The Effect of Prognostic Communication on Patient Outcomes in Palliative Cancer Care: a Systematic Review

Velden, Naomi C.A. van der; Meijers, Maartje C.; Han, Paul K. J.; Laarhoven, Hanneke W. M. van; Smets, Ellen M. A.; Henselmans, Inge

doi:10.1007/s11864-020-00742-y

Cited by 43 publications

(59 citation statements)

References 73 publications

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“…Most of the experiences of patients with ALS and their caregivers in our study are in agreement with studies on prognostic disclosure in other life-limiting diseases, and show that concerns about an adverse impact on psychological wellbeing of patients and caregivers are unwarranted [ 8 , 13 , 14 ]. Indeed, studies show that an unfulfilled desire for a more personalized prognosis can cause frustration and distress for patients and caregivers [ 24 , 33 , 34 ], whereas patients and caregivers in our study reported that discussing personalized prognosis can alleviate uncertainty.…”

Section: Discussionsupporting

confidence: 87%

“…To date, there have been no studies focusing on prognostic disclosure in neurological disease. However, studies in other life-limiting diseases, predominantly terminal cancer, show that prognosis can safely be discussed with patients and their caregivers as long as communication is tailored to their preferences and needs; this may even benefit patient decision-making and planning for the future, and provide a sense of control [ 13 , 14 ].…”

Section: Introductionmentioning

confidence: 99%

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Discussing Personalized Prognosis Empowers Patients with Amyotrophic Lateral Sclerosis to Regain Control over Their Future: A Qualitative Study

et al. 2021

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The ENCALS survival prediction model offers patients with amyotrophic lateral sclerosis (ALS) the opportunity to receive a personalized prognosis of survival at the time of diagnosis. We explored experiences of patients with ALS, caregivers, and physicians with discussing personalized prognosis through interviews with patients and their caregivers, and in a focus group of physicians. Thematic analysis revealed four themes with seven subthemes; these were recognized by the focus group. First, tailored communication: physician’s communication style and information provision mediated emotional impact and increased satisfaction with communication. Second, personal factors: coping style, illness experiences, and information needs affected patient and caregiver coping with the prognosis. Third, emotional impact ranged from happy and reassuring to regret. Fourth, regaining control over the future: participants found it helpful in looking towards the future, and emphasized the importance of quality over quantity of life. Personalized prognosis can be discussed with minimal adverse emotional impact. How it is communicated—i.e., tailored to individual needs—is as important as what is communicated—i.e., a good or poor prognosis. Discussing personalized prognosis may help patients with ALS and their caregivers regain control over the future and facilitate planning of the future (care). For many patients, quality of life matters more than quantity of time remaining.

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Section: Discussionsupporting

confidence: 87%

Section: Introductionmentioning

confidence: 99%

Discussing Personalized Prognosis Empowers Patients with Amyotrophic Lateral Sclerosis to Regain Control over Their Future: A Qualitative Study

et al. 2021

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“… 40 Adult children may protect their parents from adverse consequences associated with disclosing poor prognosis to them 41 by asking physicians to conceal prognostic information from elderly parents, hindering them from gaining accurate PA. Healthcare professionals should not only explore elderly patients’ needs for prognostic information but also lessen family concerns about prognostic disclosure to facilitate accurate PA without damaging older patients’ psychological well‐being or hope. 42 Furthermore, higher educational levels predisposed cancer patients to the heterogeneous‐PA group than in the still‐avoiding‐PA group, consistent with the literature. 43 …”

Section: Discussionsupporting

confidence: 85%

Factors associated with distinct prognostic‐awareness‐transition patterns over cancer patients’ last 6 months of life

et al. 2021

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Background Cancer patients may develop prognostic awareness (PA) heterogeneously, but predictors of PA‐transition patterns have never been studied. We aimed to identify transition patterns of PA and their associated factors during cancer patients’ last 6 months. Methods For this secondary‐analysis study, PA was assessed among 334 cancer patients when they were first diagnosed as terminally ill and monthly till they died. PA was categorized into four states: (a) unknown and not wanting to know; (b) unknown but wanting to know; (c) inaccurate awareness; and (d) accurate awareness. The first and last PA states estimated by hidden Markov modeling were examined to identify their change patterns. Factors associated with distinct PA‐transition patterns were determined by multinomial logistic regressions focused on modifiable time‐varying variables assessed in the wave before the last PA assessment to ensure a clear time sequence for associating with PA‐transition patterns. Results Four PA‐transition patterns were identified: maintaining accurate PA (56.3%), gaining accurate PA (20.4%), heterogeneous PA (7.8%), and still avoiding PA (15.6%). Reported physician‐prognostic disclosure increased the likelihood of belonging to the maintaining‐accurate‐PA group than to other groups. Greater symptom distress predisposed patients to be in the still‐avoiding‐PA than the heterogeneous PA group. Patients with higher functional dependence and more anxiety/depressive symptoms were more and less likely to be in the heterogeneous PA group and in the still‐avoiding‐PA group, respectively, than in the maintaining‐ and gaining‐accurate PA groups. Conclusions Cancer patients heterogeneously experienced PA‐transition patterns over their last 6 months. Physicians’ prognostic disclosure, and patients’ symptom distress, functional dependence, and anxiety/depressive symptoms, all modifiable by high‐quality end‐of‐life care, were associated with distinct PA‐transition patterns.

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“…21 Providing patients with adequate care 22 during the disease process and offering appropriate coping strategies when giving 'bad news' may be protective factors. 23 These findings can guide interventions for patients presenting with WTD and assist in its identification and prevention. The quality of patient communications regarding prognosis should be considered along with symptom burden and demoralisation.…”

Section: Sociocultural Factorsmentioning

confidence: 96%

“…The quality of patient communications regarding prognosis should be considered along with symptom burden and demoralisation. 23 Clarifying triggering factors for HDI could assist in the identification of at-risk patients, as well as in the development of appropriate interventions and goals of care. Early follow-up by palliative care teams may assist in the development of patient coping strategies.…”

Section: Sociocultural Factorsmentioning

confidence: 99%

Wish to die and hasten death in palliative care: a cross-sectional study factor analysis

Belar

Martínez

Centeno

et al. 2021

BMJ Support Palliat Care

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ObjectivesThe wish to die (WTD) is a complex experience sometimes accompanied by intention to hasten death. The aim of this study is to identify the predictive factors for WTD and hastening death intention (HDI) in Spanish patients with advanced illness.MethodsThis is a subanalysis of a larger cross-sectional study conducted on patients experiencing advanced illness (N=201). Sociodemographic data and data related to symptom burden (Edmonton Symptom Assessment System-Revised), depressive and anxious symptoms (Hospital Anxiety and Depression Scale), demoralisation (Spanish version of the Demoralisation Scale), perceived loss of dignity (Patient Dignity Inventory) and WTD (Assessing Frequency and Extent of Desire to Die) were collected. The analysis used univariate and multivariate logistic regression.ResultsThe prevalence of WTD in the sample was 18%, with 8 out of 36 patients reporting HDI. The independent factors predictive of WTD were (1) knowledge of approximate prognosis (OR=4.78; 95% CI 1.20 to 10.8; p=0.001); (2) symptom burden (OR=1.05; 95% CI 1.00 to 1.09; p=0.038); and (3) the Demoralisation Scale subsection ‘lack of meaning and purpose in life’ (OR=1.61; 95% CI 1.30 to 1.99; p=0.000). An independent predictive factor for HDI was the Demoralisation Scale subsection ‘patients’ distress and coping abilities’ (OR=1.47; 95% CI 1.04 to 2.08; p=0.028), while having religious beliefs was a protective factor (OR=0.13; 95% CI0.17 to 0.97; p=0.047).ConclusionsDemoralisation was found to be the only common triggering factor for WTD and HDI, although experiences share certain features. Identification of the predictive factors for WTD and HDI may contribute to their prevention and management.

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The Effect of Prognostic Communication on Patient Outcomes in Palliative Cancer Care: a Systematic Review

Cited by 43 publications

References 73 publications

Discussing Personalized Prognosis Empowers Patients with Amyotrophic Lateral Sclerosis to Regain Control over Their Future: A Qualitative Study

Discussing Personalized Prognosis Empowers Patients with Amyotrophic Lateral Sclerosis to Regain Control over Their Future: A Qualitative Study

Factors associated with distinct prognostic‐awareness‐transition patterns over cancer patients’ last 6 months of life

Wish to die and hasten death in palliative care: a cross-sectional study factor analysis

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