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Background: Medical text, as part of an electronic health record, is an essential information source in healthcare. Although natural language processing (NLP) techniques for medical text are developing fast, successful transfer into clinical practice has been rare. Especially the hospital domain offers great potential while facing several challenges including many documents per patient, multiple departments and complex interrelated processes. Methods: In this work, we survey relevant literature to identify and classify approaches which exploit NLP in the clinical context. Our contribution involves a systematic mapping of related research onto a prototypical patient journey in the hospital, along which medical documents are created, processed and consumed by hospital staff and patients themselves. Specifically, we reviewed which dataset types, dataset languages, model architectures and tasks are researched in current clinical NLP research. Additionally, we extract and analyze major obstacles during development and implementation. We discuss options to address them and argue for a focus on bias mitigation and model explainability. Results: While a patient's hospital journey produces a significant amount of structured and unstructured documents, certain steps and documents receive more research attention than others. Diagnosis, Admission and Discharge are clinical patient steps that are researched often across the surveyed paper. In contrast, our findings reveal significant under-researched areas such as Treatment, Billing, After Care, and Smart Home. Leveraging NLP in these stages can greatly enhance clinical decision-making and patient outcomes. Additionally, clinical NLP models are mostly based on radiology reports, discharge letters and admission notes, even though we have shown that many other documents are produced throughout the patient journey. There is a significant opportunity in analyzing a wider range of medical documents produced throughout the patient journey to improve the applicability and impact of NLP in healthcare. Conclusions: Our findings suggest that there is a significant opportunity to leverage NLP approaches to advance clinical decision-making systems, as there remains a considerable understudied potential for the analysis of patient journey data. [ABSTRACT FROM AUTHOR]

Background: Lipodystrophy syndromes are a heterogeneous group of rare, life-limiting diseases characterized by a selective loss of adipose tissue and severe metabolic complications. There is a paucity of information describing the experiences and challenges faced by physicians who have seen and treated patients with lipodystrophy. This study aimed to provide a better understanding of the physician's perspective regarding the patient journey in lipodystrophy, including diagnosis, the burden of disease, and treatment approaches. Methods: Thirty-three physicians from six countries who had seen or treated patients with lipodystrophy were interviewed using a semi-structured questionnaire. Interviews were transcribed, anonymized, and analyzed for themes and trends. Four main themes were developed: (1) the diagnostic journey in lipodystrophy including the disease features or 'triggers' that result in the onward referral of patients to specialist medical centers with experience in managing lipodystrophy; (2) the impact of lipodystrophy on patient quality of life (QoL); (3) the use of standard therapies and leptin replacement therapy (metreleptin) in lipodystrophy, and (4) barriers to metreleptin use. Results: Participants reported that, due to their rarity and phenotypic heterogeneity, lipodystrophy cases are frequently unrecognized, leading to delays in diagnosis and medical intervention. Early consultation with multidisciplinary specialist medical teams was recommended for suspected lipodystrophy cases. The development and progression of metabolic complications were identified as key triggers for the referral of patients to specialist centers for follow-up care. Participants emphasized the impact of lipodystrophy on patient QoL, including effects on mental health and self-image. Although participants routinely used standard medical therapies to treat specific metabolic complications associated with lipodystrophy, it was acknowledged that metreleptin was typically required in patients with congenital generalized lipodystrophy and in some acquired generalized and partial lipodystrophy cases. A lack of experience among some participants and restrictions to access remained as barriers to metreleptin use. Conclusions: To our knowledge, this is one of the first studies describing the qualitative experiences of physicians regarding the diagnosis and management of lipodystrophy. Other physician-centered studies may help increase the awareness of lipodystrophy among the wider medical community and support clinical approaches to this rare disease. [ABSTRACT FROM AUTHOR]

Abstract This exploratory qualitative study aims to gain a people-centered understanding of the patient journey in axial spondyloarthritis (axSpA). Semi-structured interviews were conducted with 15 individuals diagnosed with axSpA, aged 18 years and older, who were purposively recruited from a rheumatologic practice in southern Germany. The interviews were carried out as web-based video calls between September and October 2021, audio-recorded, transcribed verbatim, and analyzed according to Kuckartz’s qualitative content analysis. Patient journey narratives encompassed both healthcare journeys and personal journeys. Healthcare journeys were characterized as fragmented and difficult to navigate, with diagnosis often marking a turning point toward more coordinated care. Post-diagnosis, new challenges emerged (e.g., time management for treatment). Personal journeys comprised perceptions of axSpA in social contexts (e.g., stigmatization) and the continuous interplay of comorbidities and biographical events with healthcare related to axSpA. This study proposes a people-centered perspective on the patient journey in axSpA, emphasizing the interplay of biographies, comorbidities, and social context with healthcare events. Recognizing these personal factors in clinical practice is encouraged to address complex health needs and tailor treatment to each individual. Further efforts should promote collaboration between medical disciplines and integrate healthcare and social support at all stages of the axSpA patient journey.

Abstract Background Medical text, as part of an electronic health record, is an essential information source in healthcare. Although natural language processing (NLP) techniques for medical text are developing fast, successful transfer into clinical practice has been rare. Especially the hospital domain offers great potential while facing several challenges including many documents per patient, multiple departments and complex interrelated processes. Methods In this work, we survey relevant literature to identify and classify approaches which exploit NLP in the clinical context. Our contribution involves a systematic mapping of related research onto a prototypical patient journey in the hospital, along which medical documents are created, processed and consumed by hospital staff and patients themselves. Specifically, we reviewed which dataset types, dataset languages, model architectures and tasks are researched in current clinical NLP research. Additionally, we extract and analyze major obstacles during development and implementation. We discuss options to address them and argue for a focus on bias mitigation and model explainability. Results While a patient’s hospital journey produces a significant amount of structured and unstructured documents, certain steps and documents receive more research attention than others. Diagnosis, Admission and Discharge are clinical patient steps that are researched often across the surveyed paper. In contrast, our findings reveal significant under-researched areas such as Treatment, Billing, After Care, and Smart Home. Leveraging NLP in these stages can greatly enhance clinical decision-making and patient outcomes. Additionally, clinical NLP models are mostly based on radiology reports, discharge letters and admission notes, even though we have shown that many other documents are produced throughout the patient journey. There is a significant opportunity in analyzing a wider range of medical documents produced throughout the patient journey to improve the applicability and impact of NLP in healthcare. Conclusions Our findings suggest that there is a significant opportunity to leverage NLP approaches to advance clinical decision-making systems, as there remains a considerable understudied potential for the analysis of patient journey data.

Abstract Background Lipodystrophy syndromes are a heterogeneous group of rare, life-limiting diseases characterized by a selective loss of adipose tissue and severe metabolic complications. There is a paucity of information describing the experiences and challenges faced by physicians who have seen and treated patients with lipodystrophy. This study aimed to provide a better understanding of the physician’s perspective regarding the patient journey in lipodystrophy, including diagnosis, the burden of disease, and treatment approaches. Methods Thirty-three physicians from six countries who had seen or treated patients with lipodystrophy were interviewed using a semi-structured questionnaire. Interviews were transcribed, anonymized, and analyzed for themes and trends. Four main themes were developed: (1) the diagnostic journey in lipodystrophy including the disease features or ‘triggers’ that result in the onward referral of patients to specialist medical centers with experience in managing lipodystrophy; (2) the impact of lipodystrophy on patient quality of life (QoL); (3) the use of standard therapies and leptin replacement therapy (metreleptin) in lipodystrophy, and (4) barriers to metreleptin use. Results Participants reported that, due to their rarity and phenotypic heterogeneity, lipodystrophy cases are frequently unrecognized, leading to delays in diagnosis and medical intervention. Early consultation with multidisciplinary specialist medical teams was recommended for suspected lipodystrophy cases. The development and progression of metabolic complications were identified as key triggers for the referral of patients to specialist centers for follow-up care. Participants emphasized the impact of lipodystrophy on patient QoL, including effects on mental health and self-image. Although participants routinely used standard medical therapies to treat specific metabolic complications associated with lipodystrophy, it was acknowledged that metreleptin was typically required in patients with congenital generalized lipodystrophy and in some acquired generalized and partial lipodystrophy cases. A lack of experience among some participants and restrictions to access remained as barriers to metreleptin use. Conclusions To our knowledge, this is one of the first studies describing the qualitative experiences of physicians regarding the diagnosis and management of lipodystrophy. Other physician-centered studies may help increase the awareness of lipodystrophy among the wider medical community and support clinical approaches to this rare disease.

Data curation for a hospital-based cancer registry heavily relies on the labor-intensive manual abstraction process by cancer registrars to identify cancer-related information from free-text electronic health records. To streamline this process, a natural language processing system incorporating a hybrid of deep learning-based and rule-based approaches for identifying lung cancer registry-related concepts, along with a symbolic expert system that generates registry coding based on weighted rules, was developed. The system is integrated with the hospital information system at a medical center to provide cancer registrars with a patient journey visualization platform. The embedded system offers a comprehensive view of patient reports annotated with significant registry concepts to facilitate the manual coding process and elevate overall quality. Extensive evaluations, including comparisons with state-of-the-art methods, were conducted using a lung cancer dataset comprising 1428 patients from the medical center. The experimental results illustrate the effectiveness of the developed system, consistently achieving F1-scores of 0.85 and 1.00 across 30 coding items. Registrar feedback highlights the system’s reliability as a tool for assisting and auditing the abstraction. By presenting key registry items along the timeline of a patient’s reports with accurate code predictions, the system improves the quality of registrar outcomes and reduces the labor resources and time required for data abstraction. Our study highlights advancements in cancer registry coding practices, demonstrating that the proposed hybrid weighted neural-symbolic cancer registry system is reliable and efficient for assisting cancer registrars in the coding workflow and contributing to clinical outcomes.

Abstract Background Hereditary angioedema due to C1 inhibitor deficiency (HAE-C1INH) is a genetic rare disease characterized by recurrent, transient and unpredictable episodes of cold, non-pruriginous oedema without associated urticaria. The characteristics of the disease have a considerable impact on the quality of life of patients. The aim of this study was to increase understanding of the patient journey of HAE in Spain. Methods A multidisciplinary committee of 16 HAE experts (allergy, immunology, emergency department, hospital pharmacy and nursing) and 3 representatives of the Spanish Hereditary Angioedema Patient Association (AEDAF) who were patients or caregivers participated in the study. A review of the publications on HAE treatment was performed. Semi-structured interviews were performed to HAE experts, patients, or caregivers. Three meetings with the experts, patients and caregivers were held to share, discuss, and validate data obtained from literature and interviews and to build the model. Results Throughout the project, the patient journey has been drawn up, dividing it into the stages of pre-diagnosis, diagnosis and treatment/follow-up. Some areas for improvement have been identified. Firstly, there is a need to enhance awareness and training on HAE among healthcare professionals, with a particular emphasis on primary care and emergency department personnel. Secondly, efforts should be made to minimize patient referral times to allergy/immunology specialists, ensuring timely access to appropriate care. Thirdly, it is crucial to encourage the study of the relatives of diagnosed patients to early identify potential cases. Fourthly, equitable access to self-administered treatments should be ensured, facilitated by systems that enable medication delivery at home and proper education and training for patients. Equitable access to long-term prophylactic treatment should also be prioritized for all patients in need. To standardize HAE management, the development of consensus guidelines that reduce variability in clinical practice is essential. Lastly, promoting research studies to enhance knowledge of the disease and align its treatment with new developments in the healthcare field should be encouraged. Conclusions The knowledge of the patient journey in HAE allowed us to identify improvement areas with the final aim to optimize the disease management.

Abstract Background For most acute conditions, the phase prior to emergency department (ED) arrival is largely unexplored. However, this prehospital phase has proven an important part of the acute care chain (ACC) for specific time-sensitive conditions, such as stroke and myocardial infarction. For patients with undifferentiated complaints, exploration of the prehospital phase of the ACC may also offer a window of opportunity for improvement of care. This study aims to explore the ACC of ED patients with undifferentiated complaints, with specific emphasis on time in ACC and patient experience. Methods This Dutch prospective observational study, included all adult (≥ 18 years) ED patients with undifferentiated complaints over a 4-week period. We investigated the patients’ journey through the ACC, focusing on time in ACC and patient experience. Additionally, a multivariable linear regression analysis was employed to identify factors independently associated with time in ACC. Results Among the 286 ED patients with undifferentiated complaints, the median symptom duration prior to ED visit was 6 days (IQR 2–10), during which 58.6% of patients had contact with a healthcare provider before referral. General Practitioners (GPs) referred 80.4% of the patients, with the predominant patient journey (51.7%) involving GP referral followed by self-transportation to the ED. The median time in ACC was 5.5 (IQR 4.0-8.4) hours of which 40% was spent before the ED visit. GP referral and referral to pulmonology were associated with a longer time in ACC, while referral during evenings was associated with a shorter time in ACC. Patients scored both quality and duration of the provided care an 8/10. Conclusion Dutch ED patients with undifferentiated complaints consulted a healthcare provider in over half of the cases before their ED visit. The median time in ACC is 5.5 h of which 40% is spent in the prehospital phase. Those referred by a GP and to pulmonology had a longer, and those in the evening a shorter time in ACC. The acute care journey starts hours before patients arrive at the ED and 6 days of complaints precede this journey. This timeframe could serve as a window of opportunity to optimise care.

Copyright of Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz is the property of Springer Nature and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Background Hereditary angioedema due to C1 inhibitor deficiency (HAE-C1INH) is a genetic rare disease characterized by recurrent, transient and unpredictable episodes of cold, non-pruriginous oedema without associated urticaria. The characteristics of the disease have a considerable impact on the quality of life of patients. The aim of this study was to increase understanding of the patient journey of HAE in Spain. Methods A multidisciplinary committee of 16 HAE experts (allergy, immunology, emergency department, hospital pharmacy and nursing) and 3 representatives of the Spanish Hereditary Angioedema Patient Association (AEDAF) who were patients or caregivers participated in the study. A review of the publications on HAE treatment was performed. Semi-structured interviews were performed to HAE experts, patients, or caregivers. Three meetings with the experts, patients and caregivers were held to share, discuss, and validate data obtained from literature and interviews and to build the model. Results Throughout the project, the patient journey has been drawn up, dividing it into the stages of pre-diagnosis, diagnosis and treatment/follow-up. Some areas for improvement have been identified. Firstly, there is a need to enhance awareness and training on HAE among healthcare professionals, with a particular emphasis on primary care and emergency department personnel. Secondly, efforts should be made to minimize patient referral times to allergy/immunology specialists, ensuring timely access to appropriate care. Thirdly, it is crucial to encourage the study of the relatives of diagnosed patients to early identify potential cases. Fourthly, equitable access to self-administered treatments should be ensured, facilitated by systems that enable medication delivery at home and proper education and training for patients. Equitable access to long-term prophylactic treatment should also be prioritized for all patients in need. To standardize HAE management, the development of consensus guidelines that reduce variability in clinical practice is essential. Lastly, promoting research studies to enhance knowledge of the disease and align its treatment with new developments in the healthcare field should be encouraged. Conclusions The knowledge of the patient journey in HAE allowed us to identify improvement areas with the final aim to optimize the disease management. [ABSTRACT FROM AUTHOR]

Lung cancer has the highest incidence and cancer-related mortality worldwide. In Portugal, it ranks as the fourth most common cancer, with nearly 6000 new cases being diagnosed every year. Lung cancer is the main cause of cancer-related death among males and the third cause of cancer-related death in females. Despite the globally accepted guidelines and recommendations for what would be the ideal path for a lung cancer patient, several challenges occur in real clinical management across the world. The recommendations emphasize the importance of adequate screening of high-risk individuals, a precise tumour biopsy, and an accurate final diagnosis to confirm the neoplastic nature of the nodule. A detailed histological classification of the lung tumour type and a comprehensive molecular characterization are of utmost importance for the selection of an efficacious and patient-directed therapeutic approach. However, in the context of the Portuguese clinical organization and the national healthcare system, there are still several gaps in the ideal pathway for a lung cancer patient, involving aspects ranging from the absence of a national lung cancer screening programme through difficulties in histological diagnosis and molecular characterization to challenges in therapeutic approaches. In this manuscript, we address the most relevant weaknesses, presenting several proposals for potential solutions to improve the management of lung cancer patients, helping to decisively improve their overall survival and quality of life. [ABSTRACT FROM AUTHOR]

Unlike the consumer industry, biopharma, medical technology, and wellness companies have struggled to build meaningful, personalized patient and healthcare professional (HCP) experiences. The increase in drug launches and growing competition across therapy areas has made it challenging for brands and organizations to stand out from the crowd, whether for new molecules vs. legacy brands in an established treatment area and their generic counter-parts or for new molecules in a rare disease where trust is not yet earned. The customers’ needs and preferences are changing at lightning speed. The hierarchy of engagement has transformed, disrupting the dynamic between patients and healthcare professionals. Studies (1, 2) show that drug marketers too often turn various aspects of their product profile into signals – and may inadvertently “reinforce the habitual behavior the marketer is trying to change”. We encourage pharmaceutical companies to use a “data-driven approach to uncover new opportunities for growth” and improvement, and we’re committed to delivering results that make a difference for the patient, HCPs and for the system (value-based healthcare approach). Applying the Brand Leadership Circle, a new strategic tool, will help understand the patients’ journey and other stakeholders’ needs to implement successful approaches in marketing, communications and services using systematic research methods and techniques. [ABSTRACT FROM AUTHOR]

Background: For most acute conditions, the phase prior to emergency department (ED) arrival is largely unexplored. However, this prehospital phase has proven an important part of the acute care chain (ACC) for specific time-sensitive conditions, such as stroke and myocardial infarction. For patients with undifferentiated complaints, exploration of the prehospital phase of the ACC may also offer a window of opportunity for improvement of care. This study aims to explore the ACC of ED patients with undifferentiated complaints, with specific emphasis on time in ACC and patient experience. Methods: This Dutch prospective observational study, included all adult (≥ 18 years) ED patients with undifferentiated complaints over a 4-week period. We investigated the patients' journey through the ACC, focusing on time in ACC and patient experience. Additionally, a multivariable linear regression analysis was employed to identify factors independently associated with time in ACC. Results: Among the 286 ED patients with undifferentiated complaints, the median symptom duration prior to ED visit was 6 days (IQR 2–10), during which 58.6% of patients had contact with a healthcare provider before referral. General Practitioners (GPs) referred 80.4% of the patients, with the predominant patient journey (51.7%) involving GP referral followed by self-transportation to the ED. The median time in ACC was 5.5 (IQR 4.0-8.4) hours of which 40% was spent before the ED visit. GP referral and referral to pulmonology were associated with a longer time in ACC, while referral during evenings was associated with a shorter time in ACC. Patients scored both quality and duration of the provided care an 8/10. Conclusion: Dutch ED patients with undifferentiated complaints consulted a healthcare provider in over half of the cases before their ED visit. The median time in ACC is 5.5 h of which 40% is spent in the prehospital phase. Those referred by a GP and to pulmonology had a longer, and those in the evening a shorter time in ACC. The acute care journey starts hours before patients arrive at the ED and 6 days of complaints precede this journey. This timeframe could serve as a window of opportunity to optimise care. [ABSTRACT FROM AUTHOR]

Introduction: The Patient Journey Project aimed to analyze the scenario among Italian Mental Health Services (MHS) to understand the clinical interventions that are properly implemented and the ones deserving further implementation to design an effective treatment plan for patients living with schizophrenia (PLWS). Methods: The 60-items survey was co-designed with all the stakeholders (clinicians, expert patients and caregivers) involved in the Patient Journey and focused on three phases of schizophrenia course: early detection and management, acute phase management, long-term management/continuity of care. Respondents were Heads of the Mental Health Departments and Addiction Services (MHDAS) or facilities directors throughout Italian MHS. For each statement, respondents expressed the consensus on the importance and the degree of implementation in clinical practice. Results: Considering the importance of the statement, strong consensus was reached for most of the statements. Good levels of implementation were found on 2/17 statements of early detection and management, on 3/16 statements for acute phase management and on 1/27 statements of long-term management/continuity of care. Poor levels of implementation were found on 1/17 statements of early detection and management, none of acute phase management, and 4/27 statements for long-term management/continuity of care. Moderate levels of implementation were found on 14/17 statements for early detection and management, on 13/16 statements of acute phase management, and on 22/27 statements of long-term management/continuity of care. Thus, among Italian MHDAS, most interventions for PLWS were moderately implemented in clinical practice. Discussion: Italian MHS have to provide new strategies and structural actions to overcome these current limitations and barriers to effectively improve the journey of PLWS. The areas that deserve most implementation include interventions during the early stage (especially the continuity of care between Child and Adolescent Mental Health Services and Adult Mental Health Services), the evidence-based psychosocial interventions during the chronic stages of the disorder, and the continuity of care after acute hospitalization. [ABSTRACT FROM AUTHOR]

Background: This work deals with the question of which digital touchpoints in the course of a patient journey are desired by neurological patients, important for effective treatment and easy to implement. Methodology: 100 (44 men, 56 women) patients in a neurological practice at three different locations were examined using a written questionnaire with closed questions on topics of online booking, making appointments and reminders via SMS, video consultation with the doctor and chat with the doctor or the medical practice assistant. Results: It was shown that the older a person is, the less they prefer digital booking and consultation and that the more they work, the more they prefer digital booking and consultation and the longer they live in Switzerland, the less they prefer chat advice. Data protection plays a more important role in older patients. Regarding gender no significant differences can be shown. Discussion: The results are in line with a survey conducted by the Swiss Medical Association (Foederatio Medicorum Helveticorum) of 2020, which shows that the population wants to relieve the burden on doctors in administrative tasks through the use of digital solutions considered desirable. In this study, both younger and older patients are very interested in booking appointments online and to receive an appointment reminder via text message. Since older patients tend to prefer conservative booking, a «hybrid model» should be offered so that both options are available. [ABSTRACT FROM AUTHOR]

Abstract Background Improving screening and triage practices is essential for early severity assessments at the first point of contact and ensuring timely attention by healthcare workers (HCWs). The main objective of this study was to explore the triage process among febrile patients and HCWs in the emergency department (ED) of a tertiary care hospital in a resource-constrained setting. Methods This qualitative study was conducted from March to May 2023 at the ED of Tribhuvan University Teaching Hospital (TUTH), Nepal. The study included in-depth interviews with febrile patients (n = 15) and HCWs (n = 15). Additionally, direct observation notes (n = 20) were collected to document the triage process and patients’ experiences in the ED. Data underwent thematic analysis using the Interpretative Phenomenological Analysis (IPA) approach. Results The ED of TUTH offered comprehensive triage services with clear delineation for the severity of febrile patients in line with the World Health Organization (WHO) guidelines. Nonetheless, challenges and constraints were identified. In the ED, evenings were generally the busiest period, and the triage process was not thorough during night shifts. Perception of triage was limited among patients and variable among HCWs. Digitalizing recordings of patient information including payment was deemed necessary for effective management of patients’ waiting times at the triage station. High patient throughput added pressure on HCWs and had a potential influence on the delivery of services. Availability of medical equipment and space were also identified as challenges, with patients sometimes compelled to share beds. There were constraints related to waste disposal, hygiene, cleanliness, and the availability and maintenance of washrooms. Febrile patients experienced delays in receiving timely consultations and laboratory investigation reports, which affected their rapid diagnosis and discharge; nonetheless, patients were satisfied with the overall healthcare services received in the ED. Conclusions Improving current triage management requires resource organization, including optimizing the waiting time of patients through a digitalized system. Urgent priorities involve upgrading visitor facilities, patient consultations, laboratory investigations, hygiene, and sanitation. HCWs’ recommendations to resource the ED with more equipment, space, and beds and a dedicated triage officer to ensure 24-hour service, together with training and incentives, warrant further attention.

Background and Aims: Limited real-world nontertiary care evidence on the patient therapeutic journey and disease burden of eosinophilic esophagitis (EoE) exists. The aim was to collect real-world data on the EoE patient journey across different age groups. Methods: This retrospective, real-world, cohort study used electronic medical records and claims data provided by a rural integrated US healthcare system. Eligibility criteria included ≥ 2 diagnoses of EoE (2009–2018), ≥ 1 endoscopy, and ≥ 12 months of data before and after the index date (the first endoscopy date during the 180 days before and the 365 days after the first EoE diagnosis). Clinical findings, all-cause healthcare resource utilization, specialists consulted, therapies, and markers of disease progression were analyzed. Results: Overall, 613 patients were enrolled: 0–11 (children, n = 182), 12–17 (adolescents, n = 146), 18–54 (adults, n = 244), and ≥ 55 years old (older adults, n = 41). Post index, the prevalence of signs and symptoms increased. At baseline, most endoscopies were abnormal (80.5%) and most peak eosinophil counts were > 15 eosinophils/high-power field (87.9%); post index, all age groups had endoscopic and histologic improvements. However, 3 years post index, abnormal endoscopic appearance (62.3%) and histologic activity (51.2%) were observed. Patients of all ages exhibited considerable all-cause healthcare resource utilization. During follow-up, 86.3% of patients consulted a specialist. Before and after index, proton pump inhibitors and corticosteroids were the most commonly used pharmacological therapies; 44.0% of patients discontinued their first treatment post index. Disease progression occurred in 13.9% of patients post index. Conclusion: In this setting, patients with EoE irrespective of age face difficult therapeutic journeys with substantial disease burden.

Metabolic-associated fatty-liver disease (MAFLD), previously known as non-alcoholic fatty liver disease, is the most widespread and emerging chronic liver disease worldwide, with increasing prevalence rates also in the Asia-Pacific region. The disease has a high socio-economic burden as it negatively impacts the finances and quality of life of individuals affected and has a major burden on healthcare systems. The most important pathological event in MAFLD aetiopathogenesis is oxidative stress, which leads to functional and structural abnormalities in the liver as well as being involved in the development of other concomitant cardiometabolic diseases. MAFLD is a rather complex multisystemic clinical condition involving liver damage and a wide spectrum of extrahepatic manifestations such as obesity, type 2 diabetes, metabolic syndrome and cardiovascular diseases. This complexity requires the cooperation of multiple experts to identify MAFLD at an early stage, treat associated comorbidities, and promptly refer the patient to the hepatologist when needed. This review summarizes the current knowledge about MAFLD and reports the opinion of a group of experts on the increasing prevalence and burden of the disease in the southeast Asia region, the current journey of patients with MAFLD in developing countries, the role of oxidative stress and antioxidant treatment, and the importance of a multidisciplinary approach for early diagnosis and disease management. This article is part of the Current clinical use of silymarin in the treatment of toxic liver diseases: a case series Special Issue: https://www.drugsincontext.com/special_issues/current-clinical-use-of-silymarin-in-the-treatment-of-toxic-liver-diseases-a-case-series

Copyright of Journal der Deutschen Dermatologischen Gesellschaft is the property of Wiley-Blackwell and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

Summary: Background and Objectives: This study aimed to fill the gap of evidence‐based data by examining the impact of health‐related digital media use's impact on the patient‐physician relationship and patient journey, with the goal of driving positive changes in office‐based dermatological practice. Patients and Methods: German individuals with skin conditions completed a questionnaire assessing health‐related digital media use, eHealth literacy, impact of digital media use on the patient‐physician relationship and patient journey, and sociodemographic and health characteristics from June to November 2022, followed by descriptive analysis and linear regressions. Results: Overall, 919 participants were analyzed (median age: 47.00, interquartile range [28.00; 61.00] years, female: 53.6%, health‐related digital media users: 56.8%). Google and online encyclopedias were commonly used before and after dermatological consultations. Online self‐help groups were used by 75% of non‐treated participants. Digital media use had no impact on the patient‐physician relationship and a positive impact on the patient journey. Positive impacts were associated with higher eHealth literacy, satisfaction with digital media quality, importance of digital media, rural residence, high education, and trust in dermatologists. Conclusions: The potential of health‐related digital media in office‐based dermatological care necessitates the drive of an evidence‐based digital health platform to improve eHealth literacy and satisfaction with the quality of digital media among affected individuals. [ABSTRACT FROM AUTHOR]

The purpose of this mixed methods, cross-sectional patient survey was to characterize patient experience, to explore the frequency of and reasons for infertility treatment discontinuation and return to infertility treatments. Participants were recruited from United States patient support groups. Participants had received or were receiving ovulation induction (OI) with or without intrauterine insemination (IUI), with or without subsequent in vitro fertilization (IVF), or IVF with no other previous infertility treatment. Live birth was achieved by 62% of participants. Compared with participants treated with OI/IUI only, participants who underwent OI/IUI followed by ≥1 IVF cycle were less likely to consider discontinuing care (64% vs 77%; P =.014) or to discontinue treatment without achieving a pregnancy (40% vs 58%; P =.004). The most commonly cited reasons for treatment discontinuation were financial (62%) and psychological burden/treatment fatigue (58%). Expected versus actual time to pregnancy differed greatly. Continued desire for a child (60%) was the most frequently cited reason for continuing or resuming treatment. Expanded access to treatment, counseling and fostering realistic expectations regarding cumulative time to pregnancy may reduce treatment discontinuation. [ABSTRACT FROM AUTHOR]

Background: Improving screening and triage practices is essential for early severity assessments at the first point of contact and ensuring timely attention by healthcare workers (HCWs). The main objective of this study was to explore the triage process among febrile patients and HCWs in the emergency department (ED) of a tertiary care hospital in a resource-constrained setting. Methods: This qualitative study was conducted from March to May 2023 at the ED of Tribhuvan University Teaching Hospital (TUTH), Nepal. The study included in-depth interviews with febrile patients (n = 15) and HCWs (n = 15). Additionally, direct observation notes (n = 20) were collected to document the triage process and patients' experiences in the ED. Data underwent thematic analysis using the Interpretative Phenomenological Analysis (IPA) approach. Results: The ED of TUTH offered comprehensive triage services with clear delineation for the severity of febrile patients in line with the World Health Organization (WHO) guidelines. Nonetheless, challenges and constraints were identified. In the ED, evenings were generally the busiest period, and the triage process was not thorough during night shifts. Perception of triage was limited among patients and variable among HCWs. Digitalizing recordings of patient information including payment was deemed necessary for effective management of patients' waiting times at the triage station. High patient throughput added pressure on HCWs and had a potential influence on the delivery of services. Availability of medical equipment and space were also identified as challenges, with patients sometimes compelled to share beds. There were constraints related to waste disposal, hygiene, cleanliness, and the availability and maintenance of washrooms. Febrile patients experienced delays in receiving timely consultations and laboratory investigation reports, which affected their rapid diagnosis and discharge; nonetheless, patients were satisfied with the overall healthcare services received in the ED. Conclusions: Improving current triage management requires resource organization, including optimizing the waiting time of patients through a digitalized system. Urgent priorities involve upgrading visitor facilities, patient consultations, laboratory investigations, hygiene, and sanitation. HCWs' recommendations to resource the ED with more equipment, space, and beds and a dedicated triage officer to ensure 24-hour service, together with training and incentives, warrant further attention. [ABSTRACT FROM AUTHOR]

Objective: Since the implementation of value-based healthcare, there has been a growing emphasis on utilizing patient-reported experience measures (PREMs) to enhance the quality of care. However, the current PREMs are primarily generic and static, whereas healthcare is constantly evolving and encompasses a wide variety of aspects that impact care quality. To continuously improve care requires a dynamic PREM. The aim of this study was to propose an item bank for the establishment of a dynamic and care-specific patient-reported evaluation. Methods: In co-creation with patients, a mixed methods study was conducted involving: (1) an explorative review of the literature, (2) a focus group analysis with (ex-)patients, (3) qualitative analyses to formulate themes, and (4) a quantitative selection of items by patients and experts through prioritization. Results: Eight existing PREMs were evaluated. After removing duplicates, 141 items were identified. Through qualitative analyses of the focus group in which the patient journey was discussed, eight themes were formulated: “Organization of healthcare,” “Competence of healthcare professionals,” “Communication,” “Information & services,” “Patient empowerment,” “Continuity & informal care,” “Environment,” and “Technology.” Seven patients and eleven professionals were asked to prioritize what they considered the most important items. From this, an item bank with 76 items was proposed. Conclusion: In collaboration with patients and healthcare professionals, we have proposed a PREM-item bank to evaluate the experiences of patients’ receiving cancer care in an outpatient clinic. This item bank is the first step to dynamically assess the quality of cancer care provided in an outpatient setting. [ABSTRACT FROM AUTHOR]

A gap exists between difficulty in diagnosis and importance of early recognition and intervention in pediatric Guillain-Barré syndrome (GBS). Therefore, this study aimed to establish a diagnostic odyssey plot that allows "at-a-glance" overview of the diagnostic odyssey of GBS in children, including overall diagnostic delay, physician-related and patient-related diagnostic delays, and length and frequency of diagnostic errors. In this single-center retrospective cohort study, standardized data were obtained from children with GBS from 2003 to 2020. Overall diagnostic delay (time between symptom onset and diagnosis), physician-related diagnostic delay (time between the first medical visit and diagnosis), and patient-related diagnostic delay (time between symptom onset and the first medical visit) were analyzed. The study examined a total of 21 patients (11 men, median age 4.5 years). Overall, there were 40 misdiagnoses among 17 patients, while four were diagnosed correctly at the first visit. The overall diagnostic delay was 9 days [interquartile range (IQR), 6–17 days]. Physician-related diagnostic delay, but not patient-related diagnostic delay, was correlated with the overall diagnostic delay. Patients in the late-diagnosed group were more frequently misdiagnosed during their diagnostic odyssey than patients in the other groups. Risk factors associated with diagnostic delay included delayed onset of weakness and sensory deficits, absence of swallowing problems, and misdiagnosis as orthopedic disorders or viral infections. A unique diagnostic odyssey exists in pedaitric GBS. Several clinical risk factors were associated with the diagnostic delay. [ABSTRACT FROM AUTHOR]

Travelling for hospital appointments represents a significant burden to patients. We have developed a computer programme that accurately evaluates patient commutes between their home and treatment hospital in public and private transport. This has been applied to a cohort of Head and Neck Cancer (HNC) patients to plan the locations of satellite hospitals and assess their impact on patients' commutes. Patients diagnosed with HNC were identified from our hospital's database between December 2019 and January 2022. Using Python, commuting distances from patients' postcodes to our tertiary referral hospital were calculated. These commutes incorporated routes along defined roads, traffic data, and were calculated using public and private transport. Patient commutes from their postcodes to four satellite hospitals were also calculated. We identified their closest hospital and compared that journey to the patients' journey to our tertiary centre. We included 709 patients in our analysis. Patients would have a significantly shorter journey distance and time in both public and private transport if satellite hospitals were used for appointments alongside our tertiary centre. Average travel times would reduce by 10 minutes in private and 25 minutes in public transport. Furthermore, 70% of patients required ≥2 forms of public transport to get to our hospital. This would drop to 44.1% of patients if satellite hospitals were included in our service. Our programme would allow the most accessible sites to be identified for establishing outreach clinics at appropriate satellite hospitals, therefore improving patient access to healthcare. [ABSTRACT FROM AUTHOR]

Cognitive impairment (CI) is an issue that needs to be at the forefront of unmet healthcare needs in patients with prostate cancer (PCa) as it can negatively impact quality of life during long-term care. CI in patients with prostate cancer is thought to be influenced by treatment, androgen deprivation therapy (ADT), and novel androgen receptor (AR) pathway inhibitors in particular; however, current understanding is limited on how treatment affects cognition. Additionally, the experience of patients with CI who are receiving PCa treatment is not well understood or represented in clinical literature, which is a barrier to optimal patient outcomes in managing prostate cancer treatment-related cognitive impairment (PCa-TRCI). To help understand the patient journey and elucidate management gaps in PCa-TRCI, an international roundtable of healthcare provider and patient panelists was convened. The panelists focused on four key topic areas: (1) the patient experience when afflicted with, or at risk of, PCa-TRCI, (2) the physical, emotional, and social impact of CI on patients' quality of life (QoL), (3) the challenges that patients with PCa-TRCI face, and their impact on clinical decision-making, and (4) ways in which managing PCa-TRCI should evolve to improve patient outcomes. The purpose of the roundtable was to include patients in a direct discussion with healthcare providers (HCPs) regarding the patient journey and highlight real-world evidence of areas where patient outcomes could be improved in the absence of clinical evidence. The resulting discussion highlighted important healthcare gaps for patients with, and at risk of, PCa-TRCI and offered potential solutions as a roadmap to effective medicine. [ABSTRACT FROM AUTHOR]

Objectives: Incorporating the perspectives of patients and public into the conduct of research has the potential to make scientific research more democratic. This paper explores how being a patient partner on an arthritis patient advisory board shapes the patienthood of a person living with arthritis. Methods: An analysis was undertaken of the narratives of 22 patient research partners interviewed about their experiences on the Arthritis Patient Advisory Board (APAB), based in Vancouver, Canada. Results: Participants' motivations to become involved in APAB stemmed largely from their desire to change their relationship with their condition. APAB was a living collective project in which participants invested their hope, both for their own lives as patients and for others with the disease. Conclusions: Our findings highlight how the journeys of patient partners connect and integrate seemingly disparate conceptions of what it means to be a patient. One's experience as a clinical 'patient' transforms into the broader notion of civic patienthood. [ABSTRACT FROM AUTHOR]

Explorar la experiencia de las personas con fibromialgia (FM) en países latinoamericanos con objeto de identificar problemas en la atención sanitaria y otros ámbitos potencialmente solucionables. Estudio cualitativo con enfoque fenomenológico y de análisis de contenido a través de grupos focales y metodología de viaje del paciente (Ux del inglés User Experience). Se llevaron a cabo 9 grupos focales virtuales con pacientes con FM y profesionales sanitarios en Argentina, México y Colombia reclutados a partir de informantes clave y redes sociales. Participaron 43 personas (33 clínicos y 10 pacientes). Los agentes que interaccionan con el paciente en la enfermedad se encuentran en 3 esferas: la de la atención sanitaria, la del apoyo y vida laboral y la del contexto socioeconómico. La línea del viaje presenta 2 grandes tramos, 2 bucles y una línea discontinua delgada. Los 2 grandes tramos representan los tiempos que van desde los primeros síntomas hasta la visita médica y desde el diagnóstico hasta el seguimiento. Los bucles incluyen: 1.°) sucesión de diagnósticos, tratamientos erróneos y derivaciones a especialistas y 2.°) nuevos síntomas cada cierto tiempo, visitas a especialistas y dudas diagnósticas. Pocos pacientes logran la fase final de autonomía. El viaje de una persona con FM en Latinoamérica está lleno de obstáculos. La meta deseada es que todos los agentes entiendan que el automanejo por parte del paciente con FM es una parte indispensable del éxito, y solo se puede lograr accediendo a recursos de forma precoz y guiado por profesionales. To explore the patient journey of people with fibromyalgia (FM) in Latin American countries in order to identify problems in health care and other areas that may be resolvable. Qualitative study with phenomenological and content analysis approach through focus groups and patient journey (Ux; User Experience) methodology. Nine virtual focus groups were conducted with FM patients and healthcare professionals in Argentina, Mexico and Colombia recruited from key informants and social networks. Forty-three people participated (33 were clinicians and 10 were patients). The agents interacting with the patient in their disease journey are found in three spheres: healthcare (multiple medical specialists and other professionals), support and work life (including patient associations) and socioeconomic context. The line of the journey presents two large sections, two loops and a thin dashed line. The two major sections represent the time from first symptoms to medical visit (characterized by self-medication and denial) and the time from diagnosis to follow-up (characterized by high expectations and multiple contacts to make life changes that are not realized). The two loop phases include (1) succession of misdiagnoses and mistreatments and referrals to specialists and (2) new symptoms every so often, visits to specialists, diagnostic doubts, and impatience. Very few patients manage to reach the final phase of autonomy. The journey of a person with FM in Latin America is full of obstacles and loops. The desired goal is for all the agents involved to understand that self-management by the patient with FM is an essential part of success, and this can only be achieved with early access to resources and guidance from professionals. [ABSTRACT FROM AUTHOR]

Measuring the supply and demand for access to and wait-times for healthcare is key to managing healthcare services and allocating resources appropriately. Yet, few jurisdictions in distributed, socialized medicine settings have any way to do so. In this paper, we propose the requirements for a jurisdictional patient scheduling system that can measure key metrics, such as supply of and demand for regulated health care professional care, access to and wait times for care, real-time health system utilization and provide the data to compute patient journeys. The system is also capable of tracking new supply of providers and who does not have access to a primary care provider. Benefits, limitations and risks of the model are discussed. [ABSTRACT FROM AUTHOR]

Patients often have limited understanding of the emergency department (ED) care process, which can increase anxiety, frustration, and confusion. This study implemented and assessed the usefulness of a poster explaining the ED care process. A large wall-mounted poster illustrating the patient journey was developed; two different data collection techniques were used. First, a QR code/URL was used to passively collect patient reactions to the poster in 15 EDs. Due to limited response, a paper survey was developed and delivered by research assistants in three study sites using a consecutive sampling method. A total of 67 responses were collected from the QR/URL method between October 2017 and July 2021. The in-person survey collected 316 responses, of which approximately half of the respondents were women and the majority identified as white. Half of the respondents presented to the ED alone. Nearly 40% of respondents had noticed and engaged with the poster without prompting. Once prompted, the majority of respondents understood its content and over half found the information to be extremely or very helpful in preparing them for their ED journey. Respondents identified three additional key information needs: 1) real-time waiting times, 2) triaging scoring information, and 3) support on what to do while waiting. Patient journey posters may assist patients in navigating the ED care process. Exploring alternative delivery methods, personalizing materials and addressing wait times may increase usefulness. Reconceptualizing the waiting room as an opportunity for patient education and communication may alleviate patient fears and better prepare them for the ED journey.

The second series of workshops for the EHC Think Tank Workstreams on Access Equity and Future Care Pathways involved working towards consensus on addressing challenges to progress around achieving equitable access to care and shaping rare disease care pathways that meet patient needs while remaining practicable and affordable to healthcare providers. This report summarises workshop outcomes from these two workstreams, in which stakeholder participants identified a ‘guiding star’ determining the direction of ongoing focus, defined achievable ‘near star’ milestones, and enablers and constraints to achieving these.

Introduction. Delayed diagnosis of gut disease is a continuing problem, variously attributed to a range of patient, doctor, and health system factors. Gut disease often begins with indeterminate gut behaviours that are hard to classify. Aim. This study aimed to investigate delayed diagnosis from the point of view of the patient, or prospective patient. How gut and gut disease was understood, what might prompt them to seek care, and their experiences of seeking care. Methods. Using a qualitative design, we interviewed 44 people in New Zealand. Thirty-three had a diagnosis of gut disease, and 11 did not, though some of the patients in this latter group had symptoms. Results. Some participants had a smooth trajectory from first noticing gut symptoms to diagnosis. However, a subgroup of 22 participants experienced long periods of troublesome gut behaviours without a diagnosis. For this subgroup of 22 participants, we found people struggled to work out what was normal, thus influencing when they sought health care. Once they sought health care, experiences of that care could be frustrating, and achieving a diagnosis protracted. Some who remained undiagnosed felt abandoned, though had developed strategies to self-manage. Discussion. Indeterminate gut behaviours remain complex to deal with and it can difficult for both patients and doctors to assess when a symptom or group of symptoms need further investigation, watchful waiting or the use of other supportive strategies. Effectively communicating with healthcare staff can be a significant problem and there is currently a gap in support for patients in this regard. [ABSTRACT FROM AUTHOR]

Introduction: Eosinophilic esophagitis (EoE) is a chronic and progressive disease associated with dysphagia and eosinophilic infiltration of the esophageal mucosa. EoE can have a negative impact on a patient's quality of life (QoL); however, there is very limited data reflecting the emotional journey of patients with EoE or their perceived unmet needs. The aim of this study was to determine the emotional impact of EoE on patients at each stage of the patient journey. Methods: In this cross-sectional and qualitative research study, adult patients with EoE from eight different countries provided their experiences and feelings across each stage of the patient journey through one-on-one semi-structured interviews. Results: Twenty-one patients with EoE were enrolled in the study. The results of the one-on-one interviews showed that patients living with EoE go through an exhausting emotional experience during the different stages of the patient journey. In the pre-seeking-care stage, patients feel confused, afraid, frustrated, anxious, lonely, and misunderstood. During the diagnostic process, patients feel highly frustrated and angry because of the long and burdensome process. When EoE is finally diagnosed, patients feel liberated and relieved. When treatment is initiated, patients feel relief and enthusiasm, and, once the treatment starts to be effective and during the monitoring stage, they feel happier, less stressed, more confident, more relaxed, less fearful, and more in control owing to the improvement of their symptoms. Conclusions: This study pays attention to the different stages of the journey of patients with EoE. There is a lack of awareness by both physicians and patients that negatively affects every stage of the patient journey, but especially the initial phases of pre seeking care and diagnosis. We intend for this article to represent an opportunity to increase EoE awareness and to show the importance of considering the emotional impact on a patient with EoE's journey. [ABSTRACT FROM AUTHOR]

Purpose: Patients often undergo repeat surgery for endometriosis, due to recurrent or residual disease. Previous surgery is often considered a risk factor for worse surgical outcome. However, data are scarce concerning the influence of subsequent endometriosis surgery. Methods: A retrospective study in a centre of expertise for endometriosis was conducted. All endometriosis subtypes and intra-operative steps were included. Detailed information regarding surgical history of patients was collected. Surgical time, intra-operative steps and major post-operative complications were obtained as outcome measures. Results: 595 patients were included, of which 45.9% had previous endometriosis surgery. 7.9% had major post-operative complications and 4.4% intra-operative complications. The patient journey showed a median of 3 years between previous endometriosis surgeries. Each previous therapeutic laparotomic surgery resulted on average in 13 additional minutes (p = 0.013) of surgical time. Additionally, it resulted in more frequent performance of adhesiolysis (OR 2.96, p < 0.001) and in a higher risk for intra-operative complications (OR 1.81, p = 0.045), however no higher risk for major post-operative complications (OR 1.29, p = 0.418). Previous therapeutic laparoscopic endometriosis surgery, laparotomic and laparoscopic non-endometriosis surgery showed no association with surgical outcomes. Regardless of previous surgery, disc and segmental bowel resection showed a higher risk for major post-operative complications (OR 3.64, p = 0.017 respectively OR 3.50, p < 0.001). Conclusion: Previous therapeutic laparotomic endometriosis surgery shows an association with longer surgical time, the need to perform adhesiolysis, and more intra-operative complications in the subsequent surgery for endometriosis. However, in a centre of expertise with experienced surgeons, no increased risk of major post-operative complications was observed. [ABSTRACT FROM AUTHOR]

Objective: Distress assessment of cancer patients is considered state‐of‐the‐art. In addition to distress scores, individual care needs are an important factor for the initiation of psycho‐oncological interventions. In a mono‐centric, observational study, we aimed for characterization of patients indicating a subjective need but declining to utilize support services immediately to facilitate implementation of adapted screenings. Methods: This study analyzed retrospective data from routine distress screening and associated data from hospital records. Descriptive, variance and regression analyses were used to assess characteristics of postponed support utilization in patients with mixed cancer diagnoses in different treatment settings. Results: Of the total sample (N = 1863), 13% indicated a subjective need but postponed support utilization. This subgroup presented as being as burdened by symptoms of depression (p < 0.001), anxiety (p < 0.001) and distress (p < 0.001) as subjectively distressed patients with intent to directly utilize support. Time periods since diagnosis were shorter (p = 0.007) and patients were more often inpatients (p = 0.045). Conclusions: Despite high heterogeneity among the subgroups, this study identified distress‐related factors and time since diagnosis as possible predictors for postponed utilization of psycho‐oncological interventions. Results suggest the necessity for time‐individualized support which may improve utilization by distressed patients. [ABSTRACT FROM AUTHOR]

OBJECTIVE: As of today, healthcare systems worldwide face severe challenges that undermine their sustainability. The value-based healthcare (VBHC) approach has been proposed as a strategic and methodological framework to ensure the delivery of the best patient outcomes with economic efficiency. Through the illustrative example of B-type natriuretic peptide (BNP) and N-terminal proBNP (NT-proBNP) for heart failure (HF) patient management in the context of the Italian National Healthcare system, this article explores the role that in vitro diagnostics (IVDs) can play in enabling value-based care models. SUBJECTS AND METHODS: 14 healthcare professionals representing the relevant professional figures involved in HF patient management met to revise the current HF patient journey and design a new care pathway that, leveraging on BNP/NT-proBNP, reflects the VBHC principles. RESULTS: The literature recognizes the dosage of BNP/NT-proBNP as the gold standard for diagnosing HF. However, as of today, these IVDs are not employed at their full potential regarding HF patient management. A new patient journey is proposed so that patients are diagnosed early and properly monitored in the aftermath of hospitalization, improving outcomes at contained costs. CONCLUSIONS: As testified by the example of HF patient management in Italy, laboratory medicine can represent a lever for adopting value-based care models. Still, large-scale adoption of VBHC will call for structural reforms that revise how healthcare delivery is organized, measured, and reimbursed. [ABSTRACT FROM AUTHOR]

The journey of metastatic colorectal cancer patients is complex and challenging, requiring coordination and collaboration between multiple healthcare providers. Understanding patients' needs, fears, feelings, concerns, and behaviors is essential for providing individualized patient-centered care. In recent years, mCRC patients have experienced improvements in clinical outcomes, from 16 months of overall survival to 32 months, thanks to research. However, there is still room for improvement, and integrating clinical and translational research into routine practice can help patients benefit from treatments and techniques that would not be an option. In the Journey of mCRC patients, living well with cancer and quality of life becomes a priority given the outcomes of the disease. Patient reported outcomes (PRO) and Patient Reported Outcome Measures (PROMs) are becoming therefore new estimands in Oncology. Patient advocates represent important figures in this process by prioritizing issues and research questions; evaluating research designs and the performance of the research; the analysis and interpretation of data; and how results are disseminated. Multidisciplinary Tumor Boards and shared decision-making is essential for designing treatment strategies for individual patients. Quality of Life is often prioritized only when it comes to refractory advanced disease and end-of-life care, but it has to be integrated from the beginning, as the emotional impact of diagnosis leads to a vulnerable situation where patients' needs and preferences can be easily overseen. First-line treatment will be chosen among more treatment options than subsequent lines, with longer progression-free survival and a bigger impact on the outcomes. Practicing patient-centered care and optimizing first-line treatment for colorectal cancer patients requires a comprehensive understanding of patient experience and treatment outcomes, which can guide clinical practice and inform regulatory decisions for the benefit of patients. [ABSTRACT FROM AUTHOR]

IntroductionThe Patient Journey Project aimed to analyze the scenario among Italian Mental Health Services (MHS) to understand the clinical interventions that are properly implemented and the ones deserving further implementation to design an effective treatment plan for patients living with schizophrenia (PLWS).MethodsThe 60-items survey was co-designed with all the stakeholders (clinicians, expert patients and caregivers) involved in the Patient Journey and focused on three phases of schizophrenia course: early detection and management, acute phase management, long-term management/continuity of care. Respondents were Heads of the Mental Health Departments and Addiction Services (MHDAS) or facilities directors throughout Italian MHS. For each statement, respondents expressed the consensus on the importance and the degree of implementation in clinical practice.ResultsConsidering the importance of the statement, strong consensus was reached for most of the statements. Good levels of implementation were found on 2/17 statements of early detection and management, on 3/16 statements for acute phase management and on 1/27 statements of long-term management/continuity of care. Poor levels of implementation were found on 1/17 statements of early detection and management, none of acute phase management, and 4/27 statements for long-term management/continuity of care. Moderate levels of implementation were found on 14/17 statements for early detection and management, on 13/16 statements of acute phase management, and on 22/27 statements of long-term management/continuity of care. Thus, among Italian MHDAS, most interventions for PLWS were moderately implemented in clinical practice.DiscussionItalian MHS have to provide new strategies and structural actions to overcome these current limitations and barriers to effectively improve the journey of PLWS. The areas that deserve most implementation include interventions during the early stage (especially the continuity of care between Child and Adolescent Mental Health Services and Adult Mental Health Services), the evidence-based psychosocial interventions during the chronic stages of the disorder, and the continuity of care after acute hospitalization.

Background: Personal perspectives of patients are seldomly reported in the literature, most notably their journey to diagnosis. Literature is heavily focused on the patient journey from a healthcare professional’s point of view during the treatment process. The objective of this study is to conduct a qualitative study on a video sharing site, YouTube, to determine if the patient journey from a subjective perspective is truly linear for those who suffer from ulcerative colitis. Methods: Phrases searched on YouTube included “ulcerative colitis story” and “ulcerative colitis diagnosis story”. Video monologues chronicling the patient journey before diagnoses were transcribed using the YouTube transcription function to identify patterns amongst users’ experiences. Thematic analysis was used to identify whether certain themes were present in the monologues. Analysis was performed using NVivo 12 QRS International and used line-by-line coding to create an initial codebook that represented the concepts covered in the monologues. Results: We viewed a total of 48 videos and included 29 videos from 2010 to 2020 for qualitative analysis. Overall, three major themes were identified in the patient journey prior to ulcerative colitis diagnosis:1) initial symptoms 2) initial encounter with the healthcare system 3) gastroenterologist referral. Conclusions: The literature depicts the patient journey as a linear path. This qualitative study discovers that the reality of the patient journey is in fact non-linear. Pharmacists are the most accessible health care professionals and can help guide patients in prioritizing signs and symptoms to streamline the non-linear path that patients experience.

This consensus conference report summarizes discussions on sleep apnea care and management. Our goal is to simplify the journey to optimize success for individuals at risk of obstructive sleep apnea and to facilitate diagnostics, monitoring and communication among the entire healthcare team including patients, primary care physicians, sleep specialists, sleep dentists and other key providers. The statement identifies five key problems or unmet needs and contemplates four potential future directions.

Transthyretin amyloid cardiomyopathy (ATTR-CM) is an underdiagnosed disease associated with high mortality rates and the patient journey is characterized by increased complexities. Accurate and timely diagnosis and prompt initiation of disease-modifying treatment constitute the contemporary unmet need in ATTR-CM. ATTR-CM diagnosis is characterized by considerable delays and high rates of misdiagnosis. The majority of patients present themselves to primary care physicians, internists, and cardiologists, and many have undergone repeated medical evaluations before an accurate diagnosis has been made. The disease is diagnosed mainly after the development of heart failure symptoms, reflecting a long course of missed opportunities before diagnosis and disease-modifying treatment initiation. Early referral to experienced centers ensures prompt diagnosis and therapy. Early diagnosis, better care coordination, acceleration of digital transformation and reference networks, encouragement of patient engagement, and implementation of rare disease registries are the key pillars to improve the ATTR-CM patient pathway and achieve important benefits in ATTR-CM outcomes.