Challenges and opportunities in access to care for systemic lupus erythematosus patients across Europe and worldwide.

SLE presents significant challenges for patients and health-care professionals (HCPs), both across Europe and worldwide. Improving health-care outcomes for patients with SLE requires a comprehensive understanding of patient disease pathways. In particular, the geographical distance between SLE patients and specialized care centres, combined with the scarcity of rheumatologists, exacerbates delays in diagnosis and management. Also, the initial SLE symptoms can often be non-specific, and providing guidelines for primary HCPs and other non-specialists is extremely important. Improvement in access to treatment is also important, with several recently approved therapies for SLE not being available in several European countries and many low- and middle-income countries (LMICs). Furthermore, in the LMICs in which these treatments are available, they are not always covered by the health-care system, making their access almost impossible for those of lower socio-economic status. A number of provisions are already in place within the European Union, to improve access to care for patients with rare and complex diseases, including those with SLE. In particular, European Reference Networks (ERNs), such the ERN for Autoimmune Diseases ReCONNET, are virtual networks involving HCPs across Europe with the aim of improving the care of patients with rare and complex diseases that require highly specialized treatment and a concentration of knowledge and resources. In addition, lupus patient organizations such as Lupus Europe play a crucial role in raising awareness of SLE and advocating for improved access to care. Together, we can work towards a future where all people living with lupus receive the comprehensive and timely care they deserve.

Real-World Treatment Patterns and Timeliness of Clinical Care Pathway for Non-Small Cell Lung Cancer Patients in Austria: The PRATER Retrospective Study.

This was a retrospective study of the profile and initial treatments of adults diagnosed with early-stage (ES) non-small cell lung cancer (NSCLC) during January 2018-December 2021 at 16 leading hospital institutions in Austria, excluding patients enrolled in clinical trials. In total, 319 patients were enrolled at a planned ~1:1:1 ratio across StI:II:III. Most tested biomarkers were programmed death ligand 1 (PD-L1; 58% expressing), Kirsten rat sarcoma virus (KRAS; 22% positive), and epidermal growth factor receptor (EGFR; 18% positive). Of 115/98/106 StI/II/III patients, 82%/85%/36% underwent surgery, followed by systemic therapy in 9%/45%/47% of those [mostly chemotherapy (ChT)]. Unresected treated StIII patients received ChT + radiotherapy [43%; followed by immune checkpoint inhibitors (ICIs) in 39% of those], ICI ± ChT (35%), and ChT-alone/radiotherapy-alone (22%). Treatment was initiated a median (interquartile range) of 24 (7-39) days after histological confirmation, and 55 (38-81) days after first medical visit. Based on exploratory analyses of all patients newly diagnosed with any stage NSCLC during 2018-2021 at 14 of the sites (N = 7846), 22%/10%/25%/43% had StI/II/III/IV. The total number was not significantly different between pre-COVID-19 (2018-2019) and study-specific COVID-19 (2020-2021) periods, while StI proportion increased (21% vs. 23%; p = 0.012). Small differences were noted in treatments. In conclusion, treatments were aligned with guideline recommendations at a time which preceded the era of ICIs and targeted therapies in the (neo)adjuvant setting.

Mapping the Clinical Pathway for Patients Undergoing Vestibular Schwannoma Resection.

BACKGROUND: The introduction of the electronic health record (EHR) has improved the collection and storage of patient information, enhancing clinical communication and academic research. However, EHRs are limited by data quality and the time-consuming task of manual data extraction. This study aimed to use process mapping to help identify critical data entry points within the clinical pathway for patients with vestibular schwannoma (VS) ideal for structured data entry and automated data collection to improve patient care and research. METHODS: A 2-stage methodology was used at a neurosurgical unit. Process maps were developed using semi-structured interviews with stakeholders in the management of VS resection. Process maps were then retrospectively validated against EHRs for patients admitted between August 2019 and December 2021, establishing critical data entry points. RESULTS: In the process map development, 20 stakeholders were interviewed. Process maps were validated against EHRs of 36 patients admitted for VS resection. Operative notes, surgical inpatient reviews (including ward rounds), and discharge summaries were available for all patients, representing critical data entry points. Areas for documentation improvement were in the preoperative clinics (30/36; 83.3%), preoperative skull base multidisciplinary team (32/36; 88.9%), postoperative follow-up clinics (32/36; 88.9%), and postoperative skull base multidisciplinary team meeting (29/36; 80.6%). CONCLUSIONS: This is a first use to our knowledge of a 2-stage methodology for process mapping the clinical pathway for patients undergoing VS resection. We identified critical data entry points that can be targeted for structured data entry and for automated data collection tools, positively impacting patient care and research.

A machine learning framework for interpretable predictions in patient pathways: The case of predicting ICU admission for patients with symptoms of sepsis.

Proactive analysis of patient pathways helps healthcare providers anticipate treatment-related risks, identify outcomes, and allocate resources. Machine learning (ML) can leverage a patient's complete health history to make informed decisions about future events. However, previous work has mostly relied on so-called black-box models, which are unintelligible to humans, making it difficult for clinicians to apply such models. Our work introduces PatWay-Net, an ML framework designed for interpretable predictions of admission to the intensive care unit (ICU) for patients with symptoms of sepsis. We propose a novel type of recurrent neural network and combine it with multi-layer perceptrons to process the patient pathways and produce predictive yet interpretable results. We demonstrate its utility through a comprehensive dashboard that visualizes patient health trajectories, predictive outcomes, and associated risks. Our evaluation includes both predictive performance - where PatWay-Net outperforms standard models such as decision trees, random forests, and gradient-boosted decision trees - and clinical utility, validated through structured interviews with clinicians. By providing improved predictive accuracy along with interpretable and actionable insights, PatWay-Net serves as a valuable tool for healthcare decision support in the critical case of patients with symptoms of sepsis.

The impact of cancer patient pathway on timing of radiotherapy and survival: a cohort study in glioblastoma patients.

PURPOSE: Glioblastoma (GBM) is an aggressive brain tumor in which primary therapy is standardized and consists of surgery, radiotherapy (RT), and chemotherapy. However, the optimal time from surgery to start of RT is unknown. A high-grade glioma cancer patient pathway (CPP) was implemented in Norway in 2015 to avoid non-medical delays and regional disparity, and to optimize information flow to patients. This study investigated how CPP affected time to RT after surgery and overall survival. METHODS: This study included consecutive GBM patients diagnosed in South-Eastern Norway Regional Health Authority from 2006 to 2019 and treated with RT. The pre CPP implementation group constituted patients diagnosed 2006-2014, and the post CPP implementation group constituted patients diagnosed 2016-2019. We evaluated timing of RT and survival in relation to CPP implementation. RESULTS: A total of 1212 patients with GBM were included. CPP implementation was associated with significantly better outcomes (p < 0.001). Median overall survival was 12.9 months. The odds of receiving RT within four weeks after surgery were significantly higher post CPP implementation (p < 0.001). We found no difference in survival dependent on timing of RT below 4, 4-6 or more than 6 weeks (p = 0.349). Prognostic factors for better outcomes in adjusted analyses were female sex (p = 0.005), younger age (p < 0.001), solitary tumors (p = 0.008), gross total resection (p < 0.001), and higher RT dose (p < 0.001). CONCLUSION: CPP implementation significantly reduced time to start of postoperative RT. Survival was significantly longer in the period after the CPP implementation, however, timing of postoperative RT relative to time of surgery did not impact survival.

Association of a device-based remote management heart failure pathway with outcomes: TriageHF Plus real-world evaluation.

AIMS: Clinical pathways have been shown to improve outcomes in patients with heart failure (HF). Although patients with HF often have a cardiac implantable electronic device, few studies have reported the utility of device-derived risk scores to augment and organize care. TriageHF Plus is a device-based HF clinical pathway (DHFP) that uses remote monitoring alerts to trigger structured telephone assessment for HF stability and optimization. We aimed to evaluate the impact of TriageHF Plus on hospitalizations and describe the associated workforce burden. METHODS AND RESULTS: TriageHF Plus was a multi-site, prospective study that compared outcomes for patients recruited between April 2019 and February 2021. All alert-triggered assessments were analysed to determine the appropriateness of the alert and the workload burden. A negative-binomial regression with inverse probability treatment weighting using a time-matched usual care cohort was applied to estimate the effect of TriageHF Plus on non-elective hospitalizations. A post hoc pre-COVID-19 sensitivity analysis was also performed. The TriageHF Plus cohort (n = 443) had a mean age of 68.8 ± 11.2 years, 77% male (usual care cohort: n = 315, mean age of 66.2 ± 14.5 years, 65% male). In the TriageHF Plus cohort, an acute medical issue was identified following an alert in 79/182 (43%) cases. Fifty assessments indicated acute HF, requiring clinical action in 44 cases. At 30 day follow-up, 39/66 (59%) of initially symptomatic patients reported improvement, and 20 (19%) initially asymptomatic patients had developed new symptoms. On average, each assessment took 10 min. The TriageHF Plus group had a 58% lower rate of hospitalizations across full follow-up [incidence relative ratio: 0.42, 95% confidence interval (CI): 0.23-0.76, P = 0.004]. Across the pre-COVID-19 window, hospitalizations were 31% lower (0.69, 95% CI: 0.46-1.04, P = 0.077). CONCLUSIONS: These data represent the largest real-world evaluation of a DHFP based on multi-parametric risk stratification. The TriageHF Plus clinical pathway was associated with an improvement in HF symptoms and reduced all-cause hospitalizations.

Heart failure care in the Central and Eastern Europe and Baltic region: status, barriers, and routes to improvement.

Despite improvements over recent years, morbidity and mortality associated with heart failure (HF) are higher in countries in the Central and Eastern Europe and Baltic region than in Western Europe. With the goal of improving the standard of HF care and patient outcomes in the Central and Eastern Europe and Baltic region, this review aimed to identify the main barriers to optimal HF care and potential areas for improvement. This information was used to suggest methods to improve HF management and decrease the burden of HF in the region that can be implemented at the national and regional levels. We performed a literature search to collect information about HF epidemiology in 11 countries in the region (Bulgaria, Croatia, Czechia, Estonia, Hungary, Latvia, Lithuania, Poland, Romania, Serbia, and Slovenia). The prevalence of HF in the region was 1.6-4.7%, and incidence was 3.1-6.0 per 1000 person-years. Owing to the scarcity of published data on HF management in these countries, we also collected insights on local HF care and management practices via two surveys of 11 HF experts representing the 11 countries. Based on the combined results of the literature review and surveys, we created national HF care and management profiles for each country and developed a common patient pathway for HF for the region. We identified five main barriers to optimal HF care: (i) lack of epidemiological data, (ii) low awareness of HF, (iii) lack of national HF strategies, (iv) infrastructure and system gaps, and (v) poor access to novel HF treatments. To overcome these barriers, we propose the following routes to improvement: (i) establish regional and national prospective HF registries for the systematic collection of epidemiological data; (ii) establish education campaigns for the public, patients, caregivers, and healthcare professionals; (iii) establish formal HF strategies to set clear and measurable policy goals and support budget planning; (iv) improve access to quality-of-care centres, multidisciplinary care teams, diagnostic tests, and telemedicine/telemonitoring; and (v) establish national treatment monitoring programmes to develop policies that ensure that adequate proportions of healthcare budgets are reserved for novel therapies. These routes to improvement represent a first step towards improving outcomes in patients with HF in the Central and Eastern Europe and Baltic region by decreasing disparities in HF care within the region and between the region and Western Europe.

Building digital patient pathways for the management and treatment of multiple sclerosis.

Recent advances in the field of artificial intelligence (AI) could yield new insights into the potential causes of multiple sclerosis (MS) and factors influencing its course as the use of AI opens new possibilities regarding the interpretation and use of big data from not only a cross-sectional, but also a longitudinal perspective. For each patient with MS, there is a vast amount of multimodal data being accumulated over time. But for the application of AI and related technologies, these data need to be available in a machine-readable format and need to be collected in a standardized and structured manner. Through the use of mobile electronic devices and the internet it has also become possible to provide healthcare services from remote and collect information on a patient's state of health outside of regular check-ups on site. Against this background, we argue that the concept of pathways in healthcare now could be applied to structure the collection of information across multiple devices and stakeholders in the virtual sphere, enabling us to exploit the full potential of AI technology by e.g., building digital twins. By going digital and using pathways, we can virtually link patients and their caregivers. Stakeholders then could rely on digital pathways for evidence-based guidance in the sequence of procedures and selection of therapy options based on advanced analytics supported by AI as well as for communication and education purposes. As far as we aware of, however, pathway modelling with respect to MS management and treatment has not been thoroughly investigated yet and still needs to be discussed. In this paper, we thus present our ideas for a modular-integrative framework for the development of digital patient pathways for MS treatment.

Supportive Care Needs of Newly Diagnosed Cancer Patients in a Comprehensive Cancer Center: Identifying Care Profiles and Future Perspectives.

The prompt introduction of supportive care for patients with cancer leads to a better quality of life, potential survival benefits, and improvements in treatment safety. Considering that patients' needs vary, descriptive assessments could serve as a compass for an efficient and prompt healthcare response. The aim of this study was to identify supportive care needs in newly diagnosed patients according to cancer type. A retrospective study was conducted by collecting data from the case consultation and medical records of a comprehensive cancer center in France. Patients' needs were divided into twelve domains: nutrition, psychological support, psychiatric support, social care, physiotherapy, addictology, pain management, palliative care, pharmacology, complementary and alternative practice (CAM), sexual health, and speech therapy. Out of 6217 newly diagnosed patients of various cancer types who sought medical care at Gustave Roussy in 2021, 2541 (41%) required supportive cancer care (SCC), and of them, 1331 patients (52%) required two or more different SCC specialist interventions. The top five interventions were dietary (for 60% of patients), physiotherapy (33%), psychology (29%), social care (28%), and pain management (16%). Subgroup analysis according to cancer department highlighted additional specific needs: CAM for breast cancer patients (11%), speech specialist (27%) and addictologist (22%) interventions for ENT patients, psychiatry consultations for neurological patients (16%), and palliative care for dermatology patients (23%). The aforementioned data suggest that an early, multidisciplinary supportive care intervention should be required. Assembling human resources at the time of diagnosis within a dedicated day unit would be the next appropriate step in developing personalized care pathways related to the highlighted needs.

Diagnostic flow for all patients referred with non-specific symptoms of cancer to a diagnostic centre in Denmark: A descriptive study.

BACKGROUND: Since 2012, Cancer Patient Pathways for Non-specific Symptoms and Signs of Cancer (NSSC-CPP) have been implemented in Scandinavia and UK. OBJECTIVES: This study aimed to describe the diagnostic flow for all patients referred from 1 January to 30 June 2020 to the NSSC-CPP in the Diagnostic Centre in Farsø (DC-F), Denmark. METHODS: During the study period, we prospectively recorded information on the diagnostic flow, including: pathway trajectory, symptoms and findings leading to referral, diagnostic procedures and diagnoses at the end of DC Farsø work-up and within 6-months for all patients referred to the NSSC-CPP in DC Farsø using electronic patient files and the Danish National Patient Registry (DNPR). RESULTS: Of the 314 referrals to DC Farsø, 227 had diagnostic work-up in DC Farsø, the remaining were redirected to other CPPs (n = 11), outpatient clinics (n = 45) or redirected to general practice (n = 25). Of total referrals, 25 (8%) received a malignant diagnosis, 20 (6%) a non-malignant but clinically relevant diagnosis with initiation of treatment, 16 (5%) a non-malignant diagnosis but no treatment needed and in 253 (81%) referrals no severe new condition was diagnosed. Two (1%) additional malignancies were diagnosed within a 6-month follow-up period. CONCLUSION: By tracking all patients referred to the NSSC-CPP in DC Farsø, including those redirected, this is the first study to describe the diagnostic flow for all patients referred to a diagnostic centre in Denmark. This knowledge is important for further organisation and planning of the NSSC-CPP.

Eight percent of NSSC-CPP referrals yielded cancer diagnoses, with two additional cancers diagnosed in a 6-month follow-up.Over one-fourth of referrals to NSSC-CPP were redirected to other departments or general practitioners.This study outlines the diagnostic flow for all NSSC-CPP-referred patients, offering unique insights crucial for comparing European diagnostic practices.

How Person-Centred Is Cardiac Rehabilitation in England? Using Bourdieu to Explore Socio-Cultural Influences and Personalisation.

The National Health Service (NHS) cardiac rehabilitation patient care pathway has remained largely unchanged for many years despite, on average, half of all eligible patients declining to engage. To investigate reasons for non-engagement, we explored the experiences of ten cardiac patients who participated in cardiac rehabilitation, dropped out, or declined, as well as experiences of seven people deemed significant others by participants. Our ethnographic study involved participant observations, repeat in-depth semi-structured interviews, and reflexive journaling. Reflexive thematic analysis was conducted, focusing on participants' lived experiences. Utilising Bourdieusian concepts of habitus, capital, and field, this article highlights how personal biography, material conditions, and dispositional inclinations combine to make cardiac health care decision-making individual and complex. Despite this, health professionals were not always attuned to specific circumstances arising from differences in patients' experiences and lifeworlds. By considering service improvement recommendations that acknowledge socio-cultural influences, cardiac rehabilitation can work towards providing patients and their significant others with more appropriate, personalised, and person-centred support.

[Overview of the implementation of pharmaceutical interviews in pharmacies in France: Analysis of responses to a questionnaire]. / État des lieux de la mise en place en France des entretiens pharmaceutiques en officine : analyse des réponses issues d'un questionnaire.

OBJECTIVE: To evaluate the development of pharmaceutical interviews in pharmacies in France, in order to understand the organization implemented, any limitations and the expansion of eligible pathologies. METHOD: A dematerialized questionnaire was designed and distributed between November 2022 and February 2023 to pharmacists and pharmacy students in France (mainland and overseas) via a link to a Google Form. RESULTS: Ninety-four pharmacists from 8 different regions of France responded to the survey. The 94 responses showed that 56% of pharmacists practiced pharmaceutical interviews. Among pharmacists who practiced interviews, pharmacy owners practiced significantly more interviews than other statuses within the pharmacy (67% vs. 38% P=0.014). No other factor, such as dispensary size or geographical area of practice, had a significant impact on whether or not pharmaceutical interviews were carried out. These talks are often carried out at the patient's request, and 89% of them are accompanied by documents for the patient's attention. For pharmacists who do not carry out interviews, time, staffing and remuneration are the 3 main blocking factors found in both quantitative and verbatim variables. Whether or not pharmacists carry out pharmaceutical interviews, this activity received 87% approval from the 94 respondents, and 84% of them would like to include more chronic disease themes. CONCLUSION: The survey shows that pharmacists approve of the pharmaceutical interviewing activity, but it also highlights obvious logistical obstacles linked to a lack of resources. Thus, even among pharmacists who carry out pharmaceutical interviews, this activity is still carried out relatively infrequently on a routine basis, and often by the incumbent pharmacist, who takes on the responsibility of carrying out this activity.

[Cooperation protocol for imaging prescription by the emergency department IOA]. / Protocole de coopération de prescription d'imagerie par l'IOA des urgences.

According to a study carried out at Caen University Hospital by Dr. Kevin Planchon between September 2021 and April 2022, waiting time in the emergency department was reduced by 33minutes thanks to the simplification of the patient pathway and the time given to teams to implement the cooperation protocol.

Toward an Interdisciplinary Approach to Constructing Care Delivery Pathways From Electronic Health Care Databases to Support Integrated Care in Chronic Conditions: Systematic Review of Quantification and Visualization Methods.

BACKGROUND: Electronic health care databases are increasingly used for informing clinical decision-making. In long-term care, linking and accessing information on health care delivered by different providers could improve coordination and health outcomes. Several methods for quantifying and visualizing this information into data-driven care delivery pathways (CDPs) have been proposed. To be integrated effectively and sustainably into routine care, these methods need to meet a range of prerequisites covering 3 broad domains: clinical, technological, and behavioral. Although advances have been made, development to date lacks a comprehensive interdisciplinary approach. As the field expands, it would benefit from developing common standards of development and reporting that integrate clinical, technological, and behavioral aspects. OBJECTIVE: We aimed to describe the content and development of long-term CDP quantification and visualization methods and to propose recommendations for future work. METHODS: We conducted a systematic review following the PRISMA (Preferred Reporting Items for Systematic Reviews and Meta-Analyses) recommendations. We searched peer-reviewed publications in English and reported the CDP methods by using the following data in the included studies: long-term care data and extracted data on clinical information and aims, technological development and characteristics, and user behaviors. The data are summarized in tables and presented narratively. RESULTS: Of the 2921 records identified, 14 studies were included, of which 13 (93%) were descriptive reports and 1 (7%) was a validation study. Clinical aims focused primarily on treatment decision-making (n=6, 43%) and care coordination (n=7, 50%). Technological development followed a similar process from scope definition to tool validation, with various levels of detail in reporting. User behaviors (n=3, 21%) referred to accessing CDPs, planning care, adjusting treatment, or supporting adherence. CONCLUSIONS: The use of electronic health care databases for quantifying and visualizing CDPs in long-term care is an emerging field. Detailed and standardized reporting of clinical and technological aspects is needed. Early consideration of how CDPs would be used, validated, and implemented in clinical practice would likely facilitate further development and adoption. TRIAL REGISTRATION: PROSPERO CRD42019140494; https://www.crd.york.ac.uk/prospero/display_record.php?RecordID=140494. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): RR2-10.1136/bmjopen-2019-033573.

[Assessment of compliance and patient pathway among multiple sclerosis patients on disease modifying treatment]. / Compliance- és betegútvizsgálat betegségmódosító kezelés alatt álló sclerosis multiplexes betegeknél.

Background and purpose:

Epidemiological data and the number of patients treated suggest that the proportion of Hungarian patients with Multiple Sclerosis (MS) receiving disease-modifying therapy (DMT) is lower than in some neighboring countries. We investigated possible reasons for this.

First we analysed patient compliance based on an anonymised database of the National Health Insurance Fund (NHIF). A total of 5441 patients were included in the analysis from NHIF prescription data from 1 July 2014 to 28 February 2021. In the second part of the study, a quantitative and qualitative assessment of patient journeys of MS patients was conducted. 

The compliance of Hungarian MS patients is good compared to international MS treatment data and outstanding compared to other neurological and other diseases, e.g. cardiovascular. This cannot be said about the results of the patient pathway analysis based on patient interviews. Patients indicated that they often have difficulty accessing public health care. Tracing their pathways revealed that they needed to see 3-5 doctors (general practitioner, various specialists) before a diagnosis was made. However, they gave positive feedback about MS Centres. They trusted their doctors, found them empathetic, but they would have liked more time to discuss lifestyle issues.

Compared to some neighbou­ring countries, Hungary has a lower proportion of patients with treated MS, which, given the good compliance of patients, highlights the problem of patient path in Hungary. Further training of fellow physicians is also a task for neurologists specialising in MS. Just as the most common symptoms of stroke have been successfully introduced into the public consciousness, the same can be the aim for MS.

Analytical methods for identifying sequences of utilization in health data: a scoping review.

BACKGROUND: Healthcare, as with other sectors, has undergone progressive digitalization, generating an ever-increasing wealth of data that enables research and the analysis of patient movement. This can help to evaluate treatment processes and outcomes, and in turn improve the quality of care. This scoping review provides an overview of the algorithms and methods that have been used to identify care pathways from healthcare utilization data. METHOD: This review was conducted according to the methodology of the Joanna Briggs Institute and the Preferred Reporting Items for Systematic Reviews Extension for Scoping Reviews (PRISMA-ScR) Checklist. The PubMed, Web of Science, Scopus, and EconLit databases were searched and studies published in English between 2000 and 2021 considered. The search strategy used keywords divided into three categories: the method of data analysis, the requirement profile for the data, and the intended presentation of results. Criteria for inclusion were that health data were analyzed, the methodology used was described and that the chronology of care events was considered. In a two-stage review process, records were reviewed by two researchers independently for inclusion. Results were synthesized narratively. RESULTS: The literature search yielded 2,865 entries; 51 studies met the inclusion criteria. Health data from different countries ([Formula: see text]) and of different types of disease ([Formula: see text]) were analyzed with respect to different care events. Applied methods can be divided into those identifying subsequences of care and those describing full care trajectories. Variants of pattern mining or Markov models were mostly used to extract subsequences, with clustering often applied to find care trajectories. Statistical algorithms such as rule mining, probability-based machine learning algorithms or a combination of methods were also applied. Clustering methods were sometimes used for data preparation or result compression. Further characteristics of the included studies are presented. CONCLUSION: Various data mining methods are already being applied to gain insight from health data. The great heterogeneity of the methods used shows the need for a scoping review. We performed a narrative review and found that clustering methods currently dominate the literature for identifying complete care trajectories, while variants of pattern mining dominate for identifying subsequences of limited length.

Development and implementation of the lung volume reduction pulmonary rehabilitation tool to identify eligibility for lung volume reduction in people with chronic obstructive pulmonary disease during pulmonary rehabilitation.

BACKGROUND: Completion of pulmonary rehabilitation is recognised in chronic obstructive pulmonary disease (COPD) guidelines as a key opportunity to consider systematically whether a respiratory review to assess potential suitability for a lung volume reduction (LVR) procedure might be appropriate. We describe the development of a simple decision-support tool (the LVR-PR tool) to aid clinicians working in pulmonary rehabilitation, to operationalise this process. METHODS: We took an iterative mixed methods approach, which was partnership-based and involved an initial consensus survey, focus groups and an observational study cohort at multiple pulmonary rehabilitation centres. RESULTS: Diagnosis (97%), exercise capacity (84%), breathlessness (78%) and co-morbidities (76%) were acknowledged to be essential items for assessing basic LVR eligibility. Collating prior investigations and assessing patient understanding were considered useful but not essential. Clinician concerns included; streamlining the tool; access to clinical information and investigations; and care needed around introducing LVR therapies to patients in a PR setting. Access to clearer information about LVR procedures, the clinician's role in considering eligibility and how educational resources should be delivered were identified as important themes from patient group discussions. The LVR-PR tool was considered to be feasible and valid for implementation in a variety of PR services across the UK subject to the provision of appropriate health professional training. Clinicians working in specialist LVR centres across the UK who were not otherwise involved in the development process confirmed the tool's validity using the content validity index (CVI). INTERPRETATION: The LVR-PR tool appears to be an acceptable tool that can be feasibly implemented in PR services subject to good quality educational resources for both patients and healthcare professionals.

[Nursing consultations in pain assessment and treatment facilities]. / La consultation infirmière en structure d'évaluation et de traitement de la douleur.

The concept of nursing consultation takes on its full meaning with people suffering from chronic pain. The Société française d'étude et de traitement de la douleur (French Society for the Study and Treatment of Pain), and more specifically its professional nursing commission, has drawn up a reference framework of consultation activities on which pain resource nurses (PRNs) can draw. This describes the various stages in the management of chronic pain patients. In view of the needs and expectations expressed by the population in terms of care, the PRN function is likely to evolve towards that of advanced practice nurse.

Evaluating TB diagnosis and care in the Union of the Comoros.

SETTING: The Union of the Comoros has experienced a persistent notification gap in TB cases despite several strategic changes, including molecular diagnosis and contact investigation. We therefore performed a TB patient pathway analysis (PPA) under the National Tuberculosis Programme (NTP). OBJECTIVE: To assess the alignment of healthcare-seeking behaviour and TB service availability to clarify the reasons for these missing cases. DESIGN: Three primary data sources, including a national list of health facilities, TB surveillance data and care-seeking behaviour data, were analysed at the national and regional levels to determine access to TB diagnosis and the initial point of care-seeking. Summary data were visualised using the standardised PPA Wizard programme, and the analysis was completed using demographic and socio-economic data. RESULTS: At the initial point of care-seeking, 18% of patients had access to TB services, available only in nine centralised public health facilities. Furthermore, 30% of patients initially consulted in the informal sector and 45% in the formal public or private sector in health facilities, both of which lacked the capacity for TB diagnosis or first-line treatment. CONCLUSION: The concentration of and limited access to TB services at the intermediate and central levels of care indicate a need for decentralisation efforts.

CONTEXTE: L'Union des Comores a enregistré un déficit persistant de notifications de cas de TB malgré plusieurs changements stratégiques, comme la mise en place du diagnostic moléculaire et de la recherche des contacts. Nous avons donc réalisé une analyse du parcours des patients atteints de TB dans le cadre du Programme national de lutte contre la TB (NTP). OBJECTIF: Évaluer la concordance entre le comportement en matière de recherche de soins et la disponibilité des services de lutte contre la TB afin de clarifier les raisons de ces cas manquants. MÉTHODES: Trois sources de données primaires, dont une liste nationale des établissements de santé, des données de surveillance de la TB et des données sur les comportements en matière de recherche de soins, ont été analysées aux niveaux national et régional pour déterminer l'accès au diagnostic de la TB et le point initial de la recherche de soins. Les données récapitulatives ont été visualisées à l'aide du programme Wizard d'analyse standardisée du parcours du patient, et l'analyse a été complétée à l'aide de données démographiques et socio-économiques. RÉSULTATS: Au point de départ de la recherche de soins, 18% des patients avaient accès aux services de lutte contre la TB, disponibles uniquement dans neuf établissements de santé publics centralisés. Par ailleurs, 30% des patients ont initialement consulté dans le secteur informel et 45% dans le secteur formel (établissements de santé publics ou privés), qui manquent tous deux des capacités nécessaires au diagnostic de la TB ou au traitement de première ligne. CONCLUSION: La concentration et l'accès limité aux services de lutte contre la TB aux niveaux intermédiaire et central de soins sont révélateurs des efforts à entreprendre en matière de décentralisation.