Identifying outcome domains to establish a core outcome set for progressive pulmonary fibrosis: a scoping review.

Introduction: People with idiopathic pulmonary fibrosis (IPF) and other forms of progressive pulmonary fibrosis (PPF) have a high symptom burden and a poor health-related quality of life (HRQoL). Despite efforts to offer specialised treatment, clinical care for these patients remains suboptimal and several nonmedical needs remain unaddressed. Developing a core outcome set (COS) can help to identify a minimum set of agreed-upon outcomes that should be measured and acted-upon in clinical care.

Food purchase diversity is associated with market food diversity and diets of children and their mothers but not fathers in rural Tanzania: Results from the EFFECTS baseline survey.

Rural households in East Africa rely on local markets, but the influence of market food diversity and household food purchase diversity on diets has not been well-characterized. We quantify the associations among market food diversity, household food purchase diversity and dietary diversity of mothers, fathers and children in rural Tanzania. This study uses baseline data from a randomized controlled trial, Engaging Fathers for Effective Child Nutrition and Development in Tanzania.

The ATOM-Seq sequence capture panel can accurately predict microsatellite instability status in formalin-fixed tumour samples, alongside routine gene mutation testing.

Microsatellite instability (MSI) occurs across a number of cancers and is associated with different clinical characteristics when compared to microsatellite stable (MSS) cancers. As MSI cancers have different characteristics, routine MSI testing is now recommended for a number of cancer types including colorectal cancer (CRC). Using gene panels for sequencing of known cancer mutations is routinely performed to guide treatment decisions.

A roadmap to precision treatments for familial pulmonary fibrosis.

Interstitial lung diseases (ILDs) in adults and children (chILD) are a heterogeneous group of lung disorders leading to inflammation, abnormal tissue repair and scarring of the lung parenchyma often resulting in respiratory failure and death. Inherited factors directly cause, or contribute significantly to the risk of developing ILD, so called familial pulmonary fibrosis (FPF), and monogenic forms may have a poor prognosis and respond poorly to current treatments. Specific, variant-targeted or precision treatments are lacking.

The Ethical Principles in Ethical Guidance Documents during the COVID-19 Pandemic in the United Kingdom and the Republic of Ireland: A Qualitative Systematic Review.

Background: The sudden onset of the coronavirus disease 2019 (COVID-19) pandemic was accompanied by a myriad of ethical issues that prompted the issuing of various ethical guidance documents for health care professionals in clinical, research, and public health settings throughout the United Kingdom (UK) of Great Britain and Northern Ireland and the Republic of Ireland. The aim of this review was to identify the main principles in ethical guidance documents published in the UK and Ireland during the COVID-19 pandemic.

Methods: This review used a qualitative systematic review methodology with thematic synthesis to analyze the included ethics-related guidance documents, as defined in this review, published in the UK and Ireland from March 2020 through March 2022.

Contribution of Food from Market Purchases and Home Production to Child Nutrient Intake: Evidence from the EFFECTS Study Baseline Data.

Background: Child undernutrition is prevalent in Tanzania, and households rely primarily on local markets and home production as food sources. However, little is known about the contribution of food market purchases to nutrient intakes among children consuming complementary foods.

Objectives: To quantify the relationships between diversity of foods purchased and produced by households and adequate child nutrient intake in Mara, Tanzania.

Contraceptive use in women with mental illness in Soweto, South Africa.

Background: The psychosocial and medical implications of unplanned pregnancy in women with mental illness (MI) are vast. International guidelines make clear recommendations about family planning for women with MI, particularly those exposed to known human teratogens; however, there is limited research related to contraceptive usage among women with MI.

Aim: The aim of this study was to investigate the prevalence of consistent contraceptive use and family planning education (FPE) among a population of women of childbearing age with MI.

Effects of engaging fathers and bundling parenting and nutrition interventions on early child development and maternal and paternal parenting in Mara, Tanzania: a factorial cluster-randomized controlled trial.

Background: Multicomponent interventions are needed to address the various co-occurring risks that compromise early child nutrition and development. We compared the independent and combined effects of engaging fathers and bundling parenting components into a nutrition intervention on early child development (ECD) and parenting outcomes.

Methods: We conducted a 2×2 factorial cluster-randomized controlled trial across 80 villages in Mara Region, Tanzania, also known as EFFECTS (Engaging Fathers for Effective Child Nutrition and Development in Tanzania; ClinicalTrials.

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.

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.

Associations between AI-Assisted Tumor Amphiregulin and Epiregulin IHC and Outcomes from Anti-EGFR Therapy in the Routine Management of Metastatic Colorectal Cancer.

Purpose: High tumor production of the EGFR ligands, amphiregulin (AREG) and epiregulin (EREG), predicted benefit from anti-EGFR therapy for metastatic colorectal cancer (mCRC) in a retrospective analysis of clinical trial data. Here, AREG/EREG IHC was analyzed in a cohort of patients who received anti-EGFR therapy as part of routine care, including key clinical contexts not investigated in the previous analysis.

Experimental Design: Patients who received panitumumab or cetuximab ± chemotherapy for treatment of RAS wild-type mCRC at eight UK cancer centers were eligible.

Effects of engaging fathers and bundling nutrition and parenting interventions on household gender equality and women's empowerment in rural Tanzania: Results from EFFECTS, a five-arm cluster-randomized controlled trial.

Advancing gender equality and women's empowerment (GE/WE) may contribute to better child nutrition and development in low-resource settings. However, few empirical studies have generated evidence on GE/WE and examined the potential of engaging men to transform gender norms and power relations in the context of nutrition and parenting programs. We tested the independent and combined effects of engaging couples and bundling nutrition and parenting interventions on GE/WE in Mara, Tanzania.

European Respiratory Society statement on familial pulmonary fibrosis.

Genetic predisposition to pulmonary fibrosis has been confirmed by the discovery of several gene mutations that cause pulmonary fibrosis. Although genetic sequencing of familial pulmonary fibrosis (FPF) cases is embedded in routine clinical practice in several countries, many centres have yet to incorporate genetic sequencing within interstitial lung disease (ILD) services and proper international consensus has not yet been established. An international and multidisciplinary expert Task Force (pulmonologists, geneticists, paediatrician, pathologist, genetic counsellor, patient representative and librarian) reviewed the literature between 1945 and 2022, and reached consensus for all of the following questions: 1) Which patients may benefit from genetic sequencing and clinical counselling? 2) What is known of the natural history of FPF? 3) Which genes are usually tested? 4) What is the evidence for telomere length measurement? 5) What is the role of common genetic variants (polymorphisms) in the diagnostic workup? 6) What are the optimal treatment options for FPF? 7) Which family members are eligible for genetic sequencing? 8) Which clinical screening and follow-up parameters may be considered in family members? Through a robust review of the literature, the Task Force offers a statement on genetic sequencing, clinical management and screening of patients with FPF and their relatives.

Experiences of South African caregivers disclosing to their children living with HIV: Qualitative investigations.

Awareness of Human Immunodeficiency Virus (HIV) status improves health outcomes in children living with HIV, yet caregivers often delay disclosure. This qualitative investigation explored, through observation, how 30 caregivers responded to a HIV Disclosure study conducted between 2017 and 2020 at Chris Hani Baragwanath Academic Hospital, Soweto, South Africa. Caregivers were assisted in disclosing to their children, aged 7-13 years; followed by a sub-sample of caregivers providing in-depth interviews to elaborate on findings.

Dancing for Health and Wellbeing: A Feasibility Study of Examining Health Impacts of Online Dancing among Pulmonary Fibrosis Patients.

Background: Physical activity (PA) is recommended in the management of patients with pulmonary fibrosis (PF) to improve health outcomes. Dance is one such form of PA which is meaningful, valuable, enjoyable and has demonstrated positive physical and mental health effects.

Methods: With pre-post design, 16 patients, members of the Irish Lung Fibrosis Association, were enrolled in this study.

Assessment of oxyfluorfen-tolerant rice systems and implications for rice-weed management in California.

Background: Weeds are a significant barrier to rice production in California, exacerbated by lack of chemical control options and herbicide-resistance in persistent aquaphilic species. Oxyfluorfen-tolerant rice, created at the Rice Experiment Station (RES) in Biggs, California, was developed to provide an agronomic program for managing problematic grass and sedge rice-weeds including Oryza sativa f. spontanea Roshev.

Syndrome of Combined Pulmonary Fibrosis and Emphysema: An Official ATS/ERS/JRS/ALAT Research Statement.

The presence of emphysema is relatively common in patients with fibrotic interstitial lung disease. This has been designated combined pulmonary fibrosis and emphysema (CPFE). The lack of consensus over definitions and diagnostic criteria has limited CPFE research.

Children's Positive and Negative Emotional Responses to an HIV Disclosure Study in South Africa.

The benefits of HIV status disclosure to children is widely cited. However, few studies have reported how children respond to the process in a longitudinal fashion. This paper describes children's responses, as documented by healthcare providers (HCPs), during a longitudinal disclosure study conducted at Chris Hani Baragwanath Academic Hospital in Soweto, South Africa.

Genetic testing in interstitial lung disease: An international survey.

Background And Objective: Genetic analysis is emerging for interstitial lung diseases (ILDs); however, ILD practices are not yet standardized. We surveyed patients', relatives' and pulmonologists' experiences and needs on genetic testing in ILD to evaluate the current situation and identify future needs.

Methods: A clinical epidemiologist (MT) together with members of the ERS taskforce and representatives of the European Idiopathic Pulmonary Fibrosis and related disorders Federation (EU-IPFF) patient organisation developed a survey for patients, relatives and pulmonologists.

Developing a conceptual model of symptoms and impacts in progressive fibrosing interstitial lung disease to evaluate patient-reported outcome measures.

Background: An understanding of the experience of patients with progressive fibrosing interstitial lung disease (PF-ILD) is needed to select appropriate patient-reported outcome measures (PROMs) to evaluate treatment effect in clinical trials.

Methods: A systematic literature review was conducted to develop a preliminary conceptual model of the symptoms experienced by patients with PF-ILD and the impacts the disease has on them. An online survey and consensus meetings were then conducted with 12-14 stakeholders (patients, clinicians, regulatory and payer advisors) to refine the conceptual model and critically appraise how key concepts should be measured by PROMs.

Gender and Age Differences in Meal Structures, Food Away from Home, Chrono-Nutrition, and Nutrition Intakes among Adults and Children in Tanzania Using a Newly Developed Tablet-Based 24-Hour Recall Tool.

Background: In many regions of the world, little is known about meal structures, meal patterns, and nutrient intake because the collection of quantitative dietary intake is expensive and labor-intensive.

Objectives: We describe the development and field feasibility of a tablet-based Tanzania 24-h recall tool (TZ-24hr-DR) and dietary intakes collected from adults and children in rural and urban settings.

Methods: Using the Tanzanian food-composition table, the TZ-24hr-DR tool was developed on an Android platform using the Open Data Kit.

Impact of Disclosure over Time on the Emotional Well-Being of Children with Perinatally Acquired HIV Infection in South Africa.

Objective: The aim of this study was to describe the disclosure process in children with perinatally acquired HIV infection (PHIV+) and its impact on their emotional well-being and adherence to antiretroviral therapy (ART) in South Africa.

Methods: This prospective cohort study followed PHIV+ children aged 7 to 13 years attending counseling over 18 months. Standardized disclosure tools were used by a counselor with both child and caregiver present.

Perspectives of Interstitial Lung Disease Patients and Carers During COVID-19.

Aim To gain an understanding of the impact of COVID-19 on the daily life, healthcare needs, mental wellbeing and outlook of patients with Interstitial Lung Disease (ILD) and their caregivers. Methods ILD patients and caregivers were invited to participate in a quantitative survey. Respondents could self-select to then participate in in-depth structured telephone interviews.