Clinical effectiveness of drop-in mental health services at paediatric hospitals: A non-randomised multi-site study for children and young people and their families - study protocol.

BACKGROUND: Despite the high prevalence of mental health difficulties in children and young people with long-term health conditions (LTCs), these difficulties and experiences are often overlooked and untreated. Previous research demonstrated the effectiveness of psychological support provided via a drop-in mental health centre located in a paediatric hospital. The aim of this prospective non-randomised single-arm multi-centre interventional study is to determine the clinical effectiveness of drop-in mental health services when implemented at paediatric hospitals in England. METHODS: It is hypothesised that families who receive psychological interventions through the drop-in services will show improved emotional and behavioural symptoms. Outcomes will be measured at baseline and at 6-month follow-up. The primary outcome is the difference in the total difficulties score on the Strengths and Difficulties Questionnaire (SDQ) reported by parent or child at 6 months. Secondary outcomes include self and parent reported Paediatric Quality of Life Inventory (PedsQL), self-reported depression (PHQ-9) and anxiety measures (GAD-7) and family satisfaction (CSQ-8). DISCUSSION: This trial aims to determine the clinical effectiveness of providing psychological support in the context of LTCs through drop-in mental health services at paediatric hospitals in England. These findings will contribute to policies and practice addressing mental health needs in children and young people with other long-term health conditions. TRIAL REGISTRATION: ISRCTN15063954, Registered on 9 December 2022.

Holistic management of patients with progressive pulmonary fibrosis.

Progressive pulmonary fibrosis (PF) is a complex interstitial lung disease that impacts substantially on patients' daily lives, requiring personalised and integrated care. We summarise the main needs of patients with PF and their caregivers, and suggest a supportive care approach. Individualised care, education, emotional and psychological support, specialised treatments, and better access to information and resources are necessary. Management should start at diagnosis, be tailored to the patient's needs, and consider end-of-life care. Pharmacological and non-pharmacological interventions should be individualised, including oxygen therapy and pulmonary rehabilitation, with digital healthcare utilised as appropriate. Further research is needed to address technical issues related to oxygen delivery and digital healthcare. Educational aims: To identify the main needs of patients with PF and their caregivers.To describe the components of a comprehensive approach to a supportive care programme for patients with PF.To identify further areas of research to address technical issues related to the management of patients with PF.

I-PreFer Study: A Discrete Choice Experiment to Explore Patient, Caregiver and Pulmonologist Preferences of Idiopathic Pulmonary Fibrosis Pharmacological Treatment Options.

Purpose: Idiopathic pulmonary fibrosis (IPF) is a chronic, progressive, and ultimately fatal lung disease that, while rare, has seen incidence rise over time. There is no cure for IPF other than a lung transplant, though two antifibrotic (AF) drugs do exist to slow disease progression. While these drugs are efficacious, they are both associated with differing profiles of adverse events. This study aimed to elicit patient, caregiver and pulmonologist preferences on the treatment profiles of AFs via a discrete choice experiment (DCE). Patients and Methods: The DCE and associated survey were distributed across 7 European countries, and bespoke DCEs were developed for patients/caregivers and pulmonologists. After collaboration with European Pulmonary Fibrosis & Related Disorders Federation (EU-PFF) and expert pulmonologists, respectively, a patient/caregiver DCE with 5 attributes and a pulmonologist DCE with 6 attributes were finalized. The DCEs had a blocked approach to reduce participant burden and were distributed on an online survey platform. Preferences were estimated through conditional multinomial logit regression analysis. Results: Ninety-five patients, 22 caregivers and 115 pulmonologists fully completed their respective DCEs. Overall, patients and caregivers preferred management of treatment-related adverse events over both survival benefits and disease progression. Nearly all preference levels were found to be significantly different from their reference level. In contrast, pulmonologists showed a greater preference for control of lung function and exacerbations over adverse events. Although there were relative differences between the univariate subgroups in terms of the preference weights, most of these were not statistically significant. Conclusion: The outcomes from this study suggest that while patients and caregivers had similar preferences for characteristics of IPF treatments, pulmonologists did not share those same preferences. Patients and caregivers preferred safety, while pulmonologists preferred efficacy. These differences should be considered by clinicians to better involve the patient in treatment decision-making for IPF.

I-PreFer Study: A Questionnaire to Explore Patient, Caregiver and Pulmonologist Preferences of Idiopathic Pulmonary Fibrosis Treatment Options.

Introduction: Idiopathic Pulmonary Fibrosis (IPF) is a rare disease that causes shortness of breath, dry cough, and tiredness. While there is no cure for IPF, current therapeutic treatments aim to slow lung degeneration while managing side effects. There is little known about patient experience and attitude with regards to their disease and medication. Purpose: To understand the perceptions, behaviors and drivers of treatment decision-making among patients, caregivers and pulmonologists in IPF. Patients and Methods: Online surveys to patients with IPF, caregivers and pulmonologists were developed and administered in Belgium, Finland, France, Greece (pulmonologists only), the Netherlands, Ireland and the United Kingdom between November 2021 and January 2022. Results: A total of 111 patients, 22 caregivers and 140 pulmonologists participated. Half (47%) of patients rated their disease as "severe", while pulmonologists reported that a quarter of their patients had a low Forced Vital Capacity (FVC) (below 50% of the predicted value). Between 21% and 42% of the patients do not take an IPF medication (patients' perception) or antifibrotic (physicians' perception). Pulmonologists reported that a total of 58% of their patients were receiving antifibrotic medication, any IPF medication, while around 53%, 55%, 35% and 73% of the patients limited their exposure (sometimes or often) to the sun due to IPF, considered taking medication against diarrhea, nausea/vomiting and heartburn, respectively. Treatment adherence was relatively high (81%), in line with the caregivers' view and the pulmonologists' expectations. Overall, cultural, clinical or socio-demographic factors impacted patients' perceptions or behaviors. Conclusion: This study shows there is a significant proportion of IPF patients who remain untreated, a misalignment of disease severity between patients and their physicians and patient background impacts behavior. Overall, more in-depth patient-physician communication is needed to improve treatment experience.

An Epidemiological Study of Lung Cancer and Selected Other Cancers among Namibian Uranium Workers.

The Rössing Uranium Limited (RUL) open-cast uranium mine in Namibia has operated since 1976. Studies of underground uranium miners from Europe and North America have shown increased cancer risks (principally lung cancer). We explored the association between radiation doses and selected cancers in RUL mineworkers. Employees with at least one-year of continuous employment between 1976 and 2010 were included. Incident cancer cases [lung, extra-thoracic airways (ETA), leukemia, brain and kidney] occurring before the end of 2015 were identified from the Namibian and South African National Cancer Registries, and RUL's occupational health provider. Using a case-cohort design, data on exposure and confounding factors were collected for all cancer cases among the study cohort and a stratified random sample (sub-cohort) of the cohort, including cases. Radiation doses were estimated based on annual dose records held by RUL. In total, 76 cancer cases (32 lung, 18 ETA, 8 leukemia, 9 brain, 9 kidney) and a sub-cohort of 1,121 sampled from 7,901 RUL employees were included. A weighted Cox model, adjusted for available known confounders, produced a rate ratio (95% CI) for lung cancer of 1.42 (0.42, 4.77) and 1.22 (0.26, 5.68), respectively, for medium and higher cumulative lung dose categories compared to the lower category, and 1.04 (0.95, 1.13) for a dose increase of 10 mSv. This study faced considerable challenges with respect to case ascertainment, exposure estimates, and ensuring accuracy of key variables. Persuasive consistent evidence for elevated cancer risk was not found for radiation or other exposures studied at the Rössing uranium mine.

Clinical trial simulations in pulmonary fibrosis: patient-focused insights and adaptations.

Background: Patient recruitment and retention are a challenge when conducting clinical trials in patients with pulmonary fibrosis, including idiopathic pulmonary fibrosis and other interstitial lung diseases. This study aimed to understand and address the barriers associated with trial participation for these populations. Methods: Nine patients, nine caregivers and three healthcare professionals participated in virtual simulations of planned phase III trials. During the simulations, participants received information about the trials and either tested a home spirometry device or watched a home spirometry demonstration, before providing their insights in debriefs. The findings were interpreted in advisory boards with representatives from patient organisations and expert investigators. Results: Regarding barriers to participation, patient fatigue and breathlessness were emphasised as posing challenges for travel, visit length and completion of onsite assessments. Lack of information, support and appreciation were also identified as factors that may exacerbate anxiety and negatively affect participant retention rates. Feedback on the home spirometry was mixed, with participants appreciating being able to complete the test at home but worrying about device handling. Based on the insights gained, patient-friendly adaptations were made to the trial protocol and conduct, including remote assessment of patient-reported outcomes, increased visit flexibility, travel support services, patient and caregiver information campaigns, and training of investigators on patients' needs. Conclusions: Participants identified important barriers to participation, which led to patient-friendly changes being made to the planned trials. As a result, participation in the planned trials should be less burdensome, with improved recruitment and retention rates, and ultimately, improved data quality.

Progressive pulmonary fibrosis: an expert group consensus statement.

This expert group consensus statement emphasises the need for standardising the definition of progressive fibrosing interstitial lung diseases (F-ILDs), with an accurate initial diagnosis being of paramount importance in ensuring appropriate initial management. Equally, case-by-case decisions on monitoring and management are essential, given the varying presentations of F-ILDs and the varying rates of progression. The value of diagnostic tests in risk stratification at presentation and, separately, the importance of a logical monitoring strategy, tailored to manage the risk of progression, are also stressed. The term "progressive pulmonary fibrosis" (PPF) exactly describes the entity that clinicians often face in practice. The importance of using antifibrotic therapy early in PPF (once initial management has failed to prevent progression) is increasingly supported by evidence. Artificial intelligence software for high-resolution computed tomography analysis, although an exciting tool for the future, awaits validation. Guidance is provided on pulmonary rehabilitation, oxygen and the use of non-invasive ventilation focused specifically on the needs of ILD patients with progressive disease. PPF should be differentiated from acute deterioration due to drug-induced lung toxicity or other forms of acute exacerbations. Referral criteria for a lung transplant are discussed and applied to patient needs in severe diseases where transplantation is not realistic, either due to access limitations or transplantation contraindications. In conclusion, expert group consensus guidance is provided on the diagnosis, treatment and monitoring of F-ILDs with specific focus on the recognition of PPF and the management of pulmonary fibrosis progressing despite initial management.

A Framework for Case-Based Learning in Prehospital Medicine: The London's Air Ambulance Experience.

Clinical governance is the framework around which health care organizations can maintain a higher standard of safety and care. One of the central aspects of clinical governance is continuous professional education, including case-based review and case-based learning. In this article, we present the case-based education process in use at London's Air Ambulance, a mature advanced prehospital system in London, UK. The case review process begins with an on-scene hot debrief, an informal process often involving other emergency services. This is usually followed by internal team feedback and debrief and patient follow-up. All cases are then reviewed over the next 24 to 48 hours by the duty prehospital consultant (attending) in the rapid review process. After this, certain cases are volunteered or selected for discussion in the twice weekly death and disability (D&D) meeting or the monthly dispatch meeting. A small subset of cases is highlighted through this process for full formal audit and presentation at the monthly clinical governance meetings based on their educational value. Another subset of cases involving a fatality is also discussed at the monthly clinical pathology correlation meeting with the input of local forensic pathologists. Organization of the process, structure of the meetings, and educational value are described in detail.

Self-management in chronic lung disease: what is missing?

Self-management, as a strategy to support those living with chronic respiratory conditions such as asthma and COPD, has been widely advocated in guidelines and adopted in practice. However, there can be a disconnect between the goals of patients and healthcare professionals. Goals and barriers to self-management are often compounded by the complex social, emotional and medical needs of patients. People living with chronic respiratory conditions also often have symptoms of anxiety and depression, which can impact on self-management. Self-management therefore requires patients and healthcare professionals to work together and it is essential to involve patients when designing, implementing and evaluating self-management interventions. Patient preferences are clearly important and goal setting needs an individual, flexible and responsive approach from healthcare professionals, which aligns to a more personalised approach to management of treatable traits and the burden of disease. To achieve these goals, healthcare professionals need education to support patients in self-management and behaviour change. This approach should lead to shared decision-making and partnership working that puts the patient right at the centre of their care.

Transfer and persistence of bovine immunoglobulins in lambs fed a colostrum replacer.

BACKGROUND: Colostrum-derived antibodies are crucial for the protection of newborn lambs from infectious diseases. Several colostrum replacer products that contain bovine antibodies are on the market. We investigated the absorption and persistence of bovine antibodies from a powdered colostrum replacer in newborn lambs. METHODS: We tested a lamb colostrum replacer containing bovine serum in lambs that were separated from their dams at birth. Immunoglobulin G (IgG) uptake was analysed by ELISA, and the persistence of antigen-specific antibodies was analysed by parainfluenza 3 virus (PI-3) neutralisation assay. RESULTS: Serum antibody ELISA performed on days 1 and 14 revealed IgG levels of 17.9 ± 2.8 and 27.5 ± 2.5 mg/ml, respectively. PI-3 antibodies derived from the colostrum replacer were present for 86.3 ± 10.6 days. CONCLUSIONS: Antibodies derived from bovine serum protein delivered to lambs via a commercial colostrum replacer are readily absorbed and persist for months, suggesting that these products may offer adequate protection.

Interstitial lung disease and specialist palliative care access: a healthcare professionals survey.

BACKGROUND: Fibrotic interstitial lung disease is an incurable disease with poor prognosis. We aimed to understand factors affecting decisions regarding referrals to specialist palliative care services and to address barriers and facilitators to referrals from healthcare professionals' perspectives. METHODS: A survey study of healthcare professionals, including respiratory physicians, interstitial lung disease nurse specialists, respiratory nurse specialists and palliative care physicians, was conducted using a questionnaire, entailing 17 questions. RESULTS: Thirty-six respondents, including 15 interstitial lung disease nurse specialists completed the questionnaire. Symptom control, psychological/spiritual support, general deterioration and end-of-life care were the most common reasons for referrals to specialist palliative care services. Most respondents felt confident in addressing palliative care needs and discussing palliative care with patients. A few participants emphasised that experienced respiratory nurse specialists are well placed to provide symptom management and to ensure continuity of patient care. Participants reported that access to palliative care could be improved by increasing collaborative work between respiratory and palliative care teams. CONCLUSIONS: Most respondents felt that enhancing access to specialist palliative care services would benefit patients. However, palliative care and respiratory care should not be considered as mutually exclusive and multidisciplinary approach is recommended.

Less-Invasive Surfactant Administration for Neonatal Respiratory Distress Syndrome: A Consensus Guideline.

INTRODUCTION: Less-invasive surfactant administration (LISA) is a method of surfactant delivery to preterm infants for treating respiratory distress syndrome (RDS), which can reduce the composite risk of death or bronchopulmonary dysplasia and the time on mechanical ventilation. METHODS: A systematic literature search of studies published up to April 2021 on minimally invasive catheter surfactant delivery in preterm infants with RDS was conducted. Based on these studies, with parental feedback sought via an online questionnaire, 9 UK-based specialists in neonatal respiratory disease developed their consensus for implementing LISA. Recommendations were developed following a modified, iterative Delphi process using a questionnaire employing a 9-point Likert scale and an a priori level of agreement/disagreement. RESULTS: Successful implementation of LISA can be achieved by training the multidisciplinary team and following locally agreed guidance. From the time of the decision to administer surfactant, LISA should take <30 min. The comfort of the baby and requirements to maintain non-invasive respiratory support are important. While many infants can be managed without requiring additional sedation/analgesia, fentanyl along with atropine may be considered. Parents should be provided with sufficient information about medication side effects and involved in treatment discussions. CONCLUSION: LISA has the potential to improve outcomes for preterm infants with RDS and can be introduced as a safe and effective part of UK-based neonatal care with appropriate training.

Patient Reported Experiences and Delays During the Diagnostic Pathway for Pulmonary Fibrosis: A Multinational European Survey.

Introduction: Pulmonary fibrosis includes a spectrum of diseases and is incurable. There is a variation in disease course, but it is often progressive leading to increased breathlessness, impaired quality of life, and decreased life expectancy. Detection of pulmonary fibrosis is challenging, which contributes to considerable delays in diagnosis and treatment. More knowledge about the diagnostic journey from patients' perspective is needed to improve the diagnostic pathway. The aims of this study were to evaluate the time to diagnosis of pulmonary fibrosis, identify potential reasons for delays, and document patients emotions. Methods: Members of European patient organisations, with a self-reported diagnosis of pulmonary fibrosis, were invited to participate in an online survey. The survey assessed the diagnostic pathway retrospectively, focusing on four stages: (1) time from initial symptoms to first appointment in primary care; (2) time to hospital referral; (3) time to first hospital appointment; (4) time to final diagnosis. It comprised open-ended and closed questions focusing on time to diagnosis, factors contributing to delays, diagnostic tests, patient emotions, and information provision. Results: Two hundred and seventy three participants (214 idiopathic pulmonary fibrosis, 28 sarcoidosis, 31 other) from 13 countries responded. Forty percent of individuals took ≥1 year to receive a final diagnosis. Greatest delays were reported in stage 1, with only 50.2% making an appointment within 3 months. For stage 2, 73.3% reported a hospital referral within three primary care visits. However, 9.9% reported six or more visits. After referral, 76.9% of patients were assessed by a specialist within 3 months (stage 3) and 62.6% received a final diagnosis within 3 months of their first hospital visit (stage 4). Emotions during the journey were overall negative. A major need for more information and support during and after the diagnostic process was identified. Conclusion: The time to diagnose pulmonary fibrosis varies widely across Europe. Delays occur at each stage of the diagnostic pathway. Raising awareness about pulmonary fibrosis amongst the general population and healthcare workers is essential to shorten the time to diagnosis. Furthermore, there remains a need to provide patients with sufficient information and support at all stages of their diagnostic journey.

Risk factors influencing fracture characteristics in postoperative periprosthetic femoral fractures around cemented stems in total hip arthroplasty : a multicentre observational cohort study on 584 fractures.

AIMS: This study evaluates risk factors influencing fracture characteristics for postoperative periprosthetic femoral fractures (PFFs) around cemented stems in total hip arthroplasty. METHODS: Data were collected for PFF patients admitted to eight UK centres between 25 May 2006 and 1 March 2020. Radiographs were assessed for Unified Classification System (UCS) grade and AO/OTA type. Statistical comparisons investigated relationships by age, gender, and stem fixation philosophy (polished taper-slip (PTS) vs composite beam (CB)). The effect of multiple variables was estimated using multinomial logistic regression to estimate odds ratios (ORs) with 95% confidence intervals (CIs). Surgical treatment (revision vs fixation) was compared by UCS grade and AO/OTA type. RESULTS: A total of 584 cases were included. Median age was 79.1 years (interquartile range 72.0 to 86.0), 312 (53.6%) patients were female, and 495 (85.1%) stems were PTS. The commonest UCS grade was type B1 (278, 47.6%). The most common AO/OTA type was spiral (352, 60.3%). Metaphyseal split fractures occurred only with PTS stems with an incidence of 10.1%. Male sex was associated with a five-fold reduction in odds of a type C fracture (OR 0.22 (95% CI 0.12 to 0.41); p < 0.001) compared to a type B fracture. CB stems were associated with significantly increased odds of transverse fracture (OR 9.51 (95% CI 3.72 to 24.34); p < 0.001) and wedge fracture (OR 3.72 (95% CI 1.16 to 11.95); p = 0.027) compared to PTS stems. Both UCS grade and AO/OTA type differed significantly (p < 0.001 and p = 0.001, respectively) between the revision and fixation groups but a similar proportion of B1 fractures underwent revision compared to fixation (45.3% vs 50.6%). CONCLUSION: The commonest fracture types are B1 and spiral fractures. PTS stems are exclusively associated with metaphyseal split fractures, but their incidence is low. Males have lower odds of UCS grade C fractures compared to females. CB stems have higher odds of bending type fractures (transverse and wedge) compared to PTS stems. There is considerable variation in practice when treating B1 fractures around cemented stems. Cite this article: Bone Jt Open 2021;2(7):466-475.

Discussing treatment burden.

Healthcare professionals should help patients to reach informed decisions about treatments in order to maximise benefits while minimising treatment burden https://bit.ly/2XRtRPK.

Stigma from medication use: an under recognised burden of care.

Children with respiratory diseases take treatments for the self-management of symptoms and to maintain disease control. Often, these treatments need to be taken in social environments like school. Respiratory treatments can foster a feeling of difference and stigmatisation, which negatively impact on the quality of life and adherence to treatment. Such perceptions can lead to a less than optimal disease control, a vicious cycle leading to further social exclusion and stigma. This aspect of "burden of treatment" is poorly recognised by clinicians. Recognition of how treatments and clinical practice can contribute to stigma, can help address this burden of care. EDUCATIONAL AIMS: To understand the meaning of the term "stigma" within the context of respiratory health conditions and how medication or treatments can contribute to stigma in children and young people.To understand the potential impact of stigma on adherence, disease control and quality of life.To consider strategies to manage the stigma associated with health treatments across spheres of influence.

Patient's treatment burden related to care coordination in the field of respiratory diseases.

The management of respiratory diseases requires various levels of care: multidisciplinary teams, educational and behavioural interventions, self-management and home-based technical support are vital to ensure adequate care management. However, it is often difficult to access these networks due to fragmentation of patient care and treatment burden. Care coordination aims to ensure patients have a central role and that there is continuity of care among various levels and professionals involved. Moreover, the coronavirus disease pandemic has caused strain on the global healthcare system, with care coordination becoming increasingly important in increasing the resilience of health systems, supporting healthcare professionals and ensuring the right treatment and adequate level of care for these patients.

Early diagnosis of fibrotic interstitial lung disease: challenges and opportunities.

Many patients with interstitial lung disease (ILD) develop pulmonary fibrosis, which can lead to reduced quality of life and early mortality. Patients with fibrotic ILD often have considerable diagnostic delay, and are exposed to unnecessary and costly diagnostic procedures, and ineffective and potentially harmful treatments. Non-specific and insidious presenting symptoms, along with scarce knowledge of fibrotic ILD among primary care physicians and non-ILD experts, are some of the main causes of diagnostic delay. Here, we outline and discuss the challenges facing both patients and physicians in making an early diagnosis of fibrotic ILD, and explore strategies to facilitate early identification of patients with fibrotic ILD, both in the general population and among individuals at highest risk of developing the disease. Finally, we discuss controversies and key uncertainties in screening programmes for fibrotic ILD. Timely identification and accurate diagnosis of patients with fibrotic ILD poses several substantial clinical challenges, but could potentially improve outcomes through early initiation of appropriate management.