BACKGROUND: Carbapenemase-producing Enterobacterales (CPE) are challenging in healthcare, with resistance to multiple classes of antibiotics. This study describes the emergence of imipenemase (IMP)-encoding CPE among diverse Enterobacterales species between 2016 and 2019 across a London regional network.
METHODS: We performed a network analysis of patient pathways, using electronic health records, to identify contacts between IMP-encoding CPE-positive patients. Genomes of IMP-encoding CPE isolates were overlaid with patient contacts to imply potential transmission events.
RESULTS: Genomic analysis of 84 Enterobacterales isolates revealed diverse species (predominantly Klebsiella spp, Enterobacter spp, and Escherichia coli); 86% (72 of 84) harbored an IncHI2 plasmid carrying blaIMP and colistin resistance gene mcr-9 (68 of 72). Phylogenetic analysis of IncHI2 plasmids identified 3 lineages showing significant association with patient contacts and movements between 4 hospital sites and across medical specialties, which was missed in initial investigations.
CONCLUSIONS: Combined, our patient network and plasmid analyses demonstrate an interspecies, plasmid-mediated outbreak of blaIMPCPE, which remained unidentified during standard investigations. With DNA sequencing and multimodal data incorporation, the outbreak investigation approach proposed here provides a framework for real-time identification of key factors causing pathogen spread. Plasmid-level outbreak analysis reveals that resistance spread may be wider than suspected, allowing more interventions to stop transmission within hospital networks.SummaryThis was an investigation, using integrated pathway networks and genomics methods, of the emergence of imipenemase-encoding carbapenemase-producing Enterobacterales among diverse Enterobacterales species between 2016 and 2019 in patients across a London regional hospital network, which was missed on routine investigations.

BACKGROUND: X-linked retinitis pigmentosa (XLRP) is a rare, incurable, vision-threatening, genetic disease. In this study, we aimed to reveal the real-world burden of this disease from the viewpoint of retina specialists and geneticists involved directly in XLRP care and to identify unique insights that may not otherwise be available through typical clinical studies or health economic research.
METHODS: In this exploratory, cross-sectional study (EXPLORE XLRP-1), retina specialists (n = 20) and geneticists (n = 5) in France, Germany, Italy, Spain, and the UK provided anonymized insights on their experiences managing patients with XLRP (n = 80) via an online survey and 60-min telephone interview.
RESULTS: Survey respondents reported that patient independence decreased over time, where 37% of patients were considered \"completely autonomous\" at diagnosis versus 23% at the last consultation. At their last visit, 45% of patients were active in the workforce; 67% (12/18) of \"completely autonomous\" patients had active working status compared with 13% (1/8) of \"completely dependent\" patients. The average time from onset of symptoms to diagnosis was 4 years and varied among countries. In 78% of patients, XLRP was confirmed by genetic testing, the rate of which varied among countries (range, 50-94%), taking up to 6 months to receive results. Specialists identified unmet needs in XLRP management including more standardized assessments of quality of life (QoL) as well as easier and earlier access to specialists, genetic testing, patient support programs, and effective treatment options.
CONCLUSIONS: The diagnosis, genetic testing, and management pathways among patients with XLRP can vary considerably. There is a need for more standardized diagnosis and management pathways, and QoL assessments, due to the major impact that XLRP has on patients\' lives.

BACKGROUND: Cancer incidence is increasing in Ethiopia mainly due to increased life expectancy, while oncological capacities remain limited. Strong referral linkages between different levels of the healthcare system are key to provide timely access to cancer care. In this qualitative study, we assessed limitations and potential of cancer patient referral in the rural Southwest of Ethiopia.
METHODS: We held four focus group discussions (FGD) with health professionals at one primary and three secondary hospitals and conducted eight in-depth interviews (IDI) with the hospitals´ medical executives and local health bureau representatives. Data was analysed inductively using thematic analysis and emerging themes were categorized within the revised concept of access by Penchansky and Saurman.
RESULTS: The inevitable referral of patients with cancer in the rural Southwest of Ethiopia is characterized by the absence of clear communication protocols and the lack of formal referral linkages. The newly implemented hub-system has improved emergency referrals and could be expanded to non-emergency referrals, sensitive to the needs of advanced oncological care. Liaison officers can pave the way but need to be trained and equipped adequately. Referred patients struggle with inadequate transportation systems, the lack of accommodation close to specialized facilities as well as the inability to navigate at those sites due to language barriers, illiteracy, and stigmatization. Few Non-Governmental Organizations (NGOs) help but cannot compensate the limited governmental support. The shortage of medications at public hospitals leads to patients being directed to costly private pharmacies. In the light of those challenges, cancer remains to be perceived as a \"death sentence\" within the rural communities.
CONCLUSIONS: Standardized referral linkages and a multi-faceted support network throughout the cancer care continuum are necessary to make oncology care accessible to Ethiopia´s large rural population.

BACKGROUND: Understanding patient pathways from discovery of breast symptoms to treatment start can aid in identifying ways to improve access to timely cancer care. This study aimed to describe the patient pathways experienced by uninsured women from detection to treatment initiation for breast cancer in Mexico City and estimate the potential impact of earlier treatment on patient survival.
METHODS: We used process mining, a data analytics technique, to create maps of the patient pathways. We then compared the waiting times and pathways between patients who initially consulted a private service versus those who sought care at a public health service. Finally, we conducted scenario modelling to estimate the impact of early diagnosis and treatment on patient survival.
RESULTS: Our study revealed a common pathway followed by breast cancer patients treated at the two largest public cancer centres in Mexico City. However, patients who initially sought care in private clinics experienced shorter mean wait times for their first medical consultation (66 vs 88 days), and diagnostic confirmation of cancer (57 vs 71 days) compared to those who initially utilized public clinics. Our scenario modelling indicated that improving early diagnosis to achieve at least 60% of patients starting treatment at early stages could increase mean patient survival by up to two years.
CONCLUSIONS: Our study highlights the potential of process mining to inform healthcare policy for improvement of breast cancer care in Mexico. Also, our findings indicate that reducing diagnostic and treatment intervals for breast cancer patients could result in substantially better patient outcomes.
UNASSIGNED: This study revealed significant differences in time intervals along the pathways of women with breast cancer according to the type of health service first consulted by the patients: whether public primary care clinics or private doctors. Policies directed to reduce these inequities in access to timely cancer care are desperately needed to reduce socioeconomic disparities in breast cancer survival.

OBJECTIVE: This study aimed to examine the diagnostic pathways and outcomes of patients with heart failure (HF), stratified by left ventricular ejection fraction (EF), and to highlight deficiencies in real-world HF diagnosis and management.
RESULTS: We conducted a retrospective cohort study in Salford, United Kingdom, utilizing linked primary and secondary care data for HF patients diagnosed between January 2010 and November 2019. We evaluated characteristics, diagnostic patterns, healthcare resource utilization, and outcomes. Patients were categorized according to baseline (the latest measure prior to or within 90 days post-diagnosis) as having HF with reduced EF (HFrEF), mildly reduced EF (HFmrEF), or preserved EF (HFpEF). The data encompassed a 2 year period before diagnosis and up to 5 years post-diagnosis. A total of 3227 patients were diagnosed with HF between January 2010 and November 2019. The mean follow-up time was 2.6 [±1.9 standard deviation (SD)] years. The mean age at diagnosis was 74.8 (±12.7 SD) years, and 1469 (45.5%) were female. HFpEF was the largest cohort (46.6%, npEF = 1505), HFmrEF constituted 16.1% (nmrEF = 520), and HFrEF 18.5% (nrEF = 596) of the population, while 18.8% (nu = 606) of patients remained unassigned due to insufficient evidence to support categorization. At baseline, measurement of natriuretic peptide (NP; brain NP and N-terminal pro-B-type NP) and echocardiographic report data were available for 592 (18.3%) and 2621 (81.2%) patients, respectively. A total of 2099 (65.0%) of the HF cohort had access to a cardiology-led outpatient clinic prior to the HF diagnosis, and 602 (18.7%) attended cardiac rehabilitation post-diagnosis. The 5 year crude survival rate was 37.8% [95% confidence interval (CI) (35.2-40.7%)], 42.3% [95% CI (38.0-47.2%)], and 45.5% [95% CI (41.0-50.4%)] for HFpEF, HFrEF, and HFmrEF, respectively.
CONCLUSIONS: Low survival rates were observed across all HF groups, along with suboptimal rates of NP testing and specialist assessments. These findings suggest missed opportunities for timely and accurate HF diagnosis, a pivotal first step in improving outcomes for HF patients. Addressing these gaps in diagnosis and management is urgently needed.

When patients are brought to the emergency room with a traumatic injury to the spinal cord, the road to recovery is long and uncertain. In minutes, their lives have been irreversibly altered. Time will tell if the paralysis to the limbs is permanent or if some degree of mobility or sensation can be reacquired. To many patients, the first weeks feel almost unreal. They find themselves in a state of shock, and feelings of uncertainty and loss of control are dominating. Spinal cord injuries are treated in multiple specialized hospital units. Each unit is accountable for providing the best possible treatment within their area of expertise. While continuity in care has been a hot research topic for the past 20 years, few studies provide empirical data on patients\' perspectives on long-term hospital treatments. This study examines how patients with tetraplegia experience continuity in care when they journey across multiple hospital units over the course of several months. This paper is based on a study of patient pathways for patients with tetraplegia caused by high spinal cord injuries. Semi-structured interviews were conducted with nine patients, seven next of kin and thirteen healthcare professionals in Copenhagen University Hospital. Data from the interviews were analyzed using patient journey mapping, to uncover variations in patients\' experience during various stages of their admission. The study finds that patients are struggling to maintain a sense of control over their life as they continuously engage in negotiations of perceptions of their body, of the physical surroundings and of their perception of time and the future. The study concludes that health care professionals should be mindful of these key themes to support the patients\' empowerment and active participation during recovery.

BACKGROUND: Carbapenemase-producing Enterobacterales (CPE) are challenging in healthcare, with resistance to multiple classes of antibiotics. This study describes the emergence of IMP-encoding CPE amongst diverse Enterobacterales species between 2016 and 2019 across a London regional network.
METHODS: We performed a network analysis of patient pathways, using electronic health records, to identify contacts between IMP-encoding CPE positive patients. Genomes of IMP-encoding CPE isolates were overlayed with patient contacts to imply potential transmission events.
RESULTS: Genomic analysis of 84 Enterobacterales isolates revealed diverse species (predominantly Klebsiella spp, Enterobacter spp, E. coli); 86% (72/84) harboured an IncHI2 plasmid carrying blaIMP and colistin resistance gene mcr-9 (68/72). Phylogenetic analysis of IncHI2 plasmids identified three lineages showing significant association with patient contacts and movements between four hospital sites and across medical specialities, which was missed on initial investigations.
CONCLUSIONS: Combined, our patient network and plasmid analyses demonstrate an interspecies, plasmid-mediated outbreak of blaIMPCPE, which remained unidentified during standard investigations. With DNA sequencing and multi-modal data incorporation, the outbreak investigation approach proposed here provides a framework for real-time identification of key factors causing pathogen spread. Plasmid-level outbreak analysis reveals that resistance spread may be wider than suspected, allowing more interventions to stop transmission within hospital networks.

UNASSIGNED: Rare diseases are a heterogeneous group of complex clinical patterns, which more often than not run a chronic course. The fact that they are rare complicates the provision of medical care for the specific diseases.
UNASSIGNED: In the field of action titled \'Care, Centres, Networks\' of its National Action Plan, the National Action League for People with Rare Diseases recommends the formation of a three-level, interconnected centre model. This form of care was investigated in two large research projects. It was shown that the time to diagnosis was markedly reduced. Commissioned by the Federal Ministry of Health, the expert report on the health status of people with rare diseases in Germany issued in 2023 concludes that the medical care provided to this group of people has improved markedly since the National Action Plan was introduced. The establishment of the Centres for Rare Diseases (ZSE, Zentren für Seltene Erkrankungen) is seen as the most important development. However, it is noted that there is still a lack of coordinated care provision pathways for referring patients to the appropriate facilities.
UNASSIGNED: The provision of care to people with rare diseases has improved upon the implementation of the measures from the National Action Plan. In a next step, care provision pathways must be established across sector boundaries. Challenges remain in the area of psychosocial care and the long-term securing of funding for these structures.

Despite the low prevalence of each rare disease, the total burden is high. Patients with rare diseases encounter numerous barriers, including delayed diagnosis and limited access to high-quality treatments. In order to tackle these challenges, the European Commission launched the European Reference Networks (ERNs), cross-border networks of healthcare providers and patients representatives. In parallel, the aims and structure of these ERNs were translated at the federal and regional levels, resulting in the creation of the Flemish Network of Rare Diseases. In line with the mission of the ERNs and to ensure equal access to care, we describe as first patient pathways for systemic sclerosis (SSc), as a pilot model for other rare connective and musculoskeletal diseases. Consensus was reached on following key messages: 1. Patients with SSc should have multidisciplinary clinical and investigational evaluations in a tertiary reference expert centre at baseline, and subsequently every three to 5 years. Intermediately, a yearly clinical evaluation should be provided in the reference centre, whilst SSc technical evaluations are permissionably executed in a centre that follows SSc-specific clinical practice guidelines. In between, monitoring can take place in secondary care units, under the condition that qualitative examinations and care including interactive multidisciplinary consultations can be provided. 2. Patients with early diffuse cutaneous SSc, (progressive) interstitial lung disease and/or pulmonary arterial hypertension should undergo regular evaluations in specialised tertiary care reference institutions. 3. Monitoring of patients with progressive interstitial lung disease and/or pulmonary (arterial) hypertension will be done in agreement with experts of ERN LUNG.

Increasing emergency department (ED) utilization induces considerable pressure on ED staff and organization in Germany. Reasons for certain ED attendances are seen partly in insufficient continuity of care outside of hospitals. To explore the health care patterns before and after an ED attendance in Germany, we used claims data from nine statutory health insurance funds, covering around 25 % of statutory health insurees (1). We descriptively analyzed ED attendances for adult patients in 2016 according to their sociodemographic characteristics and diagnoses (2). Based on the ED attendance as initial event, we investigated health care provider utilization 180 days before and after the respective ED treatment and are presented by means of Sankey diagrams. In total, 4,757,536 ED cases of 3,164,343 insured individuals were analyzed. Back pain was the most frequent diagnosis in outpatient ED cases (5.0 %), and 80.2 % of the patients visited primary care physicians or specialists 180 days before and 78.8 % 180 days after ED treatment. Among inpatient cases, heart failure (4.6 %) was the leading diagnosis and 74.6 % used primary care physicians or specialists 180 days before and 65.1 % 180 days after ED treatment. The ED re-attendance slightly increased for back pain (4.9 % to 7.9 %) and decreased for heart failure (13.4 % to 12.6 %).