Patient Experience Research Articles

Profiling patterns of patient experiences of access to care and continuity at team-based primary healthcare clinics

Profiling patterns of patient experiences of access to care and continuity at team-based primary healthcare clinics

Cochlear Implant Sound Quality.

The aims of this exploratory study were (a) to assess common terms used to describe cochlear implant (CI) sound quality by patients fit with conventional CIs and (b) to compare those descriptors to previously obtained acoustic matches to CI sound quality created by single-sided deaf (SSD) patients for their normal-hearing ear. CI patients fit with Advanced Bionics (AB; n = 89), Cochlear Corporation (n = 86), and MED-EL (n = 80) implants were the participants. The patients filled out a questionnaire about CI sound quality for two time points: For the time near activation (T1) from memory and at the time of filling out the questionnaire (T2). The mean CI experience at T2 for the three groups ranged from 4 to 8 years. The questionnaire was composed of 25 adjectives describing sound quality. For T1, the most commonly used descriptors were Computer-like, Treble-y, Metallic, and Mickey Mouse-like. A superordinate category of HiPitched (High Pitched) gathered significantly more responses from patients with shorter electrode arrays (AB and Cochlear) than patients with longer arrays (MED-EL). At T2, the most common descriptor was Clear and was chosen by approximately two thirds of the patients. The between-group differences in responses to items in the HiPitched category, present at T1, were absent at T2. The questionnaire data from conventional CI patients differs from previous sound matching data collected from SSD-CI patients. Alterations to the spectral composition of the signal are less salient to experienced conventional patients than to experienced SSD-CI patients. This is likely due to the absence, for conventional patients, of an exemplar in an NH ear against which to judge CI sound quality.

Implementation and Evaluation of Cultural Safety Initiatives in Australian Hospital Settings: A Scoping Review.

The aim of this scoping review was to synthesize and summarize existing evidence for implementing and evaluating Cultural Safety initiatives in Australian hospitals for Aboriginal and Torres Strait Islander peoples. The rationale for this work was to establish guidelines for best practice in providing culturally safe care across hospital and health services. A systematic search guided by PRISMA Extension for Scoping Reviews was conducted across five databases: CINAHL, Scopus, MEDLINE, Embase, and Informit. Reference lists and citations of eligible studies were also examined. Studies were eligible for inclusion if they were in English and discussed the implementation and/or evaluation of Cultural Safety initiatives in Australian hospitals. Evaluations assessing both health care staff and patient perspectives were included. Studies were excluded if they presented future implementation protocols or initiatives among health care students. No date limiters were applied due to the small body of available literature. Nine studies met the criteria and were included in this review. Five themes emerged: (a) process of implementation; (b) process of evaluation; (c) change in health professional's behavior; (d) change in patient behavior; and (e) future recommendations. Validated implementation frameworks and evaluation tools are needed for integrating Cultural Safety initiatives into Australian hospital settings. This review has highlighted that despite the availability of evidence-based tools, their use was lacking. This scoping review also highlighted that evaluation of Cultural Safety initiatives is primarily focused on the attitudes and knowledge of health professionals, rather than patient experience. As Cultural Safety is determined by recipients of care, future evaluation of initiatives should prioritize patient perspectives.

Older patients' experiences of shared decision-making when choosing treatment for their distal radius fracture; A qualitative study

ObjectiveThis study aims to understand how older patients experience shared decision-making (SDM) when making decisions about the treatment of their distal radius fracture (DRF). MethodsAn exploratory qualitative study was designed using individual in-person and telephone interviews. Twelve DRF patients were recruited during their first follow-up visit to a Danish outpatient clinic, with ten of them participating in interviews. Data was analysed using content analysis. ResultsThree themes emerged: 1) An acute situation, 2) Considerations influencing the treatment choice and 3) The treatment decision. ConclusionIn conclusion, our study represents a pioneering effort in reporting the use of Shared Decision Making in fracture management. The sudden onset of DRF proved to be highly distressing for the patients. Providing SDM material to patients in the Emergency department (ED) aimed to empower them and prepare them for their subsequent outpatient clinic visit. However, its effectiveness varied. The demeanour of doctors played a crucial role in shaping patient experiences.

Artificial intelligence integration in healthcare: perspectives and trends in a survey of U.S. health system leaders

BackgroundThe healthcare sector is rapidly integrating artificial intelligence-derived predictive models (AIDPM) to enhance clinical decision support, operational efficiency, and patient experiences. However, research on management strategies for AIDPM acquisition, deployment, and governance remains limited. This study examines changes in AIDPM integration and governance since 2021, with a particular focus on large language models and health equity considerations.ResultsOur survey of health system leaders achieved a 49% response rate (32/65). While 84% of institutions reported using AIDPM in clinical practice, only 53% had established dedicated teams for these models. Compared to 2021, there was a significant increase in representation from experts in clinical informatics, operations, and quality improvement on AIDPM teams. Most organizations (41%) primarily purchased AIDPM from external vendors. Support for integrating large language models into healthcare practices was unanimous among respondents. The principal obstacles to AIDPM adoption included regulatory concerns, data security, workflow integration, and clinician acceptance. A large majority (72%) of respondents supported government regulation of AI in healthcare. While 76% of organizations reported having a team member dedicated to health equity, ethicists and diversity leaders were underrepresented on AIDPM teams (18%). Organizations reported various efforts to promote health equity, but involvement of frontline clinicians in AIDPM development and its impact on health equity was significantly less common.ConclusionsClinical adoption of AIDPM faces challenges due to the absence of established best practices. Health system leaders strongly support federal regulations for AI in healthcare. These regulations could provide quality and safety standards. The study highlights the need for developing evaluation guidelines, especially for large language models. It also reveals a lack of uniform involvement of frontline clinicians and equity experts in AIDPM governance. Their involvement could increase adoption and trust of these new AI tools. Future research should assess healthcare systems' adherence to emerging regulations and best practice frameworks. This research should emphasize patient safety and health equity. These findings underscore the urgent need for a comprehensive roadmap. This roadmap would guide the responsible implementation of AIDPM in healthcare settings.

Bibliometric analysis of myelomeningocele management: National disease burden versus publication volume

Myelomeningocele (MMC) disproportionately affects low-resource areas and regions without mandatory folic acid fortification. No specific literature exists on the distribution of research output regarding neurosurgical management of myelomeningocele worldwide in relation to regional disease burden. We aimed to examine the country of origin and patient population of published papers on myelomeningocele and topics related to neurosurgical management of MMC, to determine whether these were proportionate to disease burden. A systematic literature search was conducted on neurosurgical aspects of myelomeningocele care. The geographic distribution of neurosurgical MMC research output was examined against the national burden of disease. Bibliometric analysis quantified author and patient country affiliations stratified by World Bank income group classification and folic acid fortification status, juxtaposed with disease burden. From 9,692 titles, 1,843 were included, representing 107,446 patients and 2,650 authorship instances. High-income countries (HICs) comprised 3% of 2019's global NTD births, 74% of authorships, and 83% of patients represented. Upper-middle-income countries (UMICs) represented 9% of NTD births, 16% of authorships, and 9% of published patients. Lower-middle-income countries (LMICs) represented 55% of NTD births but only 8.6% of authorships and 7% of patients. Low-income countries (LICs) shouldered 32% of NTD births and contributed 1.3% of authorships and 1.6% of patients. Countries with mandatory folic acid fortification represented 75% of patients and 54% of authorships. Postnatal repair, hydrocephalus, and postoperative complications were the most frequently studied topics. The global literature concerning neurosurgical management of myelomeningocele originates predominantly from HICs. Published experiences of myelomeningocele patients from LICs/LMICs are scarce, even though they comprise the majority of the affected population. Neurosurgeons and other health professionals must address this mismatch between disease burden and publication volume in order to inform practice, policy, and advocacy for myelomeningocele care worldwide.

The Influence Mechanism Analysis of Family Doctor Team Effectiveness: A Mixed-method Approach.

Team-based delivery of family doctor services is associated with improved patient experiences, better health outcomes, and more efficient healthcare utilization. Team effectiveness is related to the team's output, and family doctor team effectiveness (FDTE) directly impacts the quality and efficiency of contracted family doctor services. We aimed to explore the path and mechanisms influencing family doctor team effectiveness, propose strategies for improvement, and enhance both team effectiveness and service quality. The literature review, key informant interviews, expert consultation, and questionnaire survey was employed. The questionnaire, based on the IMOI model, was designed to measure family doctor team effectiveness (FDTE) and its influencing factors. Using stratified random sampling, we distributed the questionnaire to family doctors in both developed and underdeveloped areas of Zhejiang Province, China. We performed hierarchical linear regression analysis to examine the relationship between team effectiveness and influencing factors. Subsequently, we used structural equation modeling (SEM) to explore and validate the relationships and mechanisms of action among "team input factors", "member input factors", "team behavioral process", and "team emotional process" on team effectiveness. The questionnaire was divided into five main sections: 'team input factors', 'member input factors', 'team behavioral process', 'team emotional process', and 'team effectiveness', with 11 dimensions and 42 items. A total of 508 valid questionnaires were returned. The main factors influencing FDTE are team composition (β=-0.116, P<0.01), goals and systems (β=0.165, P<0.01), cooperative attitude (β=0.123, P<0.05), team behavioral process (β=0.161, P<0.001), and team emotional process (β=0.193, P<0.001). SEM analysis revealed that team input factors, member input factors, and team behavioral process had direct and indirect effects on team effectiveness, while team emotional process had a direct effect. It is recommended to optimize the basic inputs of family doctor teams, enhance the intrinsic motivation of team members, promote team interaction and cooperation, and foster a positive atmosphere for family doctor teamwork.

Strategies for Effective Health Services Management in Hospitals: A Systematic Review of Key Models and Practices

Background: Effective health services management is critical in hospitals, where the demands for improved patient outcomes, operational efficiency, and cost containment are paramount. Over the years, several management models and practices have been implemented in hospital settings, with varying degrees of success. Objective: This systematic review aims to examine and synthesize key models and practices in health services management that have proven effective in enhancing hospital performance, focusing on their impact on patient care, staff efficiency, and operational outcomes. Methods: A systematic literature search was conducted across major databases, including PubMed, Scopus, and Google Scholar, using keywords such as "hospital management," "health services management," and "patient care models." Studies were included if they focused on hospitals, were published in the past ten years, and evaluated the effectiveness of management practices. Results: The review identified several effective management models, including Lean Management, Six Sigma, Patient-Centered Care, Workflow Optimization, and Total Quality Management (TQM). Key practices contributing to successful management included leadership engagement, technology integration, performance measurement, and patient safety protocols. These strategies collectively improved patient satisfaction, reduced wait times, and enhanced hospital efficiency. Conclusion: This review highlights evidence-based management strategies that have a significant impact on hospital operations and patient care. Implementing these practices can help hospital administrators optimize resources, improve staff productivity, and enhance patient experiences.

Oral Ketamine and Midazolam for Procedural Sedation in the Pediatric Emergency Department: A Retrospective Study.

Needle-free procedural sedation (PS) is an attractive option for children presenting to the emergency department (ED) who require a painful procedure, as it avoids inflicting additional pain either with intravenous line placement or intramuscular injection. While use of oral (PO) ketamine has been reported in the literature, limited information is available to guide ED-based use in children. This is a descriptive study of the patient experience receiving PS with the following regimen: PO ketamine 6 mg/kg (max of 200 mg) with or without PO midazolam 0.5 mg/kg (max 15 mg) approximately 30 minutes before a procedure. We performed a retrospective chart review of children younger than 18 years receiving this PS regimen at a tertiary care children's hospital ED and an affiliated community hospital ED from January 1 through September 30, 2023. Fifty-eight children were sedated with PO ketamine during the study period. The most common procedure performed was laceration repair (46.5%), followed by incision and drainage (17.3%). All but 2 children received PO midazolam along with PO ketamine. Eight patients received additional medications due to inadequate sedation. Sedation depth was clinician-reported as moderate in 74.1% (43), mild in 15.5% (9), and deep in 10.3% (6). Procedures were completed in 98.3% (57) cases. 93.1% (54) of patients had no adverse event (AE) of any kind and no patient had a significant adverse event (SAE). PO ketamine with or without midazolam resulted in procedure completion of a variety of procedures in the pediatric ED with minimal AE, no SAE, and without need for additional sedative medications in 86.2% (50). This regimen is an option for needle-free moderate PS in this setting. Further study is needed to clarify the benefit of the addition of midazolam to PO ketamine, rates of AE and SAE, sedation duration, and recovery times.

Examining patient experiences and preferences in receiving bad news in Ethiopian state hospitals

Examining patient experiences and preferences in receiving bad news in Ethiopian state hospitals

Towards Equity and Universal Design in Pelvic Floor Care - Patient Experiences After Birth.

This article presents preliminary findings from a design ethnographic study examining pelvic floor care practices from the perspective of patients with pelvic floor injuries caused by birth treated at the continence clinic in Sundsvall's Hospital, Sweden. The aim is to enhance our understanding of women's experiences of pelvic floor injury, provide insights into living with pelvic floor injury, and discuss this from a universal design perspective. The study combines qualitative observations during clinic meetings and individual interviews with participants in a separate room. In total, seven patients participated. The material was analysed using thematic analysis focusing on the patient's experiences and the continence clinic healthcare meeting situation. The initial findings show that pelvic floor injury symptoms such as leakage, pain and discomfort were seen as a routine part of giving birth and as expected and normal among patients. Another finding is how manifestation through visual evidence with mirroring or illustrations is found to be helpful among patients as it helps them with their healing process. Many participants have unresolved thoughts on the reasons for their pelvic floor injury. The narratives of patients living with pelvic floor injuries highlight themes of ambivalence and uncertainty, with the injuries often overshadowed by the subsequent demands of caring for a newborn, causing overload. The change is not only interpersonal; from a design perspective, the situation as a whole is of interest, including the environment, people, and artefacts. Further research is needed to explore women's experiences beyond the purely medical aspects. Here, universal design can contribute to increased sensitivity regarding stigma and values and how these can manifest socio-materially in healthcare interactions. This study provides a basis for continued work with co-creation workshops with participants in the following study.

The Impact of Language-Discordant Care Upon the Patient Family Experience in Pediatric Plastic Surgery

Background: Patient satisfaction surveys usually overlook differences in patient family experience (PFE) for families whose spoken language is different from that of the treating physician. This study examines the relationship between language-discordant care and patient experience. Methods: A retrospective review of deidentified pediatric plastic surgery PFE survey responses from 2018 to 2021 was performed with permission from Lurie Children’s Hospital’s PFE Team. Results: A total of 443 pediatric plastic surgery patients were included. The race breakdown was White (49%), Other (23.9%), Black (8.8%), and Asian (5.9%). Ethnic distribution included “Not Hispanic/Latino” (58.2%) and “Hispanic/Latino” (31.4%). Languages spoken were English (80.4%), Spanish (18.1%), and Other (2.3%). Eighty-seven (19.64%) patients were language-discordant with their providers; out of this group, 68 (78.2%) preferred interpreter services. Methods of interpreter services included in-person (54.4%), over-the-phone (27.9%), video (1.5%), and no services (16.2%). The language-discordant group was less likely to give the highest ranking to “provider courtesy and respect” [odds ratio (OR)=0.200, P&lt;0.001], “provider listened carefully” (OR=0.202, P&lt;0.001), and “knowing what to do with subsequent questions following visit” (OR=0.435, P&lt;0.01). No differences in PFE ratings existed for: “enough information provided,” overall provider rating, and whether they would recommend the facility. There were no significant differences in provider ratings by interpreter service method. Conclusions: Patient/provider language discordance results in significantly lower PFE ratings in areas involving patient teaching and perceptions of provider respect, courtesy, and careful listening. This underscores the importance of providers better accommodating families with limited English proficiency.

Bimekizumab Safe and Effective Self-administration Using 2 mL Devices by Patients with Moderate to Severe Plaque Psoriasis: Results from Two Multicenter, Randomized, Open-label Studies

Introduction: Safe and effective self-injection of subcutaneous bimekizumab (BKZ) in patients with moderate to severe plaque psoriasis using a 1­ mL safety syringe (sy) or auto-injector (AI) has previously been associated with an overall positive patient experience.1 Here, the ability of patients to safely and effectively self-administer subcutaneous BKZ using a 2 mL sy or AI is reported. Methods: DV0002 (North America) and DV0006 (Germany, Hungary and Poland) were sub-studies of the phase 3 open-label extension (OLE) study, BE BRIGHT.1,2 Included patients received BKZ 320 mg every 4 weeks (Q4W) or Q8W based on treatment regimen and Psoriasis Area Severity Index (PASI) response at BE BRIGHT entry. Patients were randomized 1:1 to BKZ-sy-2 mL or BKZ-AI-2 mL, and performed self-injections (after training in the self-injection technique) at baseline and Wk8. Safe and effective self-injection defined as complete dose delivery of BKZ and absence of adverse events related to the device which led to study withdrawal. Primary and secondary objectives were to assess patients’ ability to safely and effectively self-administer BKZ at Wk8 and baseline, respectively. Other objectives included to evaluate patient experience of self-injection, using the injection site pain visual analog scale (VAS; 0 [no pain]–100 [worst possible pain]) and the Self-Injection Assessment Questionnaire (SIAQ; subscale scores ranged 0-10 [higher scores better]), and the post-use structural and mechanical integrity of each device. Data analyzed using two full analysis sets (BKZ-sy-2 mL and BKZ-AI-2 mL) and reported for the combined BKZ dose groups (BKZ Total) using observed cases. Results: In DV0002, 19 patients each were randomized to use BKZ-sy-2 mL and BKZ-AI-2 mL. All patients using BKZ-sy-2 mL (n=19) self-injected BKZ safely and effectively at baseline and Wk8. All (n=19) and 94.7% (n=18/19) of patients using BKZ-AI-2 mL self-injected BKZ safely and effectively at baseline and Wk8, respectively. In DV0006, 44 and 45 patients were randomized to use BKZ-sy-2 mL and BKZ-AI-2 mL, respectively. All patients using BKZ-sy-2 mL (n=44) and BKZ-AI-2 mL (n=45) safely and effectively self-injected BKZ at baseline and Wk8. In DV0002/6, median pre-injection and post-injection SIAQ scores were ≥7.5 across both devices, and &gt;9.0 for feelings about injections, self-image, and injection-site reactions subscales. In DV0002/6, low median VAS scores across both devices indicate variable but generally low pain. All devices maintained their structural and functional integrity post-use. One device deficiency complaint was received. Conclusions: A positive self-administration experience was associated with the 2 mL devices, as reported with 1 mL devices,1 providing patients with an option to self-administer a single injection of BKZ.

Lived experiences of lymphoma patients with sexual dysfunction and related sexual distress during cancer treatment

PurposeSexual dysfunction is often experienced by lymphoma patients during the disease trajectory and even during survivorship. However, lymphoma patients’ perceptions about sexual challenges and dysfunction experienced during cancer treatment are not well known. The purpose of the study was to explore lymphoma patients’ lived experiences with sexual dysfunction and related sexual distress during cancer treatment.MethodsA narrative qualitative approach of inquiry was used, with individual semi-structured interviews. Twenty lymphoma patients were recruited to participate in semi-structured interviews about their experiences with sexual dysfunction and related sexual distress during cancer treatment. We followed a systematic, inductive approach to the qualitative data that moved analysis from concrete description to thematic interpretation.ResultsEight themes emerged: (1) sexual functioning before lymphoma diagnosis and treatment; (2) sexual functioning after lymphoma diagnosis and during treatment; (3) emotional responses to sexual changes; (4) psychological effects; (5) emotional and social support from loved ones; (6) attitudes toward discussing sexual changes with healthcare professionals; (7) coping mechanisms; and (8) participants’ expectations of sexual health after lymphoma treatment.ConclusionsCancer treatment such as surgery, chemotherapy, and radiation therapy can have a negative impact on sexual health. Therefore, further research is recommended to continue exploring the lived experiences of lymphoma patients.Implications for cancer survivorsHealthcare professionals should routinely assess sexual functioning in lymphoma patients as sexual health is a component of quality of life.

Symptom experience of patients undergoing treatment for multiple myeloma: a longitudinal real-world electronic patient-reported outcomes study.

Patients with multiple myeloma (MM) experience significant symptom burden. We used a symptom monitoring app to longitudinally characterize the MM treatment experience in detail based on line of therapy (LOT). Adults with MM on active treatment completed weekly symptom monitoring surveys. Patients on their 4th LOT or greater were considered heavily pretreated. We characterized moderate to very severe (MOD-VS) symptom prevalence, weekly symptom burden, symptom bother (FACT-GP5), and health-related quality of life (HR-QoL) (EORTC QLQ-C30 Item 30) per LOT. We considered 109 patients on LOT < 4 and 47 on LOT ≥ 4. The top MOD-VS symptoms were fatigue (71.6% of patients), muscle pain (59.8%), general pain (51.6%), numbness/tingling (48.4%), and insomnia (47.6%). More patients on LOT ≥ 4 experienced numbness/tingling (66.7% vs. 41.3%; OR 2.84, 95% CI 1.27-6.37; p = 0.0098) and fatigue (83.3% vs. 65.6%; OR 2.60, 95% CI 0.96-7.09; p = 0.0557). Some symptoms (fatigue, muscle pain, anxiety) persisted for months among patients on LOT ≥ 4, but patients on LOT < 4 also had unmet longitudinal needs (numbness/tingling, dyspnea). Patients on LOT ≥ 4 had more weeks with ≥ 3 MOD-VS symptoms (27.1% of weeks vs. 15.7%; OR 2.56, 95% CI 1.07-6.08; p = 0.0337) and experienced high symptom bother more often (39.1% of surveys vs. 30.0%; OR 4.23, 95% CI 1.37-13.10; p = 0.0123). HR-QoL was similar between groups. Heavily pretreated patients experienced greater symptom burden and bother, but patients at earlier LOTs also had unmet needs. Interventions are needed to improve symptom management in MM regardless of LOT, but most pressingly for heavily pretreated patients.

A radiation therapy platform to enable upright cone beam computed tomography and future upright treatment on existing photon therapy machines

AbstractBackgroundThe conventional lying down position for radiation therapy can be challenging for patients due to pain, swallowing or breathing issues. To provide an alternative upright treatment position for these patients, we have developed a portable rotating radiation therapy platform which integrates with conventional photon treatment machines. The device enables cone‐beam computed tomography (CBCT) imaging of patients in an upright position, and the future delivery of therapeutic radiation.PurposeTo design, manufacture, and test a device for upright radiation therapy. A collaborative partnership between physicists, engineers, radiation therapists, radiation oncologists, implementation researchers and consumers was established, to create a device that meets both the clinical and technical requirements of upright radiation therapy. The device is central to a clinical trial (ACTRN12623000498695) which will evaluate upright image quality in the context of future image guided radiation therapy for patients with lung cancer or head and neck cancer.MethodsThe weight and physical constraints of the device were assessed with respect to the American civilian population. The final design was evaluated with a series of tests to characterize the angular accuracy of the platform rotation and the reproducibility of the platform setup position in a radiation treatment room. To acquire an upright CBCT, the platform movement system was synchronized to the kilo‐voltage fluoroscopic imaging on an existing treatment machine. The accuracy of the synchronization was evaluated by assessing the positional reproducibility of upright CBCT imaging of a chest phantom.ResultsThe platform has a weight limit of up to 125 kg which is suitable for approximately 90% of males and 95% of females. The platform has physical constraints that accommodate approximately 95.6% of males and 99.6% of females: a maximum seated height of 97.5 cm, a maximum hip breadth of 63.0 cm, and maximum elbow to knuckle length of 46.5 cm. The angular accuracy of the motion system is within ±0.15° over a full rotation, which is within the guidelines for machine movement accuracy in radiation therapy (1 mm/1°). The platform is a portable device and can be reproducibly positioned in a radiation therapy treatment room with a translational range within ±0.04 mm and a rotational range within ±0.025°. The CBCT imaging can reproducibly detect the position of a chest phantom with a translational uncertainty of ±0.07 mm and a rotational uncertainly of ±0.22°, when imaging is acquired following a strict procedure.ConclusionThe upright radiation therapy platform is suitable for the evaluation of CBCT imaging in the context of image guided radiation therapy. The platform will allow the investigation of open questions in upright radiation therapy in the areas of patient experience, positional stability, anatomical changes, and treatment delivery. Improvements to the materials in the radiation beam line, synchronization with the existing treatment machine, and increasing the device weight limit are suggested prior to delivery of future upright treatments.

Percutaneous Pulmonary Valve Implantation With Self‐Expanding Valves for Carcinoid Heart Diseases

ABSTRACTCarcinoid heart disease is an important complication of neuroendocrine tumors that may lead to significant morbidity and mortality. Right‐sided heart valve involvement with consequent valve dysfunction is one of the common manifestations. Patients often have multiple, significant comorbidities with advanced metastatic disease and, as such, may not be suitable for surgical valve replacement due to excessive risk. Transcatheter valve replacement using balloon‐expandable valves has been the mainstay of management for these patients, particularly with stenotic lesions but there is limited experience in patients with pulmonary regurgitation and dilated pulmonary arteries outside the dimensions that would be suitable for these valves. We report three successful cases of percutaneous pulmonary valve implantation with the VenusP‐valve, a large self‐expanding valve platform, and highlight the technical aspects and challenges specific to treatment of pulmonary regurgitation in patients with carcinoid heart disease. Percutaneous pulmonary valve implantation, using the VenusP‐valve, may be considered an effective treatment in this patient group.

Beyond the Queue: Exploring Waiting Practices in the Stories of Patients With Breast Cancer.

Waiting is an important topic in healthcare debates, mostly discussed in the form of waiting lists and waiting times. In this discourse, the experiential element of waiting stays hidden. Understanding the waiting experiences of patients can help to better understand healthcare waiting practices, which have a large impact on patients. We performed a thematic analysis on 12 patients' books of women with breast cancer. We focused on the theme of waiting within these stories, through an abductive analysis. We identified three themes within the waiting practices of patients with breast cancer: (1) Thickening of time, (2) contaminated time and (3) navigating time. The theme thickening of time highlights waiting moments where time is experienced as moving at a very slow pace with intense emotional impact. The theme of contaminated time highlights the waiting processes as an ongoing component of experiencing illness. The theme of navigating time highlights patients' temporal agency, showing their waiting work in the form of strategies for dealing with practical and emotional aspects of waiting. The waiting experiences of patients provide insights into the burden of waiting, which is partly connected to the way healthcare services are organised and the experience of illness. Understanding these multifaceted experiences of patients helps pinpoint areas for healthcare quality improvement. The choice for the theme and approach of this research, waiting, was developed with a citizen science initiative of collecting patient stories.

Harnessing delegation and technology to identify and manage malnutrition in a digital hospital: An implementation study

AbstractAimsDelegation of nutrition care activities to Dietetic Assistants in hospitals has been identified as one innovative malnutrition model of care, but there has been limited evaluation of their roles. This study aimed to develop, implement and evaluate a new Malnutrition Model of Care embracing automated delegation and digital systems.MethodsThe Malnutrition Model of Care was created to detect patients at risk of malnutrition (using the Malnutrition Screening Tool) and nutritional decline (via routine intake tracking at all meals and snacks). Digital systems generated automated referrals to dietetics, with protocols to support Dietetic Assistants to action these to direct care escalation to the ward dietitian. Dietetic Assistant training included simulations and clinical task instructions. Implementation evaluation was guided by the Donabedian model of quality and included a review of inpatient dietetics occasions of service, survey of Dietetic Assistant role satisfaction and task confidence, and hospital‐wide cross‐sectional malnutrition audit. Data was descriptively analysed.ResultsDuring the first year of implementation, 60% of Dietetics inpatient occasions of service were completed by Dietetic Assistants, with 26% of Dietetic Assistant inpatient tasks initiated from nursing malnutrition risk screening. Most Dietetic Assistants reported adequate training and confidence in completing delegated tasks. Malnutrition prevalence was 14% with no hospital‐acquired malnutrition identified. No clinical incidents were reported.ConclusionsThe Dietetic Assistant workforce and technology were harnessed to implement an innovative delegated Malnutrition Model of Care that appears to be safe and effective at managing malnutrition from preliminary evaluation. Work continues to formally assess service efficiencies, cost and patient experience.

The liminal experience of awaiting for a cadaveric kidney donation: “I would not wish it on even my enemy!”

This study aims to explore the concept of liminality in the lives of chronic kidney disease (CKD) patients in Turkiye who are undergoing dialysis while awaiting kidney transplants. The research focuses on how patients experience this transitional state, being between life stages, and how they cope with the uncertainty of their condition while aspiring for a transplant. The research involved in-depth, semi-structured interviews and participant observations of 34 dialysis patients who had been registered on the national organ waiting list for over five years. The research was conducted between August 16, 2022, and November 11, 2022. The principal findings reveal that these patients experience profound uncertainty and hope, viewing potential transplants as a "second birthday" and symbolic rebirth. The study also highlights significant cultural and familial dynamics influencing the organ donation process, with many patients facing disappointment when relatives are unwilling or unable to donate. Additionally, patients report various physical and psychological challenges, including social isolation, strict dietary restrictions, and the emotional toll of dependence on hemodialysis. The significant conclusions indicate that the anticipation of receiving a cadaveric organ donation provides both hope and anxiety, motivating patients to adhere strictly to medical advice while coping with the emotional burden of uncertainty. The research underscores the complex interplay between cultural beliefs, medical practices, and the lived experiences of CKD patients. This paper contributes to knowledge by comprehensively understanding the cultural and emotional dimensions of the dialysis experience in Turkey. It offers valuable insights for healthcare providers and policymakers to improve patient care and support systems.