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This paper explains how value co-creation is affected by the introduction of tools to digitalise healthcare. In particular, this study examines how pregnant women in France collect, utilise, and share their health records after the launch of a new Electronic Health Record (EHR). The paper combines methods from the design field (cultural probes) and micro-phenomenological interviews to capture value co-creation and value co-destruction dynamics. Through analysing nine cases, we highlight the role of patients' expectations in potential value co-destruction with an EHR. We describe why it is important to know by whom and how co-creation is carried out to improve the launch of digital health applications. Finally, the paper emphasises that value co-creation is a long-term process that needs to be studied longitudinally. [ABSTRACT FROM AUTHOR]

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]

AbstractPurposeMaterials and methodsResultsConclusion\nIMPLICATIONS FOR REHABILITATIONHealth-related low back pain costs can be direct monetary, indirect monetary, or intangible, non-monetary. The purpose of this review was to identify the intangible, non-monetary costs of low back pain from the perspective of the individual.A scoping review of literature was undertaken. Four databases were searched up to 6th August 2024. Data were charted and coded using deductively derived categories in line with our purpose; additional categories were developed for text that did not fit these categories. Data were analysed using directed content analysis.Forty-six studies met the inclusion criteria. Six categories were derived from the data, which express the experience of the person with low back pain: Perceptions of pain, Experience of healthcare, Becoming defined by low back pain, Life on hold, My social self, and Disrupted work life. Each category explored an aspect of life affected by low back pain.This review highlights that low back pain profoundly affects many areas, with implications for peoples’ personal, social, and work lives. Our findings suggest that suffering can be reduced when healthcare practitioners show empathy and legitimise the lived experience of low back pain, acknowledging the restrictions it imposes on peoples’ lives.Intangible costs of low back pain are less frequently reported than direct or indirect monetary costs, so may be under-recognised in service planning.There needs to be recognition of, and empathy for, the impact low back pain has on all areas of life.The search for a definitive diagnosis from a person with low back pain is frequently caused by a need for legitimisation.Healthcare practitioners need to identify people with low back pain at risk of a poor outcome early in treatment to minimise the risk of chronicity and the concomitant intangible costs. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To enhance your understanding of the stigma associated with personality disorders • To find out how the narrative around personality disorders is evolving • To recognise the need for comprehensive staff training and education about personality disorders. Individuals with a personality disorder diagnosis experience high levels of stigma within society generally and healthcare services specifically. This narrative review analyses the recent literature exploring the stigma associated with personality disorders. The findings offer insights into the ongoing contentious nature of personality disorder as a diagnosis, the issues around misdiagnosis and the prevailing attitudes of healthcare professionals. [ABSTRACT FROM AUTHOR]

Patient-reported experience measures (PREMs) collect essential data for service and system-wide quality improvement and performance monitoring toward value-based care. However, the experiences of people with intellectual disability, who have high healthcare utilization couple with poorer outcomes, are often omitted from system-wide PREMs and service-wide PREMs data. The use of PREMs instruments for data collection among people with intellectual disability has not been explored. This review aimed to identify and synthesize measurement tools and approaches that have been used to gather patient-reported experience data from people with intellectual disability. Rapid evidence assessment was used, in which comprehensive search strategies were applied to electronic databases and gray literature. Narrative synthesis was used with the included articles to address the review aim. A total of 48 documents were included; 26 peer-reviewed journal articles and 22 articles from gray literature. Patient-reported experiences have been gathered from people with intellectual disabilities in relation to specific services or encounters, predominantly using qualitative methods. To date, there is an absence of targeted service- or system-wide surveys. Existing clinic- and condition-specific instruments provide insight for broader application. Patient experience assessment among people with intellectual disability requires consideration of (1) how individuals are identified and approached, (2) the content, design and structure of measurement instruments, and (3) the process by which data are collected, and (4) how it may be applied to create change. Despite the collection of patient experience data from people with intellectual disability, there is little research available about how this information is later used to support health service improvement. Applying PREMs for quality improvement is critical to realize the improvements to healthcare provision required for people with intellectual disability toward equitable care quality. • Patient-reported experience measures (PREMs) are used to understand, benchmark, and target issues of quality improvement across health services. Despite experiencing some of the poorest healthcare quality and outcomes, PREMs are rarely used with people with intellectual disability because of the lack of suitable data collection tools and methods. • Methods are tools to elicit patient-reported experience data among people with intellectual disability are available, but no single PREMs tool has been developed that captures experiences beyond a specific condition or service. • The methods and tools available provide insight into how health services and systems might create suitable PREMs tool for people with intellectual disability toward routine data capture for benchmarking and organization- or system-wide improvement work. [ABSTRACT FROM AUTHOR]

"Facilitating the process of working through mastering the middle game" by Patricia Coughlin offers guidance on emotional labor in Intensive Short Term Dynamic Psychotherapy (ISTDP). The book includes verbatim case studies to illustrate the process of working through, emphasizing the integration of cognitive and emotional insight for lasting change. Coughlin challenges therapists to focus on pace, depth, and the therapeutic alliance, providing valuable insights on rupture and repair, autonomy, attachment, and positive endings in therapy. The text encourages therapists to push themselves and their patients to achieve transformative growth, making it a valuable resource for those seeking to enhance their therapeutic practice. [Extracted from the article]

Aims: Dried blood volumetric absorptive microsamples (VAMS) may facilitate home‐based sampling to enhance therapeutic drug monitoring after transplantation. This study aimed to clinically validate a liquid chromatography–tandem mass spectrometry assay using 2 VAMS devices with different sampling locations (Tasso‐M20 for the upper arm and Mitra for the finger). Patient preferences were also evaluated. Methods: Clinical validation was performed for tacrolimus and mycophenolic acid by comparison of paired VAMS and venipuncture samples using Passing–Bablok regression and Bland–Altman analysis. Conversion of mycophenolic acid VAMS to serum concentrations was evaluated using haematocrit‐dependent formulas and fixed correction factors defined a priori. Patients' perspectives, including useability, acceptability and feasibility, were also investigated using established questionnaires. Results: Paired samples (n = 50) were collected from 25 kidney transplant recipients. Differences for tacrolimus whole‐blood concentration were within ±20% for 86 and 88% of samples from the upper arm and fingerstick, respectively. Using correction factors of 1.3 for the upper‐arm and 1.47 for finger‐prick samples, 84 and 76% of the paired samples, respectively, were within ±20% for mycophenolic acid serum concentration. Patient experience surveys demonstrated limited pain and acceptable useability of the upper‐arm device. Conclusions: Tacrolimus and mycophenolic acid can be measured using 2 common VAMS devices with similar analytical performance. Patients are supportive of home‐based monitoring with a preference for the Tasso‐M20 device. [ABSTRACT FROM AUTHOR]

Aim Methods Results Conclusion This qualitative study explored the lived experiences of the patients with microphthalmia and anophthalmia and their parents, focusing on the healthcare, school settings and daily life challenges to improve patient management.In‐depth interviews were conducted in Stockholm, Sweden, from October 2022 to June 2023. Participants were recruited through the St Erik Eye Hospital database (2008–2022), and the data was analysed using reflexive thematic analysis.The study included 15 patients (9 female and 6 male), with a median age of 21 years (range 15–31), and 1 parent per patient. Five key themes were identified from the parental interviews and three from the patient interviews. Both groups emphasised the need for improvements in healthcare, including better physician continuity, emotional support, information provision and prosthesis functionality. Families of those with severe bilateral visual impairment highlighted the need for additional school and daily life support. While some parents had future concerns, most patients viewed their condition as a natural part of life.Patients and parents shared insights on the psychosocial impact and suggested improvements in the healthcare and school settings, providing valuable guidance for enhancing care and management for this patient group. [ABSTRACT FROM AUTHOR]

Objective: Sudden gains (SGs) are rapid symptom improvements between two consecutive therapy sessions that predict treatment outcomes. This study investigated SGs in posttraumatic stress disorder (PTSD) symptoms, interpersonal relationship functioning, and social role functioning in Cognitive Processing Therapy (CPT). Method: Participants were 121 patients and 81 therapists involved in a parent randomized controlled hybrid implementation-effectiveness trial of CPT. Descriptive analyses examined the frequency and timing of different forms of SGs. Multilevel modeling examined the impact of the three SGs on outcomes. Results: PTSD SGs occurred more often and at different sessions than SGs in facets of social functioning. Most individuals experienced only one form of SG and there were no significant clinical or demographic differences in those who had PTSD only SGs, social functioning only SGs, or both SGs. PTSD SGs and interpersonal relationship functioning SGs both predicted changes in PTSD symptoms and interpersonal difficulties over time, but not changes in social role functioning. SGs in social role functioning predicted all three forms of outcomes. Conclusions: The findings suggest that there are multiple forms of SGs in CPT beyond primary symptom changes that are predictive of patient outcomes. Clinicians should highlight various SGs that patients experience to further enhance outcomes. [ABSTRACT FROM AUTHOR]

Approximately every second patient with uveal melanoma develops distant metastases, with the liver as the predominant target organ. While the median survival after diagnosis of distant metastases is limited to a year, yet‐to‐be‐defined subgroups of patients experience a more favorable outcome. Therefore, prognostic biomarkers could help identify distinct risk groups to guide patient counseling, therapeutic decision‐making, and stratification of study populations. To this end, we retrospectively analyzed a cohort of 101 patients with newly diagnosed hepatic metastases from uveal melanoma by using Cox‐Lasso regression machine learning, adapted to a high‐dimensional input parameter space. We show that substantial binary risk stratification can be performed, based on (i) clinical and laboratory parameters, (ii) measures of quantitative overall hepatic tumor burden, and (iii) radiomic parameters. Yet, combining two or all three domains failed to improve prognostic separation of patients. Additionally, we identified highly relevant clinical parameters (including lactate dehydrogenase, thrombocyte counts, aspartate transaminase, and the metastasis‐free interval) at first diagnosis of metastatic disease as predictors for time‐to‐treatment failure and overall survival. Taken together, the risk stratification models, built by our machine‐learning algorithm, identified a comparable and independent prognostic value of clinical, radiological, and radiomic parameters in uveal melanoma patients with hepatic metastases. [ABSTRACT FROM AUTHOR]

Introduction: Despite an improved understanding of its pathogenesis, dry eye disease (DED) remains relatively underestimated and its treatment challenging. A better alignment between the clinical evaluation and the patient self-assessment also requires capturing the whole patient experience of DED. This project aimed to unveil this experience through narrative medicine (NM). Methods: The project involved 38 expert centres in Italy and one in San Marino, targeting adult patients with DED, their informal caregivers and their treating ophthalmologists. Written narratives and sociodemographic and quality of life (QoL)-related data were anonymously collected through the project's webpage. Narratives were analysed through MAXQDA (VERBI Software, Berlin, Germany), NM classifications and content analysis. Results: A total of 171 patients with DED, 37 informal caregivers and 81 ophthalmologists participated in the research. DED was defined as a disabling condition by 19% of patients and 35% of caregivers; 70% of patients reported that a therapeutic alliance is an integral part of DED treatment and 32% hope for more effective therapies. Forty-four per cent of patients assessed their own QoL as good; however, DED emerged as importantly impacting work performance and social events. DED physical, emotional and economic burden and the cruciality of a trusting care relationship represent the main themes that emerged across all narratives, while empathy and effective treatment are among the factors favouring coping with DED. Conclusion: This project marked a pioneering initiative investigating the lived experience of patients with DED through NM, simultaneously involving all viewpoints involved in the care pathway. NM enabled the unveiling of factors favouring the ability to cope with DED and its associated QoL implications and provided valuable insights to improve the therapeutic alliance. [ABSTRACT FROM AUTHOR]

Background: Juvenile idiopathic arthritis (JIA) is common in pediatric rheumatology. Despite treatment, many patients experience persistent disease activity. Joint hypermobility (JH), defined by an excessive range of motion across multiple joints, is prevalent in children and adolescents and may influence disease outcomes in JIA. Objective: This study examines the impact of JH on symptoms in youth and young adults with JIA. Methods: Data were obtained from the PR-COIN network and included patients under 21 years old with a diagnosis of JIA. Patients with JIA and JH were matched with those having JIA-only based on age, sex assigned at birth, JIA subtype, and medication exposure. Clinical data, including disease activity measures, patient well-being, and pain ratings, were collected at baseline and follow-up visits. Results: The sample included 420 patients with JIA + JH and 2100 with JIA only. The JIA + JH group exhibited higher disease activity at baseline, more active arthritis joints, elevated physician global assessment of disease activity scores, and worse patient-reported well-being. These differences persisted over time. The JIA + JH group had a 19–20% greater likelihood of maintaining high disease activity scores and worsening over subsequent visits, indicating a significant impact of JH on disease progression. Conclusion: JH in youth with JIA is associated with higher and persistent disease activity, suggesting that JH significantly contributes to the disease burden in patients with JIA and should be considered in treatment strategies. Future research should further explore the mechanisms by which JH influences disease activity and investigate comprehensive management approaches to improve outcomes for this population. Key Points • Children with JIA and joint hypermobility (JH) exhibit significantly higher disease activity at baseline compared to those with JIA only, including more active arthritis joints and elevated physician global assessment scores. • The presence of JH in JIA patients is associated with poorer patient-reported well-being and higher overall disease activity scores, which persist over time despite treatment. • JIA + JH patients have a 19–20% greater likelihood of maintaining high disease activity and worsening over subsequent visits, indicating a significant impact of JH on disease progression. • The study suggests that JH should be considered an important clinical factor in the management of JIA, with targeted interventions needed to address the increased disease activity and improve overall patient outcomes. [ABSTRACT FROM AUTHOR]

• 64% of practitioners don't feel sufficiently educated to discuss and treat GSM. • 12 % (n = 8/64) prescribed local vaginal estrogen for BCS as a first line treatment, while 46 % (n = 30/64) prescribed local vaginal estrogen for BCS as second line treatment. • More attention towards training of physicians is needed to discuss GSM related complaints. Side effects of breast cancer treatment (BCT) impact patients' general and sexual wellbeing. Sexuality related complaints are reported by 70% of breast cancer survivors mainly due to the genitourinary syndrome of menopause (GSM). In clinical care, sexual side effects are often un(der)detected because physicians as well as patients experience barriers to discuss sexuality-related issues. We composed an online survey ourselves using known definitions about sexuality and menopause and known factors for not discussing sexuality. We used multiple-choice questions with a Likert scale to optimize interpretation of the statements. 64 practitioners completed the survey. With this online survey, we examined physicians' knowledge of −and attitude towards- sexual wellbeing and detection and treatment of GSM in breast cancer survivors (BCS). Vaginal dryness and dyspareunia were the symptoms most associated with menopause (n = 63/64 (98 %) and n = 56/64 (87 %)) and sexuality (n = 63/64 (98 %) and n = 61/64 (95 %)). These 2 complaints were also the most discussed symptoms of menopause (vaginal dryness n = 51/64 (80 %) and dyspareunia n = 45/64 (70 %)). The main reason to not discuss these issues were absence of reporting GSM (n = 40/64 (62 %)) and absence of a direct cause to discuss GSM (n = 35/64 (55 %). 64 % (n = 41/64) of practitioners don't feel sufficiently educated to discuss and treat GSM. They proposed vaginal estrogens to treat GSM as first or second line respectively in 12 % (n = 8/64) and 46 % (n = 30/64) of symptomatic BCS. Although sexuality related complaints are common in BCS, 64% of all participating physicians feel they are not adequately trained to handle them. More attention towards training of physicians is needed to discuss GSM related complaints also when they are not spontaneously reported by a patient and with clear guidance towards the medical treatment of GSM in BCS. [ABSTRACT FROM AUTHOR]

• Penthrox® for intrauterine procedures appears feasible, acceptable and efficacious. • Penthrox® is promising for pain control in outpatient hysteroscopic interventions. • Large clinical trials are needed to assess Penthrox® during intrauterine procedures. Penthrox® (methoxyflurane) is a convenient, portable, self-administered disposable single-use handheld inhaler licenced as an emergency, rapid-onset, short-acting, analgesic in adult trauma patients. Outpatient hysteroscopy is one of the commonest procedures in contemporary gynecology but it can be associated with significant pain leading to poor patient experience and failed procedures. We evaluated the feasibility and acceptability of Penthrox® in women undergoing outpatient hysteroscopic procedures and its potential efficacy to reduce pain and improve patient experience. We conducted a prospective observational cohort study on women undergoing hysteroscopy or other intrauterine procedures, such as coil fitting, endometrial biopsy, polypectomy, endometrial ablation and manual vacuum aspiration in an outpatient setting. Women were offered Penthrox® inhalers for pain control, instructed how to use it and asked to record the intra-procedural pain they expected and actually experienced using a 10 cm Visual Analogue Scale. The acceptability, side effects and ease of use of the Penthrox® device were also recorded. 122/146 (83.6 %) women chose to use Penthrox®. 116 out of the 122 (95.1 %) underwent an intrauterine procedure, including 59 hysteroscopic polypectomies and 34 global endometrial ablations. The average pain expected during the procedure was 6.0 (SD = 2.8) and the pain experienced during the procedure was 5.1 (SD = 2.8). The intended procedure was completed in 117 (96 %) women. Penthrox® was considered easy to use by 118 (97 %) women and 111 (91 %) would use it again, although 22 (18 %) women would prefer general anaesthesia in the future. No adverse events occurred but 88 (72 %) women reported mild, self-limiting side effects. Penthrox® appears safe, feasible and acceptable as a pain relief option during outpatient hysteroscopy and other intrauterine procedures. The effectiveness of Penthrox® should be evaluated against conventional pain control in an adequately powered multicentre randomised controlled trial. [ABSTRACT FROM AUTHOR]

Background: Pain is one of the most frequently reported symptoms and often one of the first subjective symptoms in patients with systemic lupus erythematosus (SLE). A previous study indicated that most patients with SLE reported low levels of SLE-related pain. However, a subgroup of patients reported high levels of pain ≥40 mm (0-100 mm) and had a substantial symptom burden in terms of fatigue, anxiety, depression, and reduced health-related quality of life. Thus, there is a need to elucidate the implications of high levels of pain in everyday life. Aim: This study explored the patient's experiences and implications of SLE-related pain in daily life and the support requested from healthcare providers. Method: A total of 20 patients, previously reported high levels of SLE-related pain intensity measuring ≥40 mm (0–100 mm) in a research context at one or two occasions participated in individual semi-structured interviews, which were transcribed and analysed with content analysis. Results: The interviews revealed four main categories and 13 generic categories. SLE-associated pain was described by its multifaceted nature, exhibiting longstanding, unpredictable, migrating, and various physical sensations. The pain entailed multidimensional consequences, restricting everyday life by interfering with roles and relationships and causing various emotions, including existential thoughts. The informants used comprehensive strategies to deal with the pain, including their inner resources, support from family and significant others, and pharmaceuticals and relieving treatments. They expressed the need for security and acknowledgement, which involved individualized support and accessibility of healthcare. Conclusion: This study provides comprehensive insights into the nature and multifaceted impact of SLE-related pain in different dimensions of the informants' daily lives. Except for medications the informants used several strategies, including their inner resources and support from family and others, to manage the pain. Support requested from healthcare providers by the informants included understanding, compassion, individualized care and accessibility. [ABSTRACT FROM AUTHOR]

Background: Ventricular assist devices (VADs) are effective therapy for patients with end‐stage heart failure. Current VAD controllers offer improved interactivity, yet limitations of the visual, tactile, and auditory interface persist that impact patient experience and quality of life (QoL). This study explores how VAD controllers can be redesigned using a human‐centered design approach to enhance the emotional and functional experience of the device for patients. Methods: VAD patients (n = 21), caregivers (n = 4) and healthcare practitioners (n = 24) were interviewed to uncover design opportunities. From this, a series of realistic scenarios to design for emerged. A "design by analogy" method took inspiration from existing consumer products to ideate new functionality for the VAD wearable system, creating concepts for a controller interface and paired wearable device. An additional 15 patients and 2 caregivers were engaged to explore current VAD controller experiences and evaluate the future‐state concepts. Results: This research validated the need for increased automation and emergency functionality in VAD controllers, including remote monitoring of data, accurate communication of battery status, and automated medical alerts for critical device alarms. "Manage my health," "Feeling normal," "Social belonging," "Feeling safe," and "Sense of control" emerged as key patient concerns to be met by future VAD controller designs. Conclusions: The study demonstrated an innovative and relevant approach to improve usability of future VAD peripherals. By considering both emotional and functional perspectives in the design of lifesaving medical devices such as VADs, device manufacturers can uncover new opportunities to improve patient QoL through improved user experiences. [ABSTRACT FROM AUTHOR]

Background: Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) presents significant treatment challenges due to its chronic nature, varied clinical presentations, and rarity. Subcutaneous immunoglobulin (SCIG) has emerged as a maintenance therapy, offering potential advantages in administration and patient experience over the previously recognized intravenous immunoglobulin (IVIG). Methods: We included all clinical studies involving CIDP patients treated with SCIG from eleven databases up to March 2024. Results: 50 clinical studies were included in the systematic review, with 22 involved in the meta-analysis. These studies offer clinical data on around 1400 CIDP patients. Almost all studies considered SCIG a maintenance therapy, with the majority of results suggesting it as a viable substitute that may offer comparable or enhanced advantages. Studies covered aspects such as efficacy, safety, quality of life, practicality, economic evaluation, and patient preference. Meta-analysis showed SCIG significantly improved muscle strength and sensory function, had fewer and milder side effects, reduced relapse rates, and received a strong preference. Conclusions: Findings suggest that SCIG for CIDP maintenance not only provides a more feasible alternative, with economic evaluations showing considerable cost reductions over time, and patient preference for SCIG being pronounced, but may also deliver comparable or superior health outcomes. Ongoing research lines on formulations, techniques, and direct comparative studies are critical to further illuminate, enhance, and expand SCIG's role in treatment. [ABSTRACT FROM AUTHOR]

Chronic postsurgical pain (CPSP) significantly impairs quality of life and poses a substantial healthcare burden, affecting up to a quarter of patients undergoing surgery. Although acute pain is recognised as a predictor for CPSP development, the role of patient experience remains underexplored. This study examines the predictive value of patient experience alongside traditional risk factors for CPSP after orthopaedic surgery. An exploratory analysis was conducted on 294 patients from a multicentre randomised clinical trial comparing continuous perineural analgesia and single-injection nerve block in ambulatory orthopaedic surgeries. Patient experience was assessed using the Evaluation du Vecu de l'Anesthésie Générale (EVAN-G) validated questionnaire. Factors associated with CPSP at 90 days after surgery were identified through univariate and multivariate analyses, incorporating patient-reported outcomes and classical variables. Out of 219 patients with complete data, 63 (29%) developed CPSP at day 90. Multivariate analysis revealed a poor pain experience, as assessed by the pain dimension of EVAN-G on postoperative day 2, as an independent predictor of CPSP (odds ratio 6.45, 95% confidence interval 1.65–25.26, P <0.01). Poor pain experience was associated with an augmented risk of CPSP. This study underscores the role of patient-reported outcomes, specifically the pain experience dimension captured by the EVAN-G scale, in prediction of CPSP 90 days after surgery. It suggests a shift from conventional assessments of pain intensity to a comprehensive understanding of pain experience, advocating for tailored pain management approaches that could reduce chronic pain, thereby improving patient quality of life and functional recovery. [ABSTRACT FROM AUTHOR]

Objective: Dietitians have a central role in eating disorder (ED) treatment, however few studies exist investigating therapeutic aspects of dietetic care and factors influencing the dietitian‐patient relationship. To address the gap, this study aimed to use a qualitative description approach to explore the experiences of delivering and receiving dietetic care in ED treatment in the UK. Method: Semi‐structured interviews were conducted with 6 specialist ED dietitians and focus groups with 11 recovered ED patients. Interviews were transcribed and inductive thematic analysis was performed to identify key themes describing the data. Results: Six key themes were generated: (1) Building trust, (2) Appropriate timing, (3) Adapting, (4) Dietitians as experts, (5) Boundaries, and (6) Difficult relationships. Participants highlighted the importance of building trust and considering nutritional risk and readiness in treatment approach. Patients expressed a desire for dietitians to have experience in EDs, facilitating understanding of their illness. However, dietitians identified the nature of EDs making their role challenging at times. Discussion: This study described various factors affecting dietetic care in EDs and provided a valuable insight into patients' perceptions of treatment. The findings support advancements in ED dietitians' knowledge and understanding, helping to enhance quality of care. Highlights: A trusting and collaborative dietitian‐patient relationship is considered important in supporting success of eating disorder (ED) treatment, however this relationship can take time to developExperience in eating disorders can facilitate dietitians to have greater understanding of the illness, including awareness of detrimental phrases or approaches, and appropriate boundaries to implementAdapting treatment approach based on stage of illness and individual values is perceived to support management of nutritional risk and development of an identity beyond the ED [ABSTRACT FROM AUTHOR]

Facial trauma is a common presentation to the emergency department, encompassing a spectrum from soft tissue injuries to fractures of the facial skeleton. Beyond the evident physical consequences, patients frequently face significant psychosocial issues, which are often overlooked in the recovery phase of treatment. The purpose of this review was to establish the experiences of patients following facial trauma using qualitative patient-reported data. A scoping review, searching four electronic databases (MEDLINE, Web of Science, PsychINFO, and Cochrane Library) using PRISMA methodology was conducted. Only one paper fulfilled the inclusion criteria. The paper used semi-structured open-ended interviews to obtain 20 patients' experiences of sustaining maxillofacial trauma and then synthesised the qualitative interviews into different themes. The findings from this scoping review highlight the profound need for prospective qualitative research in craniomaxillofacial traumatology, to better understand and address the experiences and perspectives of patients following facial trauma. [ABSTRACT FROM AUTHOR]

• There is no established treatment for problematic chemsex. • Problematic chemsex can be comorbid with sexual addiction. • Results of this exploratory study using ACT with MSM engaging in chemsex are promising. • Preliminary results suggest the efficacy of ACT towards associated psychological inflexibility, anxiety, depression, and sexual addiction. • Further research on ACT for chemsex in MSM is needed. Chemsex, a phenomenon involving the use of psychoactive substances in sexual contexts to facilitate or enhance sexual experiences, is substantially increasing among men who have sex with men (MSM), and has been described as a significant risk factor for mental and physical illness. However, no specialized treatment approach has yet been established. Acceptance and commitment therapy (ACT) could potentially be an appropriate psychotherapeutic framework, especially considering the MSM and sexual minority unique challenges and the role of psychological flexibility in this context. The present paper describes the assessment and ACT interventions, reports and discusses the results, of 10 adult MSM who self-referred to an outpatient psychiatry and addiction department in France for self-reported problematic chemsex that interfered with their quality of life. They completed symptom- and process-based measures at three different timepoints. Results were quantitatively analyzed, and the clinician's session notes and patients' experiences/accounts, recorded verbatim, served as a support for evaluating the global effects of ACT interventions. Results on outcome measures showed clinically notable and statistically significative improvements in psychological flexibility, anxiety and depression symptoms, as well as sexual addiction intensity between pre- and posttreatment, which were all persistent at 3- to 4-month follow-up. Process measure results indicated a high and consistent therapeutic alliance throughout therapy. This exploratory study, directly derived from clinical practice, suggests promising preliminary results. It can provide clinicians with a useful resource for using ACT as a potentially effective approach for problematic chemsex and comorbidities, and may guide future investigation to inform treatment development efforts, especially for MSM and sexual minority communities. [ABSTRACT FROM AUTHOR]

Objective. To explore the experiences and perspectives of patients and rheumatologists on decision aid (DA)-led tapering of advanced therapy in rheumatoid arthritis (RA). Methods. Semistructured interviews were completed with patients and rheumatologists, embedded within a pilot study of DA-led tapering (ie, dose reduction) of biologic disease-modifying antirheumatic drugs (bDMARDs) and targeted synthetic DMARDs (tsDMARDs) in RA. All patients were in sustained (≥ 6 mos) remission and had chosen to reduce their therapy after a DA-led shared decision with their rheumatologist. The rheumatologists included those participating in the pilot (n = 4), and those who were not (n = 8). Reflexive thematic analysis of audiotaped and transcribed interviews identified themes in the group experiences. Results. Patients (n = 10, 6 female) unanimously found the DA easy to understand and felt confident in shared decision making about treatment tapering and managing flares. Rheumatologists' (n = 12, 5 female) perspectives on tapering bDMARDs and tsDMARDs varied widely, from very supportive to completely opposed, and influenced their views on the DA. Rheumatologists expressed concerns about patient comprehension, destabilizing a stable situation, risks of flare, and extending appointment times. Despite their initial reservations about sending the DA to all eligible patients ahead of appointments, 3 of 4 participating rheumatologists adopted this approach during the pilot, which had the benefit of facilitating patient-led conversations. Conclusion. A DA-led strategy for tapering advanced therapy in RA was acceptable to patients and feasible in practice. Sending patients a DA ahead of their appointment facilitated patient-led conversations about tapering. [ABSTRACT FROM AUTHOR]

Why you should read this article: • To read the findings of a study that explored patients’ and professionals’ experiences of virtual clinics during COVID-19 • To recognise the need to assess individual patients when considering the use of virtual clinics • To acknowledge the need for appropriate training and equipment for staff to enhance their experience of virtual clinics. Background: The coronavirus disease 2019 (COVID-19) pandemic resulted in the rapid implementation of virtual clinics to conduct consultations via telephone or video to minimise contact between staff and patients. Aim: To investigate the experiences of patients with cancer and healthcare professionals of virtual clinics during COVID-19 and to explore ways to improve their experiences. Method: A qualitative study involving semi-structured interviews with 36 patients and ten healthcare professionals at a London NHS trust. Data were analysed using thematic analysis. Findings: Five themes emerged from analysis – acceptance, benefits, communication, technology and choice. Most participants were accepting of virtual clinics and supported their continuing use. The average satisfaction rating for virtual clinics was higher among patients than among healthcare professionals; many healthcare professionals suggested that support in setting up video-based virtual clinics might improve their satisfaction. Conclusion: Patients’ individual needs should be considered when deciding whether to use virtual or face-to-face clinics, while staff require appropriate training and adequate equipment to enhance their experience of virtual clinics. [ABSTRACT FROM AUTHOR]

Aims: Beyond causing physical discomfort, overactive bladder (OAB) is distressing to patients across a variety of psychosocial domains. In this qualitative component of a larger mixed methods study, we explore patients' lived experience with OAB to understand how this condition impacts individuals on a personal and social level, as well as their experiences interacting with the health care system. Methods: A total of 20 patients and 12 physicians completed a questionnaire and semi‐structured interview. The interview guide, developed in an iterative fashion by the authors, included questions about treatment decision making as well as experiences living with or treating OAB; this manuscript focuses on the questions probing lived experiences and interactions between patients and physicians. The interviews were recorded, transcribed and inductively coded and analyzed according to the principles of interpretive description to develop themes. Results: Analysis of patient and physician interviews yielded five key themes: isolation due to OAB diagnosis, social stigma associated with noticeable OAB symptoms, embarrassment from interactions with the health care system, feeling invalidated and dismissed by physicians, and OAB patients as a "vulnerable" population with "desperation" for cure. Conclusions: OAB causes patients marked distress beyond their physical symptoms; it causes feelings of isolation from friends and family and makes them feel embarrassed to discuss their condition with loved ones and physicians alike. Efforts to destigmatize OAB, validate patient experiences, and improve access to OAB care may help diminish the psychosocial burden of OAB. [ABSTRACT FROM AUTHOR]

Purpose: Physical activity is a key component of cardiac rehabilitation (CR). Despite the widely reported benefits of CR, uptake in the United Kingdom is still low. Alternative home-based and technology-facilitated delivery models are needed to improve CR uptake and physical activity. This study set out to explore patient and clinician views of personalised, multidimensional physical activity feedback and its potential use within CR. Methods: We developed graphics for the presentation of personalised multidimensional physical activity feedback from data collected through wrist-worn monitors. Thirteen cardiac patients and nine healthcare professionals recruited from South West England wore research grade physical activity monitors for seven days. Participants then attended semi-structured interviews during which personalised physical activity feedback was provided. Interviews were audio-recorded, transcribed, and analysed thematically. Results: Two main themes were derived from the data which covered: 1) the perceived value of multidimensional physical activity feedback, and 2) support needed to facilitate understanding. Within the first theme, participants acknowledged that multidimensional physical activity feedback was useful for monitoring progress, goal setting, and increasing self-awareness of physical activity behaviour among both patients and clinicians. Within theme two, the need for more guidance and support from clinicians to aid patient understanding and reassurance was highlighted, particularly for those with very low physical activity levels. Conclusions: Multidimensional physical activity feedback delivered using a technology-enabled approach was perceived as acceptable among patients and clinicians. This study provides insights into the potential novel use of technology-enabled physical activity feedback to support and expand the delivery of CR. [ABSTRACT FROM AUTHOR]

BACKGROUND Out-of-office blood pressure (BP) measurement is recommended when making a new hypertension diagnosis. In practice, however, hypertension is primarily diagnosed using clinic BP. The study objective was to understand patient attitudes about accuracy and patient-centeredness regarding hypertension diagnostic methods. METHODS Qualitative study within a randomized controlled diagnostic study conducted between May 2017 and March 2019 comparing the accuracy and acceptability of BP measurement methods among patients in an integrated healthcare delivery system. All participants completed 24-hour ambulatory blood pressure monitoring (ABPM), plus either clinic BP, home BP monitoring (HBPM), or kiosk BP diagnostic testing. Qualitative interviewees (aged 31–76 years, n  = 35) were recruited from the main study. RESULTS Participants who completed HBPM found it to be comfortable and low burden, and believed it produced accurate results. Participants in the clinic arm described clinic measurements as inconvenient. Participants in the kiosk arm overall did not favor kiosks due to concerns about accuracy and privacy. Participants described ABPM as the most accurate method due to repeated measurements over the 24-hour period in real-world contexts, but many found it uncomfortable and disruptive. Participants also noted methods that involved repeated measures such as HBPM and ABPM particularly influenced their understanding of whether or not they had hypertension. CONCLUSIONS Hypertension diagnostic methods that include more BP measurements help patients gain a deeper understanding of BP variability and the lower reliability of infrequent measurements in the clinic. These findings warrant implementing strategies to enhance out-of-office BP diagnostic testing in primary care. CLINICAL TRIALS REGISTRATION Trial number NCT03130257. [ABSTRACT FROM AUTHOR]

BACKGROUND Remote patient monitoring (RPM), which includes out-of-office blood pressure (BP) measurement, coupled with interventions including telehealth and team-based care, is recommended for hypertension (HTN) management. We aimed to assess participant experience with RPM for HTN (RPM-HTN) to understand barriers and facilitators to implementing RPM-HTN in a primary care population where health disparities and social inequities are prevalent. METHODS This is a qualitative implementation study of participants' experiences with an RPM-HTN program for primary care patients with uncontrolled HTN at an academic health system. We recruited participants with high and low levels of engagement (≥16 or <16 days of transmitted BP readings per month). Semi-structured interviews were conducted, and descriptive statistics and rapid qualitative analysis were used to identify factors affecting the implementation of RPM-HTN, specifically adoption, acceptability, appropriateness, and feasibility. RESULTS Multiple themes emerged from interviews with 14 participants. A doctor's recommendation and wanting help with BP management were facilitators for engagement, while work conflicts and forgetfulness were barriers to engagement. Participants enjoyed the format and content of nurse and clinical pharmacist phone calls and forming a relationship with the team; expressed improved understanding of HTN and BP management; and appreciated the convenience of remote monitoring. CONCLUSIONS Participants found RPM-HTN acceptable and appropriate, highlighting the team-based and out-of-office approach to care. This study provides actionable targets to overcome feasibility barriers to implementation. In order to increase engagement, RPM policies and procedures should take into account barriers including the quantity of required BP measurements and mechanisms of telehealth communication. [ABSTRACT FROM AUTHOR]

Congenital heart disease (CHD) is the most common global congenital defect affecting over 2.4 million individuals in the United States. Ongoing medical and surgical advancements have improved the survival of children with CHD leading to a shift where, as of 2010, adults constitute two-thirds of the CHD patient population. The increasing number and aging of adult congenital heart disease (ACHD) patients present a clinical challenge due to heightened complexity, morbidity, and mortality. Studies indicate that 1 in 13 ACHD patients will develop heart failure (HF) in their lifetime. ACHD-HF patients experience more frequent emergency department visits, higher hospitalization rates, longer hospital stays, and higher mortality compared to non-ACHD patients with heart failure (non-ACHD-HF). Despite HF being the leading cause of death in ACHD patients, there is a notable gap in evidence regarding treatment. While guideline-directed medical therapy (GDMT) has been extensively studied in non-ACHD-HF, research specific to ACHD-HF individuals is limited. This article aims to comprehensively review available literature addressing the pharmacological treatment of ACHD-HF. [ABSTRACT FROM AUTHOR]

Purpose: Integrated care (IC) is mainly studied from the perspectives of organisations or employees. However, less research is focussed on how patients themselves experience person-centred (PC) IC in practice. This context-specific, small-scale study examines what PC-IC means to older patients who went through joint replacement surgery (JRS). Design/methodology/approach: The data consists of ten in-depth interviews of older patients, focussing on their experiences of care during their patient journey related to joint knee or hip replacement surgery. The data were analysed with thematic analysis. Findings: Three central dimensions of PC-IC for older patients were identified: information sharing, continuity of care and compassionate encountering. Human validation and compassionate encountering were experienced as important aspects of PC-IC. Compassionate encountering was concretised through professionals' very small everyday practices, which made the patient feel comfortable and respected. Instead, probably due to the medical and quite straight-forward nature of the joint replacement care process, patients seem to be pleased to trust the expertise of professionals and did not necessarily expect an active role or participation in the decision-making. Originality/value: This Finnish case study focusses on the patients' authentic perceptions of what is central to person-centred IC in the specific context of JRS. [ABSTRACT FROM AUTHOR]

Family members frequently provide both physical and emotional support to patients. Previous studies have focused primarily on the experiences of patients with traumatic brain injury (TBI) and their caregivers during home care and the transition from hospital care to the community, with less emphasis on their experiences during acute hospital care immediately after TBI. This study aimed to explore the experiences of caregivers of patients with TBI during acute hospitalizations. A qualitative descriptive study using individual semistructured interviews was conducted at the trauma center of a tertiary hospital in western China. A purposive sample of 21 caregivers of patients with TBI were recruited. The interviews were conducted face to face in the inpatient ward from July to September 2023. Conventional content analysis was used to conduct the framework analysis. The experiences of caregivers were identified within three key themes: TBI consequences in patients (physical impairments, psychological distress, and cognitive dysfunctions), challenges of caregivers (physiological/emotional/economic burdens, conflicts, and concerns regarding recovery), and needs of caregivers (health information, medical services, and recovery expectations). This study highlights the experiences of caregivers of patients with TBI during hospital stays in western China. The challenges faced by caregivers and the needs of caregivers are multidimensional. Appropriate support should be provided to alleviate the burden of caregiving. [ABSTRACT FROM AUTHOR]

Bariatric surgery is becoming a more commonly used treatment for the management of obesity; however, measures of effectiveness have tended to rely heavily on the short‐term physical health indicators of success, whilst largely neglecting psychological and social factors. The understandings achieved through listening to the lived experiences of countless individuals as they steered their way through the complex journey of bariatric surgery, this commentary deliberates on some of the unique lived experiences of patients who have undergone bariatric surgery and the overriding and under‐supported long‐term social and psychological aftermath. [ABSTRACT FROM AUTHOR]

Purpose: Uveal melanoma (UM) is adults' most common primary intraocular malignant tumor. It has been observed that 40% of patients experience distant metastasis during subsequent treatment. While there exist multigene models developed using machine learning methods to assess metastasis and prognosis, the immune microenvironment's specific mechanisms influencing the tumor microenvironment have not been clarified. Single-cell transcriptome sequencing can accurately identify different types of cells in a tissue for precise analysis. This study aims to develop a model with fewer genes to evaluate metastasis risk in UM patients and provide a theoretical basis for UM immunotherapy. Methods: RNA-seq data and clinical information from 79 μm patients from TCGA were used to construct prognostic models. Mechanisms were probed using two single-cell datasets derived from the GEO database. After screening for metastasis-related genes, enrichment analysis was performed using GO and KEGG. Prognostic genes were screened using log-rank test and one-way Cox regression, and prognostic models were established using LASSO regression analysis and multifactor Cox regression analysis. The TCGA-UVM dataset was used as internal validation and dataset GSE22138 as external validation data. A time-dependent subject work characteristic curve (time-ROC) was established to assess the predictive ability of the model. Subsequently, dimensionality reduction, clustering, pseudo-temporal analysis and cellular communication analysis were performed on GSE138665 and GSE139829 to explore the underlying mechanisms involved. Cellular experiments were also used to validate the relevant findings. Results: Based on clinical characteristics and RNA-seq transcriptomic data from 79 samples in the TCGA-UVM cohort, 247 metastasis-related genes were identified. Survival models for three genes (SLC25A38, EDNRB, and LURAP1) were then constructed using lasso regression and multifactorial cox regression. Kaplan-Meier survival analysis showed that the high-risk group was associated with poorer overall survival (OS) and metastasis-free survival (MFS) in UM patients. Time-dependent ROC curves demonstrated high predictive performance in 6 m, 18 m, and 30 m prognostic models. Cell scratch assay showed that the 24 h and 48 h migration rates of cells with reduced expression of the three genes were significantly higher than those of the si-NC group. CD8 + T cells may play an important role in tumour metastasis as revealed by immune infiltration analysis. An increase in the percentage of cytotoxic CD8 + T cells in the metastatic high-risk group was found in the exploration of single-cell transcriptome data. The communication intensity of cytotoxic CD8 was significantly enhanced. It was also found that the CD8 + T cells in the two groups were in different states, although the number of CD8 + T cells in the high-risk group increased, they were mostly in the exhausted and undifferentiated state, while in the low-risk group, the CD8 + T cells were mostly in the functional state. Conclusions: We developed a precise and stable 3-gene model to predict the metastatic risk and prognosis of patients. CD8 + T cells exhaustion in the tumor microenvironment play a crucial role in UM metastasis. [ABSTRACT FROM AUTHOR]

Background: While some findings indicate high levels of patient satisfaction with remote eating disorder treatment, others reflect feelings of disconnection due to unique telehealth treatment challenges. The COVID-19 pandemic presented circumstances that likely impacted the findings established thus far. As such, the present study sought to understand patient experiences of connection in an intentionally remote eating disorder treatment program, specifically in a context outside of pandemic transition. Methods: A secondary analysis of de-identified qualitative data previously obtained for quality improvement purposes via a client satisfaction survey was conducted. Adult patient responses (N = 38) were analyzed via reflexive thematic analysis within a critical realist framework. Results: Four themes were generated from the data: (1) Embracing one's humanity paves the way for connection, (2) Discovering a "sense of community" in remote care, (3) "They made me feel I was worth recovering": connection as a vehicle for healing, and (4) Aligning expectations and reality: reconceptualizing the journey to connection in remote eating disorder care. Conclusions: Overall, findings suggest that it is possible for patients to form strong, impactful connections in remote treatment. Importantly, patient perspectives indicated that there were shifts in how these connections were experienced as a result of the remote care environment (e.g., how support could be provided and by whom). Considerations unique to remote care (e.g., offering training to improve clients' comfort with technology) may be important to fostering connection, thereby contributing to improved patient experiences and treatment outcomes. Plain English summary: This study investigated patient experiences of connection in remote eating disorder treatment using satisfaction survey data. Patients reported forming strong interpersonal connections that were deeply impactful to their recovery, emphasizing the importance of feeling understood, accepted, and cared for in building these connections. However, they noted some differences in how these connections were experienced as compared to in-person settings (e.g., how support could be provided and by whom), indicating a need for adaptations in remote care (e.g., training on how to use technology). These lived experience perspectives can help to inform the ongoing implementation of remote eating disorder treatment to improve patient care. [ABSTRACT FROM AUTHOR]

ABSTRACT Patient‐initiated brief admission (PIBA) is an innovative psychiatric care intervention that gives patients the autonomy to initiate a short admission (approximately 1–3 days) to psychiatric inpatient care. This intervention is structured around a mutual agreement between the patient and their care provider that outlines the specific structure and content of their care. Unlike regular psychiatric admissions, healthcare professionals do not review the patient's decision for admission during PIBA. Similar interventions have been developed globally to reduce the need for long inpatient admissions and compulsory care by enhancing patient autonomy, promoting active participation in care, and empowering patients to recognise early signs of mental health deterioration. The objective of this systematic review was to explore the experiences of PIBA among individuals with mental health disorders. A systematic review was conducted using qualitative articles sourced from the PubMed, CINAHL, and PsycINFO databases. A total of thirteen original articles were included in the review, encompassing 186 patients. Research demonstrates that PIBA significantly impacts patients' care experiences in various ways. Access to PIBA gives patients the opportunity to take a break from daily stressors, which has proven significant in interrupting the cycle of worsening symptoms and negative thoughts. Furthermore, when the care environment is characterised by trust and respect, patients experience an increased sense of freedom, which contributes to a more effective recovery process. PIBA provides patients with a sense of safety and offers the possibility of a more functional daily life. Healthcare professionals'attitude and care provision also significantly influences patients' experiences. Central to a positive patient experience are a warm reception, attentiveness, and active listening. PIBA can not only change patients' perceptions of healthcare but, more importantly, fosters a transformative view of themselves as active participants in their own well‐being. Knowledgeable healthcare professionals are crucial for the successful implementation of this intervention. By offering dignity and warmth alongside safety, PIBA addresses a critical gap in patient mental health care. [ABSTRACT FROM AUTHOR]

The nursing profession has a long history of advocating for social justice and health equity, and both values profoundly infuse nursing ethics, theory, and education. Homecare nursing occurs between the patient's daily life at home and the public health care system. Therefore, homecare nurses ideally possess insight into the living conditions and social determinants of health that their patients experience. This interpretive phenomenological study explores the strategies employed by homecare nurses to fight health inequity and advance social justice. Data were collected through participant observations, situational interviews, and small group interviews with 12 homecare nurses from two municipalities. Three analytical approaches were used: paradigm cases, exemplars, and thematic analysis. The data identified two primary strategies homecare nurses use to circumvent, solve, and mitigate the negative consequences of social determinants of health on patients' care and treatment: “Negotiating practice” and “Aligning practice.” “Negotiating practice” ensures that care and treatment are delivered in a way acceptable to all involved. “Aligning practice” ensures cohesion, progression in the treatment and care trajectory, and support for patients and relatives in navigating the system. Both strategies are part of nurses' largely hidden work, reflecting the nursing profession's position as nested between the individual patient and the system. [ABSTRACT FROM AUTHOR]

Summary Central disorders of hypersomnolence (CDH) are chronic diseases that significantly impact the lives of affected individuals. We aimed to explore the perspectives of individuals with narcolepsy type 1 (NT1), narcolepsy type 2 (NT2), and idiopathic hypersomnia (IH), and the challenges they encounter in their daily lives and within the healthcare systems in the Nordics. Interviews with patients (N = 41) and healthcare professionals (n = 14) and a patient survey (n = 70) were conducted in 2022 in Denmark, Sweden, Finland, and Norway to develop a patient journey map that visualises the patient with CDH journey and provides insights into the difficulties faced by these individuals. The patient journey mapping approach was chosen to focus on the processes and experiences of patients, highlighting the challenges they confront. Our findings revealed that the process of receiving a CDH diagnosis, as well as subsequent misdiagnoses and treatment, can be protracted and burdensome. CDH diagnoses remain poorly understood by neurologists, general practitioners, and the public, resulting in adverse consequences, with patients reporting a mean (standard deviation [SD]) time from symptom onset to diagnosis of 8.4 (5.11) years and a mean (SD) of 5.5 (4.17) productive hours lost/day. The available non‐pharmaceutical support for patients with CDH, encompassing medical, psychological, educational, and professional assistance, was insufficient. The generalisability of the findings to one specific diagnosis is limited due to the collective analysis of the CDH. These findings are invaluable for identifying disruptions in the patient with CDH journeys and for designing improved pathways for those with NT1, NT2, and IH in the future. [ABSTRACT FROM AUTHOR]

Purpose Methods Results Conclusion Patients with exudative and nonexudative age‐related macular degeneration (AMD) can experience physical, mental, social, administrative or financial burden that are associated with the treatment of this progressive chronic disease. The role of healthcare providers in supporting patients who experience high treatment burden can be important, especially when it comes to effective communication. Despite previous research underlining the need to improve patient‐provider communication in AMD care, patient experiences with communication, and how these are related to perceived treatment burden, remain underexplored.A survey was distributed among Dutch patients with AMD, which contained questions on several aspects of communication with the patient's ophthalmologist, such as the Quality Of communication Through the patients' Eyes (QUOTE‐COMM, including task‐, affect‐ and therapy‐oriented communication) questionnaire. Patients were primarily enlisted through a patient association.A total of 162 patients completed the questionnaire, of which 133 provided fully completed responses. While patients reported positive experiences with affect‐oriented communication of their ophthalmologist, they rated task‐ and therapy‐oriented communication as below their expectations. Most patients wished to receive (additional) information on AMD‐related costs (71%), future perspectives (71%) and coping with negative emotions pertaining to the disease (68%). Both lower experience scores on task‐ and affect‐oriented communication and lower self‐efficacy were associated with higher administrative burden and mental burden among patients.Our study shows that current communication, information provision and decision‐making do not fully meet patients' needs and preferences. Enhancing patient‐provider communication seems important, as effective dialogue is likely to diminish patients' perceived treatment burden. [ABSTRACT FROM AUTHOR]

One of the most common concerns of patients undergoing surgery is preoperative anxiety, with a prevalence of up to 48%. The effects of preoperative anxiety continue beyond the preoperative period and are associated with more severe postoperative pain and poorer treatment outcomes. Treatment options for preoperative anxiety are often limited as sedatives cause side effects and their efficacy remains controversial. Placebo research has shown that optimization of positive treatment expectations, as can be achieved through placebo administration and education, has clinically relevant effects on preoperative anxiety, pain and treatment outcomes. As the administration of masked placebos raises ethical questions, clinical studies have increasingly focused on the use of open, non-deceptive placebo administration (open-label placebo, OLP). The use of OLPs to reduce preoperative anxiety and modify clinically relevant postoperative outcomes has not yet been investigated. This bicentric, prospective, randomized-controlled clinical trial (PATE Trial; German Registry for Clinical Studies DRKS00033221), an associated project of the Collaborative Research Center (CRC) 289 “Treatment Expectation”, aims to alleviate preoperative anxiety by optimizing positive treatment expectations facilitated by OLP. Furthermore, this study examines a potential enhancement of these effects through aspects of observational learning, operationalized by a positive expectation-enhancing video. In addition, patient’s perspective on the self-efficacy and appropriateness of OLPs prior to surgery will be assessed. To achieve these objectives, female patients will be randomized into three groups before undergoing gynecological laparoscopic surgery. One group receives the OLP with a positive rationale conveyed by a study physician. A second group receives the same intervention, OLP administration and rationale provided by a physician, and additionally watches a video on OLP presenting a satisfied patient. A third group receives standard treatment as usual (TAU). Outcome measures will be effects on preoperative anxiety and postoperative experience, particularly visceral and somatic postoperative pain. As the non-deceptive administration of placebos; when indicated; may yield positive outcomes without side effects, and as current treatment of preoperative anxiety is limited, evidence from clinical placebo research has the potential to improve outcomes and patient experience in the surgical setting. [ABSTRACT FROM AUTHOR]

Introduction: Chronic kidney disease (CKD) affects a significant portion of the UK population and is a pressing public health issue. Current screening methods have a low patient uptake rate. This retrospective study explores the patient experience of remote diagnostic screening. Objective: This article retrospectively analyses patient-reported experiences, focusing on at-home urinary screening to detect CKD. Intervention: Our primary care network commissioned a remote diagnostic service for adult patients with diabetes (Types I and II) who had not taken urinary albumin: creatinine ratio test within 12 months. Patients were provided with an at-home kit and guided by a smartphone application. Qualitative clinical data was collected during screening, with a questionnaire capturing patients' experiences. Impact: A total of 60% of eligible patients performed testing, and 35% were detected to have abnormal results. A total of 80% of patients preferred remote screening. Conclusions: This study provides evidence for remote CKD screening and opens avenues for innovation. Most patients reported a positive experience, underscoring the potential of this approach to improve health outcomes, especially in higher-risk populations. [ABSTRACT FROM AUTHOR]

Background: Physical activity is thought to be a key component in reducing postoperative complications following major abdominal surgery. The available literature on exercise interventions following radical cystectomy in patients with bladder cancer is scarce but suggests that physical activity and exercise might improve physical function and health-related quality of life, thus calling for further investigation. The CanMoRe-trial is a single-blinded randomised controlled trial (Clinicals Trials NCT03998579 25/06/2019), aimed at evaluating the impact of an exercise intervention in primary care following robot-assisted radical cystectomy. This study seeks to explore patients' experiences of the exercise intervention in the CanMoRe-trial to gain a better understanding of facilitating aspects and potential barriers. Methods: A qualitative study was conducted involving 20 patients from the intervention group of the CanMoRe-trial who were interviewed individually between October 2020 and March 2023 using a semi-structured interview guide. The interviews were recorded and transcribed verbatim and reflexive thematic analysis was used to analyse the data. Results: Four main themes were identified: Having to adapt to new circumstances, describing the challenges regarding physical activity patients face after discharge. Optimising conditions for rehabilitation, describing how practical conditions affect patients' ability to exercise. Motivated to get back to normal, describing patients´ desire to get back to normal life and factors influencing motivation. Importance of a supportive environment, describing the impact of social support, support from physiotherapists, and how the environment where exercise takes place impacts patients' ability to exercise. Conclusion: This study found that patients participating in the CanMoRe-trial are positive towards physical exercise in PC following radical RARC. They are motivated to get back to normal life but face major challenges when arriving home following surgery, which affect their ability to perform physical activity and engage in exercise. Conditions need to be optimised to support patients' ability to engage in exercise by providing an accessible PC location to perform exercise in. A supportive environment is also needed, including guidance from healthcare professionals regarding which type of exercise, intensity and amount of exercise that should be performed, enabling patients gradually to develop self-efficacy regarding exercise and focusing on goals related to patients' normal lives before surgery. [ABSTRACT FROM AUTHOR]

Despite improvements in early detection and therapeutic interventions, the mortality rate for Black breast cancer patients is still significantly higher than that of White breast cancer patients. This study seeks to understand differences in the patient experience that lead to this disparity. Semi-structured interviews were conducted to understand the breast cancer treatment process and patient experiences. This study collected health services and timeline data from medical records. Based on these two data sources, the patient's journey in breast cancer treatment was mapped and a thematic analysis was conducted to identify challenges and barriers in the process. The cancer care continuum consists of four stages—diagnosis, surgery, chemotherapy/radiation, and follow-up care. The themes contributing to patient experiences and challenges were identified and compared in each stage for both Black and White patients. Both Black and White participants faced challenges related to financial constraints, treatment changes, lack of autonomy, and insufficient emotional support. However, Black participants additionally faced significant barriers in terms of cultural concordance, effective patient-provider communication, and delay in diagnosis. This study highlights the importance of incorporating effective provider-patient communication, navigation, and emotional support, especially for Black breast cancer patients throughout the cancer care continuum to address healthcare disparities. [ABSTRACT FROM AUTHOR]

Introduction: Patients experience high symptom burden during critical care hospitalization and mechanical ventilation. Medications are of limited effectiveness and are associated with increased morbidity such as delirium and long-term cognitive and psychological impairments. Music-based interventions have been used for pain and anxiety management in critical care but remain understudied in terms of music selection and range of symptoms. This study aimed to describe the ways in which a diverse sample of critically ill adults used personalized music listening and their perceptions of the effects of music listening on symptom experience after critical injury. Methods: Semi-structured interviews (N = 14) of adult patients, families and friends who were provided with personalized music in an urban, academic, neurotrauma intensive care unit were collected and analyzed with grounded theory methodology. Open coding of transcripts, field notes and memos was performed using Atlas.ti.9.1. Recruitment and data collection were deemed complete once thematic saturation was achieved. Results: We identified 6 uses of personalized music listening in critical care: 1) Restoring consciousness; 2) Maintaining cognition; 3) Humanizing the hospital experience; 4) Providing a source of connection; 5) Improving psychological wellbeing; and 6) Resolving the problems of silence. Patients used music to address psychological experiences of loneliness, fear, confusion, and loss of control. Personalized music helped patients maintain their identity and process their trauma. Additional benefits of music included experiencing pleasure, hope, resilience, and feelings of normalcy. Patients disliked being sedated and used music to wake up. Findings also highlighted the problem of the lack of meaningful stimulation in critical care. Conclusion: Critically injured adults used personalized music to achieve psychological and cognitive homeostasis during critical care hospitalization. These results can inform future studies designed to explore the use of music-based interventions to prevent and treat the cognitive and emotional morbidity of critical care. [ABSTRACT FROM AUTHOR]

Background: The aim of this project was to develop a tool using the experience of previous patients to inform patient-centred clinical decision-making in the context of total hip arthroplasty (THA). We sought out the patients' views on what is important for them, leveraging registry data, and providing outcome information that is perceived as relevant, understandable, adapted to a specific patient's profile, and readily available. Methods: We created the information tool "Patients like me" in four steps. (1) The knowledge basis was the systematically collected detailed exposure and outcome information from the Geneva Arthroplasty Registry established 1996. (2) From the registry we randomly selected 275 patients about to undergo or having already undergone THA and asked them via interviews and a survey which benefits and harms associated with the operation and daily life with the prosthesis they perceived as most important. (3) The identified relevant data (39 predictor candidates, 15 outcomes) were evaluated using Conditional Inference Trees analysis to construct a classification algorithm for each of the 15 outcomes at three different time points/periods. Internal validity of the results was tested using bootstrapping. (4) The tool was designed by and pre-tested with patients over several iterations. Results: Data from 6836 primary elective THAs operated between 1996 and 2019 were included. The trajectories for the 15 outcomes from the domains pain relief, activity improvement, complication (infection, dislocation, peri-prosthetic fracture) and what to expect in the future (revision surgery, need for contralateral hip replacement) over up to 20 years after surgery were presented for all patients and for specific patient profiles. The tool was adapted to various purposes including individual use, group sessions, patient-clinician interaction and surgeon information to complement the preoperative planning. The pre-test patients' feedback to the tool was unanimously positive. They considered it interesting, clear, complete, and complementary to other information received. Conclusion: The tool based on a survey of patients' perceived concerns and interests and the corresponding long-term data from a large institutional registry makes past patients' experience accessible, understandable, and visible for today's patients and their clinicians. It is a comprehensive illustration of trajectories of relevant outcomes from previous "Patients like me". This principle and methodology can be applied in other medical fields. [ABSTRACT FROM AUTHOR]

Insight into the daily life experiences of patients with post-COVID-19 syndrome is lacking. The current study explored temporal fluctuations of and associations between positive and negative affect and symptoms throughout the day in previously hospitalised post-COVID-19 patients using an experience sampling methodology. Ten participants (age: median = 60, interquartile range = 9 years; 50% women; 80% ≥1 comorbidity; 8–12 months since hospital discharge) filled out brief online questionnaires, six times a day for 14 consecutive days. Positive and negative affect, and self-reported symptoms (physical and mental fatigue, cognitive functioning, dyspnoea, and pain) were assessed in real-time. Primarily, graphs were analysed to assess the individual longitudinal courses of and (concurrent and time-lagged) associations between affect and symptoms. Secondly, correlations or multilevel linear regression models were used to support these interpretations. Visual assessment showed limited temporal fluctuation in affect and symptoms. All symptoms appeared to associate positively with each other (correlations between.26 and.85). Positive affect was associated with lower symptoms severity (β's between -.28 and -.67), and negative affect with higher symptoms severity (β's between.24 and.66). Time-lagged analyses showed that–adjusted for residual symptom severity of prior measurements–both types of affect predicted symptom severity two hours later (β's between -.09 and -.31 for positive affect; between.09 and.28 for negative affect). These findings suggest that positive and negative affect may play important roles in post-COVID-19 symptom experience and temporal fluctuation. [ABSTRACT FROM AUTHOR]

Background: Improving patients' experience, enhancing patients' trust and improving the willingness to see a doctor are the key to the real implementation of the "gatekeeper" role of residents' health in township health centers. At present, in the field of health management, the research on the relationship between the three is relatively limited. The purpose of this study is to explore the current situation of patients' experience, patients' trust and willingness to see a doctor in township health centers, and further explore the relationship between the three, so as to provide a theoretical basis for improving the overall service and management quality of township health centers. Methods: In this study, a cross-sectional survey was conducted in Shandong Province, China from July to October 2020. We used a structured questionnaire to collect data, which included general information, medical information, patient experience, patient trust, and willingness to see a doctor. Patient experience, patient trust, and willingness to see a doctor were evaluated using the Likert 5-point scoring method, with a maximum score of 5. The higher the score, the better the patient experience, the greater the patient trust, and the stronger the willingness to see a doctor. SPSS21.0 was used to describe the current situation, test the reliability and validity, and analyze the Pearson correlation. AMOS23.0 was used for structural equation modeling. Results: The score of willingness to see a doctor was 3.84 ± 0.62. The score of patient experience was 3.81 ± 0.47, and the score of patient trust was 3.81 ± 0.60, which was a lower score compared to other studies in the same period. Both patient experience and patient trust both had a directly positive impact on the willingness to see a doctor, and the impact coefficients were 0.19 and 0.68, respectively. Patient experience has a direct positive impact on patient trust, with an impact coefficient of 0.74. Patient trust played a partial mediating role in the relationship between patient experience and willingness to see a doctor, and the impact coefficient was 0.50. Conclusions: If the reform of China's healthcare system is to realize the goal of "not leaving the countryside for minor illnesses and not leaving the county for serious illnesses" increasing the willingness of patients to see a doctor at the grass-roots level primary hospitals is key. In addition, the government should vigorously promote the construction of township health centers and stimulate the vitality of grass-roots health institutions. If primary hospitals want to "catch" the demand of patients, they must improve patient experience and enhance patient trust. [ABSTRACT FROM AUTHOR]

ABSTRACT Aims and Objectives Background Design Methods Results Conclusion Clinical Relevance The purpose of this study was to explore the relationship between symptom clusters and self‐management among maintenance haemodialysis (MHD) patients.MHD patients experience disease progression and multiple symptom burdens that severely impact quality of life, and self‐management of symptoms may significantly improve patient‐reported outcomes.A cross‐sectional study.This cross‐sectional descriptive study included 194 patients undergoing MHD. The patients were assessed using the Dialysis Symptom Index (DSI) and the Haemodialysis Self‐Management Instrument (HD‐SMI). We used descriptive analysis, exploratory factor analysis, Pearson's correlation analysis and linear regression analysis to examine (1) the level of individual self‐management, (2) the presence of symptom clusters by symptom severity and (3) the correlation between symptom clusters and self‐management behaviours. This study was conducted in accordance with the STROBE checklist.The top five most severe symptoms among the patients were itching, feeling tired or lack of energy, difficulty sleeping, dry mouth and dry skin. We identified five groups of symptoms: (1) poor sleep, (2) neuromuscular, (3) gastrointestinal, (4) skin irritation and (5) psychological. In the present study, MHD patients reported low to moderate levels of self‐management behaviours (50.84 ± 10.56), and low self‐management ability was correlated with greater severity of the five symptom clusters (p < 0.01). Linear regression analysis revealed that all five symptom clusters were included in the regression equation, explaining 30% of the total variance in self‐management skills among MHD patients.Enhanced awareness of symptom clusters and comprehensive symptom management are necessary to improve patients' quality of life.Nursing practices should incorporate comprehensive symptom assessments to help patients develop effective self‐management strategies to improve quality of life. [ABSTRACT FROM AUTHOR]

Physical functioning can be increased in people with stroke by using a mobile health application. This study aimed to investigate the feasibility of a 10-week community-based program using the WalkWithMe (WWM) application in people with late sub-acute and chronic stroke in Benin. An interventional pilot study with mixed methods research design was used examining the application of an unsupervised individualized mobile Health (mHealth) instructed training program. Main outcome included the application usage, safety, adherence, perceived enjoyment, mHealth quality, patient experiences and pre-post efficacy measures. Nine adults, five males, median age of 60 years and time since stroke of 12 months participated in this study. For most participants adherence with the application was over 70%. However, some usability problems were observed due to incorrect understanding and use by participants and technical problems. The application was very fun, stimulating and enjoyable. Significant improvements were found with median (pre/post measures) of locomotors skill (1.4/3.4); impairments (38/40), Barthel Index (85/95), activity limitation (2.1/3.1), and quality of life (194/218). A trend towards significant improvement was found with 6 minutes walking test (181/220, p = 0.06). The WWM application is perceived as a potential approach to increase physical activity and functioning among people with stroke in Benin. [ABSTRACT FROM AUTHOR]

ABSTRACT This study examined patients' experiences of menstrual health in psychiatric inpatient settings in England as reported by staff and patients. Questionnaires were conducted with 67 staff members and 101 people with lived experience of menstruation and treatment on a psychiatric ward. 10 semi‐structured interviews were conducted with people with lived experience. Data were analysed using reflexive thematic analysis. Grouped into overarching themes of institutional and interpersonal environments, four themes were identified: access to menstrual materials; the lack of privacy when menstruating in psychiatric inpatient settings; attitudes and approaches to menstruation; and menstrual support needs and care provision. There was variation among the experiences reported, with some patients receiving dignified care, whilst others described facing ‘degrading’ and ‘dehumanising’ treatments and enhanced feelings of shame and embarrassment around menstruation, in comparison with what they usually experience. This appeared to arise due to the interplay between mental health services overlooking menstruation and the overreliance on restrictive practices. These experiences may be understood as menstrual injustices, period poverty, potentially amounting to neglect and posing iatrogenic harms. Participants also discussed how their mental illness and distress, particularly within the context of trauma and/or eating disorders, shaped their menstrual experiences. However, many patients did not receive adequate support in relation to this. Patients' pain and disorder related to menstruation, or gynaecological conditions, was often described as being dismissed by staff or being viewed as beyond the responsibility of mental health services. This study highlighted the urgency for actions to be taken to provide greater support for patients who menstruate in psychiatric inpatient settings. [ABSTRACT FROM AUTHOR]

AbstractAimMethodResultsConclusion\nIMPLICATIONS FOR REHABILITATIONThis qualitative study explored the experiences of patients, caregivers and healthcare professionals after replacing hospital consultations with a home service solution for patients treated for severe spasticity with intrathecal baclofen.Semi-structured interviews were conducted with six patients, six caregivers and six healthcare professionals. The data were analysed using interpretative phenomenological analysis.Four themes were identified: 1) Caregivers’ new role and contribution to treatment, 2) Hospital consultations in home settings changed the balance of power, 3) A compassionate relationship, and 4) Contextual care for patients.The home-based consultations improved caregivers’ understanding of the treatment and helped them to become active spokespersons for the patient by contributing important information about the patient’s perspectives and the effects of the treatment. The balance of power shifted towards a more equitable dynamic between patients and nurses during home consultations, facilitated by greater involvement of the patient perspective. The nurses’ working conditions changed, but patients and caregivers appreciated the shift in treatment setting.Collaboration between nurses and caregivers is important to maintain optimal treatment as caregivers are often spokespersons for the patient and can explain patients’ preferences for treatmentHome-based treatment clarifies more of the patient’s everyday life, which can then be better incorporated into the nurses’ decisions and perspectivesHome-based treatment changes the balance of power between patients, caregivers, and nursesWhen hospital nurse consultations is replaced with consultations at home, there are both practical and organisational implications for nurses’ working conditionsCollaboration between nurses and caregivers is important to maintain optimal treatment as caregivers are often spokespersons for the patient and can explain patients’ preferences for treatmentHome-based treatment clarifies more of the patient’s everyday life, which can then be better incorporated into the nurses’ decisions and perspectivesHome-based treatment changes the balance of power between patients, caregivers, and nursesWhen hospital nurse consultations is replaced with consultations at home, there are both practical and organisational implications for nurses’ working conditions [ABSTRACT FROM AUTHOR]