Objective
Unprecedently investigate associations of prognostic‐awareness‐transition patterns with (changes in) depressive symptoms, anxiety symptoms, and quality of life (QOL) during cancer patients' ...last 6 months.
Methods
In this secondary analysis study, 334 cancer patients in their last 6 months transitioned between four prognostic‐awareness states (unknown and not wanting to know, unknown but wanting to know, inaccurate awareness, and accurate awareness), thus constituting three transition patterns: maintaining‐accurate‐, gaining‐accurate‐, and maintaining‐inaccurate/unknown prognostic awareness. A multivariate hierarchical linear model evaluated associations of the transition patterns with depressive symptoms, anxiety symptoms, and QOL determined at final assessment and by mean difference between the first and last assessment.
Results
At the last assessment before death, the gaining‐accurate‐prognostic‐awareness group reported higher levels of depressive symptoms (estimate 95% confidence interval = 1.59 0.35–2.84) and the maintaining‐ and gaining‐accurate‐prognostic‐awareness groups suffered more anxiety symptoms (1.50 0.44–2.56; 1.42 0.13–2.71, respectively) and poorer QOL (−7.07 −12.61 to 1.54; −11.06 −17.76 to −4.35, respectively) than the maintaining‐inaccurate/unknown‐prognostic‐awareness group. Between the first and last assessment, the maintaining‐ and gaining‐accurate‐prognostic‐awareness groups' depressive symptoms (1.59 0.33–2.85; 3.30 1.78–4.82, respectively) and QOL (−5.04 −9.89 to –0.19; −8.86 −14.74 to −2.98, respectively) worsened more than the maintaining‐inaccurate/unknown‐prognostic‐awareness group, and the gaining‐accurate‐prognostic‐awareness group's depressive symptoms increased more than the maintaining‐accurate‐prognostic‐awareness group (1.71 0.42–3.00).
Conclusions
Unexpectedly, patients who maintained/gained accurate prognostic awareness suffered more depression, anxiety, and poorer QOL at end of life. Promoting accurate prognostic awareness earlier in the terminal‐cancer trajectory should be supplemented with adequate psychological care to alleviate patients' emotional distress and enhance QOL.
Trial registration: ClinicalTrials.gov:NCT01912846.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, UILJ, UKNU, UL, UM, UPUK
Objective
Death preparedness involves cognitive prognostic awareness and emotional acceptance of a relative's death. Effects of retrospectively assessed cognitive prognostic awareness and emotional ...preparedness for patient death have been individually investigated among bereaved family caregivers. We aimed to prospectively examine associations of caregivers' death‐preparedness states, determined by conjoint cognitive prognostic awareness and emotional preparedness for death, with bereavement outcomes.
Methods
Associations of caregivers' death‐preparedness states (no‐death‐preparedness, cognitive‐death‐preparedness‐only, emotional‐death‐preparedness‐only, and sufficient‐death‐preparedness states) at last preloss assessment with bereavement outcomes over the first two bereavement years were evaluated among 332 caregivers of advanced cancer patients using hierarchical linear models with the logit‐transformed posterior probability for each death‐preparedness state.
Results
Caregivers with a higher logit‐transformed posterior probability for sufficient death‐preparedness state reported less prolonged‐grief symptoms, lower likelihoods of severe depressive symptoms and heightened decisional regret, and better mental health‐related quality of life (HRQOL). Caregivers with a higher logit‐transformed posterior probability for no‐death‐preparedness state reported less prolonged‐grief symptoms, a lower likelihood of severe depressive symptoms, and better mental HRQOL. A higher logit‐transformed posterior probability for cognitive‐death‐preparedness‐only state was associated with bereaved caregivers' higher likelihood of heightened decisional regret, whereas that for emotional‐death‐preparedness‐only state was not associated with caregivers' bereavement outcomes.
Conclusions
Caregivers' bereavement outcomes were associated with their preloss death‐preparedness states, except for physical health‐related QOL. Interventions focused on not only cultivating caregivers' accurate prognostic awareness but also adequately preparing them emotionally for their relative's forthcoming death are actionable opportunities for high‐quality end‐of‐life care and are urgently warranted to facilitate caregivers' bereavement adjustment.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, UILJ, UKNU, UL, UM, UPUK
Background/Objective
Facilitating death preparedness is important for improving cancer patients' quality of death and dying. We aimed to identify factors associated with the four death‐preparedness ...states (no‐preparedness, cognitive‐only, emotional‐only, and sufficient‐preparedness) focusing on modifiable factors.
Methods
In this cohort study, we identified factors associated with 314 Taiwanese cancer patients' death‐preparedness states from time‐invariant socio‐demographics and lagged time‐varying modifiable variables, including disease burden, physician prognostic disclosure, patient‐family communication on end‐of‐life (EOL) issues, and perceived social support using hierarchical generalized linear modeling.
Results
Patients who were male, older, without financial hardship to make ends meet, and suffered lower symptom distress were more likely to be in the emotional‐only and sufficient‐preparedness states than the no‐death‐preparedness‐state. Younger age (adjusted odds ratio 95% confidence interval = 0.95 0.91, 0.99 per year increase in age) and greater functional dependency (1.05 1.00, 1.11) were associated with being in the cognitive‐only state. Physician prognostic disclosure increased the likelihood of being in the cognitive‐only (51.51 14.01, 189.36) and sufficient‐preparedness (47.42 10.93, 205.79) states, whereas higher patient‐family communication on EOL issues reduced likelihood for the emotional‐only state (0.38 0.21, 0.69). Higher perceived social support reduced the likelihood of cognitive‐only (0.94 0.91, 0.98) but increased the chance of emotional‐only (1.09 1.05, 1.14) state membership.
Conclusions
Death‐preparedness states are associated with patients' socio‐demographics, disease burden, physician prognostic disclosure, patient‐family communication on EOL issues, and perceived social support. Providing accurate prognostic disclosure, adequately managing symptom distress, supporting those with higher functional dependence, promoting empathetic patient‐family communication on EOL issues, and enhancing perceived social support may facilitate death preparedness.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, UILJ, UKNU, UL, UM, UPUK
Background:
Factors facilitating/hindering concordance between preferred and received life-sustaining treatments may be distorted if preferences and predictors are measured long before death.
Aim:
To ...examine factors facilitating/hindering concordance between cancer patients’ preferred and received life-sustaining-treatment states in their last 6 months.
Design:
Longitudinal, observational design.
Setting/participants:
States of preferred and received life-sustaining treatments (cardio-pulmonary resuscitation, intensive care unit care, cardiac massage, intubation with mechanical ventilation, intravenous nutritional support, and nasogastric tube feeding) were examined in 218 Taiwanese cancer patients by a latent transition model with hidden Markov modeling. Multivariate logistic regression modeling was used to examine factors facilitating/hindering concordance between preferred and received life-sustaining-treatment states.
Results:
Concordance between preferred and received life-sustaining-treatment states was poor (40.8%, kappa value (95% confidence interval): 0.05 –0.03, 0.14). Patients who accurately understood their prognosis and preferred comfort care were significantly more likely to receive preferred life-sustaining treatments before death than those who did not know their prognosis but wanted to know, those who were uniformly uncertain about what life-sustaining treatments they preferred to receive, and those who preferred nutritional support but declined other life-sustaining treatments. Patient age, physician–patient end-of-life-care discussions, symptom distress, and functional dependence were not associated with concordance between preferred and received life-sustaining-treatment states.
Conclusion:
Prognostic awareness and preferred states of life-sustaining treatments were significantly associated with concordance between preferred and received life-sustaining-treatment states. Personalized interventions should be developed to cultivate terminally ill cancer patients’ accurate prognostic awareness, allowing them to formulate realistic life-sustaining-treatment preferences and facilitating their receiving value-concordant end-of-life care.
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NUK, OILJ, SAZU, UKNU, UL, UM, UPUK
Background/Objective
Cognitive prognostic awareness (PA) and emotional preparedness for death are distinct but related concepts that have rarely been investigated conjointly and without considering ...the dynamic nature of death preparedness. To fill this gap, this secondary‐analysis study identified distinct patterns/states of death preparedness and their changes within cancer patients' last 6 months.
Methods
Distinct death‐preparedness states, determined by conjoint cognitive PA and emotional preparedness for death, as well as their changes between consecutive times were identified and estimated, respectively, by latent transition modeling with hidden Markov modeling among 383 cancer patients within their last 6 months.
Results
Four death‐preparedness states (prevalence) were initially identified: no death preparedness (17.1%), cognitive death preparedness only (23.3%), emotional death preparedness only (39.9%), and sufficient death preparedness (19.7%). Patients in the no‐death‐preparedness state had neither accurate PA nor adequate emotional preparedness for death. The sufficient‐death‐preparedness state was characterized by both accurate PA and adequate emotional preparedness for death. In the cognitive‐ and emotional‐death‐preparedness‐only states, patients were accurately aware of their prognosis and adequately emotionally prepared for their forthcoming death only, respectively. As death approached, state prevalence fluctuated within a narrow range for the no‐ and sufficient‐death‐preparedness states, whereas prevalence of cognitive‐ and emotional‐death‐preparedness‐only states increased and decreased substantially, respectively.
Conclusion
Cancer patients heterogeneously experienced conjoint cognitive PA and emotional preparedness for death, and prevalence of death‐preparedness states changed substantially as death approached. Effective interventions are warranted to cultivate cognitive PA and facilitate emotional death‐preparedness to improve end‐of‐life‐care quality, thereby helping patients achieve a good death.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, UILJ, UKNU, UL, UM, UPUK
Objective
Preparing family surrogates for patient death and end‐of‐life (EOL) decision making may reduce surrogate decisional conflict and regret. Preparedness for patient death involves cognitive ...and emotional preparedness. We assessed the associations of surrogates' death‐preparedness states (that integrate both cognitive and emotional preparedness for patient death) with surrogates' decisional conflict and regret.
Methods
Associations of 173 surrogates' death‐preparedness states (no, cognitive‐only, emotional‐only, and sufficient preparedness states) with decisional conflict (measured by the Decision Conflict Scale) and heightened decisional regret (Decision Regret Scale scores >25) were evaluated using hierarchical linear modeling and hierarchical generalized linear modeling, respectively, during a longitudinal observational study at a medical center over cancer patients' last 6 months.
Results
Surrogates reported high decisional conflict (mean standard deviation = 41.48 6.05), and 52.7% of assessments exceeded the threshold for heightened decisional regret. Surrogates in the cognitive‐only preparedness state reported a significantly higher level of decisional conflict (β = 3.010 95% CI = 1.124, 4.896) than those in the sufficient preparedness state. Surrogates in the no (adjusted odds ratio AOR 95% CI = 0.293 0.113, 0.733) and emotional‐only (AOR 95% CI = 0.359 0.149, 0.866) preparedness states were less likely to suffer heightened decisional regret than those in the sufficient preparedness state.
Conclusions
Surrogates' decisional conflict and heightened decisional regret are associated with their death‐preparedness states. Improving emotional preparedness for the patient's death among surrogates in the cognitive‐only preparedness state and meeting the specific needs of those in the no, emotional‐only, and sufficient preparedness states are actionable high‐quality EOL‐care interventions that may lessen decisional conflict and decisional regret.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, UILJ, UKNU, UL, UM, UPUK
Objective
Quality of life (QOL) and psychological distress at end of life (EOL) heavily depend on symptom distress and functional impairment, which may not deteriorate synchronously at EOL.
Methods
...Using multivariate hierarchical linear modeling, we simultaneously evaluated the differential association of 5 previously identified, worsening conjoint symptom‐functional states with QOL, anxiety symptoms, and depressive symptoms over 317 terminally ill cancer patients' last year of life. Quality of life, anxiety symptoms, and depressive symptoms were measured by the McGill Quality of Life Questionnaire and the Hospital Anxiety and Depression Scale, respectively.
Results
Quality of life, anxiety symptoms, and depressive symptoms deteriorated significantly more for patients in the 4 worst symptom‐functional states (states 2‐5) than in the best state (state 1). Quality of life did not differ significantly among patients in states 2 to 5. However, patients in state 4 had significantly lower anxiety‐symptom levels than patients in states 2, 3, and 5, whose anxiety‐symptom levels did not differ significantly. In contrast, depressive‐symptom levels differed significantly between participants in any 2 of the worst symptom‐functional states, except between participants in states 3 and 5 as well as between those in states 2 and 4.
Conclusion
The 5 distinct symptom‐functional states contributed to worsening QOL, anxiety symptoms, and depressive symptoms, but each was negatively and uniquely associated with psychological well‐being in terminally ill cancer patients' last year of life.
Clinical Implications
The psychological well‐being and QOL of high‐risk patients in states 3 and 5 may be improved at EOL by targeting them with appropriate symptom management interventions and facilitating their functioning.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, UILJ, UKNU, UL, UM, UPUK
Background
Prolonged grief disorder (PGD) and depression are recognized as distinct emotional‐distress disorders for bereaved family caregivers. However, this distinction has been mostly validated in ...cross‐sectional studies, neglecting the dynamic characteristics of bereaved caregivers' emotional distress.
Objective
To validate the distinction between symptoms of PGD and depression across the first bereavement year for family caregivers of terminally ill cancer patients.
Methods
In this descriptive, longitudinal study of 394 bereaved Taiwanese family caregivers, we measured symptoms of PGD and depression by the Prolonged Grief‐13 and Center for Epidemiologic Studies Depression (CES‐D) scales at 6 and 13 months postloss, respectively. Agreement between cases of PGD and severe depressive symptoms (CES‐D score ≥ 16) was analyzed by Cohen's kappa. Structural distinctiveness was longitudinally examined using confirmatory bifactor modeling.
Results
Agreement was poor between cases of PGD and severe depressive symptoms at 6 and 13 months postloss (kappa = .16 confidence interval = .09, .22 and .12 confidence interval = .03, .19, respectively). Symptoms of PGD and depression shared a general factor, but were distinct as shown by their significant specific factor loadings at 6 and 13 months postloss. Confirmatory bifactor models showed structural invariance (confirmatory fit index difference < .01 and χ2 difference P > .05) between 6 and 13 months postloss.
Conclusion
Symptoms of PGD and depression were confirmed as distinct across the first year of bereavement. Health care professionals should recognize early in bereavement that symptoms of PGD and depression are distinct, identify high‐risk groups, and provide care tailored to caregivers' unique needs to facilitate recovery from bereavement‐related emotional‐distress disorders.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, UILJ, UKNU, UL, UM, UPUK
Background
Family caregivers carry heavy end‐of‐life (EOL) caregiving burdens, with their physical and psychological well‐being threatened from caregiving to bereavement. However, caregiving burden ...has rarely been examined as a risk factor for bereavement adjustment to disentangle the wear‐and‐tear vs relief models of bereavement.
Objective/Methods
Preloss and postloss variables associated with severe depressive symptoms and quality of life (QOL) for 201 terminally ill cancer patients' caregivers over their first 2 years of bereavement were simultaneously evaluated using multivariate hierarchical linear modeling. Severe depressive symptoms (Center for Epidemiological Studies Depression Scale score > 16) and QOL (physical and mental component summaries of the Medical Outcomes Study Short‐Form Health Survey) were measured 1, 3, 6, 13, 18, and 24 months postloss.
Results
Caregivers' likelihood of severe depressive symptoms and mental health‐related QOL improved significantly from the second year and throughout the first 2 years of bereavement, respectively, whereas physical health‐related QOL remained steady over time. Higher subjective caregiving burden and postloss concurrent greater social support and better QOL were associated with bereaved caregivers' lower likelihood of severe depressive symptoms. Bereaved caregivers' mental health‐related QOL was facilitated and impeded by concurrent greater perceived social support and severe depressive symptoms, respectively.
Conclusion
Severe depressive symptoms and mental health‐related QOL improved substantially, whereas physical health‐related QOL remained steady over the first 2 years of bereavement for cancer patients' caregivers. Timely referrals to adequate bereavement services should be promoted for at‐risk bereaved caregivers, thus addressing their support needs and facilitating their bereavement adjustment.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, UILJ, UKNU, UL, UM, UPUK
Objective
Grief reactions in bereaved caregivers of cancer patients have been identified individually as distinct prolonged grief disorder (PGD)—and major depressive disorder (MDD)—symptom ...trajectories, but no research has examined whether the patterns of change (trajectories) for PGD and MDD symptoms synchronize during bereavement. We conducted a secondary analysis study to investigate the construct distinctiveness of PGD and MDD by simultaneously identifying and examining similarities and differences between bereaved caregivers' PGD‐ and depressive‐symptom trajectories from immediately post‐loss through 2 years later.
Methods
PGD and depressive symptoms were measured for 849 cancer patients' caregivers over their first 2 years of bereavement using 11 grief‐symptom items of the prolonged grief‐13 scale (PG‐11) and the center for epidemiologic studies‐depression (CES‐D) scale, respectively. PGD‐ and depressive‐symptom trajectories were identified using latent class growth analysis with continuous latent‐class indicators (total PG‐11 and CES‐D scores). Concordance of caregiver participants' membership in PGD‐ and depressive‐symptom trajectories was examined by a percentage and a kappa value.
Results
Five distinct symptom trajectories were identified for both PGD and MDD, with four shared trajectories (endurance, transient‐reaction, resilience, and prolonged‐symptomatic) having different prevalence rankings. Nonetheless, unique trajectories were identified for PGD (potential recurrence) and depressive symptoms (chronically distressed), respectively. Concordance between membership in PGD‐ and depressive‐symptom trajectories was moderate (61.3%, kappa 95% CI: 0.49 0.44, 0.53).
Conclusion
PGD and MDD are related but distinct constructs indicated by the unique trajectories identified for each, different prevalence rankings for PGD‐ and depressive‐symptom trajectories, and moderate concordance between membership in PGD‐ and depressive‐symptom trajectories, respectively.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, UILJ, UKNU, UL, UM, UPUK
