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INTRODUCTION: Suicide rates are elevated after cancer diagnosis. Existential distress caused by awareness of one's impending death is well-described in patients with cancer. The authors hypothesized that suicide risk is associated with cancer prognosis, and the impact of prognosis on suicide risk is greatest for populations with higher baseline suicide risk. METHODS: The authors identified patients (≥16 years old) with newly diagnosed cancers from 2000 to 2019 in the Surveillance, Epidemiology, and End Results database, representing 27% of US cancers. Multiple primary-standardized mortality ratios (SMR) were used to estimate the relative risk of suicide within 6 months of diagnosis compared to the general US population, adjusted for age, sex, race, and year of follow-up. Suicide rates by 20 most common cancer sites were compared with respective 2-year overall survival rates (i.e., prognosis) using a weighted linear regression model. RESULTS: Among 6,754,704 persons diagnosed with cancer, there were 1610 suicide deaths within 6 months of diagnosis, three times higher than the general population (SMR = 3.1; 95% confidence interval, 3.0-3.3). Suicide risk by cancer site was closely associated with overall prognosis (9.5%/percent survival deficit, R2 = 0.88, p < .0001). The association of prognosis with suicide risk became attenuated over time. For men, the risk of suicide increased by 2.8 suicide deaths per 100,000 person-years (p < .0001) versus 0.3 in women (p < .0001). The risk was also higher for persons ≥60 old and for the White (vs. Black) race. CONCLUSIONS: Poorer prognosis was closely associated with suicide risk early after cancer diagnosis and had a greater effect on populations with higher baseline risks of suicide. This model highlights the need for enhanced psychiatric surveillance and continued research in this patient population.
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Neoplasias , Suicídio , Humanos , Masculino , Feminino , Adolescente , Suicídio/psicologia , Neoplasias/diagnóstico , Neoplasias/psicologia , Prognóstico , Risco , Fatores de RiscoRESUMO
OBJECTIVES: To examine associations between family surrogates' bereavement outcomes and four previously determined quality of dying and death (QODD) latent classes (high, moderate, poor-to-uncertain, and worst). DESIGN: Prospective, longitudinal, observational study. SETTING: Medical ICUs at two academically affiliated medical centers in Taiwan. PATIENTS/PARTICIPANTS: Three hundred nine family surrogates responsible for decision-making for critically ill patients at high risk of death (Acute Physiology and Chronic Health Evaluation II scores > 20) from a disease. INTERVENTIONS: None. MEASUREMENTS AND MAIN RESULTS: Participants were assessed by the depression and anxiety subscales of the Hospital Anxiety and Depression Scale, the Impact of Event Scale-Revised, 11 items of the Prolonged Grief Disorder (PGD) scale, and the Medical Outcomes Study 36-Item Short-Form Health Survey at 1, 3, 6, 13, 18, and 24 months post-loss. We simultaneously examined associations of four QODD latent classes with physical and mental health-related quality of life (HRQOL) and symptoms of anxiety, depression, post-traumatic stress disorder (PTSD), and PGD assessed over 24 bereavement months using multivariate hierarchical linear modeling. Surrogates' distinct QODD latent classes assessed at 1-month post-loss were significantly associated with bereavement outcomes, except for physical HRQOL and PGD symptoms. Significantly more depressive symptoms and worse mental HRQOL (ß [95% CI]) were reported by bereaved surrogates in the moderate (1.958 [1.144-2.772], -2.245 [-3.961 to -0.529]), poor-to-uncertain (2.224 [1.438-3.010], -7.026 [-8.683 to -5.369]), and worst (2.081 [1.215-2.964], -4.268 [-6.096 to -2.440]) QODD classes than those in the high QODD class. Bereaved surrogates in the moderate (2.095 [1.392-2.798]) and poor-to-uncertain (0.801 [0.123-1.480]) QODD classes reported more anxiety symptoms, whereas those in the poor-to-uncertain QODD class suffered more PTSD symptoms (2.889 [1.005-4.774]) than those in the high QODD class. CONCLUSIONS: The four distinct QODD latent classes were significantly associated with ICU family surrogates' bereavement outcomes, suggesting targets to improve end-of-life care quality in ICUs.
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Ansiedade , Luto , Família , Unidades de Terapia Intensiva , Qualidade de Vida , Humanos , Masculino , Feminino , Estudos Prospectivos , Pessoa de Meia-Idade , Unidades de Terapia Intensiva/estatística & dados numéricos , Família/psicologia , Qualidade de Vida/psicologia , Taiwan/epidemiologia , Estudos Longitudinais , Idoso , Depressão/epidemiologia , Adulto , Estado Terminal/psicologia , Transtornos de Estresse Pós-Traumáticos/psicologia , Transtornos de Estresse Pós-Traumáticos/epidemiologia , Análise de Classes LatentesRESUMO
There are many misconceptions about Prolonged Grief Disorder (PGD). We show with data that PGD is a diagnosis that applies to a rare few of mourners who are at risk of significant distress and dysfunction. Those mourners who meet criteria for PGD have been shown to benefit from specialized, targeted treatment for it. The case against PGD is empirically unsubstantiated, and the need for scientific examination of effective treatments is warranted.
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Luto , Humanos , Pesar , Transtorno do Luto ProlongadoRESUMO
Prolonged Grief Disorder (PGD) manifests as a long-lasting and incapacitating response to bereavement. The goal of this qualitative study is to understand the intricate interplay of risk and protective factors that underlie PGD by exploring into the perspectives of expert clinicians in Pakistan. Our investigation encompassed in-depth interviews with eight clinical experts comprising clinical psychologists (N = 4, possessing Higher Education Commission-recognized degrees) and psychiatrists (N = 4, certified by Pakistan Medical Commission). Collectively, these professionals possessed a wealth of knowledge exceeding five years in the specialized management of PGD. Thematic analysis of the transcribed interviews, conducted using NVIVO, revealed a comprehensive taxonomy of risk factors contributing to PGD. These encompassed maladaptive thought patterns, psychological distress, attachment styles, and environmental factors. We identified a host of protective factors that may mitigate the development of PGD. These encompassed cultural, social, and familial support systems, individual coping mechanisms, and various treatment modalities.
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OBJECTIVES: The PG-13-Revised (PG-13-R) is a self-report measure to assess prolonged grief disorder (PGD) in terms of Diagnostic and Statistical Manual of Mental Disorders, fifth revision, Text Revision. This measure has been shown to yield good psychometric properties in Western samples. This study aimed to evaluate the psychometric properties of the Persian PG-13-R. METHODS: Three hundred forty-seven individuals (209 women and 138 men) fully completed the scales. The participants were recruited using convenience sampling. The confirmatory factor analysis (CFA), convergent and divergent validity, and reliability of the Persian version of the PG-13-R were evaluated. RESULTS: CFA results of a unidimensional model support the construct validity of this version of the PG-13-R. The results of this study demonstrated that this version of the PG-13-R has internal consistency reliability (omega coefficient of 0.93), and the test-retest reliability with an interval of 6 weeks was 0.89. The convergent and divergent validity was shown with significant correlations between the PG-13-R and measures of depression, PTSD, functional impairment, and hope. SIGNIFICANCE OF RESULTS: Overall, the Persian version of the PG-13-R showed good psychometric properties in the Iranian population.
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Pesar , Transtorno do Luto Prolongado , Adulto , Masculino , Humanos , Feminino , Psicometria , Irã (Geográfico) , Reprodutibilidade dos Testes , AutorrelatoRESUMO
OBJECTIVES: Accurate prognostic understanding among patients with advanced cancer and their caregivers is associated with greater engagement in advance care planning (ACP) and receipt of goal-concordant care. Poor prognostic understanding is more prevalent among racial and ethnic minority patients. The purpose of this study was to examine the feasibility, acceptability, and impact of a patient-caregiver communication-based intervention to improve prognostic understanding, engagement in ACP, and completion of advance directives among a racially and ethnically diverse, urban sample of patients and their caregivers. METHODS: Patients with advanced cancer and their caregivers (n = 22 dyads) completed assessments of prognostic understanding, engagement in ACP, and completion of advance directives at baseline and post-intervention, Talking About Cancer (TAC). TAC is a 7-session intervention delivered remotely by licensed social workers that includes distress management and communication skills, review of prognosis, and information on ACP. RESULTS: TAC met a priori benchmarks for feasibility, acceptability, and fidelity. Prognostic understanding and engagement in ACP did not change over time. However, patients showed increases in completion of advance directives. SIGNIFICANCE OF RESULTS: TAC was feasible, acceptable, and delivered with high fidelity. Involvement of caregivers in TAC may provide added layers of support to patients facing advanced cancer diagnoses, especially among racial and ethnic minorities. Trends indicated greater completion of advance directives but not in prognostic understanding or engagement in ACP. Future research is needed to optimize the intervention to improve acceptability, tailor to diverse patient populations, and examine the efficacy of TAC in a randomized controlled trial.
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Planejamento Antecipado de Cuidados , Neoplasias , Humanos , Cuidadores , Projetos Piloto , Prognóstico , Etnicidade , Grupos Minoritários , Neoplasias/complicações , Neoplasias/terapia , ComunicaçãoRESUMO
BACKGROUND & AIMS: Patients require a clear understanding of their prognosis to make informed decisions about their care. The aim of this study was to compare the perceptions of prognosis and transplant candidacy between patients with cirrhosis and their hepatologists. METHODS: Patients with cirrhosis and their hepatologists were prospectively recruited at an urban liver transplant center. Patients and hepatologists were asked about transplant candidacy and about how many years patients would live with and without a liver transplant. Agreement between patients and hepatologists was assessed with the weighted kappa statistic. Associations between patient/hepatologists' prognostic estimates and those predicted by patients' Model for End-Stage Liver Disease-Sodium (MELD-Na) score were estimated using the Pearson correlation coefficient. RESULTS: Seventy patients and 6 hepatologists were enrolled in the study. Patients were predominantly male (61.4%) and white (68.6%), with a mean MELD-Na score of 19 ± 9. There was no-slight agreement between patients and hepatologists regarding survival without and with a liver transplant (κ = 0.1 and 0.2, respectively), with patients more optimistic than their hepatologists. There was greater agreement between patients and hepatologists about transplant candidacy (κ = 0.6). There was a negligible association between MELD-Na and patient estimates (r = -0.24, P = .05) but a moderate association between MELD-Na and hepatologist estimates (r = -0.51, P < .001), with higher MELD-Na scores associated with lower predicted survival. CONCLUSIONS: Patients with cirrhosis are more optimistic and less accurate in their predictions of survival compared with hepatologists, although they are more realistic about their transplant candidacy. Aligning patient and provider expectations may increase the likelihood that patients receive value-concordant care.
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Doença Hepática Terminal , Gastroenterologistas , Humanos , Masculino , Feminino , Índice de Gravidade de Doença , Cirrose Hepática/complicações , Prognóstico , Estudos RetrospectivosRESUMO
OBJECTIVES: Grief-related psychological distress often co-occurs to conjointly impair function during bereavement. Knowledge of comorbid grief-related psychological distress is limited: no longitudinal study has examined dynamic patterns of co-occurring prolonged grief disorder (PGD), posttraumatic stress disorder (PTSD), and depression, and previous assessment time frames have been variable and potentially inadequate given the duration criterion for PGD. Therefore, the purpose of this study was to investigate the transition of distinct symptom states based on the co-occurrence of PGD, PTSD, and depression symptoms for ICU bereaved surrogates over their first two bereavement years. DESIGN: Prospective, longitudinal, observational study. SETTING: Medical ICUs at two academically affiliated medical centers in Taiwan. PATIENTS/PARTICIPANTS: Three hundred three family surrogates responsible for decision-making for critically ill patients at high risk of death (Acute Physiology and Chronic Evaluation II scores > 20) from a disease. INTERVENTION: None. MEASUREMENTS AND MAIN RESULTS: Participants were assessed by 11 items of the Prolonged Grief Disorder (PG-13) scale, the Impact of Event Scale-Revised, and the depression subscale of the Hospital Anxiety and Depression Scale at 6, 13, 18, and 24 months postloss. PGD-PTSD-depression-symptom states and their evolution were examined by latent transition analysis. The following four distinct PGD-PTSD-depression-symptom states (prevalence) were initially identified: resilient (62.3%), subthreshold depression-dominant (19.9%), PGD-dominant (12.9%), and PGD-PTSD-depression comorbid (4.9%) states. These PGD-PTSD-depression-symptom states remained highly stable during the first two bereavement years, with transitions predominantly toward resilience. Prevalence for each state at 24 months postloss was 82.1%, 11.4%, 4.0%, and 2.5%, respectively. CONCLUSIONS: Four highly stable PGD-PTSD-depression-symptom states were identified, highlighting the importance of screening for subgroups of ICU bereaved surrogates with increased PGD or comorbid PGD, PTSD, and depression symptoms during early bereavement.
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Luto , Depressão , Transtorno do Luto Prolongado , Transtornos de Estresse Pós-Traumáticos , Humanos , Depressão/epidemiologia , Depressão/psicologia , Estudos Prospectivos , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Estudos LongitudinaisRESUMO
BACKGROUND: Physicians treating similar patients in similar care-delivery contexts vary in the intensity of life-extending care provided to their patients at the end-of-life. Physician psychological propensities are an important potential determinant of this variability, but the pertinent literature has yet to be synthesized. OBJECTIVE: Conduct a review of qualitative studies to explicate whether and how psychological propensities could result in some physicians providing more intensive treatment than others. METHODS: Systematic searches were conducted in five major electronic databases-MEDLINE ALL (Ovid), Embase (Elsevier), CINAHL (EBSCO), PsycINFO (Ovid), and Cochrane CENTRAL (Wiley)-to identify eligible studies (earliest available date to August 2021). Eligibility criteria included examination of a physician psychological factor as relating to end-of-life care intensity in advanced life-limiting illness. Findings from individual studies were pooled and synthesized using thematic analysis, which identified common, prevalent themes across findings. RESULTS: The search identified 5623 references, of which 28 were included in the final synthesis. Seven psychological propensities were identified as influencing physician judgments regarding whether and when to withhold or de-escalate life-extending treatments resulting in higher treatment intensity: (1) professional identity as someone who extends lifespan, (2) mortality aversion, (3) communication avoidance, (4) conflict avoidance, (5) personal values favoring life extension, (6) decisional avoidance, and (7) over-optimism. CONCLUSIONS: Psychological propensities could influence physician judgments regarding whether and when to de-escalate life-extending treatments. Future work should examine how individual and environmental factors combine to create such propensities, and how addressing these propensities could reduce physician-attributed variation in end-of-life care intensity.
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Médicos , Assistência Terminal , Humanos , Comunicação , Morte , Preparações FarmacêuticasRESUMO
BACKGROUND/OBJECTIVE: Bereaved family surrogates from intensive care units (ICU) are at risk of comorbid anxiety, depression, and post-traumatic stress disorder (PTSD), but the temporal reciprocal relationships among them have only been examined once among veterans. This study aimed to longitudinally investigate these never-before-examined temporal reciprocal relationships for ICU family members over their first two bereavement years. METHODS: In this prospective, longitudinal, observational study, symptoms of anxiety, depression, and PTSD were assessed among 321 family surrogates of ICU decedents from 2 academically affiliated hospitals in Taiwan by the anxiety and depression subscales of the Hospital Anxiety and Depression Scale, and the Impact of Event Scale-Revised, respectively at 1, 3, 6, 13, 18, and 24 months postloss. Cross-lagged panel modeling was conducted to longitudinally examine the temporal reciprocal relationships among anxiety, depression, and PTSD. RESULTS: Examined psychological-distress levels were markedly stable over the first 2 bereavement years: autoregressive coefficients for symptoms of anxiety, depression, and PTSD were 0.585-0.770, 0.546-0.780, and 0.440-0.780, respectively. Cross-lag coefficients showed depressive symptoms predicted PTSD symptoms in the first bereavement year, whereas PTSD symptoms predicted depressive symptoms in the second bereavement year. Anxiety symptoms predicted symptoms of depression and PTSD at 13 and 24 months postloss, whereas depressive symptoms predicted anxiety symptoms at 3 and 6 months postloss while PTSD symptoms predicted anxiety symptoms during the second bereavement year. CONCLUSIONS: Different patterns of temporal relationships among symptoms of anxiety, depression, and PTSD over the first 2 bereavement years present important opportunities to target symptoms of specific psychological distress at different points during bereavement to prevent the onset, exacerbation, or maintenance of subsequent psychological distress.
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Luto , Transtornos de Estresse Pós-Traumáticos , Humanos , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Transtornos de Estresse Pós-Traumáticos/psicologia , Depressão/psicologia , Estudos Prospectivos , Ansiedade , Família/psicologia , Unidades de Terapia IntensivaRESUMO
This study aims to investigate the psychometric properties, stability, and predictive validity of the PG-13-K. Two subsamples were used: the first subsample (N = 153), participated at Time 1 only, and the second subsample (N = 184) participated at both Time 1 and Time 2. At each time point, reliability, test-retest reliability, and validity were adequate, and the hypothesized two-factor model indicated good to excellent fit. Moreover, the PG-13-K was able to predict the correlation between prolonged grief disorder (PGD) and negative psychological factors. The PG-13-K is a useful and valid instrument for measuring PGD symptoms in Korean settings.
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Pesar , Transtorno do Luto Prolongado , Humanos , Psicometria , Estudos Longitudinais , Reprodutibilidade dos Testes , População do Leste Asiático , República da CoreiaRESUMO
PURPOSE: To examine associations between financial hardship and suicidal ideation among bereaved informal caregivers of cancer patients. DESIGN: Longitudinal cohort study. SAMPLE: 173 informal caregivers of advanced cancer patients. METHODS: Caregivers were interviewed a median 3.1 months before and 6.5 months after the death of the patient they cared for. Logistic regression models estimated associations between caregiver-perceived pre-loss and post-loss financial hardship due to the patient's illness and post-loss suicidal ideation. FINDINGS: Suicidal ideation was identified in 12% (n = 21) of the sample pre-loss, rising to 20% (n = 34) post-loss (p=.049). Pre-loss financial hardship (OR = 3.4, 95% CI = 1.5-7.4, p=.002) and post-loss financial hardship (OR = 3.7, 95% CI = 1.7-8.2, p=.001) were each bivariately associated with post-loss suicidal ideation. In multivariable models adjusting for pre-loss suicidal ideation, psychiatric diagnosis, and spousal relationship to the patient, post-loss financial hardship remained significantly associated with post-loss suicidal ideation (AOR = 3.6, 95% CI = 1.4-8.8, p=.006). CONCLUSION: Among a cohort of cancer caregivers followed from active caregiving into bereavement, post-loss financial hardship was associated with suicidal ideation in bereavement. IMPLICATIONS: Economic policies that financially benefit caregivers may represent promising strategies for preventing suicidal thoughts and behaviors.
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Neoplasias , Ideação Suicida , Humanos , Cuidadores/psicologia , Estudos Longitudinais , Estresse FinanceiroRESUMO
OBJECTIVES: Latino patients have been shown to engage in advance care planning (ACP) at much lower rates than non-Latino White patients. Coping strategies, such as the use of emotional support, may differentially relate to engagement in ACP among Latino and non-Latino patients. The present study sought to examine the moderating effect of ethnicity on the relationship between the use of emotional support as a coping strategy and completion of advance directives. METHODS: The present study employed a weighted sample (Nw = 185) of Latino and non-Latino White patient participants in Coping with Cancer III, an National Institutes of Health-sponsored, multisite, longitudinal, observational cohort study of patients with advanced cancer and their informal caregivers and oncology providers designed to evaluate Latino/non-Latino disparities in ACP and end-of-life cancer care. Main and interaction effects of Latino ethnicity and use of emotional support on patient use of advance directives were estimated as odds ratios. RESULTS: Use of emotional support was associated with dramatically lower do-not-resuscitate (DNR) order completion to a greater extent among Latino as compared to non-Latino patients (interaction AOR = 0.33, p = 0.005). Interaction effects were not statistically significant for living will or health-care proxy form completion. SIGNIFICANCE OF RESULTS: Use of emotional support is associated with lower odds of completing DNRs among Latino than among non-Latino patients. Seeking and/or receiving emotional support may deter Latino patients from completing DNR orders. Research is needed to address both emotional needs and practicalities to ensure high quality end-of-life care among Latino patients with cancer.
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Planejamento Antecipado de Cuidados , Emoções , Hispânico ou Latino , Sistemas de Apoio Psicossocial , Planejamento Antecipado de Cuidados/estatística & dados numéricos , Humanos , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Estados UnidosRESUMO
BACKGROUND: Cancer patients often prefer to die at home, a location associated with better quality of death (QoD). Several studies demonstrate disparities in end-of-life care among immigrant populations in the United States. This study aimed to evaluate how immigrant status affects location and quality of death among patients with advanced cancer in the United States. METHODS: Data were derived from Coping with Cancer, a federally funded multi-site prospective study of advanced cancer patients and caregivers. The sample of patients who died during the study period was weighted (Nw = 308) to reduce statistically significant differences between immigrant (Nw = 49) and nonimmigrant (Nw = 259) study participants. Primary outcomes were location of death, death at preferred location, and poor QoD. RESULTS: Analyses adjusted for covariates indicated that patients who were immigrants were more likely to die in a hospital than home (adjusted odds ratio [AOR], 3.33; 95% confidence interval [CI], 1.65-6.71) and less likely to die where they preferred (AOR, 0.42; 95% CI, 0.20-0.90). Furthermore, immigrants were more likely to have poor QoD (AOR, 5.47; 95% CI, 2.70-11.08). CONCLUSIONS: Immigrants, as compared to nonimmigrants, are more likely to die in hospital settings, less likely to die at their preferred location, and more likely to have poor QoD. LAY SUMMARY: Cancer patients typically prefer to die in their own homes, which is associated with improved quality of death. However, disparities in end-of-life care among immigrant populations in the United States remain significant. Our study found that immigrants are less likely to die in their preferred locations and more likely to die in hospital settings, resulting in poorer quality of death.
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Emigrantes e Imigrantes , Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Assistência Terminal , Humanos , Estudos Prospectivos , Estados UnidosRESUMO
PURPOSE: Glioblastoma (GBM) is a devastating neuro-oncologic disease with invariably poor prognosis. Despite this, research shows patients have unrealistic perceptions of their prognosis, which may relate in part to communication patterns between patients, caregivers and oncologists. The purpose of this study was to examine communication processes and goals among patients, caregivers, and oncologists to elucidate drivers of prognostic understanding (PU) in the context of recurrent GBM. METHODS: This was a prospective, multi-center study enrolling adult patients with GBM, caregivers, and oncologists, who independently reported the content of a specific discussion involving the disclosure of GBM recurrence. Communication processes and goals were characterized for each participant, and concordance between all dyads and patient-caregiver-oncologist triads were calculated. RESULTS: Seventeen patient, caregiver, and oncologist triads were analyzed. At the individual level, three (17.6%) patients and 8 (47.1%) caregivers reported having discussed prognosis during the clinical encounter, as compared to ten oncologists (58.8%). Seven patients (41.2%) and 5 caregivers (29.4%), versus thirteen oncologists (76.5%) reported ever discussing prognosis or life expectancy at previous appointments. Generally, patient-caregiver concordance (i.e., both answered the same) regarding communication goals and processes was low. Triads showed limited concordant responses in discussing curability (n = 5), prognosis (n = 4), end-of-life treatment goals (n = 4), and ever discussing prognosis (n = 3). CONCLUSION: Patients, caregivers and oncologists had discordant views regarding communication processes and prognostic goals, even when recalling a single discussion. This study highlights the importance of clear and frequent communication about prognosis, and the need for further research on communication and PU in the neuro-oncology setting.
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Glioblastoma , Neoplasias , Oncologistas , Adaptação Psicológica , Adulto , Cuidadores , Glioblastoma/terapia , Humanos , Neoplasias/terapia , Relações Médico-Paciente , Prognóstico , Estudos ProspectivosRESUMO
OBJECTIVE: Among patients living with advanced, life-limiting illness, reconciling the prospect of disease progression with future goals and expectations is a key psychological task, integral to treatment decision-making and emotional well-being. To date, this psychological process remains poorly understood with no available measurement tools. The present paper develops and validates a measurement model for operationalizing this psychological process. METHODS: In Phase 1, concept elicitation interviews were conducted among Stage IV lung, gastrointestinal, and gynecologic cancer patients, their caregivers, and experts (N = 19), to further develop our conceptual framework centered on assimilation and accommodation coping. In Phase 2, draft self-report items of common assimilation and accommodation coping strategies were evaluated via patient cognitive interviews (N = 11). RESULTS: Phase 1 interviews identified several coping strategies, some of which aimed to reduce the perceived likelihood of disease progression (assimilation), and others aimed to integrate the likelihood into new goals and expectations (accommodation). The coping strategies appeared to manifest in patients' daily lives, and integrally related to their emotional well-being and how they think about treatments. Phase 2 cognitive interviews identified items to remove and modify, resulting in a 31-item measure assessing 10 assimilation and accommodation coping strategies. CONCLUSIONS: The present work derived a content-valid measure of the psychological process by which patients reconcile the prospect of disease progression with their goals and expectations. Further psychometric validation and use of the scale could identify intervention targets for enhancing patient decision-making and well-being.
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Motivação , Neoplasias , Progressão da Doença , Feminino , Objetivos , Humanos , Neoplasias/psicologia , Neoplasias/terapia , Inquéritos e QuestionáriosRESUMO
OBJECTIVE: To determine whether distinctive prolonged-grief-disorder- (PGD) and depressive-symptom states emerge among family caregivers of cancer patients over their first 2 years of bereavement. This may extend cross-sectional evidence that PGD and major depressive disorder (MDD) symptoms can co-occur/occur independently and validate their construct distinctiveness. METHODS: In this secondary-analysis study, PGD symptoms and depressive symptoms were measured over 666 caregivers using 11 grief symptom items of the Prolonged Grief-13 scale and 16 items of the Center for Epidemiologic Studies-Depression scale, respectively. Distinct PGD/depressive-symptom states were identified by latent transition analysis with dichotomous indicators (presence/absence) of PGD or depressive symptoms. RESULTS: Four distinct PGD/depressive-symptom states emerged. The resilient and subthreshold depression-dominant states showed low and moderate probabilities of the presence of majority of depressive symptoms, respectively, with no PGD symptoms having a greater than moderate probability of presence. The depression-dominant state was marked by a high probability of the presence for 9 of 16 depressive symptoms, with moderate probabilities for almost all PGD symptoms. The PGD-depression comorbid state was characterized by a high probability of presence of all PGD symptoms and depressive symptoms, except for moderate probabilities of presence of two depressive symptoms. CONCLUSION: Our longitudinal identification of a predominantly depressive state but absence of a PGD-dominant state provides further evidence that PGD and MDD are related but distinct constructs that can occur independently or concurrently as the PGD-depression comorbid state. When PGD is suspected, bereaved individuals should be assessed for the potential comorbidity of MDD.
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Luto , Transtorno Depressivo Maior , Neoplasias , Cuidadores , Estudos Transversais , Depressão/epidemiologia , Transtorno Depressivo Maior/diagnóstico , Transtorno Depressivo Maior/epidemiologia , Pesar , Humanos , Transtorno do Luto ProlongadoRESUMO
BACKGROUND: Informed treatment decision-making necessitates accurate prognostication, including predictions about quality of life. AIMS: We examined whether oncologists, patients with advanced cancer, and caregivers accurately predict patients' future quality of life and whether these predictions are prospectively associated with end-of-life care and bereavement. MATERIALS & METHODS: We conducted secondary analyses of clinical trial data. Patients with advanced cancer (n = 156), caregivers (n = 156), and oncologists (n = 38) predicted patient quality of life 3 months into the future. Patients subsequently rated their quality of life 3 months later. Medical record data documented chemotherapy and emergency department (ED)/inpatient visits in the 30 days before death (n = 79 decedents). Caregivers self-reported on depression, anxiety, grief, purpose, and regret 7-months post-mortem. In mixed-effects models, patient, caregiver, and oncologist quality-of-life predictions at study entry were used to predict end-of-life care and caregiver outcomes, controlling for patients' quality of life at 3-month follow-up, demographic and clinical characteristics, and nesting within oncologists. RESULTS: Caregivers (P < 0.0001) and oncologists (P = 0.001) predicted lower quality of life than what patients actually experienced. Among decedents, 24.0% received chemotherapy and 54.5% had an ED/inpatient visit. When caregivers' predictions were more negative, patients were less likely to receive chemotherapy (P = 0.028) or have an ED/inpatient visit (P = 0.033), and caregivers reported worse depression (P = 0.002), anxiety (P = 0.019), and grief (P = 0.028) and less purpose in life (P < 0.001) 7-months post-mortem. CONCLUSION: When caregivers have more negative expectations about patients' quality of life, patients receive less intensive end-of-life care, and caregivers report worse bereavement outcomes.
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Luto , Neoplasias , Oncologistas , Assistência Terminal , Cuidadores , Pesar , Humanos , Neoplasias/terapia , Qualidade de VidaRESUMO
BACKGROUND: Bereaved ICU family surrogates are at risk of comorbid prolonged grief disorder (PGD), posttraumatic stress disorder (PTSD), and depression. Knowledge about temporal relationships between PGD, PTSD, and depression is limited by a lack of relevant studies and diverse or inappropriate assessment time frames given the duration criterion for PGD. We aimed to determine the temporal reciprocal relationships between PGD, PTSD, and depressive symptoms among ICU decedents' family surrogates during their first 2 bereavement years with an assessment time frame reflecting the PGD duration criterion. METHODS: This prospective, longitudinal, observational study examined PGD, PTSD, and depressive symptoms among 303 family surrogates of ICU decedents from two academic hospitals using 11 items of the Prolonged Grief Disorder-13, the Impact of Event Scale-Revised, and the depression subscale of the Hospital Anxiety and Depression Scale, respectively, at 6, 13, 18, and 24 months post-loss. Cross-lagged panel modeling was conducted: autoregressive coefficients indicate variable stability, and cross-lagged coefficients indicate the strength of reciprocal relationships among variables between time points. RESULTS: Symptoms (autoregressive coefficients) of PGD (0.570-0.673), PTSD (0.375-0.687), and depression (0.591-0.655) were stable over time. Cross-lagged standardized coefficients showed that depressive symptoms measured at 6 months post-loss predicted subsequent symptoms of PGD (0.146) and PTSD (0.208) at 13 months post-loss. PGD symptoms did not predict depressive symptoms. PTSD symptoms predicted subsequent depressive symptoms in the second bereavement year (0.175-0.278). PGD symptoms consistently predicted subsequent PTSD symptoms in the first 2 bereavement years (0.180-0.263), whereas PTSD symptoms predicted subsequent PGD symptoms in the second bereavement year only (0.190-0.214). PGD and PTSD symptoms are bidirectionally related in the second bereavement year. CONCLUSIONS: PGD, PTSD, and depressive symptoms can persist for 2 bereavement years. Higher PGD symptoms at 6 months post-loss contributed to the exacerbation of PTSD symptoms over time, whereas long-lasting PTSD symptoms were associated with prolonged depression and PGD symptoms beyond the first bereavement year. Identification and alleviation of depression and PGD symptoms as early as 6 months post-loss enables bereaved surrogates to grieve effectively and avoid the evolution of those symptoms into long-lasting PGD, PTSD, and depression.
Assuntos
Luto , Transtornos de Estresse Pós-Traumáticos , Humanos , Transtornos de Estresse Pós-Traumáticos/diagnóstico , Depressão , Estudos Prospectivos , Transtorno do Luto Prolongado , Unidades de Terapia Intensiva , Estudos Observacionais como AssuntoRESUMO
BACKGROUND: Urinary incontinence is prevalent among patients receiving home hospice and presents multiple care management challenges for nurses and family caregivers. AIM: This study sought to understand how urinary incontinence influences the psychosocial care of patients receiving home hospice and the strategies that nurses employ to maximize patient and family comfort. DESIGN: Qualitative descriptive study using semi-structured interviews. SETTING/PARTICIPANTS: Nurses employed at a large not-for-profit hospice agency in New York City. RESULTS: Analyses of 32 interviews revealed three primary themes. First, nurses considered urinary incontinence to be associated with multiple psychosocial issues including embarrassment for patients and caregiver burden. Second, nurses described urinary incontinence as a threat to patient dignity and took steps to preserve their continence function. Third, nurses assisted patients and their families to cope with urinary incontinence through normalization, reframing incontinence as part of the disease process, mobilizing caregiving assistance, and encouraging use of continence supplies such as diapers and liners. CONCLUSION: Urinary incontinence influences the psychosocial care of patients receiving home hospice and nurses employ strategies to maximize patient and family comfort. Additional research is needed to examine the psychosocial benefits of facilitated discussions with patients and family members about incontinence, provision of caregiving support, and distribution of comprehensive incontinence supplies to patients with fewer resources.