"It's a Different Conversation": Qualitative Analysis of Pediatric Home-based Hospice/Palliative Care Visits' Perceived Value.

Home-based hospice and/or palliative care (HBHPC) is an important and increasingly utilized aspect of care for children with serious conditions-those with high mortality risk, which either impacts their quality of life or carries a significant caregiver burden. Provider home visits are a core feature; however, the travel time and human resource allocation are significant challenges. Balancing the appropriateness of this allocation requires further characterization of the value of home visits to families and identification of the value domains of HBHPC for caregivers. For study purposes, we defined a "home visit" as an in-person visit by a physician or advanced practice provider to a child's residence. Methods: The methods include a qualitative study using semistructured interviews and a grounded theory analytic framework enrolled caregivers of children aged 1 month to 26 years receiving HBHPC from either of 2 U.S. pediatric quaternary institutions between 2016 and 2021. Results: Twenty-two participants were interviewed; the mean (SD) interview duration was 52.9 (22.6) minutes. The final conceptual model has 6 major themes: communicating effectively, fostering emotional and physical safety, building and maintaining relationships, empowering the family, seeing the bigger picture, and sharing burdens. Conclusions: Caregiver-identified themes demonstrated improved communication, empowerment, and support from receiving HBHPC, which can facilitate enhanced family-centered, goal-concordant care.

Plain language summary and patient perspective of the 2020 lung cancer screening recommendations by the US Preventive Services Task Force.

WHAT IS THIS SUMMARY ABOUT?: This summary describes the research carried out by the United States Preventive Services Task Force (USPSTF for short) during a review and update of their lung cancer screening recommendations made in 2013. The USPSTF reviewed the results of clinical studies that used a type of scan called low dose computed tomography (LDCT for short). They wanted to see how successful LDCT was at finding lung cancers in people ho hadn't shown any physical signs of lung cancer, but had a history of smoking and were over 50 years of age. WHAT WERE THE RESULTS?: The review found that performing yearly LDCT scans in people who are at high risk of developing lung cancer is beneficial, as it means that some patients will be diagnosed earlier than they would be without this type of screening. People considered to be at high risk of developing lung cancer include: Adults aged 50 to 80 years who have smoked a pack of 20 cigarettes per day for 20 years or two packs per day for 10 years; OR Adults aged 50 to 80 years who currently smoke or have stopped smoking within the last 15 years. WHAT DO THE RESULTS OF THE STUDY MEAN?: The information gained from reviewing the research enabled the USPSTF to update their lung cancer screening recommendations.

Plain language summary and patient perspective of the European Society for Medical Oncology expert consensus statements on treating EGFR-positive non-small-cell lung cancer.

WHAT IS THIS SUMMARY ABOUT?: This article provides a plain language summary and patient perspective of a new set of recommendations made by the European Society for Medical Oncology (ESMO for short). These recommendations are also called expert consensus statements. They cover the management of people with a type of lung cancer called epidermal growth factor receptor-positive non-small-cell lung cancer (EGFR-positive NSCLC for short). WHY WERE THE RECOMMENDATIONS DEVELOPED?: The ESMO Clinical Practice Guidelines are used by healthcare professionals when treating people with cancer, but they don't necessarily have all the information healthcare professionals need to make decisions for with people with EGFR-positive NSCLC. So, in 2021, 32 healthcare professionals who are experts in treating people with EGFR-positive NSCLC worked together to produce recommendations to fill these gaps about EGFR-positive NSCLC. This was called a consensus-building process and it also included patient advocates. WHAT RECOMMENDATIONS DID THEY MAKE?: The experts discussed four main topics including how people with different stages of EGFR-positive NSCLC are diagnosed and treated, and how clinical studies are done. They reviewed the scientific information that exists on these subjects. They reached an agreement and developed the recommendations that are summarized here.

Plain language summary and patient perspective of the American Society for Clinical Oncology guideline: management of stage 3 non-small-cell lung cancer.

WHAT IS THIS SUMMARY ABOUT?: This is a plain language summary of a guideline on the management of stage 3 non-small-cell lung cancer, also known as NSCLC. This guideline was written by the American Society for Clinical Oncology (ASCO for short) and published in the Journal of Clinical Oncology. WHY WERE THE GUIDELINES DEVELOPED?: The purpose of the ASCO guideline is to provide recommendations to healthcare professionals in the US including oncologists, surgeons, pathologists, radiologists, and nurses on how best to diagnose and treat people with stage 3 NSCLC. HOW WERE THE GUILDEINES DEVELOPED?: The ASCO guideline is based on the latest research and scientific evidence to make certain the recommendations are up to date and based on reliable data and best practice. In 2021, a group of experts were asked by ASCO to form an Expert Panel. The Expert Panel reviewed the results of 127 clinical research studies on NSCLC that were done between 1990 and 2021. They looked at how NSCLC had been diagnosed and treated in these studies, as well as at patients' survival and quality of life. The Expert Panel used these findings and their own expertise to form their recommendations and produce the 2021 ASCO Guideline called 'Management of Stage 3 Non-Small-Cell Lung Cancer: ASCO Guideline'. WHAT INFORMATION DOES THE GUIDELINE CONTAIN?: The guideline aims to answer the following questions: What are the most precise ways to confirm and stage NSCLC in people suspected of having a stage 3 disease? Which patients with stage 3 NSCLC can be treated most successfully with surgery? Which patients who can be treated with surgery could also have an additional therapy before their surgery? Which patients who can be treated with surgery could also have an additional treatment after their surgery? Which treatment and/or management is most suitable for patients who cannot have surgery?

2022 cancer statistics: Focus on lung cancer.

WHAT IS THIS SUMMARY ABOUT?: This is a plain language summary of a medical journal article called 'Cancer statistics, 2022'. The data in this summary provides detailed information about lung cancer and less detailed information about other cancers. The researchers from the original study used data gathered from previous years to produce a cancer forecast, predicting the number of new cancer diagnoses and deaths in the United States in 2022. WHAT WERE THE RESULTS?: The review of the data up to 2019 found that compared to previous years: Advanced lung cancer diagnoses had decreased Local stage lung cancer diagnoses had increased Deaths had slowed for lung cancer Deaths continued to reduce for breast cancer, but the rate of this reduction had slowed down Female breast cancer diagnoses were slowly increasing each year Prostate cancer diagnoses stayed similar Local stage prostate cancer diagnoses stayed similar Advanced prostate cancer diagnoses had increased each year The researchers estimated that over 1.9 million new cancer cases would be diagnosed and over half a million cancer deaths would occur in the United States in 2022. This figure includes approximately 350 deaths per day from lung cancer, which was found to be the leading cause of cancer death in the United States. WHAT DO THE RESULTS OF THE STUDY MEAN?: The study found that progress in reducing the number of people being diagnosed with breast and prostate cancer has stalled. Although there were fewer lung cancers diagnosed, this reduction was likely caused by changes in screening and advancements in lung cancer treatments. The American Cancer Society recommended that investing more funds in detecting cancers early as well as developing targeted treatments would help to reduce cancer death rates. This would also help to address the differences in access to cancer care that exist based on racial, social and economic inequalities.

Plain language summary and patient perspective of the revised STARS study: long-term results of a study that compared the effectiveness of radiotherapy to surgery in people with non-small-cell lung cancer.

WHAT IS THIS SUMMARY ABOUT?: This is a summary of a research study called revised STARS. The STARS study involved people with non-small-cell lung cancer, also known as NSCLC. The cancer was less than 5 cm in size and had not spread to other parts of the body (known as stage 1 cancer). The study compared the effectiveness of surgery versus a type of radiotherapy treatment, called stereotactic ablative radiotherapy (also known as SABR) as a treatment for people with NSCLC. Researchers wanted to find out how likely people were to be alive after treatment or if their cancer had grown or spread to other parts of their body (also known as progressed). WHAT WERE THE RESULTS?: The study found that the long term outcomes were similar between SABR and surgery. People with NSCLC were as likely to be alive 3 years after treatment with SABR compared to surgery. WHAT DO THE RESULTS OF THE STUDY MEAN?: SABR may be an alternative to surgery for people with stage 1 NSCLC which is less than 5 cm in size and has not spread to other parts of the body Clinical Trial Registration: NCT02357992 (ClinicalTrials.gov).

Correlation between visuo-cognitive tests and simulator performance of commercial drivers in the United States.

BACKGROUND: Driving commercial vehicles requires intact visuo-cognitive skills. Approximately 13% of all fatal motor vehicle crashes in the United States involve commercial drivers. The ability to accurately predict risk factors for unsafe commercial driving is essential for public safety. Accurate prediction tools will advance the field of commercial driver science, provide policy guidance for driver testing and assist healthcare providers during testing. Prior studies have correlated clinical tools to roadway safety; translating these results to commercial drivers has not yet been done. OBJECTIVE: This study aimed to identify specific demographic, driving history and visuo-cognitive test results that correlate with driving simulator performance. Using the Cumulative Simulator Score (CSS) as a surrogate for driving ability, the objective was to correlate both sets of data (self-reported and visuo-cognitive testing) with the CSS to identify screening tools for unsafe driving in commercial drivers. PRINCIPAL RESULTS: Baseline assessments of 120 variables were collected from October 2020 to January 2022. Of the 31 participants, 3 were female and 28 were male with a mean age of 53 years. Average BMI was 32, blood pressure 136/84, 32 years of CDL driving experience, 36,500 annual CDL mileage, 11,000 annual personal mileage, 14 years of education, average number of medications: 2, average number of medical conditions: 2, six participants with personal and/or commercial crashes or tickets in past five years, MOCA 27/30, Trails B time 66 s, UFOV Speed of Processing 15 ms, Stroke Disease Severity Assessment pass rate 94 %. The Cumulative Simulator Score (CSS), correlated significantly with education (r = 0.42; p = 0.02), commercial driving experience (r = 0.42; 0 = 0.02), and number of tickets as a commercial driver (Spearman rho = 0.40; p = 0.02). In a stepwise multivariable linear regression analysis, the number of tickets as a CDL driver in the past five years and years of education were retained as significant variables in the multivariable linear regression model, explaining 38 % of the variance of total scores on the CSS. MAJOR CONCLUSIONS: Descriptive and self-reported driving characteristics correlate better with the Cumulative Simulator Score in CDL drivers than visuo-cognitive tests. Since simulator performance has been shown to be a reliable surrogate for driving performance, the number of tickets as a CDL driver in the past five years and years of education can be considered as additions to annual physicals for policy makers and health care providers to help assess their on-the-road safety.

Simultaneous Home-Based Pediatric Hospice and Palliative Care: Characterizing the Population.

Background: Children and adolescents with serious conditions may benefit from simultaneous hospice and palliative care. Although the Affordable Care Act covers concurrent care, uptake has been limited. Limited descriptive data exist on receiving simultaneous community hospice and pediatric palliative care. Objective: Characterize a population of children and adolescents receiving simultaneous pediatric home-based hospice and palliative care (HBHPC). Design/Setting/Subjects: Post hoc analysis of retrospective study of N = 31 patients enrolled in pediatric HBHPC, with comparison to larger two-site sample receiving either hospice or palliative care at home. Measurement: Demographic and clinical data extracted from the electronic medical record. Results: Data characterizing the population receiving simultaneous care are presented; compared with those receiving either hospice or palliative care at home, the only significant differences were a greater proportion of decedent children and greater billable hours. Conclusions: Findings support the lack of meaningful distinction between hospice and palliative care in pediatrics.

Chronic neuropsychiatric sequelae of SARS-CoV-2: Protocol and methods from the Alzheimer's Association Global Consortium.

Introduction: Coronavirus disease 2019 (COVID-19) has caused >3.5 million deaths worldwide and affected >160 million people. At least twice as many have been infected but remained asymptomatic or minimally symptomatic. COVID-19 includes central nervous system manifestations mediated by inflammation and cerebrovascular, anoxic, and/or viral neurotoxicity mechanisms. More than one third of patients with COVID-19 develop neurologic problems during the acute phase of the illness, including loss of sense of smell or taste, seizures, and stroke. Damage or functional changes to the brain may result in chronic sequelae. The risk of incident cognitive and neuropsychiatric complications appears independent from the severity of the original pulmonary illness. It behooves the scientific and medical community to attempt to understand the molecular and/or systemic factors linking COVID-19 to neurologic illness, both short and long term. Methods: This article describes what is known so far in terms of links among COVID-19, the brain, neurological symptoms, and Alzheimer's disease (AD) and related dementias. We focus on risk factors and possible molecular, inflammatory, and viral mechanisms underlying neurological injury. We also provide a comprehensive description of the Alzheimer's Association Consortium on Chronic Neuropsychiatric Sequelae of SARS-CoV-2 infection (CNS SC2) harmonized methodology to address these questions using a worldwide network of researchers and institutions. Results: Successful harmonization of designs and methods was achieved through a consensus process initially fragmented by specific interest groups (epidemiology, clinical assessments, cognitive evaluation, biomarkers, and neuroimaging). Conclusions from subcommittees were presented to the whole group and discussed extensively. Presently data collection is ongoing at 19 sites in 12 countries representing Asia, Africa, the Americas, and Europe. Discussion: The Alzheimer's Association Global Consortium harmonized methodology is proposed as a model to study long-term neurocognitive sequelae of SARS-CoV-2 infection. Key Points: The following review describes what is known so far in terms of molecular and epidemiological links among COVID-19, the brain, neurological symptoms, and AD and related dementias (ADRD)The primary objective of this large-scale collaboration is to clarify the pathogenesis of ADRD and to advance our understanding of the impact of a neurotropic virus on the long-term risk of cognitive decline and other CNS sequelae. No available evidence supports the notion that cognitive impairment after SARS-CoV-2 infection is a form of dementia (ADRD or otherwise). The longitudinal methodologies espoused by the consortium are intended to provide data to answer this question as clearly as possible controlling for possible confounders. Our specific hypothesis is that SARS-CoV-2 triggers ADRD-like pathology following the extended olfactory cortical network (EOCN) in older individuals with specific genetic susceptibility.The proposed harmonization strategies and flexible study designs offer the possibility to include large samples of under-represented racial and ethnic groups, creating a rich set of harmonized cohorts for future studies of the pathophysiology, determinants, long-term consequences, and trends in cognitive aging, ADRD, and vascular disease.We provide a framework for current and future studies to be carried out within the Consortium. and offers a "green paper" to the research community with a very broad, global base of support, on tools suitable for low- and middle-income countries aimed to compare and combine future longitudinal data on the topic.The Consortium proposes a combination of design and statistical methods as a means of approaching causal inference of the COVID-19 neuropsychiatric sequelae. We expect that deep phenotyping of neuropsychiatric sequelae may provide a series of candidate syndromes with phenomenological and biological characterization that can be further explored. By generating high-quality harmonized data across sites we aim to capture both descriptive and, where possible, causal associations.

Incisional Negative Pressure Wound Therapy Is Protective Against Postoperative Cardiothoracic Wound Infection.

BACKGROUND: Sternal wound infections are a rare but life-threatening complication of cardiothoracic surgery. Prior literature has supported the use of negative pressure wound therapy to decrease sternal wound infections and promote healing. This study sought to determine whether closed incision negative pressure therapy reduced wound infection and improved outcomes in cardiothoracic surgery. METHODS: A retrospective cohort study was performed including all adult patients who underwent nontraumatic cardiothoracic surgery at a single institution between 2016 and 2018 (n = 1199). Patient characteristics, clinical variables, and surgical outcomes were compared between those who did and did not receive incisional negative pressure wound therapy intraoperatively. Multivariable logistic regression analysis determined factors predictive or protective of the development of complications. RESULTS: Incisional negative pressure wound therapy was used in 58.9% of patients. Patients who received this therapy were older with statistically higher rates of hyperlipidemia, statin, and antihypertensive use. The use of negative pressure wound therapy was found to significantly reduce rates of both wound infection (3.0% vs 6.3%, P = 0.01) and readmission for wound infection (0.7% vs 2.6%, P = 0.01). After controlling for confounding variables, negative pressure wound therapy was found to be a protective factor of surgical wound infection (odds ratio, 0.497; 95% confidence interval, 0.262-0.945). CONCLUSIONS: In the largest population studied to date, this study supported the expanded use of negative pressure therapy on sternal wound incisions to decrease infection rates.

Interventions to improve social circumstances of people with mental health conditions: a rapid evidence synthesis.

BACKGROUND: Poor social circumstances can induce, exacerbate and prolong symptoms of mental health conditions, while having a mental health condition can also lead to worse social outcomes. Many people with mental health conditions prioritise improvement in social and functional outcomes over reduction in clinical symptoms. Interventions that improve social circumstances in this population should thus be considered a priority for research and policy. METHODS: This rapid evidence synthesis reports on randomised controlled trials of interventions to improve social circumstances across eight social domains (Housing and homelessness; money and basic needs; work and education; social isolation and connectedness; family, intimate and caring relationships; victimisation and exploitation; offending; and rights, inclusion and citizenship) in people with mental health conditions. Economic evaluations were also identified. A comprehensive, stepped search approach of the Cochrane library, MEDLINE, Embase, PsycINFO, Web of Science and Scopus was conducted. RESULTS: One systematic review and 102 randomised controlled trials were included. We did not find RCT evidence for interventions to improve family, intimate and caring relationships and only one or two trials for each of improving money and basic needs, victimisation and exploitation, and rights, inclusion and citizenship. Evidence from successful interventions in improving homelessness (Housing First) and employment (Individual Placement and Support) suggests that high-intensity interventions which focus on the desired social outcome and provide comprehensive multidisciplinary support could influence positive change in social circumstances of people with mental health conditions. Objective social isolation could be improved using a range of approaches such as supported socialisation and social skills training but interventions to reduce offending showed few benefits. Studies with cost and cost-effectiveness components were generally supportive of interventions to improve housing and vocational outcomes. More research is needed to ensure that social circumstances accompanied by high risks of further exacerbation of mental health conditions are adequately addressed. CONCLUSIONS: Although there is a large body of literature examining how to support some aspects of life for people with mental health conditions, more high-quality evidence is required in other social domains. Integration into mental health services of interventions targeting social circumstances could significantly improve a number of social outcomes.

Assessment of the relationship between disease progression and goals of care by individuals with Duchenne muscular dystrophy and their caregivers.

INTRODUCTION/AIMS: Most patients with Duchenne muscular dystrophy (DMD) in the US are diagnosed at about age 5 years. Some adolescents and young adults (AYAs) with DMD are now living into their fourth decade, yet AYAs and caregivers are frequently unprepared to address changes in goals of care due to disease progression. The hypothesis-generating research question was how AYAs with DMD and their caregivers understand the relationship between physical changes and the need to change goals of care. METHODS: Grounded theory design using data from N = 30 semi-structured interviews (n = 13 AYA; n = 17 caregivers) from two sites. RESULTS: AYAs with DMD frequently defer considering and/or reconsidering goals of care based on (1) delays in diagnosis; (2) gradual, rather than episodic, disease progression; and (3) orientation to living in the present. Desire for autonomy motivates advance care planning and end-of-life treatment preferences for some. DISCUSSION: Routine inquiry into AYA and caregiver goals for living may normalize goals of care conversations, maximizing patients' ability to process information, reflect on preferences, and articulate wishes. Discussing present-day goals and abilities may invite conversation about future preferences. Framing conversations in terms of AYA autonomy may increase motivation to engage in such discussions.

Community suicide rates and related factors within a surveillance platform in Western Kenya.

BACKGROUND: Suicide is an important contributor to the burden of mental health disorders, but community-based suicide data are scarce in many low- and middle-income countries (LMIC) including Kenya. Available data on suicide underestimates the true burden due to underreporting related to stigma and legal restrictions, and under-representation of those not utilizing health facilities. METHODS: We estimated the cumulative incidence of suicide via verbal autopsies from the Health and Demographic Surveillance System (HDSS) in Kisumu County, Kenya. We then used content analysis of open history forms among deaths coded as accidents to identify those who likely died by suicide but were not coded as suicide deaths. We finally conducted a case-control study of suicides (both verbal autopsy confirmed and likely suicides) compared to accident-caused deaths to assess factors associated with suicide in this HDSS. RESULTS: A total of 33 out of 4306 verbal autopsies confirmed suicide as the cause of death. Content analysis of a further 228 deaths originally attributed to accidents identified 39 additional likely suicides. The best estimate of suicide-specific mortality rate was 14.7 per 100,000 population per year (credibility window = 11.3 - 18.0). The most common reported method of death was self-poisoning (54%). From the case-control study interpersonal difficulties and stressful life events were associated with increased odds of suicide in both confirmed suicides and confirmed combined with suspected suicides. Other pertinent factors such as age and being male differed depending upon which outcome was used. CONCLUSION: Suicide is common in this area, and interventions are needed to address drivers. The twofold increase in the suicide-specific mortality rate following incorporation of misattributed suicide deaths exemplify underreporting and misclassification of suicide cases at community level. Further, verbal autopsies may underreport suicide specifically among older and female populations.

Gut leben zuhause mit Multimorbidität.

Living well at home with multimorbidity - A project on the contribution of advanced practice nursing in home health care Abstract. Background: Multimorbidity has increased among the elderly, leading to loss of autonomy, lower quality of life, complex treatment plans and higher rates of complications and hospitalisations. Functional impairment and challenging therapy management make the use of home health nursing services essential. Experience in primary care and in hospitals has shown that Advanced Practice Nurses (APN) lead to a better quality of care for patients with multimorbidity. However, there is no data yet regarding the potential contribution of APNs to the care of these patients in home healthcare settings. Aim: To develop the role of the APN in a home health nursing organisation for patients with multimorbidity, applying internationally established APN core competencies. Methods: Characteristics of referred clients were collected and presented in case studies in an APN practice development project based on the PDCA-cycle. Benefits for clients, family caregivers, the nursing team, and for interprofessional collaboration were elaborated. Results: During the project period, a total of 40 clients were assigned to APN-care. An increase in stability in complex situations and higher confidence of clients and family caregivers in their individual health management were achieved. Discussion: The key factors were the APN's leadership role in best practice development and interprofessional collaboration. The APN played an important role in coordinating the numerous parties involved. Limits and transfer: This role must be further established. Empirical research is required to show the effect on quality of care.

"There's Just No Way to Help, and They Did." Parents Name Compassionate Care as a New Domain of Quality in Pediatric Home-Based Hospice and Palliative Care.

Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs. Objective: The goal of this project was to identify and define parent/caregiver-prioritized domains of family-centered care in HBHPC by performing semistructured interviews of parents/caregivers ("parents") across Ohio whose children have received HBHPC. We hypothesized that the 10 provider-prioritized domains and their definitions, as identified in our previous research, would be modified and augmented by parents for application in the pediatric HBHPC setting. Methods: This was a qualitative study utilizing semistructured interviews of bereaved parents of children who were enrolled in a pediatric HBHPC program at the three sites from 2012 to 2016 and parents of children who were currently enrolled in these programs for at least a year. Results: Parent-prioritized thematic codes mapped to 9 of the 10 provider-prioritized domains of quality HBHPC; none mapped to the domain "Ethical and Legal Aspects of Care." Although most of the provider-prioritized domains are pertinent to parents, parents defined these domains differently, deepening our understanding and perspective of quality within each domain. An 11th domain, Compassionate Care, was created and defined based on emergent themes. Conclusions: Parent/caregiver-prioritized domains of quality in pediatric HBHPC map closely to provider-prioritized domains, but parents define these domains differently. Parents also prioritize Compassionate Care as a new domain of quality in pediatric HBHPC. Measuring the quality of care provided in HBHPC programs through this broader perspective should enable the selection of measures which are truly patient- and family-centered.

What could the future hold for treatment sequencing in cancer medicine? An interview with Angela Märten.

Professor Angela Märten speaks to Rachel Jenkins, Commissioning Editor Angela Märten earned her PhD at Humboldt University of Berlin, Germany, in 2000, after working for several years as an oncology nurse. Upon completion of her PhD, she assumed responsibility for Phase I trials and translational research for the University Hospital of Bonn, Germany. In 2002, the University Hospital of Bonn appointed her as Assistant Professor for Experimental Haematology and Oncology. In 2003, she accepted a new position at the University of Heidelberg, Germany, heading the Immunotherapeutic Group and the Oncology Trial Department. The University of Heidelberg appointed her as Associate Professor in 2006 while she completed her Master of Sciences in Clinical Research in 2008. Professor Märten has been principal investigator of several clinical trials and has published more than 100 papers, with a particular focus on pancreatic carcinoma and lung cancer. She joined Boehringer Ingelheim in 2009, where she built up the German Medical Affairs Oncology team, before joining the Global Afatinib team in 2013. She is currently Global Senior Medical Advisor, Therapeutic Area of Oncology at Boehringer Ingelheim.