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JMIR Formative Research Jun 2024Serious illness conversations may help patients avoid unwanted treatments. We previously piloted the telehealth Serious Illness Care Program (SICP) for older adults with...
BACKGROUND
Serious illness conversations may help patients avoid unwanted treatments. We previously piloted the telehealth Serious Illness Care Program (SICP) for older adults with acute myeloid leukemia and myelodysplastic syndrome.
OBJECTIVE
In this study, we aimed to understand the experience of the telehealth SICP from the clinician's perspective.
METHODS
We studied 10 clinicians who delivered the telehealth SICP to 20 older adults with acute myeloid leukemia or myelodysplastic syndrome. Quantitative outcomes included confidence and acceptability. Confidence was measured using a 22-item survey (range 1-7; a higher score is better). Acceptability was measured using an 11-item survey (5-point Likert scale). Hypothesis testing was performed at α=.10 (2-tailed) due to the pilot nature and small sample size. Clinicians participated in audio-recorded qualitative interviews at the end of the study to discuss their experience.
RESULTS
A total of 8 clinicians completed the confidence measure and 7 clinicians completed the acceptability measure. We found a statistically significant increase in overall confidence (mean increase of 0.5, SD 0.6; P=.03). The largest increase in confidence was in helping families with reconciliation and goodbye (mean 1.4, SD 1.5; P=.04). The majority of clinicians agreed that the format was simple (6/7, 86%) and easy to use (6/7, 86%). Clinicians felt that the telehealth SICP was effective in understanding their patients' values about end-of-life care (7/7, 100%). A total of three qualitative themes emerged: (1) the telehealth SICP deepened relationships and renewed trust; (2) each telehealth SICP visit felt unique and personal in a positive way; and (3) uninterrupted, unrushed time optimized the visit experience.
CONCLUSIONS
The telehealth SICP increased confidence in having serious illness conversations while deepening patient-clinician relationships.
TRIAL REGISTRATION
ClinicalTrials.gov NCT04745676; https://www.clinicaltrials.gov/study/NCT04745676.
PubMed: 38935428
DOI: 10.2196/58503 -
Death Studies Jun 2024This scoping review aimed to identify the theory-based studies related to grief and bereavement in palliative care. The investigation was carried out by searching seven...
This scoping review aimed to identify the theory-based studies related to grief and bereavement in palliative care. The investigation was carried out by searching seven databases and conducting manual searches. The search procedure yielded 51 scholarly papers, which revealed 33 theories or models and 37 instruments. The theories and models can be classified into distinct categories, namely grief patterns and coping mechanisms. This study can be a valuable reference for future research endeavors, particularly those employing deductive methodologies. It offers guidance in selecting appropriate theories or models that can be applied to further studies.
PubMed: 38935108
DOI: 10.1080/07481187.2024.2370460 -
Pediatric Pulmonology Jun 2024A primary palliative care model for cystic fibrosis (CF) recommends using the Integrated Palliative Care Outcome Scale (IPOS) for screening. Validation of the IPOS is...
BACKGROUND
A primary palliative care model for cystic fibrosis (CF) recommends using the Integrated Palliative Care Outcome Scale (IPOS) for screening. Validation of the IPOS is needed.
METHODS
This secondary analysis utilized baseline data from a multisite trial of the palliative care model, Improving Life with CF. Adults with CF completed the IPOS, the Memorial Symptom Assessment Scale-CF (MSAS-CF), the CF Questionnaire-Revised (CFQ-R), the Patient Health Questionnaire (PHQ-8), the Generalized Anxiety Disorder (GAD-7), and the Perceived Stress Scale (PSS). IPOS structure was assessed using Cronbach α coefficients and a factor analysis. Construct validity was evaluated through bivariate relationships between IPOS scores and other questionnaire scores, and linear regressions assessing the extent to which the IPOS explains variance in quality-of-life domains.
RESULTS
The sample comprised 256 adults with complete IPOS data. α coefficients were .86 for the IPOS total score, .81 for the Physical Symptoms subscale, .79 for the Emotional Symptoms subscale, and .63 for the Communication/Practical Issues subscale. A two-component factor structure best aligned with the current subscales. IPOS scores were significantly associated with other measures; associations with MSAS-CF and CFQ-R subscales differentiated the IPOS Physical and Emotional subscales. The IPOS total score provided unique information about the variance in the CFQ-R Physical Functioning and Respiratory Symptoms domain scores.
CONCLUSIONS
In adults with CF, the IPOS has acceptable internal consistency and there is evidence of construct validity. These findings support adoption of the IPOS in the primary palliative care model for CF.
PubMed: 38934771
DOI: 10.1002/ppul.27143 -
Inflammatory Bowel Diseases Jun 2024Despite the growing proportion of older adults with inflammatory bowel disease (IBD), their lived experience is not well understood. IBD literature is generally focused...
BACKGROUND
Despite the growing proportion of older adults with inflammatory bowel disease (IBD), their lived experience is not well understood. IBD literature is generally focused on younger adults, and few studies are qualitative. Older adults may report well-being differently than younger adults, so it is important that we learn about their goals and priorities with a chronic disease.
OBJECTIVE
The study sought to understand the lived experience of older adults with IBD and explore their perceptions and priorities.
METHODS
We conducted in-depth interviews with patients ≥60 years of age with IBD to evaluate the impact and perception of IBD in the context their overall health and life. We used a hybrid inductive-deductive thematic analysis of our transcripts to identify underlying patterns.
RESULTS
We achieved thematic saturation after 22 interviews. We produced 4 major themes: (1) having IBD at an older age, (2) financial ramifications of IBD at an older age, (3) expectations for a meaningful life, and (4) unmet needs. Prominent subthemes included (1) ageism, loss of autonomy, and barriers to healthcare; (2) retirement and insurance issues; (3) redefining quality of life and gratitude; and (4) social isolation and navigating daily life with IBD.
CONCLUSIONS
Having IBD later in life presents unique challenges. Physicians treating older patients should consider age-sensitive communication, susceptibility to social isolation, and practices for healthy aging in the context of IBD. Patient priorities for further investigation include more representation in the media and educational material tailored for older adults with IBD.
PubMed: 38934627
DOI: 10.1093/ibd/izae139 -
Deutsches Arzteblatt International May 2024
Comparative Study
Topics: Germany; Humans; Palliative Care; Ambulatory Care; Male; Female; National Health Programs; Middle Aged; Aged; Adult; Aged, 80 and over; Medicine
PubMed: 38934069
DOI: 10.3238/arztebl.m2024.0017 -
Journal of Multidisciplinary Healthcare 2024Coronavirus disease 2019 (COVID-19) placed a significant strain on nursing homes, leading to numerous outbreaks and high mortality rates. This situation created...
PURPOSE
Coronavirus disease 2019 (COVID-19) placed a significant strain on nursing homes, leading to numerous outbreaks and high mortality rates. This situation created considerable stress and challenges for residents, their physicians and nurses, as well as family caregivers. By understanding these challenges, we can gain new insights and learn valuable lessons. Thus, the purpose of this study is to examine the treatment and care provided to nursing home residents with COVID-19, as experienced by physicians, nurses, and family caregivers.
PARTICIPANTS AND METHODS
This study is a secondary analysis of 35 interviews with physicians, nurses, and family caregivers, each with personal experience caring for nursing home residents diagnosed with COVID-19. The interviews took place from December 2020 to April 2021. We analyzed the transcriptions based on Braun and Clarke's reflexive thematic analysis model and followed a qualitative descriptive design as outlined by Sandelowski.
FINDINGS
The analysis produced three themes: 1) Balancing medical treatment, 2) The need for increased systematic monitoring of vital functions, and 3) Determining the treatment level for nursing home residents. These themes were explored through the unique perspectives of the three participant groups: physicians, nurses, and family caregivers. The findings revealed several challenges related to treatment and care for nursing home residents diagnosed with COVID-19. This applied both to relief of symptoms, monitoring of vital functions, assessment of treatment level and use of advance care planning.
CONCLUSION
Drawing from the experiences of physicians, nurses, and family caregivers, there should be a unified plan at the municipal or national level for competency development in nursing homes to prepare for future crises like pandemics or epidemics. Additionally, the safe engagement of family caregivers and relatives should be given priority.
PubMed: 38933696
DOI: 10.2147/JMDH.S467459 -
Frontiers in Pharmacology 2024Chemotherapy-induced peripheral neuropathy (CIPN) is a shared burden for 68.1% of oncological patients undergoing chemotherapy with Paclitaxel (PTX). The symptoms are...
Chemotherapy-induced peripheral neuropathy (CIPN) is a shared burden for 68.1% of oncological patients undergoing chemotherapy with Paclitaxel (PTX). The symptoms are intense and troublesome, patients reporting paresthesia, loss of sensation, and dysesthetic pain. While current medications focus on decreasing the symptom intensity, often ineffective, no medication is yet recommended by the guidelines for the prevention of CIPN. Cannabinoids are an attractive option, as their neuroprotective features have already been demonstrated in neuropathies with other etiologies, by offering the peripheral neurons protection against toxic effects, which promotes analgesia. We aim to screen several new cannabinoids for their potential use as neuroprotective agents for CIPN by investigating the cellular toxicity profile and by assessing the potential neuroprotective features against PTX using a primary dorsal root ganglion neuronal culture. Our study showed that synthetic cannabinoids JWH-007, AM-694 and MAB-CHMINACA and phytocannabinoids Cannabixir Medium dried flowers (NC1) and Cannabixir THC full extract (NC2) preserve the viability of fibroblasts and primary cultured neurons, in most of the tested dosages and time-points. The combination between the cannabinoids and PTX conducted to a cell viability of 70%-89% compared to 40% when PTX was administered alone for 48 h. When assessing the efficacy for neuroprotection, the combination between cannabinoids and PTX led to better preservation of neurite length at all tested time-points compared to controls, highly drug and exposure-time dependent. By comparison, the combination of the cannabinoids and PTX administered for 24 h conducted to axonal shortening between 23% and 44%, as opposed to PTX only, which shortened the axons by 63% compared to their baseline values. Cannabinoids could be potential new candidates for the treatment of paclitaxel-induced peripheral neuropathy; however, our findings need to be followed by additional tests to understand the exact mechanism of action, which would support the translation of the cannabinoids in the oncological clinical practice.
PubMed: 38933665
DOI: 10.3389/fphar.2024.1395951 -
European Heart Journal. Case Reports Jun 2024Primary pericardial sarcomas are extremely rare malignancies. In this case of primary pericardial synovial sarcoma, we discuss the initial steps to work-up pericardial...
BACKGROUND
Primary pericardial sarcomas are extremely rare malignancies. In this case of primary pericardial synovial sarcoma, we discuss the initial steps to work-up pericardial effusions and review features that warrant more detailed investigation.
CASE SUMMARY
A 29-year-old male with no relevant past medical history presents with a few weeks of fatigue, dyspnoea, orthopnoea, leg swelling, and back pain. Transthoracic echocardiogram revealed pericardial effusion for which pericardiocentesis and drain placement were done. He was discharged with a diagnosis of post-viral pericarditis. He returned 5 months later with worsening symptoms. Advanced imaging with cardiac magnetic resonance imaging (CMR) showed heterogeneous pericardial mass later revealed to be a high-grade synovial sarcoma on biopsy. The patient was started on a doxorubicin-based chemotherapy regimen, but due to kidney dysfunction and multi-organ failure, he was transitioned to palliative care measures.
DISCUSSION
Transthoracic echocardiogram and computed tomography are often the initial tests of choice for pericardial effusions with pericardiocentesis recommended for effusions with tamponade physiology, for moderate-to-large effusions, or if there is concern for infection/neoplasm. Due to improved tissue characterization and spatial resolution, CMR and positron emission tomography should also be considered for atypical or recurrent pericardial effusions to assess for less common aetiologies such as malignancy.
PubMed: 38933365
DOI: 10.1093/ehjcr/ytae284 -
Frontiers in Medicine 2024Family-centered care (FCC) is a model of care provision that sees a patient's loved ones as essential partners to the health care team and positively influences the...
INTRODUCTION
Family-centered care (FCC) is a model of care provision that sees a patient's loved ones as essential partners to the health care team and positively influences the psychological safety of patients and loved ones.
OBJECTIVES
This review aims to present an overview of impactful publications, authors, institutions, journals, countries, fields of application and trends of FCC in the 21 century as well as suggestions on further research.
METHODS
The Web of Science Database was searched for publications on FCC between January 2000 and Dezember 2023. After screening for duplicates, VOS Viewer and CiteSpace were used to analyze and visualize the data.
RESULTS
Scientific interest in FCC has grown and resulted in the scientific output of 4,836 publications originating from 103 different countries. Based on the frequent author keywords, FCC was of greatest interest in neonatology and pediatrics, nursing, critical and intensive care, end-of-life and palliative care, and patient-related outcomes. The recent research hotspots are "patient engagement," "qualitative study," and "health literacy."
CONCLUSION
FCC has gained recognition and spread from the pediatric to the adult palliative, intensive, end-of-life and geriatric care settings. This is a very reassuring development since adults, especially when older, want and need the assistance of their social support systems. Recent research directions include the involvement of patients in the development of FCC strategies, health literacy interventions and the uptake of telemedicine solutions.
PubMed: 38933103
DOI: 10.3389/fmed.2024.1401577 -
HLA Jun 2024MICA polymorphisms have been associated with increased incidence of acute GvHD and adverse outcome in allogeneic haematopoietic stem cell transplantation (HSCT). MICB is...
MICA polymorphisms have been associated with increased incidence of acute GvHD and adverse outcome in allogeneic haematopoietic stem cell transplantation (HSCT). MICB is another expressed member of MHC class I-related chain genes and its impact on HSCT outcome is yet to be fully defined. We typed a large cohort of patients and donors for MICB polymorphisms and investigated the impact of MICB matching on outcome after unrelated HSCT. 69.2% of the patients were 10/10 human leukocyte antigen (HLA) matched and 30.8% were 9/10 HLA matched. MICB typing was performed using a short amplicon-based NGS typing assay on the Illumina MiSeq platform. Differences in proteins were considered as mismatches. MICA polymorphisms were identified as possible confounder and were therefore included as parameter in the multivariate analyses. Due to the strong linkage disequilibrium with the classical HLA-genes, sub-stratification for HLA matching status was necessary, and no effect of MICB mismatches was seen in the 10/10 HLA matched group when compared to the MICB matched cases. However, in the 9/10 HLA matched group, MICB mismatched cases showed significantly worse disease free survival (DFS), GvHD and relapse free survival (GRFS) compared to the MICB matched cases (DFS: HR 1.24, p = 0.011; GRFS: HR 1.26, p = 0.002). MICA mismatches had no impact on any outcome parameter. According to our findings, effects previously attributed to MICA differences may have been confounded by MICB polymorphisms. We show that MICB differences contribute a small but relevant effect in 9/10 HLA-matched transplantations, which in turn highlights the possible usefulness of MICB typing in donor selection among similarly suitable 9/10 matched donors, especially when HLA-B mismatches have to be accepted.
Topics: Humans; Hematopoietic Stem Cell Transplantation; Graft vs Host Disease; Histocompatibility Testing; Histocompatibility Antigens Class I; Male; Female; Adult; Middle Aged; Unrelated Donors; Adolescent; Transplantation, Homologous; Polymorphism, Genetic; Aged; Young Adult; HLA Antigens; Linkage Disequilibrium; Alleles; Child
PubMed: 38932717
DOI: 10.1111/tan.15584