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OBJECTIVE: We examined the associations among advance directives (ADs) completion, coping, uncertainty in illness, and optimism and pessimism in patients with end-stage liver disease (ESLD). BACKGROUND: Although associations among ADs, coping, and uncertainty have been studied in patients with other life-limiting illnesses, these concepts have not been studied together in patients with ESLD. PATIENTS AND METHODS: Patients were recruited at 2 health care institutions as part of a larger prospective study. They were enrolled if they had a diagnosis of nonhepatocellular carcinoma ESLD, Sodium Model for End-Stage Liver Disease ≥15, and no prior history of liver transplantation. Uncertainty, coping, optimism, and pessimism were assessed using the Uncertainty in Illness Scale for Adults, Revised Ways of Coping Checklist, and Life Orientation Test-revised. AD documentation at the time of study enrollment was retrospectively extracted from patient medical records. RESULTS: In the sample [N = 181; median age = 57 y, 115 (64%) males], male sex [odds ratio (OR) = 4.66; 95% CI: 1.53, 14.17], being listed or under evaluation for liver transplantation (OR = 3.09; 95% CI: 1.10, 8.67), greater Sodium Model for End-Stage Liver Disease scores (OR = 1.10; 95% CI: 1.01, 1.20), and greater uncertainty (OR = 1.04; 95% CI: 1.01, 1.07) were positively associated with AD documentation. Higher coping avoidance was negatively associated with AD documentation (OR = 0.915; 95% CI: 0.840, 0.997). CONCLUSIONS: Clinicians should consider the role of uncertainty and coping measures to improve patient-specific advance care planning conversations and expand opportunities for all patients with ESLD to file an AD, especially women and patients not listed or under evaluation for transplantation.
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Colorectal cancer is the second leading cause of cancer-related deaths in the United States and accounts for an estimated 1 million deaths annually worldwide. The liver is the most common site of metastatic spread from colorectal cancer, significantly driving both morbidity and mortality. Although remarkable advances have been made in recent years in the management for patients with colorectal cancer liver metastases, significant challenges remain in early detection, prevention of progression and recurrence, and in the development of more effective therapeutics. In 2017, our group held a multidisciplinary state-of-the-science symposium to discuss the rapidly evolving clinical and scientific advances in the field of colorectal liver metastases, including novel early detection and prognostic liquid biomarkers, identification of high-risk cohorts, advances in tumor-immune therapy, and different regional and systemic therapeutic strategies. Since that time, there have been scientific discoveries translating into therapeutic innovations addressing the current management challenges. These innovations are currently reshaping the treatment paradigms and spurring further scientific discovery. Herein, we present an updated discussion of both the scientific and clinical advances and future directions in the management of colorectal liver metastases, including adoptive T-cell therapies, novel blood-based biomarkers, and the role of the tumor microbiome. In addition, we provide a comprehensive overview detailing the role of modern multidisciplinary clinical approaches used in the management of patients with colorectal liver metastases, including considerations toward specific molecular tumor profiles identified on next generation sequencing, as well as quality of life implications for these innovative treatments.
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Neoplasias Colorretais , Neoplasias Hepáticas , Humanos , Qualidade de Vida , Neoplasias Hepáticas/terapia , Biomarcadores , Neoplasias Colorretais/terapiaRESUMO
(1) Background: Little is known about facilitators of and barriers to palliative care referral for people with hepatocellular carcinoma (HCC). The objective of this study is to identify facilitators and barriers of palliative care referral described by HCC-treating clinicians. (2) Methods: Semi-structured interviews (n = 16) were conducted with HCC-treating clinicians at two centers, focusing on referral patterns, palliative care needs, and disease course. A code book was created, axial coding was used to code all interviews, and selective coding was used to identify facilitators and barriers of palliative care referral. (3) Results: Facilitators included helpfulness at times of transition; help with management of certain symptoms; provision of psychosocial support; and positive experiences with referral. Barriers included feasibility concerns; lack of information about palliative care and who is appropriate; lack of symptoms requiring outside referral; and concerns that palliative care conveys loss of hope. (4) Conclusions: Participants noted the helpfulness of palliative care at specific points in the disease trajectory and cited barriers related to feasibility, lack of need, lack of awareness, and loss of hope. The results show actionable issues that can be addressed in future research to leverage the benefits of and overcome the barriers to palliative care for people with HCC.
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Aims: Palliative care integration improves quality of life among patients with lung cancer and their families. Despite these benefits, significant barriers persist and patients do not receive timely integration. This study sought to identify facilitators of and barriers to integration in lung cancer care. Materials & methods: Semistructured qualitative interviews were conducted with palliative care and lung cancer clinicians and analyzed using traditional content analysis. 23 clinicians were interviewed from geographically dispersed hospitals within a national healthcare system. Results: Palliative care integration improved over time, enhanced by several facilitators stratified at four levels (patient/clinician/hospital/organization). Most important among these was multidisciplinary care delivered in outpatient settings, fostering trust and relationships among clinicians which were pivotal to successful integration. Workforce shortages and limited use of primary palliative care among lung cancer clinicians need to be addressed for continued growth in the field. Conclusion: Relationships among clinicians are crucial to successful palliative care integration in lung cancer care.
Palliative care is a form of supportive care for patients with a serious illness that improves quality of life among patients with lung cancer and their families. Unfortunately, many patients do not receive this care until they are near the end of life. This study sought to explore clinicians' perspectives regarding ways to enhance the use of palliative care among patients with lung cancer. Using interviews of clinicians from geographically dispersed hospitals within a national healthcare system, the authors explored reasons and potential solutions to improve palliative care delivery. One of the most important factors in enhancing palliative care use was fostering trust and relationships among palliative care and lung cancer clinicians. Workforce shortages also need to be addressed for continued growth in the field of palliative care. Relationships among clinicians are crucial to successful palliative care integration in lung cancer care.
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Neoplasias Pulmonares , Cuidados Paliativos , Humanos , Qualidade de Vida , Neoplasias Pulmonares/terapia , Pesquisa QualitativaRESUMO
CONTEXT: Palliative care (PC) is associated with improved quality of life, survival, and decreased healthcare use at the end of life among lung cancer patients. However, the specific elements of palliative care that may contribute to these benefits are unclear. OBJECTIVES: To evaluate the associations of PC and its setting of delivery with prescriptions of symptom management medications, advance care planning (ACP), hospice enrollment, and home health care (HHC) receipt. METHODS: Retrospective, cohort study of patients with advanced stage (IIIB/IV) lung cancer in the Veterans Health Administration (VA) diagnosed from 2007-2013; with follow-up through 2017. Propensity score methods were used with inverse probability of treatment weighting and logistic regression modeling, adjusting for patient and tumor characteristics. RESULTS: Among 23 142 patients, 57% received PC. Compared to non-receipt of PC, PC in any setting (inpatient or outpatient) was associated with increased prescriptions of pain medications (Adjusted Odds Ratio (aOR) = 1.63, 95% CI: 1.45-1.83), constipation regimen with pain medications (aOR = 2.04, 95% CI: 1.63-2.54), and antidepressants (aOR = 1.78, 95% CI: 1.52-2.09). PC was also associated with increased ACP (aOR = 1.52, 95% CI: 1.37-1.67) and hospice enrollment (aOR = 1.39, 95% CI:1.31-1.47), and decreased HHC (aOR = 0.79, 95% CI: 0.70-.90) compared to non-receipt of PC. Receipt of PC in outpatient settings was associated with increased prescriptions of pain medications (aOR = 2.54, 95% CI: 2.13-3.04) and antidepressants (aOR = 1.76, 95% CI: 1.46-2.12), and hospice enrollment (aOR = 2.09, 95% CI: 1.90-2.31) compared to receipt of PC in inpatient settings. CONCLUSIONS: PC is associated with increased use of symptom management medications, ACP, and hospice enrollment, especially when delivered in outpatient settings. These elements of care elucidate potential mechanisms for improved outcomes associated with PC and provide a framework for a primary palliative care approach among non-palliative care clinicians.
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Neoplasias Pulmonares , Qualidade de Vida , Humanos , Estudos Retrospectivos , Estudos de Coortes , Neoplasias Pulmonares/terapia , Dor , Assistência Centrada no PacienteRESUMO
BACKGROUND: A cancer diagnosis carries a significant economic burden. Yet little is known about perceived financial security on the health of couples with a partner diagnosed with cancer. OBJECTIVE: The current study explored perceived financial security in young-midlife couples. METHODS: The study included 49 couples (aged 27-58 years) 1 to 3 years after diagnosis. Multilevel modeling was used to examine the association of perceived financial security on physical and mental health of couples controlling for interdependent data; hierarchical linear regression was used to examine perceived financial security on survivor symptoms and partner care strain. RESULTS: Mean age of survivors was 43.5 (±9.0) years. Most survivors were female (69%) and 2.2 (±0.6) years after diagnosis. Lower levels of perceived financial security were significantly associated with poorer physical (P < .001) and mental (P < .05) health status for survivors, controlling for age, sex, education, and years since diagnosis; there were no significant associations with partner health status. Lower levels of perceived financial security were significantly associated with higher survivor pain severity (P < .001), pain interference (P < .001), and fatigue (P < .01); there was no significant association with partner care strain. CONCLUSIONS: Financial security plays a role on the physical and mental health of couples after diagnosis. IMPLICATIONS FOR PRACTICE: Screening for financial hardship at diagnosis and posttreatment can identify couples at high risk and in need of additional resources and counseling. Greater assessment and reporting of financial security in studies of families surviving cancer are needed to understand the impact on health outcomes.
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Saúde Mental , Neoplasias , Adulto , Fadiga , Feminino , Nível de Saúde , Humanos , Masculino , Pessoa de Meia-Idade , Neoplasias/psicologia , SobreviventesRESUMO
INTRODUCTION: Pancreatic ductal adenocarcinoma cancer (PDAC) remains a challenging diagnosis. The likelihood of long-term survival is limited even for patients who undergo maximal medical therapy with systemic chemotherapy and surgical resection. Within this intensive process, there remains limited understanding of patients' pretreatment expectations of PDAC treatment experience and their decision-making process. METHODS: PDAC patients who underwent chemotherapy and surgical resection were retrospectively identified. Semi-structured phone interviews were completed regarding patient experience with therapy. Qualitative descriptive analysis was performed, and categories, subcategories, and themes were determined. RESULTS: Fifteen patients were interviewed regarding their experience with PDAC treatment. An overall personal disease trajectory experience was identified with two phases. The first phase encompassed the patients' treatment. In this phase, patients expressed a choice, non-choice regarding therapy decisions, viewing therapy as the only option. Misconceptions about the roles of therapies and expected experience of treatment were observed. The second phase focused on life after therapy. Patients reported persistent physical changes secondary to therapy. An overall realistic understanding of the patient's limited prognosis was observed, with patients expressing appreciation of the life time gained as a benefit of treatment. CONCLUSIONS: There remains critical areas for improvement in communication and care of patients with PDAC. Physicians should continue to ensure that patient's goals and wishes are respected when making treatment decisions and confirm that patients understand the roles and limitations of prescribed therapies. Additionally, patients continue to have significant physical changes post treatment which should be assessed for and managed as appropriate to maintain quality of life.
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Carcinoma Ductal Pancreático , Neoplasias Pancreáticas , Carcinoma Ductal Pancreático/terapia , Humanos , Neoplasias Pancreáticas/terapia , Prognóstico , Qualidade de Vida , Estudos RetrospectivosRESUMO
Individuals with advanced liver disease (AdvLD), such as decompensated cirrhosis (DC) and hepatocellular carcinoma (HCC), have significant palliative needs. However, little research is available to guide health care providers on how to improve key domains related to palliative care (PC). We sought to identify priority areas for future research in PC by performing a comprehensive literature review and conducting iterative expert panel discussions. We conducted a literature review using search terms related to AdvLD and key PC domains. Individual reviews of these domains were performed, followed by iterative discussions by a panel consisting of experts from multiple disciplines, including hepatology, specialty PC, and nursing. Based on these discussions, priority areas for research were identified. We identified critical gaps in the available research related to PC and AdvLD. We developed and shared five key priority questions incorporating domains related to PC. Conclusion: Future research endeavors focused on improving PC in AdvLD should consider addressing the five key priorities areas identified from literature reviews and expert panel discussions.
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PURPOSE: Adults with hepatocellular carcinoma (HCC) have a high symptom burden. Their quality of life (QOL) has been shown to be significantly impacted by both the disease and its treatment, adding to the high symptom burden that these patients experience. The primary aims of this paper are as follows: (1) to identify how QOL is being defined in HCC literature and (2) to identify how QOL is being measured in the HCC literature using Ferrell's model of QOL. METHODS: A systematic review was completed of relevant studies published after 2014, using PubMed, CINHAL, and PsycInfo. Relevant studies were reviewed by 2 reviewers using PRISMA guidelines. RESULTS: From a total of 1312 papers obtained in the initial database search, 30 met inclusion criteria and are included in this review. From the included articles, 10% included a definition of QOL and 3% addressed the spiritual domain of QOL. Majority of study participants were in the early stage of HCC, though the majority of adults with HCC are diagnosed in the advanced stage. Only 3% of included studies included greater than 22% population of advanced stage of HCC. CONCLUSION: The results of this systematic review demonstrate the need for future research into QOL in the advanced stage of QOL. It also identified gap in the literature concerning the definition of QOL in HCC and the spiritual domain of QOL in HCC.
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Carcinoma Hepatocelular/psicologia , Neoplasias Hepáticas/psicologia , Qualidade de Vida/psicologia , Adulto , Idoso , Carcinoma Hepatocelular/patologia , Carcinoma Hepatocelular/terapia , Feminino , Nível de Saúde , Humanos , Neoplasias Hepáticas/patologia , Neoplasias Hepáticas/terapia , Masculino , Pessoa de Meia-IdadeRESUMO
PURPOSE: Cancer survivors are now living longer giving rise to a new concept-chronic cancer as survivors continue to face long-term consequences of cancer and its treatment. For these survivors, QOL becomes a vital consideration in understanding their survivorship and the long-term impact of cancer and its treatment. The primary aim of this review is to describe QOL in cancer survivors two or more years from diagnosis. METHODS: A meta-analysis was completed of relevant studies assessing QOL in long-term cancer survivorship using PubMed, CINHAL, and PsycINFO. A total of 64 articles met inclusion criteria and included in the analysis. Standardized effect sizes and errors were calculated using previously published standard QOL pass rates to compare QOL across measurement tools and calculate cumulative effect sizes (CES). Fixed-effect or random-effects models were used based on the presence of significant heterogeneity of ≤ 0.10. RESULTS: Physical health (CES = - 0.894; CI, - 1.472, - 0.316), role-physical health (CES = - 2.039; CI, - 2.643, - 1.435), and mental health (CES = - 0.870; CI, - 1.447, - 0.292) had large, negative cumulative effect sizes signifying worse QOL compared with acceptable QOL rates. Tested moderators, cancer type, average age, country of origin, time since diagnosis, or decade of diagnosis, were not significant to explain heterogeneity between included studies. CONCLUSION: QOL is significantly impacted 2 to 26 years after cancer diagnosis. More research is needed to determine possible moderators of QOL in long-term cancer survivors. IMPLICATIONS FOR CANCER SURVIVORS: QOL continues to be significantly impacted in long-term cancer survivorship. More research is needed to understand the impact of these findings on care needs for survivors with chronic cancer.
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Sobreviventes de Câncer/psicologia , Neoplasias/mortalidade , Qualidade de Vida/psicologia , Idoso , Feminino , Humanos , Masculino , Pessoa de Meia-IdadeRESUMO
Importance: Palliative care is a patient-centered approach associated with improvements in quality of life; however, results regarding its association with a survival benefit have been mixed, which may be a factor in its underuse. Objective: To assess whether early palliative care is associated with a survival benefit among patients with advanced lung cancer. Design, Setting, and Participants: This retrospective population-based cohort study was conducted among patients with lung cancer who were diagnosed with cancer between January 1, 2007, and December 31, 2013, with follow-up until January 23, 2017. Participants comprised 23â¯154 patients with advanced lung cancer (stage IIIB and stage IV) who received care in the Veterans Affairs health care system. Data were analyzed from February 15, 2019, to April 28, 2019. Exposure: Palliative care defined as a specialist-delivered palliative care encounter received after lung cancer diagnosis. Main Outcomes and Measures: The primary outcome was survival. The association between palliative care and place of death was also examined. Propensity score and time-varying covariate methods were used to calculate Cox proportional hazards and to perform regression modeling. Results: Of the 23â¯154 patients enrolled in the study, 57% received palliative care. The mean (SD) age of participants was 68 (9.5) years, and 98% of participants were men. An examination of the timing of palliative care receipt relative to cancer diagnosis found that palliative care received 0 to 30 days after diagnosis was associated with decreases in survival (adjusted hazard ratio [aHR], 2.13; 95% CI, 1.97-2.30), palliative care received 31 to 365 days after diagnosis was associated with increases in survival (aHR, 0.47; 95% CI, 0.45-0.49), and palliative care received more than 365 days after diagnosis was associated with no difference in survival (aHR, 1.00; 95% CI, 0.94-1.07) compared with nonreceipt of palliative care. Receipt of palliative care was also associated with a reduced risk of death in an acute care setting (adjusted odds ratio, 0.57; 95% CI, 0.52-0.64) compared with nonreceipt of palliative care. Conclusions and Relevance: The results suggest that palliative care was associated with a survival benefit among patients with advanced lung cancer. Palliative care should be considered a complementary approach to disease-modifying therapy in patients with advanced lung cancer.
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Neoplasias Pulmonares/terapia , Cuidados Paliativos/métodos , Tempo para o Tratamento , Idoso , Terapias Complementares , Feminino , Humanos , Neoplasias Pulmonares/mortalidade , Neoplasias Pulmonares/patologia , Masculino , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Pontuação de Propensão , Estudos Retrospectivos , Análise de Sobrevida , Saúde dos Veteranos , Serviços de Saúde para Veteranos MilitaresRESUMO
PURPOSE: Hepatocellular carcinoma (HCC), the most common type of primary liver cancer, has a rapidly rising prevalence in the United States and a very poor overall rate of survival. This epidemic is driven by the cohort of aging Baby Boomers with hepatitis C viral infection and the increasing prevalence of cirrhosis as a result of nonalcoholic steatohepatitis. Because curative options are limited, the disease course creates, in patients and their families, distressing uncertainty around prognosis and treatment decisions. Older adults are disproportionately affected by HCC and have more comorbidities, adding to the complexity of the disease. This population would benefit from increased access to palliative care services, which can potentially complement the treatments throughout the disease trajectory. The purpose of this review was to use existing evidence to propose a new model of palliative care integration in patients with HCC. Thus, we focus on the HCC stage and the treatment algorithm, the ways that palliative care can offer support in this population at each stage, as well as elements that can enhance patient and family support throughout the entire disease trajectory, with an emphasis on the care of older adults with HCC. METHODS: This is a narrative review in which we identify evidence-based ways that palliative care can help younger and older adults with HCC and their families, at each stage of HCC and throughout the disease trajectory. FINDINGS: We propose ways to integrate HCC and palliative care based on the existing evidence in both fields. Palliative care offers support in symptom management, advanced care planning, and decision making in ways that are specific to each stage of HCC. We also discuss the evidence that illustrates the palliative care needs of patients with HCC that span the entire course of illness, including coping with the stigmatization of liver disease, addressing informational needs at different stages, and discussing quality of life longitudinally. IMPLICATIONS: Integrating palliative care into the treatment of patients with HCC has the potential to improve outcomes, although more research is needed to build this evidence base.
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Carcinoma Hepatocelular/terapia , Neoplasias Hepáticas/terapia , Cuidados Paliativos/métodos , Idoso , Tomada de Decisões , Humanos , Masculino , Qualidade de Vida , Estados UnidosRESUMO
BACKGROUND: Hospice, a patient-centered care system for those with limited life expectancy, is important for enhancing quality of life and is understudied in integrated health care systems. METHODS: This was a retrospective cohort study of 21,860 decedents with advanced-stage lung cancer diagnosed from January 2007 to June 2013 in the national US Veterans Affairs Health Care System. Trends over time, geographic regional variability, and patient and tumor characteristics associated with hospice use and the timing of enrollment were examined. Multivariable logistic regression and Cox proportional hazards modeling were used. RESULTS: From 2007 to 2013, 70.3% of decedents with advanced-stage lung cancer were enrolled in hospice. Among patients in hospice, 52.9% were enrolled in the last month of life, and 14.7% were enrolled in the last 3 days of life. Hospice enrollment increased (adjusted odds ratio [AOR], 1.07; P < .001), whereas the mean time from the cancer diagnosis to hospice enrollment decreased by 65 days (relative decrease, 32%; adjusted hazard ratio, 1.04; P < .001). Relative decreases in late hospice enrollment were observed in the last month (7%; AOR, 0.98; P = .04) and last 3 days of life (26%; AOR, 0.95; P < .001). The Southeast region of the United States had both the highest rate of hospice enrollment and the lowest rate of late enrollment. Patient sociodemographic and lung cancer characteristics were associated with hospice enrollment. CONCLUSIONS: Among patients with advanced-stage lung cancer in the Veterans Affairs Health Care System, overall and earlier hospice enrollment increased over time. Considerable regional variability in hospice enrollment and the persistence of late enrollment suggests opportunities for improvement in end-of-life care. Cancer 2018;124:426-33. © 2017 American Cancer Society.
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Prestação Integrada de Cuidados de Saúde , Cuidados Paliativos na Terminalidade da Vida , Neoplasias Pulmonares/terapia , Idoso , Feminino , Humanos , Masculino , Estudos RetrospectivosRESUMO
PURPOSE/OBJECTIVES: To describe the presence, frequency, severity, and distress of symptoms in outpatients with advanced hepatocellular carcinoma toward the end of life, and the variability in psychological and physical symptom distress between and within patients over time. â©. DESIGN: A prospective, longitudinal, descriptive design. â©. SETTING: Outpatient clinics at two healthcare institutions. â©. SAMPLE: 18 patients (15 men and 3 women) with hepatocellular carcinoma and a mean age of 63.3 years (range = 54-81 years).â©. METHODS: Data were collected monthly for six months. Patients completed the Memorial Symptom Assessment Scale, which reports a total score, and three subscales that provide global distress, psychological distress, and physical distress scores.â©. MAIN RESEARCH VARIABLES: Global, psychological, and physical distress.â©. FINDINGS: Patients reported lack of energy and pain as the most frequent and distressing symptoms. Problems with sexual interest or activity was the fourth most present symptom after drowsiness. Global Distress Index mean scores had notable variability between and within patients over time. During data collection, six patients died. None were referred to palliative care.â©. CONCLUSIONS: Gaining knowledge about symptom distress and prevalent symptoms experienced by patients with advanced hepatocellular carcinoma is critical for designing symptom management strategies that are comprehensive and tailored to patients to optimize their quality of life as they approach death.â©. IMPLICATIONS FOR NURSING: Nurses play a vital role in advocating for, initiating, and providing comprehensive holistic care based on individual patient needs by facilitating discussions about apparent and less apparent distressing symptoms, including those related to sexuality.
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Carcinoma Hepatocelular/psicologia , Neoplasias Hepáticas/psicologia , Pacientes Ambulatoriais/psicologia , Dor/psicologia , Qualidade de Vida/psicologia , Estresse Psicológico , Idoso , Idoso de 80 Anos ou mais , Atitude Frente a Morte , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Estudos ProspectivosRESUMO
PURPOSE/OBJECTIVES: To explore family caregivers' perspectives of caring for patients with terminal hepatocellular carcinoma (HCC) as patients approached the end of life.â©. RESEARCH APPROACH: Longitudinal, qualitative descriptive design.â©. SETTING: Oregon Health and Science University in Portland and Veterans Affairs Portland Health Care System in Oregon.â©. PARTICIPANTS: 13 family caregivers with a mean age of 56 years (range = 22-68 years). The majority of family caregivers were female (n = 10) and identified as White (n = 11).â©. METHODOLOGIC APPROACH: Interview data were collected from family caregivers once a month for as many as six months, for a total of 39 interviews. Data were analyzed using conventional content analysis.â©. FINDINGS: Five core categories and nine subcategories were identified. From the time of the terminal diagnosis to the end of life, family caregivers felt unprepared, uncertain, and in need of information. They struggled with whether symptoms were HCC- or cirrhosis-related.â©. INTERPRETATION: Nurses can support family caregivers by eliciting their knowledge and concerns, and attending to symptom presentation and interpretation and to treatment challenges. Understanding challenges caregivers experience is crucial for developing interventions that address their desire for information, support, and help along the HCC disease trajectory.â©. IMPLICATIONS FOR NURSING: Nurses play a critical role in preparing caregivers to understand the importance of pain assessment and management and early referral to palliative care.
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Carcinoma Hepatocelular/enfermagem , Cuidadores/psicologia , Relações Familiares/psicologia , Neoplasias Hepáticas/enfermagem , Cuidados Paliativos/psicologia , Qualidade de Vida/psicologia , Assistência Terminal/psicologia , Adulto , Idoso , Atitude Frente a Morte , Carcinoma Hepatocelular/psicologia , Feminino , Humanos , Neoplasias Hepáticas/psicologia , Masculino , Pessoa de Meia-Idade , Oregon , Pesquisa Qualitativa , Adulto JovemRESUMO
Over half a million Americans are affected by cirrhosis, the cause of end-stage liver disease (ESLD). Little is known about how symptom burden changes over time in adults with ESLD and their informal caregivers, which limits our ability to develop palliative care interventions that can optimize symptom management and quality of life in different patient-caregiver dyads. The purpose of this article is to describe the background and design of a prospective, longitudinal descriptive study, "Symptom Burden in End-Stage Liver Disease Patient-Caregiver Dyads," which is currently in progress. The study is designed to (i) identify trajectories of change in physical and psychological symptom burden in adults with ESLD; (ii) identify trajectories of change in physical and psychological symptom burden in caregivers of adults with ESLD; and (iii) determine predictors of types of patient-caregiver dyads that would benefit from tailored palliative care interventions. We aim for a final sample of 200 patients and 200 caregivers who will be followed over 12 months. Integrated multilevel and latent growth mixture modeling will be used to identify trajectories of change in symptom burden, linking those changes to clinical events, and quality of life outcomes and characterizing types of patient-caregiver dyads based on patient-, caregiver-, and dyad-level factors. Challenges we have encountered include unexpected attrition of study participants, participants not returning their baseline questionnaires, and hiring and training of research staff. The study will lay the foundation for future research and innovation in ESLD, end-of-life and palliative care, and caregiving.
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Cuidadores/psicologia , Doença Hepática Terminal/fisiopatologia , Doença Hepática Terminal/psicologia , Cirrose Hepática/fisiopatologia , Cirrose Hepática/psicologia , Cuidados Paliativos/psicologia , Pacientes/psicologia , Adulto , Idoso , Idoso de 80 Anos ou mais , Feminino , Humanos , Estudos Longitudinais , Masculino , Pessoa de Meia-Idade , Pesquisa em Enfermagem , Estudos Prospectivos , Qualidade de Vida/psicologia , Projetos de Pesquisa , Inquéritos e Questionários , Estados UnidosRESUMO
In patients with colorectal cancer (CRC) that metastasizes to the liver, there are several key goals for improving outcomes including early detection, effective prognostic indicators of treatment response, and accurate identification of patients at high risk for recurrence. Although new therapeutic regimens developed over the past decade have increased survival, there is substantial room for improvement in selecting targeted treatment regimens for the patients who will derive the most benefit. Recently, there have been exciting developments in identifying high-risk patient cohorts, refinements in the understanding of systemic vs localized drug delivery to metastatic niches, liquid biomarker development, and dramatic advances in tumor immune therapy, all of which promise new and innovative approaches to tackling the problem of detecting and treating the metastatic spread of CRC to the liver. Our multidisciplinary group held a state-of-the-science symposium this past year to review advances in this rapidly evolving field. Herein, we present a discussion around the issues facing treatment of patients with CRC liver metastases, including the relationship of discrete gene signatures with prognosis. We also discuss the latest advances to maximize regional and systemic therapies aimed at decreasing intrahepatic recurrence, review recent insights into the tumor microenvironment, and summarize advances in noninvasive multimodal biomarkers for early detection of primary and recurrent disease. As we continue to advance clinically and technologically in the field of colorectal tumor biology, our goal should be continued refinement of predictive and prognostic studies to decrease recurrence after curative resection and minimize treatment toxicity to patients through a tailored multidisciplinary approach to cancer care.
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RATIONALE: To understand how well palliative care is provided in the intensive care unit (ICU) and to direct improvements, measurement of the quality of care delivered is requisite. OBJECTIVES: To measure the quality of palliative care delivered in the ICU, using chart review-derived process quality measures of palliative care in critically ill patients, and to compare these measures with family and nursing perspectives on the quality of care provided. METHODS: We developed and operationalized a comprehensive quality evaluation measure set from previously endorsed palliative care measure statements, using a rigorous multidisciplinary Delphi process focused on optimizing the validity and feasibility of chart review-derived metrics. Fourteen process measures assessed the quality of care delivered across established domains of palliative care for the ICU. We assessed the quality of care for ICU patients with ICU length of stay exceeding 2 days from three perspectives: medical record reviews, family satisfaction reports, and nurse ratings from those providing care in the ICU. MEASUREMENTS AND MAIN RESULTS: We evaluated the care over a 7-month period of 150 patients (mean age, 63.9 yr [SD 13.4], average ICU length of stay, 7.5 d [SD 7.2]). Overall, ICU patients received 53.1% of recommended palliative care. The Family Satisfaction with Care in the Intensive Care Unit total scores from 136 family members (response rate, 91%) were high, 85.7 (SE 2.0) and 86.0 (SE 1.6), at the two sites but not correlated to measured quality delivered. Nurses rated the quality of care higher than medical record review (mean, 77.3% [SD 13.4]; n = 135) and similarly correlation with chart based process measures was poor. CONCLUSIONS: Delivering high-quality palliative care in the ICU requires assessing key patient-centered domains. However, assessments from different perspectives do not always agree with technical quality of care as measured through chart-based metrics. We found deficits across seven domains of technical quality that were not correlated with either nurse or family ratings. Despite care gaps, families were generally satisfied with the care delivered. We conclude that each measurement perspective provides an independent view that can guide quality improvement and innovation work as well as subsequent research.
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Estado Terminal/terapia , Unidades de Terapia Intensiva/normas , Prontuários Médicos , Cuidados Paliativos/normas , Satisfação do Paciente , Idoso , California , Família , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Enfermeiras e Enfermeiros , Qualidade da Assistência à SaúdeRESUMO
BACKGROUND: Hundreds of thousands of incidental pulmonary nodules are detected annually in the United States, and this number will increase with the implementation of lung cancer screening. The lengthy period for active pulmonary nodule surveillance, often several years, is unique among cancer regimens. The psychosocial impact of longitudinal incidental nodule follow-up, however, has not been described. AIMS: We sought to evaluate the psychosocial impact of longitudinal follow-up of incidental nodule detection on patients. METHODS: Veterans who participated in our previous study had yearly follow-up qualitative interviews coinciding with repeat chest imaging. We used conventional content analysis to explore their knowledge of nodules and the follow-up plan, and their distress. RESULTS: Seventeen and six veterans completed the year one and year two interviews, respectively. Over time, most patients continued to have inadequate knowledge of pulmonary nodules and the nodule follow-up plan. They desired and appreciated more information directly from their primary care provider, particularly about their lung cancer risk. Distress diminished over time for most patients, but it increased around the time of follow-up imaging for some, and a small number reported severe distress. CONCLUSIONS: In settings in which pulmonary nodules are commonly detected, including lung cancer screening programmes, resources to optimise patient-centred communication strategies that improve patients' knowledge and reduce distress should be developed.