Position paper on advancing sickle cell disease management in France by bridging the clinical practices and guidelines through expert insights.

In France, sickle cell disease (SCD) is the most common rare disease and represents the most prevalent genetic disorder, with 19,800 to 32,400 patients diagnosed in 2016 and 1:714 newborns affected in 2019. SCD is caused by a single mutation in the ß-globin gene, resulting in the production of abnormal hemoglobin (called HbS), chronic hemolytic anemia, and impaired red blood cell rheology. SCD patients face several severe acute and chronic complications, including stroke, acute chest syndrome (ACS), painful vaso-occlusive crisis (VOC), organ failure, and a high risk of infections. As patients' care pathway remains unclear in France, a roundtable advisory board meeting was organized in the country to provide insights into the management of SCD in alignment with clinical guidelines. The meeting brought together a panel of esteemed key opinion leaders (KOLs) in SCD management, encompassing both clinical practice and research. During the meeting, the KOLs discussed clinical practices and their alignment with French guidelines, identifying areas of concordance and discrepancy. They also addressed disparities in SCD clinical practices across regions and medical centers. The KOLs discussed the prophylactic and therapeutic options currently available for SCD patients in France, with a focus on transfusion therapies, especially automated red blood cell exchange (aRBCX). The results of this advisory board meeting provide a valuable platform for gathering expert perspectives on SCD management, clinical practices, guideline alignment, and the potential for contributions to guideline updates.

Management and outcomes among patients with hard-to-heal ulcers in Sweden: a national mapping of data from medical records, focusing on diagnoses, ulcer healing, ulcer treatment time, pain and prescription of analgesics and antibiotics.

OBJECTIVE: To investigate whether patients with hard-to-heal ulcers in Sweden were treated according to an aetiological diagnosis and to explore ulcer healing, treatment time, ulcer-related pain and the prescription of analgesics and antibiotics. DESIGN: A national mapping of data from the patients' medical records, between April 2021 and March 2023. SETTING: Data from medical records for patients with hard-to-heal ulcers from a randomised clustered sample of two units per level of care and region. PARTICIPANTS: Patients with hard-to-heal ulcers treated in primary, community and specialist care, public or private, within units covering all 21 regions in Sweden. OUTCOME MEASURES: Descriptive analysis of data from the patients' medical records. RESULTS: A total of 2470 patients from 168 units were included, of which 39% were treated in primary care, 24% in community care and 37% in specialist care. A total of 49% of patients were treated without an aetiological diagnosis. Healing occurred in 37% of patients and ulcer-related pain was experienced by 1224 patients (50%). Antibiotics were given to 56% of the patients. Amputation occurred in 5% and 11% were deceased. CONCLUSION: Only 51% of patients with hard-to-heal ulcers had a documented aetiological ulcer diagnosis, which means that approximately 20 000 patients in Sweden might receive suboptimal treatment. Future research needs to explore why so many patients are undiagnosed and how to improve diagnosis, which could lead to faster healing and shorter treatment times.

Patient Input into the Electronic Health Record: Co-Designing Solutions with Patients and Healthcare Professionals.

Patient-generated health data (PGHD) is the person's health-related data collected outside the clinical environment. Integrating this data into the electronic health record (EHR) supports better patient-provider communication and shared decision-making, empowering patients to actively manage their health conditions. In this study, we investigated the essential features needed for patients and healthcare providers to effectively integrate PGHD functionality into the EHR system. Through our collaborative design approach involving healthcare professionals (HCPs) and patients, we developed a prototype and suggestion, using Estonia as a model, which is the ideal approach for collecting and integrating PGHD into the EHR.

Toward a Patient-Centered Care Supporting System: Integration of Multidisciplinary Health Records in Breast Cancer Care.

An important paradigm shift within healthcare is the shift toward patient-centered care (PCC). Multidisciplinary team meetings (MDTM) are considered essential for PCC, despite being considered time-consuming and expensive. Patient-centered information (PCI) is known to improve the quality of care. This study investigated where and how the PCI of multidisciplinary professionals' health records exists, and to explore the possibility of a sustainable PCC-supporting healthcare system. We performed an exploratory pilot study of the patient records of three patients with breast cancer. We observed that PCI was documented throughout the care pathway in the cases examined. However, we also found that these data were fragmented and scattered across various medical records, and they were also from different point of views and patient care perspectives. PCI was founded to be less accessible than traditional medical records and was even hard to find using a manual search. We therefore propose that preparing PCI for MDTM may be one of the obvious burdens for healthcare professionals (HPs). We do however believe that integrating PCI from multiple professionals' records likely plays an important function in a shift towards PCC and serves to improve not only the quality of care but also the HPs' experiences without additional burden and could contribute to a more sustainable health care system.

Tell Me More® As A Tool for Provider Connectedness With Hospitalized Patients: A Mixed-Methods Study.

Rates of burnout and compassion fatigue in healthcare professionals have remained high since the beginning of the pandemic with adverse implications for patient care. Tell Me More® (TMM) is a tool licensed by the Gold Foundation, which was created with the purpose of helping patients, caregivers, and hospital staff to connect with each other on a humanistic level. Research has shown the benefits of the TMM with students and anecdotally with patients. This mixed-method study, which consisted of surveys and semistructured interviews with healthcare professionals (n = 72), sought out to understand the impact of implementation of TMM on a hospital floor. Surveys were distributed before and after the occurrence of TMM with interviews only occurring afterward. Three out of 8 survey items were found to be significant. Content analysis from interviews generated 4 themes from participants which included "Connectedness to Patient," "Separation of Person and Illness," "Communication with Patient's Support Network," and "Connectedness with Non-Verbal Patients." TMM is a useful tool for strengthening provider-patient relationships in hospital settings and may therefore lessen compassion fatigue and burnout.

PEER CONNECT: a pragmatic feasibility randomised controlled trial of peer coaching for adults with long-term conditions.

OBJECTIVE: To test the feasibility of a targeted peer coaching intervention on the health and well-being of people with long-term health conditions and low activation attending outpatient clinics at a UK National Health Service (NHS) Trust. DESIGN: Randomised controlled feasibility trial, with embedded qualitative study. SETTING: An NHS integrated health and care organisation in the South West of England, UK, with significant areas of deprivation. PARTICIPANTS: Patients (over 18 year of age) of the Trust's rheumatology, pain or multiple sclerosis services, with a Patient Activation Measure score at level 1 or 2. INTERVENTION: Up to 14 sessions of peer coaching delivered in a stepped-down model delivered over 6 months. MAIN OUTCOMES: Primary feasibility outcomes were recruitment, retention, intervention adherence and peer, coach and staff experience.Secondary outcomes included psychological well-being, resource use, long-term condition management and disease-specific measures. RESULTS: 97 potential coaches were contacted directly. 27 (27.8%) were screened and of those 21 (77.8%) were eligible and recruited into the study. For a range of reasons, only five (23.8%) progressed through training and on to deliver peer coaching. 747 potential peers were invited to take part and 19 (2.5%) were screened. Of those screened, seven (36.8%) were eligible, recruited and randomised, all white females with median age of 50 years (range: 24-82 years). One peer in the intervention group withdrew prior to receiving the intervention, the remaining four received coaching. Peers and coaches reported a range of benefits related to their health and well-being. CONCLUSION: Coach recruitment, training and study procedures were feasible and acceptable. Due to low peer recruitment numbers, it was decided not to progress to a definitive trial. Further research is required to explore how to engage with and recruit people reporting low levels of activation and the acceptability and effectiveness of peer coaching for this group. TRIAL REGISTRATION NUMBER: ISRCTN12623577.

Patients' preferences, experiences and expectations with wait time until surgery in gynaecological oncology: a mixed-methods study in two gynaecological oncological centres in the Netherlands.

OBJECTIVES: Patient-centredness of care during wait time before surgery can be improved. In this study we aimed to assess (1) patients' experiences with and preferences regarding wait time before surgery; (2) the impact of wait time on quality of life (QoL) and (3) which factors influence patients' wait time experience. DESIGN, SETTING, PARTICIPANTS: We performed an exploratory sequential mixed-methods study among women with gynaecological cancer in two tertiary hospitals. We conducted semistructured interviews and identified aspects of QoL and factors that influenced wait time acceptability through thematic analysis. We developed a questionnaire from this thematic analysis which was completed by 97 women. Descriptive statistics and univariate and multivariate regression analyses were performed. RESULTS: Average ideal wait time was 3.5 weeks (±1.7 weeks), minimum and maximum acceptable wait times were 2.2 and 5.6 weeks. Many patients scored above the threshold of the Hospital Anxiety and Depression Scale for anxiety (48%) or depression (34%), had sleeping problems (56%) or experienced pain (54%). A number of factors were more common in patients who indicated that their wait time had been too long: low education level (OR 7.4, 95% CI 0.5 to 5.0, p=0.007), time to surgery >4 weeks (OR 7.0, 95% CI 0.8 to 4.4, p=0.002) and experienced sleep disturbance (OR 3.27, 95% CI 0.0 to 3.1, p=0.05). If patients expectation of wait time was >4 weeks (OR 0.20, 95% CI -4.0 to -0.5 p=0008) or if patients experienced pain (OR 0.26, 95% CI -3.6 to -0.3, p=0.03), they less frequently indicated that wait time had been too long. CONCLUSION: To improve patient-centredness of care, healthcare providers should aim to reduce wait time to 3-4 weeks and ensure that patients are well informed about the length of wait time and are aware of high levels of anxiety, depression and pain during this time. Future studies should evaluate what interventions can improve QoL during wait time.

Development and psychometric validation of a patient safety assessment tool in German Radiation Oncology: the PaSaGeRO Study protocol.

INTRODUCTION: Ensuring patient safety in radiation oncology is crucial for delivering high-quality healthcare. Patient safety indicators (PSIs) provide a mechanism for identifying, quantifying and evaluating risks and the effectiveness of safety measures. However, there is currently no specialised set of PSIs tailored for radiation oncology in Germany. This study seeks to: (1) create PSIs specifically designed for radiation oncology settings, (2) develop and psychometrically validate an instrument for assessing safety in German radiation oncology facilities and (3) evaluate the feasibility of implementing this instrument in routine clinical practice. The finalised questionnaire will serve as a self-assessment instrument for radiation oncology departments, aiding them in evaluating their efficacy in ensuring patient safety, prioritising safety interventions and tracking performance over time. METHODS AND ANALYSIS: We are undertaking a 3-year, mixed methods study to address our objectives. For the identification of PSIs, we will conduct a comprehensive review on the PubMed database, along with reviewing national and international guidelines and recommendations. To refine the initial set of indicators, we will consult with experts, including physicians, medical physicists, nurses, administrators and radiation therapists through focus groups. We will employ a Delphi study for the final consensus and selection of indicators. Additionally, the perspectives of patients will be incorporated by formation of a project patient's committee which meets throughout the project phases. We will reformulate the identified PSIs into questionnaire items. The questionnaire's clarity and comprehensibility will be validated through cognitive interviews, followed by psychometric testing in a pilot group of over 150 participants from German radiation oncology departments. The final version of the questionnaire will then be implemented in routine healthcare settings and we will interview individual users about their experiences with the questionnaire in semistructured interviews. We will convene a subsequent expert workshop to discuss the study results and explore avenues for the questionnaire's broader implementation. The finalised questionnaire will be made accessible via a web app. We hereby present the study potocol as a pre-results report. ETHICS AND DISSEMINATION: Ethical approval for this study was granted by the Hamburg Ethics Committee (Approval Number: 2023-101018-BO-ff). This trial is registered by the ARO (Arbeitsgemeinschaft Radioonkologie /working group for radiation oncology of the German Cancer Society), protocol number 2023-03 and in the German register for clinical trials with the number DRKS00034690. Study results will be published in conference papers and talks as well as journal papers with focus on open access journals. The results will be also disseminated during the implementation workshop in phase III, which will involve a diverse group of stakeholders. TRIAL REGISTRATION NUMBER: DRKS00034690.

Acceptability and Appropriateness of Patientcentered, Family-focused, Community-oriented (PFC) Lens in the Ortho-Geriatric Fracture Liaison Service among Family and Community Medicine Trainees.

Background: In Family and Community Medicine (FCM) residency training, the biopsychosocial approach to care was translated to a teaching strategy and cognitive framework called patient-centered, family-focused, and community-oriented (PFC) lens. However, the PFC lens documented in a matrix has no evidence of its implementation acceptability and appropriateness for the users in the FCM training program. Objective: To determine the acceptability and appropriateness of the integration of the PFC lens in the Ortho-Geriatrics Fracture Liaison Service (OG-FLS) in applying the family medicine principles and achieving family practice required competencies of the residents in a tertiary hospital FCM training program. Methods: A cross-sectional survey was conducted using a 15-item self-administered pre-tested online questionnaire to gather feedback and experiences on the PFC lens integration. Answers to open-ended questions were coded and analyzed with MaxQDA and synthesized into themes while numerical rating scales were analyzed with Microsoft Excel into means and standard deviation. Results: Nineteen residents answered the questionnaire. There were 47 OG-FLS patients referred to the service. Overall, the acceptability of the approach among FCM residents had an average score of 9.26 (SD ± 0.99) while appropriateness was rated 9.26 (SD ± 1.09) with 10 points as the highest score. The competencies achieved reported by residents were communicating effectively, collaborating with interprofessional teams, demonstrating clinical competence, and practice of biopsychosocial approach. Conclusion: The PFC lens integration in OG-FLS is acceptable and appropriate in the practice of multidisciplinary care in the in-patient setting among FCM residents. Its integration is aligned with the expected competencies of a family physician that trainees can apply in future practice.

Identifying the drivers of overall rating of cancer care: Insights from the second wave of the Swiss Cancer Patient Experiences study.

BACKGROUND: Patient experience surveys gather information on various aspects of care via numerous survey items. Identifying the most critical areas of patient experience to prioritize for quality care improvement can be challenging. The objective of this study was to determine which care experience items are the drivers influencing patients' overall rating of cancer care. METHODS: Data from 2750 adult patients with cancer from the second wave of the Swiss Cancer Patient Experiences study were analyzed. This cross-sectional survey was conducted in eight Swiss hospitals from September 2021 to February 2022. Stepwise logistic regression examined the relationship between overall care rating and 29 patient experience items covering different patient-centered care dimensions while adjusting for sociodemographic and health variables. RESULTS: Overall, patients rated their cancer care experience at 8.9 out of 10. Stepwise regression identified seven drivers contributing to overall care rating. The strongest drivers were "professionals worked well together" (odds ratio [OR], 4.81) and "tests were not repeated" (OR, 2.09) from the coordination and integration dimension, "offered support for symptoms during treatment" (OR, 2.11) from the physical comfort dimension, followed by "hospital staff ensured available home support" (OR, 1.99), "offered to see health professional for concerns" (OR, 1.91), "treatment options were explained" (OR, 1.75), and "involved in treatment decisions as desired" (OR, 1.68). CONCLUSIONS: This study evaluated the care experiences of patients with cancer with a comprehensive tool that identified seven key factors independently associated with overall care rating. By concentrating on these areas, hospitals can not only improve the patient care experience but also efficiently allocate resources to quality improvement initiatives.

Differential Impact of Virtual Family-Centered Rounds in the Neonatal Intensive Care Unit by Social Factors: A Post Hoc Subgroup Analysis.

Background: Barriers to attending family-centered rounds (FCR) exist for socially disadvantaged families. Using telehealth to conduct virtual FCR could potentially promote equitable parent/guardian FCR access. The objective of this work was to assess whether the effects of a virtual FCR intervention on parent FCR attendance varied by subgroups defined by social factors. Methods: We conducted a post hoc analysis of a randomized controlled trial of virtual FCR in the neonatal intensive care unit. Parents of intervention arm infants were invited to participate in virtual FCR plus usual care; control arm infants received usual care. Participants were analyzed according to the assigned group and by race/ethnicity, insurance, mother's education, and neighborhood health conditions. We used Poisson regression to estimate and compare FCR parent attendance rates. Heterogeneity of intervention effects was assessed using interaction terms to evaluate the relative benefit of the intervention in increasing parent FCR attendance. Results: We included all enrolled trial subjects (74 intervention, 36 control). Intervention arm infants had 3.36 (95% confidence interval [CI]: 2.66-4.23) times the FCR parent attendance rate of subjects in the control arm. Compared with the corresponding reference subgroup, intervention benefits were 2.15 times (95% CI: 1.30-3.56) better for racial/ethnic minorities, 3.08 times (95% CI: 1.59-5.95) better for those with private insurance, 2.68 times (95% CI: 1.12-6.40) better for those whose mother reported no college education, and 4.14 times (95% CI: 2.07-8.25) better for those from a neighborhood with worse health conditions. Conclusions: Virtual FCR improved parent FCR attendance overall, with even greater benefits for certain subgroups. Further research is needed to mitigate the differential benefit demonstrated for privately insured subjects.

Patient Empowerment for Those Living with Parkinson's Disease.

Parkinson's disease (PD) poses a number of challenges for individuals, affecting them physically, mentally, emotionally, and socially. The complex nature of PD necessitates empowering patients to address their unique needs and challenges, fostering improved health outcomes and a better quality of life. Patient empowerment is a multifaceted concept crucial to enhancing healthcare outcomes, particularly in chronic conditions such as PD. However, defining patient empowerment presents challenges due to its varied interpretations across disciplines and individuals. Essential components include access to information, development of self-care skills, and fostering a supportive environment. Strategies for patient empowerment encompass health literacy, education, and shared decision-making within a trusted healthcare provider-patient relationship. In PD, patient empowerment is crucial due to the disease's phenotypic variability and subjective impact on quality of life. Patients must navigate individualized treatment plans and advocate for their needs, given the absence of objective markers of disease progression. Empowerment facilitates shared decision-making and enables patients to communicate their unique experiences and management goals effectively. This paper provides a comprehensive overview of the dimensions and strategies associated with patient empowerment, its definition and the facilitators that are necessary, emphasizing its critical importance and relevance in Parkinson's management. At the end of this review is a personal perspective as one of the authors is a person with lived experience.

Expectations and needs of people with illicit substance use disorders in general practice: a qualitative study in Belgium.

BACKGROUND: People who use illicit drugs cumulate medical and psychosocial vulnerabilities, justifying a rounded health approach. Both caregivers and patients can form barriers to accessing care, leading to inadequate care. This study aimed to identify the needs and expectations of such patients in general practice. METHODS: Qualitative research was conducted using semi-structured interviews with 23 people with illicit substance use disorder in Brussels in 2020. Multicentric recruitment was conducted to obtain a heterogeneous mix of sociodemographic profiles and care trajectories. Thematic analysis was performed using RQDA package software. RESULTS: Participants highlighted several vulnerabilities. These include the presence of significant self-stigmatization and guilt, sometimes to the extent of self-dehumanization, even after years of care, and overdoses masking suicide attempts and early memory disorders. Multiple substance use, smoking in almost all participants, and misuse of benzodiazepines were also noted. The majority of participants expressed the need for an open-minded, non-stigmatizing and empathic GP with a holistic approach that could guide them throughout their life course. The competencies of the GPs in the field of addiction seemed secondary to the participants. Knowledge and good collaboration with the mental health network were assets. CONCLUSION: Participants expressed the need for GPs with good interpersonal skills, including a non-stigmatizing attitude. The care coordinator role of the GP was highlighted as a key element, as it was a holistic approach focusing on global health (including the social determinants of health) and not only on substance use disorders.

Parent decisional regret regarding neonatal circumcision in an American outpatient pediatric urology clinic.

INTRODUCTION/BACKGROUND: Requests for circumcision revision are common in our American pediatric urology clinic. As parents are the surrogate decision maker for their child, there are several influences that can impact a parent's decision for or against circumcision. OBJECTIVE: We sought to assess parents' regret regarding their child's circumcision status and to correlate regret to factors that might have affected the original decision. STUDY DESIGN: From March 2023 to January 2024, we surveyed parents who brought their male child to our office for any reason, independent of circumcision status. The questionnaire was two-fold: a validated Decisional Regret Scale (DRS) (0-100 where higher scores = higher regret) and our questions regarding their decision-making process and outcome. Regret scores served as a function of each of the independent decision making and outcome variables. RESULTS: Overall, decisional regret scores from both uncircumcised and circumcised parent groups were positively skewed with a median 0, mean 22, and ranged from 0 to 75. For those circumcised (n = 91), the median regret score was 0 (IQR 0-25). For those uncircumcised (n = 28), median regret score was 0 (IQR 0-24). Overall, 55% of both groups reported no regret (DRS = 0), 24% had low-mild regret (DRS 5-25), and 21% yielded moderate-strong regret (DRS 30-100). Parents who felt they made an informed decision or were counseled by any physician had lower regret scores. Parents who presented for issues related to their child's uncircumcised or circumcised penis (DRS score 37.5 and 25 respectively) had higher regret scores. DISCUSSION: We found that a large portion of parents expressed no regret regarding their decision to have or not have their child circumcised (55%). There also was no difference in median regret scores between parent groups. However, a significant portion of parents did express moderate-strong regret (21%) and several influential factors were correlated with regret scores. These factors included informed decision making, physician counseling, appearance satisfaction, and problems related to their child's circumcised or uncircumcised penis. These factors are supported by other literature using the DRS and population studies. The limitations of our study included the limited recruitment of participants and potential time dependent bias of responses. CONCLUSION: One in five parents of both circumcised and uncircumcised boys expressed moderate to strong regret regarding their decision about neonatal circumcision in our pediatric urology clinic. Our data suggests that ensuring parents have sufficient counseling prior to a decision regarding neonatal circumcision is important.

Exploring the Significance of Nurse Introduction for Positive Patient Experience in Saudi Arabia.

Empathy plays an important role in nursing so that the patients are provided with quality care and are satisfied with the services provided. Saudi Arabian patient interactions, including initial exploring, tend not to be formulaically initiated as in other countries. In this current study, the researcher aimed to highlight the critical role of nurse introductions in creating a desirable patient experience in the inpatient centers of Ministry Of Health hospitals in Saudi Arabia. This study was a cross-sectional secondary data analysis using the National Health Links/Presses Ganey surveys for every quint between the period 2021 and 2022. The methodology comprised an in-depth analysis of the Patient Experience Management Program (PXMP) survey that was involved as the uniform survey concluded by the Health Links/PressGaney. During the analysis, however, the results were found to have significant differences as 71.3% of the patients had a very good impression of their overall patient experience. This was specifically designed to address specific issues such as personal characteristics. The results of this study contribute to the understanding of what drives the nurses-patient interactions and forge the need for enhancing the way nurses are introduced to their patients to increase the average level of satisfaction of patients in the Ministry Of Health hospitals in Saudi Arabia. This study recommends that Saudi nurses should be trained to establish rapport in their interactions with patients as this promotes patient-centeredness and subsequently patients' experiences and care outcomes.

Patient satisfaction and digital health in primary health care: a scoping review protocol.

Introduction: Using digital health in primary health care (PHC) contributes to reducing costs and travel time, achieving global development goals, improving access, quality and longitudinality of care, and managing health crises. Its evaluation must go beyond the technical-operational aspects to include patient satisfaction, a key element in assessing the quality of care. Objective: To identify and map patient satisfaction (expectations, desires, cultural values) about the adoption of digital health strategies and assess their impact on the quality of care in PHC. Methods: The review will follow the recommendations proposed by the Joanna's Briggs Institute (JBI) manual, the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Extension for Scoping Reviews (PRISMA-ScR) and the methodology proposed by Arksey and O'Malley and Levac et al. and will be conducted in nine stages. The search will be conducted in health studies databases (MEDLINE via PubMed, EMBASE, CINAHL, Web of Science, and BVS), gray literature, and preprint repositories (Google Scholar and MedRxiv). Two reviewers will select the studies, and the third will analyze possible conflicts. The inclusion criteria comprise studies that have been made available in their entirety, whether they are primary studies or short communications, as well as the following materials extracted from the gray literature: preprints, manuals, government documents, books, guidelines, theses and dissertations. Exclusion criteria include literature reviews, abstracts, books, conference archives, letters to the editor, duplicates and opinion articles. Data will be analyzed by content analysis and inferential statistics. This protocol is registered on the Open Science Framework (OSF) under DOI 10.17605/OSF.IO/PUJDB. Results: The study aims to understand aspects related to the expectations, desires, and cultural values of patients from different countries, as well as the strengths and critical nodes of the use of digital health on the quality of care in PHC.

Promoting patient-centered care in CAR-T therapy for hematologic malignancy: a qualitative meta-synthesis.

BACKGROUND: CAR-T therapy has emerged as a potentially effective treatment for individuals diagnosed with hematologic malignancies. Understanding patients' unique experiences with this therapeutic approach is essential. This knowledge will enable the development of tailored nursing interventions that align with the increasing importance of patient-centered care. OBJECTIVE: To examine and synthesize qualitative data on patients and their family caregivers' experiences during the treatment journey. DESIGN: We conducted a systematic review and qualitative meta-synthesis. Eligible studies contained adult patient or family caregiver quotes about experiences of CAR-T therapy, published in English or Chinese in a peer-reviewed journal since 2015. Data sources included MEDLINE, CINAHL, Embase, PsycINFO, Web of Science, Scopus, Cochrane Library, CNKI, and WanFang. METHODS: Systematic search yielded 6373 identified articles. Of these, 12 reports were included in the analysis, which covered 11 separate studies. Two reviewers independently extracted data into NVIVO 12.0. Qualitative meta-synthesis was performed through line-by-line coding of full text, organization of codes into descriptive themes, and development themes. RESULTS: The qualitative meta-synthesis yielded eight primary themes. Noteworthy revelations from patients and their family caregivers regarding the CAR-T therapy journey encompassed various aspects. Prior to CAR-T therapy, patients experienced a lack of actual choice, struggled with expectations for treatment outcomes, and encountered intricate emotional experiences. During or immediately after CAR-T therapy, patients reported both comfortable and uncomfortable experiences. Additionally, patients emphasized that concerns regarding treatment efficacy and adverse reactions intensified treatment-related distress. After CAR-T therapy, significant changes were observed, and the burden of home-based rehabilitation. Additionally, we found factors contributed to the high CAR-T therapy cost. CONCLUSIONS: To ensure the safety and sustainability of CAR-T therapy, it is crucial to address the physical and psychological aspects of the patient's experience. Effective communication and comprehensive management are highly valued by patients and their caregivers. Further research should investigate ways to reduce burdens and develop self-management education programs for patients and their families.

Glucofriendly couscous usage in diabetes.

Couscous, a staple food of Northern Africa and the Middle East, is consumed across the world. Being carbohydrate - rich, it is often forbidden to persons with diabetes. Its social and cultural connotations, however, do not allow absolute avoidance of this dish in real life. This brief article explores various ways of preparing, serving and eating couscous, in a glucofriendly manner. The authors summarize available literature, and suggest culinary tips to reduce glycaemic index and glycaemic load of this foodstuff.

Impact of the diagnostic label for a low-risk prostate lesion: protocol for two online factorial randomised experiments.

INTRODUCTION: Many types of prostate cancer present minimal risk to a man's lifespan or well-being, but existing terminology makes it difficult for men to distinguish these from high-risk prostate cancers. This study aims to explore whether using an alternative label for low-risk prostate cancer influences management choice and anxiety levels among Australian men and their partners. METHODS AND ANALYSIS: We will run two separate studies for Australian men and Australian women with a male partner. Both studies are between-subjects factorial (3×2) randomised online hypothetical experiments. Following consent, eligible participants will be randomised 1:1:1 to three labels: 'low-risk prostate cancer, Gleason Group 1', 'low-risk prostate neoplasm' or 'low-risk prostate lesion'. Participants will then undergo a second randomisation step with 1:1 allocation to the provision of detailed information on the benefits and harms of different management choices versus the provision of less detailed information about management choices. The required sample sizes are 1290 men and 1410 women. The primary outcome is the participant choice of their preferred management strategy: no immediate treatment (prostate-specific antigen (PSA)-based monitoring or active surveillance using PSA, MRI, biopsy with delayed treatment for disease progression) versus immediate treatment (prostatectomy or radiation therapy). Secondary outcomes include preferred management choice (from the four options listed above), diagnosis anxiety, management choice anxiety and management choice at a later time point (for participants who initially choose a monitoring strategy). ETHICS AND DISSEMINATION: Ethics approval has been received from The University of Sydney Human Research Ethics Committee (2023/572). The results of the study will be published in a peer-reviewed medical journal and a plain language summary of the findings will be shared on the Wiser Healthcare publications page http://www.wiserhealthcare.org.au/category/publications/ TRIAL REGISTRATION NUMBERS: Australian New Zealand Clinical Trials Registry (ID 386701 and 386889).

Comprehensive dental care in patient with Rubinstein-Taybi syndrome: A 3-year case study using progressive desensitization techniques and oral sedation.

AIM: This case study delineates a minimally invasive and effective approach for the aesthetic and functional restoration of teeth in a patient with Rubinstein-Taybi syndrome (RTS), focusing on the challenges and strategies tailored to their specific dental care needs. METHODS AND RESULTS: A 20-year-old patient diagnosed with RTS presented at the Pediatric Dentistry Department for a comprehensive dental assessment and care. The individual's genetic condition manifested in unique dental and craniofacial anomalies, complicating standard dental procedures. Following an initial consultation that underscored limited cooperation due to intellectual disabilities, a customized treatment plan was developed. This included behavior modification techniques to acclimate the patient to dental settings and procedures. Utilizing "simplified technologies" such as volumetric polymerization composites and self-etching primer and adhesive systems, tooth 36 was successfully treated. The approach showcased the potential for dental care in RTS patients with minimal sedation, prioritizing patient comfort and cooperation. CONCLUSION: The successful dental treatment of the RTS patient highlights the importance of patient-centered, minimally invasive approaches in managing individuals with special healthcare needs. Emphasizing continuity of care and prioritizing restorative treatments facilitated significant improvements in oral health and patient cooperation. This case contributes to the sparse literature on dental care for RTS patients, advocating for specialized strategies to address their comprehensive oral health needs. The findings underscore the necessity for interdisciplinary collaboration and innovative care protocols to ensure effective and empathetic dental treatment for individuals with RTS.