plan deliverability or quality and had a tangible impact on patient experience with reduced patient-reported time burden. [ABSTRACT FROM AUTHOR]

Objective: The study objective was to inform patient-centered care for adolescent insomnia by describing adolescents' perspectives on insomnia. Specific constructs of interest included: 1) factors that contributed to insomnia development or maintenance, 2) impact of insomnia on day-to-day life, 3) recommended research priorities, and 4) overall experience living with insomnia. Method: A convenience sample of adolescents (ages 13–18 years) self-identifying with insomnia symptoms was recruited through social media. Respondents (n = 3,014) completed an online survey. Responses to an open-ended item assessing patient experience were coded using thematic analysis. Results: Participants identified as 70.8% White non-Hispanic, 77.0% female, and lived in one of five English-speaking countries (United States, United Kingdom, Canada, Australia, or New Zealand). Most (87.5%) met DSM-V diagnostic criteria for insomnia. The most common contributory factors to insomnia endorsed were stress (72.1%) and depressed mood (63.6%), while common impact areas were mood (72.2%), focus (61.0%), and pain (49.7%). Patient-centered research priorities were identifying insomnia causes (66.4%) and early detection (66.1%). Common adolescent experiences included high distress levels, feelings of invalidation, and helplessness about their insomnia. Conclusions: Adolescents with insomnia offer a unique perspective that should inform patient-centered research and care. There is a need for heightened screening and awareness about insomnia as a condition that causes significant distress and impairment for adolescents. To provide validating care, providers should recognize the multifaceted causes of insomnia. [ABSTRACT FROM AUTHOR]

Patient journey mapping, a novel method to visualize all the interactions a patient might have with the health system, is increasingly being adopted by the healthcare industry to identify challenges patients face, with the goal of improving health outcomes. However, patient journey maps are often used internally within pharma companies and are not published widely. Here, I conducted in-depth interviews with eight Indian patients/caregivers dealing with chronic and/or serious conditions; seven of the interviewees were living in India and spoke entirely from the perspective of the Indian health system, whereas one spoke from his experience of living in India, Ireland, and the UK. Using insights from these interviews, drawing on my own experience as a patient living with a rare disease and multiple comorbidities, and seeking feedback from several international patient advocates and industry professionals, I constructed a detailed map visualizing the collective journey of patients with serious/chronic conditions. Apart from showing the different stages in the patient journey, the map visualizes the associated stress levels, pain points (issues leading to a negative experience), emotions, and information-seeking behavior. One key insight that emerges is that along with a range of highly variable emotions patients experience, stress is a consistent factor throughout the patient journey. In many cases, the stress is caused or exacerbated by factors that can be avoided, such as long wait times, procedural hassles, inadequate or inaccurate information, and lack of empathy in interactions with healthcare professionals. The frustrations patients experience stem from a mix of underlying practical/tangible and emotional/aspirational needs. I have discussed these needs at length and provided suggestions for changes that could be implemented in the health system to meet these needs better. While my analysis presented here is generally framed from the context of the Indian health system, and some points discussed might have nuances in other health systems, the themes and insights provided are relevant to all patients and their journey, anywhere in the world. Pharmaceutical industry professionals, healthcare providers, and policymakers may benefit from these insights and may apply them to make strategic decisions and changes in their approach, with the goal of improving patient experience and health outcomes globally. [ABSTRACT FROM AUTHOR]

Background and Objectives: Key opinion leader (KOL) interviews were conducted by the Benefit–Risk Assessment Planning (BRAP) Taskforce to seek expert opinion mainly from industry and regulatory bodies, about the current status and future direction of benefit–risk assessment (BRA) planning in the lifecycle of medical product development. The findings from these interviews are intended to help communication concerning planning for BRA between industry and regulators and shape future guidance. Methods: Key opinion leader interviews consisted of 5 questions related to BRA planning, which were administered to volunteers (mainly clinicians and statisticians) within a pool of experienced pharmaceutical and medical device professionals representing academia, industry, regulatory agencies and a patient group. The interviewees' responses to the 5 questions were summarized. To analyze the qualitative data, a Coding System was developed to label themes arising from the interviews. The key findings from the interviews were summarized into a Master Template. A quantitative analysis based on descriptive statistics was also conducted. Results: Of the 27 interviewees, there were 11 professionals from regulatory agencies, 11 from industry, 4 from academia and 1 from a patient advocacy group. Key findings based on the comments provided by 48% of the interviewees indicated the need of incorporating BRA into other (e.g., existing) processes with the importance of alignment between processes being stressed in the comments provided by 59% of the interviewees. Commencing BRA early in the product lifecycle was emphasized in comments provided by 44% of the interviewees. Among other needs identified were an appropriate contextualization of benefits and risks (based on comments provided by 41% of interviewees) through adoption of an integrated approach with structured support by regulatory agencies and a need for understanding the audience with better communication of benefit–risk (BR) among all stakeholders (based on comments provided by 44% of the interviewees). Almost all comments provided by interviewees (96%) highlighted the importance of utilizing patient experience/preference to guide new product development and BRA. Comments provided by 74% of the interviewees expressed the need to understand patient tolerance for risk and trade-offs, with a majority (78%) of interviewees highlighting how to gather information, and 59% stressing the need for the selection and development of appropriate methodologies as important considerations for enhancing the quality and relevance of the data collected from patients. Conclusions: Interviewees indicated that BRA should commence early in the medical product development and inform decision-making throughout the product lifecycle. Better planning and integration of BRA into existing processes within industry would be valuable. The importance of incorporating the patient voice into BRA and medical product development was emphasized. Other key findings from the KOL interviews included a need for improved communication of BR information, and establishment of methodologies for performing BRA and soliciting patient input. [ABSTRACT FROM AUTHOR]

Background and Aims: Transjugular intrahepatic portosystemic shunt (TIPS) is an established procedure for the treatment of several complications of portal hypertension (PH), including non‐neoplastic portal vein thrombosis (PVT). Selection criteria for TIPS in PVT are not yet well established. Despite anecdotal, cases of thromboembolic events from paradoxical embolism due to the presence of patent foramen ovale (PFO) after TIPS placement have been reported in the literature. Therefore, we aimed at describing our experience in patients with non‐neoplastic splanchnic vein thrombosis (SVT) who underwent TIPS following PFO screening. Methods: We conducted a single‐centre retrospective study, including consecutive patients who underwent TIPS for the complications of cirrhotic and non‐cirrhotic portal hypertension (NCPH) and having SVT. Results: Of 100 TIPS placed in patients with SVT, 85 patients were screened for PFO by bubble‐contrast transthoracic echocardiography (TTE) with PFO being detected in 22 (26%) cases. PFO was more frequently detected in patients with non‐cirrhotic portal hypertension (NCPH) (23% in the PFO group vs. 6% in those without PFO, p =.04) and cavernomatosis (46% in the PFO group vs. 19% in those without PFO, p =.008). Percutaneous closure was effectively performed in 11 (50%) after multidisciplinary evaluation of anatomical and clinical features. No major complications were observed following closure. Conclusions: PFO screening and treatment may be considered feasible for patients with SVT who undergo TIPS placement. [ABSTRACT FROM AUTHOR]

Objective: Fear of cancer recurrence (FCR) may develop into elevated anxiety or depression symptoms, but few risk factors for this development are known. Objective recurrence risk estimation is possible in some cancers. Using theories of risk communication and phobias, we examined whether the proportionality of FCR to known objective recurrence risk influences the development of anxiety and depression symptoms. Method: Uveal melanoma (UM) patients can opt for reliable prognostic testing. Patients experience either a 'good' or 'poor' prognostic outcome, whereby 10‐year mortality due to metastatic disease is, respectively, low or high. In a five‐year prospective study of a consecutive sample of 589 UM survivors, we used random intercept cross lagged panel analyses to examine whether proportionality differentially influences whether FCR progresses to anxiety and depression. Results: Positive cross paths predicting anxiety from FCR were stronger in the poor prognosis group than the good prognosis and not tested groups. Prognostic group differences were not evident for depression. Conclusions: FCR was more likely to progress to elevated anxiety symptoms when proportionate to the known objective recurrence risk. Objective evidence may play a prominent role in the development and structure of fear because it assumes a high epistemic weight that activates a wide range of emotional and cognitive responses. Interventions that assist survivors to tolerate FCR in the presence of higher recurrence risks may be important in reducing anxiety symptoms. [ABSTRACT FROM AUTHOR]

• Induction of labor can be associated with negative women experience. • Our study uses a satisfaction questionnaire validated for induction of labor. • Oral misoprostol improve induced patient experience by diminishing pain and discomfort. • We found no significant differences in obstetrical and neonatal outcomes. Cervical ripening for induction of labor is often associated with negative patient experience. The debate over the most effective cervical ripening method persist, with a significant gap in research specifically addressing patient satisfaction. Our study aims to compare patient experience with two induction methods, slow-release intravaginal dinoprostone device and orally administered misoprostol. We conducted a before-and-after comparative study at a university tertiary hospital, including all patients undergoing cervical ripening with a Bishop score of 3 or lower. Our study compared two separate two-month periods, where the methods for cervical ripening differed. The first period employed an intravaginal dinoprostone slow-release device, while the second period used oral misoprostol. The primary outcome was patient experience, assessed using the EXIT questionnaire, a standardized and validated self-reported measure. Secondary outcomes were efficacy and safety outcomes. A total of 165 patients were included, 81 induced with dinoprostone and 84 induced with misoprostol. The EXIT questionnaire completion rate was 67.9 % (n = 55) in the dinoprostone group and 76.1 % (n = 64) in the misoprostol group (p = 0.23). Patients induced with misoprostol reported higher levels of satisfaction compared to those induced with dinoprostone, which can be attributed to reduced discomfort associated with the induction process (mean satisfaction score 2.26 ± 0.98 versus 2.80 ± 0.85 on a 1 to 5 likert-scale, p-value < 0.01). Adverse effects were reported less frequently with misoprostol compared to dinoprostone (20.2 % vs 48.1 %, p-value < 0.01). Time between cervical ripening and delivery was shorter in the misoprostol group (27.0 ± 10.2 h vs 32.5 ± 10.0, p < 0.01). There were no difference in mode of delivery or other obstetrical and neonatal outcomes. For women undergoing cervical ripening, oral misoprostol appears to be a less invasive method for labor induction, associated with higher levels of satisfaction and reduced discomfort compared to the intravaginal dinoprostone slow-release device. [ABSTRACT FROM AUTHOR]

Introduction: Anti-vascular endothelial growth factor (VEGF) agents have been the standard treatment for retinal diseases for almost two decades. These treatments are administered via intravitreal injection using single-use vials or prefilled syringes (PFS). In this systematic review, we evaluate health care resource use and clinical outcomes and experiences with PFS for intravitreal injection of anti-VEGF treatments. Methods: MEDLINE, EMBASE, and The Cochrane Library were searched from January 1, 2015 to February 8, 2024 to identify literature reporting outcomes regarding procedural efficiency, health care resource use, patient and clinician experiences, and safety for currently approved anti-VEGFs (ranibizumab, aflibercept, brolucizumab) administered using PFS. Comparators were vial-based injections of the same anti-VEGFs. Results: A total of 36 publications met the criteria for inclusion in the systematic literature review; the majority were non-randomized studies, with a small number of reviews, case series, survey studies, and opinion articles. Publications reported that preparation times were significantly shorter for PFS (40.3–57.9 s) versus vials (ranibizumab, 62.8–98.0 s; aflibercept, 71.9–79.5 s), with no differences in product stability between PFS and vials. Clinicians expressed a preference for PFS and thought PFS were faster, easier to use, and had increased safety versus vials. Publications consistently reported significantly lower rates of endophthalmitis per injection with PFS versus vials (ranibizumab PFS, 0–0.02%; aflibercept PFS, 0.01–0.02%; ranibizumab vial, 0.02–0.05%; aflibercept vial, 0.02–0.06%). Four publications reported increased rates of transient vision loss after aflibercept PFS injection versus vial-based injection. No publications reported outcomes regarding health care resource use or patient experiences. Conclusion: The available literature supports the increased procedural efficiency of PFS versus vial-based intravitreal injection of anti-VEGFs. PFS are positively perceived by clinicians and have a safety benefit in the form of a decreased risk of endophthalmitis versus vials. Plain Language Summary: Anti-vascular endothelial growth factor (VEGF) drugs, given by injection into the eye, are commonly used to treat diseases that affect the back of the eye (the retina). Anti-VEGF drugs are provided in small containers (vials) or in syringes that are already filled with the drug (prefilled syringes). When someone is treated with an anti-VEGF drug from a vial, the drug must first be taken from the vial using a needle and syringe, and then injected. When someone is treated with an anti-VEGF drug from a prefilled syringe, the drug is injected directly from the prefilled syringe, i.e., there are fewer steps involved when a prefilled syringe is used. We searched the medical literature to see if there were differences in clinical outcomes and experiences between prefilled syringes and vials when used to inject anti-VEGF drugs. Clinicians spent about 50% less time getting ready for injections when prefilled syringes were used than when vials were used. Clinicians also preferred to use prefilled syringes than vials for injecting anti-VEGF drugs. Clinicians reported that prefilled syringes were easier to use, faster, and safer than vials. Patients who were given injections from prefilled syringes had a lower rate of infection of the inside of the eye (endophthalmitis) than patients who were given injections from vials. These results indicate that using prefilled syringes for injecting drugs into the eye can improve efficiency at ophthalmology clinics and improve safety for patients. [ABSTRACT FROM AUTHOR]

Background: Acute retinal necrosis is a rare but devastating acute posterior uveitis caused by a member of the herpes virus family. We report an extremely rare ARN case following penetrating trauma in the contralateral eye. Case presentation: A 61-year-old male was misdiagnosed as sympathetic ophthalmia due to a penetrating trauma history of the contralateral eye. The subsequent administration of high-dose IVMP therapy led to rapid progression of the retinal necrosis. ARN was strongly suspected base on the clinical examination and confirmed by the PCR aqueous testing. The patient finally got good visual outcomes by the effective and prompt antiviral treatment. Conclusion: Ophthalmologists should be alert to the possibility that penetrating injury can trigger the activation of latent viruses. If a patient experiences visual symptoms in the contralateral eye after an open-globe injury, it is recommended that a thorough peripheral retinal examination be performed to avoid missing ARN. [ABSTRACT FROM AUTHOR]

Background and Objective: Multiple myeloma is a rare incurable hematological cancer in which most patients relapse or become refractory to treatment. This systematic literature review aimed to critically review the existing economic models used in economic evaluations of systemic treatments for relapsed/refractory multiple myeloma and to summarize how the models addressed differences in the line of therapy and exposure to prior treatment. Methods: Following a pre-approved protocol, literature searches were conducted on 17 February, 2023, in relevant databases for models published since 2014. Additionally, key health technology assessment agency websites were manually searched for models published as part of submission dossiers since 2018. Reported information related to model conceptualization, structure, uncertainty, validation, and transparency were extracted into a pre-defined extraction sheet. Results: In total, 49 models assessing a wide range of interventions across multiple lines of therapy were included. Only five models specific to heavily pre-treated patients and/or those who were refractory to multiple treatment classes were identified. Most models followed a conventional simple methodology, such as partitioned survival (n = 28) or Markov models (n = 9). All included models evaluated specific interventions rather than the whole treatment sequence. Where subsequent therapies were included in the model, these were generally only considered from a cost and resource use perspective. The models generally used overall and progression-free survival as model inputs, although data were often immature. Sensitivity analyses were frequently reported (n = 41) whereas validation was only considered in less than half (n = 19) of the models. Conclusions: Published economic models in relapsed/refractory multiple myeloma rarely followed an individual patient approach, mainly owing to the higher need for complex data assumptions compared with simpler modeling approaches. As many patients experience disease progression on multiple treatment lines, there is a growing need for modeling complex treatment strategies, leading to more sophisticated approaches in the future. Maintaining transparency, high reporting standards, and thorough analyses of uncertainty are crucial to support these advancements. [ABSTRACT FROM AUTHOR]

Background: Many patients in the Intensive Care Unit (ICU) experience delirium. Understanding the patient perspective of delirium is important to improve care and reduce suffering. The aim of our study was to investigate the subjective patient experience of delirium, delirium‐related distress, and delirium management in ICU. Methods: Our study had a qualitative multicenter design applying individual interviews and thematic analysis. Participants were critically ill adult patients that were determined delirium positive according to validated delirium screening tools during ICU admission. The interviews were conducted after ICU discharge when patients were delirium‐free as assessed by the "Rapid clinical test for delirium" (4AT) and able to participate in an interview. Results: We interviewed 30 patients choosing the main themes deductively: Delirium experience; Delirium related distress; and Delirium management. Despite variations in recollection detail, ICU survivors consistently reported delirium‐related distress during and after their ICU stay, manifesting as temporal confusion, misinterpretations, and a sense of distrust towards ICU staff. Delusions were characterized by a blend of factual and fictional elements. Impaired short‐term memory hindered communication and intensified feelings of isolation, neglect, and loss of control. Conclusion: The ICU survivors in our study recalled delirium as an unpleasant and frightening experience, often leading to delirium‐related distress during and after their ICU stay, indicating the necessity for enhanced assessment and treatment. [ABSTRACT FROM AUTHOR]

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This study evaluates a complex telemedicine-based intervention targeting patients with chronic health problems. Computer tablets and home telemonitoring devices are used by patients to report point-of-care measurements, e.g., blood pressure, blood glucose or oxygen saturation, and to answer health-related questions at a follow-up center. We designed a pragmatic randomized controlled trial to compare the telemedicine-based intervention with usual care in six local centers in Norway. The study outcomes included health-related quality of life (HRQoL) based on the EuroQol questionnaire (EQ-5D-5L), patient experiences, and utilization of healthcare. We also conducted a cost–benefit analysis to inform policy implementation, as well as a process evaluation (reported elsewhere). We used mixed methods to analyze data collected during the trial (health data, survey data and interviews with patients and health personnel) as well as data from national health registers. 735 patients were included during the period from February 2019 to June 2020. One year after inclusion, the effects on the use of healthcare services were mixed. The proportion of patients receiving home-based care services declined, but the number of GP contacts increased in the intervention group compared to the control group. Participants in the intervention group experienced improved HRQoL compared to the control group and were more satisfied with the follow-up of their health. The cost–benefit of the intervention depends largely on the design of the service and the value society places on improved safety and self-efficacy. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To read about the experiences of people with chronic cancer in developing expertise in their condition • To be aware of areas in which CNSs can support people with chronic cancer to develop expertise in their condition • To recognise the need for specialised nurse-led services to support people with chronic cancer to manage and understand their condition. Background: The lifting of the coronavirus disease 2019 (COVID-19) pandemic restrictions in the UK has meant a near-full return to normal life for the general population. However, for patients with chronic cancer, the risk of severe illness from COVID-19 remains high because they are immunocompromised, and they may have various unmet support needs. Aim: To identify areas in which clinical nurse specialists (CNSs) can support people with chronic cancer in the UK to develop expertise in their condition, acting to minimise the risks of anxiety and depression in this population. Method: Narrative online interviews were conducted with seven people with chronic lymphocytic leukaemia. Transcripts were analysed using thematic and narrative methodologies. Findings: Two themes were identified. The first theme, holes in the system, explored the perceived position of chronic cancers at the bottom of the cancer hierarchy, which can cause patients to feel overlooked in terms of NHS service provision. The second theme, co-developed expertise, explored the mechanisms used by patients with chronic cancer to develop expertise in their condition and the role of specialised healthcare professionals in co-developing this expertise. Conclusion: Although the participants often felt let down by the healthcare system, support from CNSs was beneficial and empowered them to develop expertise in their condition. This indicates that there is a need for dedicated nurse-led chronic cancer pathways to minimise the risk of cancer-related anxiety and depression. [ABSTRACT FROM AUTHOR]

Background: Breast cancer treatment is multimodal, but not all patients benefit from each treatment, and many experience morbidities significantly impacting quality of life. There is increasing interest in tailoring breast cancer treatments to optimize oncological outcomes and reduce treatment burden, but it is vital that future trials focus on treatments that most impact patients. This study was designed to explore patient experiences of treatment to inform future research. Methods: An online survey was co-developed with patient advocates to explore respondents' experiences of breast cancer treatment. Questions included simple demographics, treatments received, and views regarding omitting treatments if that is deemed safe. The survey was circulated via social media and patient advocacy groups. Responses were summarized by using simple statistics; free text was analyzed thematically. Results: Of the 235 participants completing the survey, 194 (82.6%) would choose to omit a specific treatment if safe to do so. The most commonly selected treatments were chemotherapy (n = 69, 35.6%) and endocrine therapy (n = 61, 31.4%) mainly due to side effects. Fewer respondents would choose to omit surgery (n = 40, 20.6%) or radiotherapy (n = 20, 10.3%). Several women commented that survival was their "absolute priority" and that high-quality evidence to support the safety of reducing treatment would be essential. Conclusions: Patients with breast cancer are individuals who may wish to optimize different components of their treatment. A portfolio of studies co-designed with patients is needed to establish an evidence base for greater treatment personalization with studies focused on reducing avoidable chemotherapy and endocrine therapy a priority. [ABSTRACT FROM AUTHOR]

Purpose: Value-based healthcare suggested using patient-reported information to complement the information available in the medical records and administrative healthcare data to provide insights into patients' perceptions of satisfaction, experience and self-reported outcomes. However, little attention has been devoted to questions about factors fostering the use of patient-reported information to create value at the system level. Design/methodology/approach: Action research design is carried out to elicit possible triggers using the case of patient-reported experience and outcome data for breast cancer women along their clinical pathway in the clinical breast network of Tuscany (Italy). Findings: The case shows that communication and engagement of multi-stakeholder representation are needed for making information actionable in a multi-level, multispecialty care pathway organized in a clinical network; moreover, political and managerial support from higher level governance is a stimulus for legitimizing the use for quality improvement. At the organizational level, an external facilitator disclosing and discussing real-world uses of collected data is a trigger to link measures to action. Also, clinical champion(s) and clear goals are key success factors. Nonetheless, resource munificent and dedicated information support tools together with education and learning routines are enabling factors. Originality/value: Current literature focuses on key factors that impact performance information use often considering unidimensional performance and internal sources of information. The use of patient/user-reported information is not yet well-studied especially in supporting quality improvement in multi-stakeholder governance. The work appears relevant for the implications it carries, especially for policymakers and public sector managers when confronting the gap in patient-reported measures for quality improvement. [ABSTRACT FROM AUTHOR]

Objective: Examine the literature on the experiences of living with removable dentures (complete or partial) to identify any gaps and provide a map for future research. Background: Increasing proportions of society are living partially dentate with some form of restoration, including removable dentures. Previous studies have reported on the location, materials and usage of these prostheses, along with effects on oral‐health‐related quality of life (OHRQoL). However, less is known about experiences with removable dentures from a patient‐centred perspective. Methods: A scoping review of the qualitative literature was undertaken using the framework of Arksey and O'Malley, updated by Levac et al. Literature searches were carried out using Medline and Web of Science. Papers were screened by title and abstract using inclusion and exclusion criteria. Remaining papers were read in full and excluded if they did not meet the required criteria. Nine papers were included in the final review. Findings: Key themes from these papers were: impact of tooth loss and living without teeth, and its impacts in relation to social position, appearance, confidence and function (chewing and speaking); social norms and tooth loss, including attitudes to tooth retention and treatment costs, and changes in intergenerational norms towards dentures; expectations of treatment, including patients being more involved in decision making, viewing the denture as a "gift" and dentures helping to achieve "an ideal"; living with a removable denture (complete or partial), including patient preparedness for a denture, adaptation and impacts on activities and participation; and the dentist‐patient relationship, including issues with information and communication, and differing priorities between patients and dentists. Conclusion: Little qualitative research exists on experiences of living with a removable denture. Existing literature demonstrates the importance of dispersed activities in differing social, spatial and temporal contexts when wearing removable dentures. Focusing on processes of positive adaptation to dentures and OHRQoL, rather than deficits, is also required to fully understand patients' experiences. Additionally, more complex technological advances may not always be in the best interest of every patient. [ABSTRACT FROM AUTHOR]

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Background: This study aimed to explore the influence of patient-, general practitioners (GP)-, and GP practice-level predictor variables on patient-experienced accessibility to GPs and GP practices. Additionally, we aimed to enhance our understanding of patient-experienced accessibility by analysing the free-text comments from patients who reported lowest accessibility scores to GPs and GP practices. Methods: We performed a secondary analysis of data from a 2021-2022 national Norwegian survey on patient experiences with their GP and GP practice. We identified seven accessibility-related items including experience and acceptance of regular waiting time and for urgent appointments, time spent with the GP, waiting time in the wating-room, and getting in touch with the GP practice by telephone. A composite accessibility score was computed. Predictor variables consisted of patient's self-reported characteristics, as well as background data about the GP and GP practice from National GP registry. The analysis included multiple linear regression of the composite accessibility score and seven accessibility items. Finally, a qualitative analysis was conducted of free-text survey comments among patients that had a score of 0 (unfavourable) on all the seven accessibility items. Results: The key factor for patient-experienced accessibility to general practice was seeing their own GP, showing a statistically significant positive correlation (p<0.001) across all seven accessibility items and the composite accessibility score in regression analyses. Other associations with positive experience included better self-reported health, and at the GP-level, a specialization in general medicine. Conversely, a negative experience was associated with longer time since the last GP consultation, female patients, and a higher number of GPs at the practice. Qualitative data confirmed accessibility challenges, detailing quantitative scores and highlighted that low accessibility scores were related to difficulties in seeing one's own GP. Conclusions: This study highlights the importance of continuity between patient and their GP in improving patients' experiences of accessibility to general practice. Several GP and GP practice-level factors were related to patient-reported accessibility. These results can be used to inform initiatives aimed at improving accessibility to general practice. [ABSTRACT FROM AUTHOR]