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Fatigue is a multifactorial symptom that is commonly faced by patients with cancer, chronic disease, and other serious illnesses. Fatigue causes suffering across biopsychosocial domains and affects patients and their loved ones. In this article, a consortium of professionals across cancer care, physical therapy, exercise, pharmacy, psychiatry, and palliative medicine offers tips and insights on evaluating, categorizing, and addressing fatigue in the setting of serious illness. The comprehensive approach to managing fatigue underscores the importance of collaborative efforts characteristic of interdisciplinary palliative care. Prioritizing screening, diagnosing, and treating fatigue is crucial for enhancing patients' and families' overall quality of life.
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BACKGROUND: Patients with cancer-related pain are at high risk for aberrant drug use behaviors (ADB), including self-escalation, diversion and concurrent illicit substance or opioid misuse; however, limited evidence is available to guide opioid prescribing for patients with life-limiting illness and concurrent or suspected ADB. We sought to characterize how specialists evaluate for and manage these high-risk behaviors in patients with cancer-related pain. METHODS: We conducted telephonic semi-structured interviews with palliative care and pain medicine providers. Participants discussed their own comfort and experience level with identifying and managing ADB in patients with life-limiting illness. They were subsequently presented with a series of standardized scenarios and asked to describe their concerns and management strategies. RESULTS: 95 interdisciplinary pain and palliative care specialists were contacted; 37 agreed to participate (38.9%). Analysis of interview contents revealed several central themes: (1) widespread discomfort and anxiety regarding safe and compassionate opioid prescribing for high-risk patients, (2) belief that widely used risk-mitigation tools such as opioid contracts and urine drug screens provided inadequate support for decision-making, and (3) lack of institutional and organizational support and guidance for safe prescribing strategies. Most clinicians reported self-education regarding addiction and alternative prescribing/pain management strategies. Providers varied widely in their willingness to discontinue opioid prescribing in a patient with aberrant behavior and pain associated with life-limiting illness. CONCLUSION: Providers caring for patients demonstrating ADB and cancer-related pain struggle to balance safe prescribing with symptom management. Increased guidance is needed regarding opioid prescribing, monitoring, and discontinuation in high-risk patients.
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Importance: Despite the evidence for early palliative care improving outcomes, it has not been widely implemented in part due to palliative care workforce limitations. Objective: To evaluate a stepped-care model to deliver less resource-intensive and more patient-centered palliative care for patients with advanced cancer. Design, Setting, and Participants: Randomized, nonblinded, noninferiority trial of stepped vs early palliative care conducted between February 12, 2018, and December 15, 2022, at 3 academic medical centers in Boston, Massachusetts, Philadelphia, Pennsylvania, and Durham, North Carolina, among 507 patients who had been diagnosed with advanced lung cancer within the past 12 weeks. Intervention: Step 1 of the intervention was an initial palliative care visit within 4 weeks of enrollment and subsequent visits only at the time of a change in cancer treatment or after a hospitalization. During step 1, patients completed a measure of quality of life (QOL; Functional Assessment of Cancer Therapy-Lung [FACT-L]; range, 0-136, with higher scores indicating better QOL) every 6 weeks, and those with a 10-point or greater decrease from baseline were stepped up to meet with the palliative care clinician every 4 weeks (intervention step 2). Patients assigned to early palliative care had palliative care visits every 4 weeks after enrollment. Main Outcomes and Measures: Noninferiority (margin = -4.5) of the effect of stepped vs early palliative care on patient-reported QOL on the FACT-L at week 24. Results: The sample (n = 507) mostly included patients with advanced non-small cell lung cancer (78.3%; mean age, 66.5 years; 51.4% female; 84.6% White). The mean number of palliative care visits by week 24 was 2.4 for stepped palliative care and 4.7 for early palliative care (adjusted mean difference, -2.3; P < .001). FACT-L scores at week 24 for the stepped palliative care group were noninferior to scores among those receiving early palliative care (adjusted FACT-L mean score, 100.6 vs 97.8, respectively; difference, 2.9; lower 1-sided 95% confidence limit, -0.1; P < .001 for noninferiority). Although the rate of end-of-life care communication was also noninferior between groups, noninferiority was not demonstrated for days in hospice (adjusted mean, 19.5 with stepped palliative care vs 34.6 with early palliative care; P = .91). Conclusions and Relevance: A stepped-care model, with palliative care visits occurring only at key points in patients' cancer trajectories and using a decrement in QOL to trigger more intensive palliative care exposure, resulted in fewer palliative care visits without diminishing the benefits for patients' QOL. While stepped palliative care was associated with fewer days in hospice, it is a more scalable way to deliver early palliative care to enhance patient-reported outcomes. Trial Registration: ClinicalTrials.gov Identifier: NCT03337399.
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Neoplasias Pulmonares , Cuidados Paliativos , Qualidade de Vida , Humanos , Neoplasias Pulmonares/terapia , Feminino , Masculino , Idoso , Pessoa de Meia-Idade , Assistência Centrada no PacienteRESUMO
INTRODUCTION: No prior study has assessed grief and bereavement curriculum in Hospice and Palliative Medicine (HPM) fellowship programs in the United States. METHODS: A 14-item survey was created and distributed to Accreditation Council for Graduate Medical Education (ACGME)-accredited HPM fellowship Program Directors to assess program demographics, curriculum emphasis, grief and bereavement programming, and attitudes toward grief and bereavement training for HPM fellows. RESULTS: The overall survey response rate was 63%. Most palliative care programs were academic (74%) and had four or fewer fellows (85%). 90% devoted a minority (0%-10%) of their curriculum to grief and bereavement training. Most programs reported at least some program-led grief and bereavement programming (69%); however, 53% endorsed that fellows are not very or not at all involved in this programming. Almost half of programs only have a small amount of programming related to supporting families after loss (49%). The majority endorsed having a great deal of programming for debriefing or supporting fellows through professional grief (55%), and the most common modalities were debriefing sessions (62%) and ensuring access to mental health resources (41%). The most common ways of teaching grief and bereavement were through bedside/anecdotal teaching and lectures/case conferences. Most program directors felt that palliative care fellowships should provide grief and bereavement training (81%) and consider it important or very important for fellows to learn how to process grief and bereavement (92%). DISCUSSION: It was widely reported by program directors that grief and bereavement training are important curricular components for HPM fellows. Acknowledging professional grief remains an underrecognized need in palliative care training and practice. Our study suggests that for grief and bereavement curricula in HPM fellowships, the time dedicated, specific types, and amount of fellow involvement was highly variable. It will be critical for programs to disseminate best practices to help move toward a more uniform approach for ensuring basic competency in grief and bereavement training in HPM fellowship programs in the United States.
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Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Estados Unidos , Bolsas de Estudo , Currículo , Educação de Pós-Graduação em Medicina , Inquéritos e Questionários , PesarRESUMO
Palliative care (PC) clinicians are well poised to help people with disabilities (PWD) live well in the context of serious illness. PC prioritizes person-centered care with a focus on function, autonomy, and quality of life. This approach aligns with principles of high-quality care for PWD. An understanding of the unique experiences and needs of PWD can advance the delivery of comprehensive, equitable PC for this population. In this article, we provide 10 tips to help PC clinicians develop an informed disability lens in their approach to care.
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This study examines the validity of the Delis-Kaplan Executive Function System (D-KEFS) in a traumatic brain injury (TBI) population compared to participants with orthopaedic injuries and normative controls. The utility of the D-KEFS was examined using a between groups design. One hundred patients with mild uncomplicated to severe TBI were recruited from a consecutive cohort of patients admitted as inpatients to a UK Major Trauma Centre and compared to 823 participants from the D-KEFS normative sample and 26 participants with orthopaedic injuries. Data were filtered for performance validity. Sample discrimination was calculated from D-KEFS subtest scores and derived index scores. Sensitivity to TBI severity was established. The TBI participants performed significantly lower on the D-KEFS Trail Making Test, Colour Word Interference, Colour Word Switching, Letter Fluency and Verbal Fluency Category Switching Total Words Correct. The D-KEFS index scores discriminated between TBI, orthopaedic and normative participants with large and moderate effect sizes, respectively. The D-KEFS demonstrated a dose-response relationship with TBI severity. These effects were robust to differences in premorbid intellectual functioning; however, D-KEFS performance was sensitive to performance on tests of mental processing speed. The use of a D-KEFS index score provides a robust and reliable discrimination of TBI patients from healthy control participants. This discrimination is not accounted for by premorbid intellect or the non-specific effects of trauma. The clinical and conceptual implications of these findings are considered.
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Lesões Encefálicas Traumáticas , Transtornos Cognitivos , Humanos , Testes Neuropsicológicos , Função Executiva/fisiologia , Lesões Encefálicas Traumáticas/complicações , Cognição , Transtornos Cognitivos/etiologia , Transtornos Cognitivos/complicaçõesRESUMO
This article provides guidance on the integral role of physical therapy, occupational therapy (OT), and speech language pathology (SLP) in palliative care (PC), underlining the necessity for effective communication between physicians and therapists, the importance of caregiver education and support, the application of holistic treatment modalities in OT, the underutilization of resources in PC settings, the role of SLP professionals in feeding and nutrition, and the challenges in communication during the advanced stages of illness. The article draws on various studies and expert opinions to elucidate these issues, offering a valuable resource to health care professionals in ensuring high-quality patient-centered PC.
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OBJECTIVES: Deficits in executive functioning are a common consequence of Traumatic Brain Injury (TBI) and the severity of TBI is known to predict functional outcomes. In this review, the authors examine the ability of three commonly used tests of executive functioning [The Trail Making Test (TMT-B), The Wisconsin Card Sorting Test (WCST), and Verbal Fluency (VF)] to predict domains of function. METHODS: Seven hundred and twenty articles were identified and twenty-four met inclusion criteria (original articles published in English examining an adult TBI population). Data were subject to a study quality analysis and then meta-analyzed to assess whether tests of executive functioning (TMT-B, WCST, and VF) can predict functional, employment, and driving outcomes following a TBI. RESULTS: The TMT-B (r = 0.29; 95% CI 0.17-0.41) and the WCST (r = 0.20; 95% CI 0.02-0.37) were significantly associated with functional outcomes. The TMT-B was also associated with a person's ability to return to driving (r = 0.3890; 95% CI 0.2678-0.5103). No test of executive functioning was associated with employment outcomes following a TBI. CONCLUSION: These findings are important to guide rehabilitation strategies and future planning. This review has also highlighted the scarcity of research on specific outcomes.
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Multiple sclerosis (MS) is a chronic, immune-mediated, neurodegenerative condition of the central nervous system, with distinct challenges due to its heterogeneous presentation, prognostic uncertainty, and variable clinical course of neurological and non-neurological symptoms and disability. Although there have been significant advances in management of MS, many patients experience disability progression. Despite MS being a frequent cause of neurological disability, particularly in young persons, involvement of palliative care physicians in the care of patients with MS has been limited. This article provides ten tips for palliative clinicians for caring for patients with MS and their care partners.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Esclerose Múltipla , Humanos , Cuidados Paliativos , Esclerose Múltipla/terapia , PrognósticoRESUMO
Cognitive outcome for mild traumatic brain injury (mTBI) with positive brain imaging (complicated mTBI) was compared with that for mTBI with normal imaging (uncomplicated mTBI) and with moderate to severe TBI, using meta-analysis. Twenty-three studies utilizing objective neurocognitive tests were included in the analysis. At less than 3 months post-injury, complicated mTBI was associated with poorer cognitive outcomes than uncomplicated mTBI, but deficits were not comparable to those with moderate-severe TBI. After 3 months post-injury, a similar pattern was detected. Beyond 3 months, deficits in complicated mTBI relative to those with uncomplicated mTBI were present in processing speed, memory, executive function, and language, although the latter may be the result of reduced semantic fluency. The effect size of deficits in these domains was more marked in moderate-severe TBI. The available data support the use of complicated mTBI as a distinct classification in the prediction of cognitive outcome. The extent of cognitive deficit in complicated mTBI was small and unlikely to cause significant disability. However, patients with complicated mTBI constitute a broad category encompassing individuals who may differ markedly in the nature and extent of intracranial imaging abnormality, and further studies are warranted. Limitations of the available studies include small, selected samples; variations in TBI severity classification; absence of validity ("effort") testing; differing imaging methodology; and lack of long-term follow-up.
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Concussão Encefálica , Lesões Encefálicas Traumáticas , Lesões Encefálicas , Transtornos Cognitivos , Humanos , Concussão Encefálica/complicações , Concussão Encefálica/diagnóstico por imagem , Concussão Encefálica/psicologia , Encéfalo , Transtornos Cognitivos/etiologia , Cognição , Lesões Encefálicas Traumáticas/complicações , Lesões Encefálicas Traumáticas/diagnóstico por imagemRESUMO
Cachexia is a multifactorial syndrome that is common in cancer and chronic disease. It is often underdiagnosed and therefore goes untreated or undertreated. Cachexia causes suffering across biopsychosocial domains and affects patients and their loved ones. In this article, a group of clinicians and researchers across cancer care, nutrition, and exercise offers tips about assessment, classification, and management of cachexia, with attention to its stage. The required multimodal management of cachexia mirrors well the interprofessional collaboration that is the mainstay of interdisciplinary palliative care and attention to screening, diagnosis, and management of cachexia is critical to maximize patients' quality of life.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Humanos , Cuidados Paliativos , Caquexia/etiologia , Caquexia/terapia , Qualidade de Vida , Neoplasias/complicaçõesRESUMO
Sleep changes in new parents are widely observed but there is no extant meta-analysis of changes to sleep parameters in this group. We completed a meta-analysis of changes in actigraphy-measured parent sleep between pregnancy and the end of the first year of a child's life. A search of six databases was completed. Following review using predetermined inclusion and exclusion criteria, 16 papers were left for review. Data were extracted, analysed and each paper was reviewed for methodological quality. Where possible, subgroup analysis was completed based on time since birth and location of the study, and meta-regression of parent age. Parents' total sleep time and sleep efficiency were shown to decrease following the birth of a child, with wake after sleep onset increasing. This change was most notably observed in the first four weeks after birth. Up to 16 weeks post-birth, differences were still apparent, but sleep parameters were beginning to return to pre-birth levels. New parents experience a significant change in multiple sleep parameters following the birth of a child. Future data collection, using best practice actigraphy measurement, reporting a broader range of variables and including fathers, as well as mothers, is warranted.
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Actigrafia , Pais , Criança , Feminino , Gravidez , Humanos , Sono , Mães , Período Pós-PartoRESUMO
The COVID-19 pandemic has highlighted the need for further research evaluating the validity of conducting a battery of neuropsychological assessments virtually compared with face-to-face administration. Previous research has suggested that some neuropsychological assessments yield valid results when administered virtually, however, much of the previous research focused on older adults. To determine the validity of virtually administered neuropsychological tests, 28 healthy participants were assessed using a within-subjects, counter-balanced design. Participants completed a neuropsychological assessment battery covering tests of general intellectual functioning, memory and attention, executive functioning, language and information processing speed, as well as effort. There was no significant difference between face-to-face administration of the neuropsychological battery compared with virtual administration for the majority of the tests used. However, there were significant differences in the Colour Naming Task, with participants making fewer errors on the colour naming task and inhibition/switching task when administered virtually compared with face-to-face administration. There was also a significant age cohort effect in the inhibition/switching task. There was also a trending significant difference in mode of administration for the Verbal Fluency Task. Virtually administered neuropsychological assessments largely provide a valid alternative to face-to-face assessments; however, consideration must be given to test selection as well as the population of participants that are being assessed. Other important considerations must focus on preserving the security and integrity of test materials, as well as administration in a medico-legal setting. Future research should focus on validating assessments with specific patient populations and developing a neuropsychological assessment battery using information technology.
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COVID-19 , Pandemias , Humanos , Idoso , Testes Neuropsicológicos , Função Executiva , CogniçãoRESUMO
As palliative care (PC) programs rapidly grow and expand across settings, the need to measure, improve, and standardize high-quality PC has also grown. The electronic health record (EHR) is a key component of these efforts as a central hub of care delivery and a repository of patient and system data. Deliberate efforts to leverage the EHR for PC quality improvement (QI) can help PC programs and health systems improve care for patients with serious illnesses. This article, written by clinicians with experience in QI, informatics, and clinical program development, provides practical tips and guidance on EHR strategies and tools for QI and quality measurement.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Cuidados Paliativos , Humanos , Melhoria de Qualidade , Registros Eletrônicos de Saúde , Coleta de DadosRESUMO
Pain management in palliative care (PC) is becoming more complex as patients survive longer with life-limiting illnesses and population-wide trends involving opioid misuse become more common in serious illness. Buprenorphine, a generally safe partial mu-opioid receptor agonist, has been shown to be effective for both pain management and opioid use disorder. It is critical that PC clinicians become comfortable with indications for its use, strategies for initiation while understanding risks and benefits. This article, written by a team of PC and addiction-trained specialists, including physicians, nurse practitioners, social workers, and a pharmacist, offers 10 tips to demystify buprenorphine use in serious illness.
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Buprenorfina , Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Transtornos Relacionados ao Uso de Opioides , Humanos , Buprenorfina/uso terapêutico , Cuidados Paliativos , Analgésicos Opioides/uso terapêutico , Transtornos Relacionados ao Uso de Opioides/tratamento farmacológicoRESUMO
Patients receiving palliative care (PC) can present with or develop a host of urological needs or complications. These needs can include attention to sexual health, urinary incontinence, genitourinary bleeding, and urinary tract obstruction by benign, malignant, or urinary stone diseases. These varied conditions require that PC clinicians understand invasive and noninvasive medical, surgical, and radiation options for treatment. This article, written by a team of urologists, geriatricians, and PC specialists, offers information and guidance to PC teams in an accessible "Top Ten Tips" format to increase comfort with and skills around assessment, evaluation, and specialist referral for urological conditions common in the PC setting.
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Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Incontinência Urinária , Humanos , Cuidados Paliativos , Qualidade de VidaRESUMO
Psychological debriefing is an early post-trauma intervention which aims to prevent the development of PTSD and accelerate normal recovery through discussing, validating, and normalising group members responses to trauma. While originally designed in the 1980s for groups of emergency service personnel, the scope of psychological debriefing extended to individual primary victims of trauma. A Cochrane review in 2002 concluded that psychological debriefing was ineffective, yet some authors have argued that many of the studies that informed the Cochrane review did not adhere to key elements of psychological debriefing. This meta-analysis sought to re-examine the effectiveness of psychological debriefing in preventing or reducing PTSD symptoms following work-related trauma. Appropriate studies were selected from three databases (MEDLINE, Embase and PsycINFO). Inclusion criteria was intentionally broad so that features of psychological debriefing that may determine its effectiveness could be explored through a series of subgroup analyses. The overall synthesis did not find consistent evidence that psychological debriefing helps to prevent or reduce PTSD symptoms following work-related trauma. Shortcomings in the methodology and reporting of many of the studies meant that several important subgroup analyses could not be conducted. Further well-designed studies in this field are warranted to ensure that employees exposed to potentially traumatic events receive the effective support they need and deserve.