Prognostic Awareness Research Articles

Prognostic Awareness and Knowledge of Acute Exacerbation in Patients Dying with Interstitial Lung Disease: A Nationwide Survey.

Accurate prognostic awareness (PA) and knowledge of the disease are critical for decision-making regarding treatment options, advance care planning, and end-of-life care. However, they have not been investigated in patients with interstitial lung disease (ILD). To determine the prevalence of patients with ILD who have accurate PA and/or knowledge of acute exacerbation. In addition, to determine whether accurate PA is associated with end-of-life medical interventions and quality of dying and death. Through a nationwide bereavement survey, we examined the prevalence of accurate PA and knowledge of acute exacerbation (AE) in patients with ILD who died in acute general hospitals between January 2018 and February 2020. Patients' PA and knowledge were assessed from the perspective of the bereaved. We also quantified the quality of dying and death from the perspective of the bereaved using three scales, the Good Death Inventory, the Quality of Dying and Death (QODD) questionnaire, and the single-item QODD overall score, and obtained information on end-of-life interventions from the electronic medical record. We examined the associations of accurate PA with end-of-life interventions and quality of dying and death. A total of 296 patients whose caregivers completed questionnaires were analyzed. One hundred sixty-three patients (55.1%, 95% confidence interval [CI] = 49.2-60.8) who died of ILD had accurate PA and 138 (46.9%, 95% CI = 35.9-47.4) recognized that their disease could have AE. Multivariate regression analysis showed that accurate PA was associated with significantly fewer intensive care unit (ICU) deaths (odds ratio = 0.28, 95% CI = 0.10-0.82, P = 0.02). Patients with accurate PA had better quality of dying and death on all the three scales. Approximately half of the patients who died of ILD did not recognize that their disease could lead to death or AE. The lower number of ICU deaths and better quality of dying and death in patients with accurate PA suggest the potential benefits of obtaining accurate PA in patients with ILD.

Perceptions of Palliative Care Among Patients With Kidney Allograft Dysfunction: A Qualitative Study

Rationale & ObjectiveNearly half of kidney transplant recipients develop allograft failure within 10 years of transplantation and experience high mortality, significant symptom burden, and complex communication challenges. These patients may benefit from palliative care, but palliative care is infrequently provided in this population. This study explores palliative care perceptions and needs among patients with poorly functioning and declining kidney allografts. Study DesignQualitative study using semi-structured interviews. Setting & ParticipantsAdult kidney transplant recipients with a glomerular filtration rate <20 ml/min/1.73m2 followed at a single transplant center were interviewed from April to November 2022. Analytical ApproachAn interdisciplinary team, including nephrology, palliative care, and surgery, conducted a thematic analysis. ResultsTwelve participants (3 women, 9 men; 9 White, 2 Black, and 1 Hispanic patient) were interviewed. The median age of participants was 59 (IQR 48-73). At six months post-interview, seven participants had resumed dialysis, one participant had been retransplanted, and one participant was deceased. Most participants had not heard of palliative care and those who had equated it with end-of-life care. Participants reported that emotional distress, particularly pervasive concern about the worsening of their kidney disease, was their most significant priority related to unmet palliative care needs. They also desired more discussion with their care team about future quality-of-life and lifespan. Participants described high trust in their transplant teams, suggesting that palliative care integration with these teams would be well-received. LimitationsLimitations include recruitment from a single institution, lack of subject familiarity with palliative care, and limited racial and ethnic diversity among participants. ConclusionsPatients with declining kidney allografts have heterogeneous, unmet palliative care needs, including emotional symptoms and a desire for better prognostic awareness. Our results suggest that patients are largely unaware of palliative care and may benefit from practice models in which transplant teams integrate palliative care education and timely palliative care engagement.

Prognostic Awareness among Patients with ESKD and Care Partners: Preliminary Themes from Semistructured Interviews

Prognostic Awareness among Patients with ESKD and Care Partners: Preliminary Themes from Semistructured Interviews

Impact of a mortality prediction tool on end-of-life (EOL) quality measures.

404 Background: Determining treatment options for patients with cancer can be difficult for providers, especially when it comes to deciding the appropriate time to stop therapy. Many factors come into play when making important treatment and quality of life decisions including cancer responsiveness to treatment, patient preferences, labs, and diagnostic studies. Providers use their experience, instinct, and patient input in making these decisions, and can still have a difficult time knowing the best option for the patient. To support providers in identifying patients at high risk for poor outcomes, we developed a 90-day mortality risk machine-learning model (MRM) for patients with metastatic cancer. The tool was designed to facilitate earlier advance care planning (ACP) discussions and prognostic awareness leading to alignment of treatment with patient goals and values. The US Oncology Network (The Network) implemented the MRM beginning in early 2021 through late 2022. We assessed the impact of the MRM using performance on 5 EOL Quality Measures included in Medicare’s Merit-based Incentive Payment System (MIPS) Program. Methods: MRM predictions were made every two weeks and provided to practices through a secure web-based dashboard. Practices customized their use of the MRM based on their unique workflow. MRM utilization was collected July – December 2023 and determined how frequently practices accessed the dashboard. Practices were separated into two groups based on MRM utilization: High Utilizers (HU) used the tool more than once a week and Low Utilizers (LU) did not use the tool or used it less than or equal to once a week. EOL MIPS measure performance was collected and evaluated from the 2023 calendar year. For each of the EOL MIPS measures, we compared the average score between the two practice groups. A 2-sample unequal variance t-test with 1-tailed distribution was used to determine if there was a significant difference between the two practice groups for each EOL MIPS measure. Results: A total of 25 practices had available EOL MIPS scores. Five practices were classified as a HU group and 20 were in the LU group. EOL MIPS measure scores were higher among HU. All results trended towards improvement with a statistically significant difference observed for PIMSH 1 and MIPS 457 for HU compared to LU. The table shows the average MIPS scores across the two practice groups. Conclusions: Practices with the highest reported utilization of the MRM also reported improved MIPS EOL quality scores for the 2023 calendar year. While each practice implemented MRM independently, those using the tool more than once per week had improved performance in their MIPS EOL quality scores. EOL MIPS Measure HU LU Delta P MIPS 047 ACP 80.7 59.8 20.9 0.066 PIMSH 1 ACP Stage 4 disease 67.7 40.2 27.5 0.002 MIPS 453 Chemo Last 14 days (inv) 10.7 11.7 -1.0 0.279 MIPS 457 Hospice &lt;3 days (inv) 11.7 14.8 -3.1 0.038 PIMSH 9 Supportive RX last 14 days (inv) 5.3 6.6 -1.3 0.119

Proactive approaches in congestive heart failure: the significance of early goals of care discussion and palliative care.

Congestive Heart Failure (CHF) poses significant challenges to the healthcare system due to its high rates of morbidity and mortality as well as frequent readmissions. All of these factors contribute to increased healthcare delivery costs. Besides the burden on the healthcare system, CHF has far deeper effects on the patient in terms of psychological burden along with debilitating symptoms of dyspnea, all of which reduce quality of life. Prognostic awareness among patients about their disease along with initiating early goals of care discussion by those involved in the care (physicians, nurses, social worker and patient themselves) can help mitigate these challenges. Adopting a proactive approach to address patient preferences, values and end-of-life goals improves patient-centred care, enhances quality of life and reduces the strain on healthcare resources. In this narrative review, studies have been identified using PubMed search to shed knowledge on what is preventing the initiation of goals of care discussions. Some barriers include lack of knowledge about prognosis in both patients and caregivers, inexperience or discomfort in having those conversations and delaying it until CHF becomes too advanced.

Telemedicine-based serious illness conversations, healthcare utilization, and end of life care among patients with advanced lung cancer.

Little is known about serious illness conversations (SIC) conducted during telemedicine visits and their impact on end-of-life (EOL) outcomes for patients with advanced cancer. We conducted a retrospective analysis telemedicine visits for patients with metastatic lung cancer conducted during the first surge of the COVID-19 pandemic (October 3, 2020-October 6, 2020). We used natural language processing (NLP) to characterize documentation of SIC domains (ie, goals of care [GOC], limitation of life-sustaining treatment [LLST], prognostic awareness [PA], palliative care [PC], and hospice). We used unadjusted logistic regression to evaluate factors associated with SIC documentation and the relationship between SIC documentation and EOL outcomes. The study included 634 telemedicine visits across 360 patients. Documentation of at least one SIC domain was present in 188 (29.7%) visits with GOC and PA being the most discussed domains. Family presence (odds ratio [OR], 1.66; P = .004), progressive or newly diagnosed disease (OR, 5.42; P < .000), age ≥ 70 (OR, 1.80; P = .009), and male sex (OR, 2.23; P < .000) were associated with a greater likelihood of discussing ≥ 1 SIC domain. Of the 61 patients who died within 12 months of the study period, having ≥ 1 SIC domain discussed was associated with a lower likelihood of hospitalization in the last 30 days of life (OR, 0.27; P = .020). In this study of telehealth visits, we identified important factors associated with an increased likelihood of having documentation of an SIC and demonstrated that SIC documentation correlated with lower likelihood of hospitalization at EOL.

Prognostic Understanding, Goals of Care, and Quality of Life in Hospitalized Patients with Leukemia or Multiple Myeloma.

Background: Prior studies reveal a lack of illness understanding and prognostic awareness among patients with hematological malignancies. We evaluated prognostic awareness and illness understanding among patients with acute leukemia and multiple myeloma (MM) and measured patient-hematologist discordance. Methods: We prospectively enrolled patients with acute leukemia and MM at Mount Sinai Hospital or Yale New Haven Hospital between August 2015 and February 2020. Patients were administered a survey assessing prognostic awareness, goals of care (GOC), and quality of life. Hematologists completed a similar survey for each patient. We assessed discordance across the cohort of patients and hematologists using the likelihood-ratio chi-square test and within patient-hematologist pairs using the kappa (κ) statistic. Results: We enrolled 185 patients (137 with leukemia and 48 with MM) and 29 hematologists. Among patients, 137 (74%) self-identified as White, 27 (15%) as Black, and 21 (11%) as Hispanic. Across the entire cohort, patients were significantly more optimistic about treatment goals compared with hematologists (p = 0.027). Within patient-hematologist pairs, hematologists were significantly more optimistic than patients with respect to line of treatment (κ = 0.03). For both leukemia and MM cohorts, patients were significantly more likely to respond "don't know" or deferring to a faith-based response with 88 (64%) and 34 (71%), respectively, compared with only 28 (20%) and 11 (23%) of hematologists, respectively. Conclusions: We observed significant discordance regarding prognosis and GOC among patients with hematological malignancies and their hematologists. These data support future interventions to improve prognostic understanding among this patient population to facilitate informed treatment choices.

Using Mobility Tools within Multidimensional Assessments to Increase Prognostic Awareness and Assist in Shared Decision-Making to Enhance Goal Concordant Care

ObjectivesThe purpose of this practice example from one clinical center is to illustrate the use of interdisciplinary mobility, nutrition, and quality-of-life tools to guide prognostication, which can facilitate discussion on further treatment and goals of care. MethodsPeer-reviewed scientific publications, expert opinions, and a case study are used to illustrate the advantages of using interdisciplinary assessment tools to assist in prognostication, culminating in shared decision-making. ResultsThis overview includes tools identified for use by interdisciplinary teams to identify high-risk patients appropriate for timely discussions regarding goals of care to maximize the probability that people receive care aligned with their goals and values that are informed by prognostic concordance. ConclusionsTools assessing mobility, functional status, nutrition, and quality of life can assist the interdisciplinary team in providing whole-person care and in forecasting mortality, thus giving the team valid and reliable information to present to patients and families in the shared decision-making process. Further research is needed to synthesize findings from these tools and share information amongst team members in a cohesive and reliable manner. Implications for Nursing PracticeNurses spend more time at the bedside than any other discipline. Improved knowledge of tools to forecast patients at elevated risk for mortality will empower collaboration with other disciplines to improve prognostic concordance and enhance shared decision-making culminating in optimal patient-centered care.

Adapting the serious illness conversation guide for unhoused older adults: a rapid qualitative study

BackgroundOlder adults experiencing homelessness (OAEH) age quickly and die earlier than their housed counterparts. Illness-related decisions are best guided by patients’ values, but healthcare and homelessness service providers need support in facilitating these discussions. The Serious Illness Conversation Guide (SICG) is a communication tool to guide discussions but has not yet been adapted for OAEH.MethodsWe aimed to adapt the SICG for use with OAEH by nurses, social workers, and other homelessness service providers. We conducted semi-structured interviews with homelessness service providers and cognitive interviews with OAEH using the SICG. Service providers included nurses, social workers, or others working in homeless settings. OAEH were at least 50 years old and diagnosed with a serious illness. Interviews were conducted and audio recorded in shelters, transitional housing, a hospital, public spaces, and over Zoom. The research team reviewed transcripts, identifying common themes across transcripts and applying analytic notetaking. We summarized transcripts from each participant group, applying rapid qualitative analysis. For OAEH, data that referenced proposed adaptations or feedback about the SICG tool were grouped into two domains: “SICG interpretation” and “SICG feedback”. For providers, we used domains from the Toolkit of Adaptation Approaches: “collaborative working”, “team”, “endorsement”, “materials”, “messages”, and “delivery”. Summaries were grouped into matrices to help visualize themes to inform adaptations. The adapted guide was then reviewed by expert palliative care clinicians for further refinement.ResultsThe final sample included 11 OAEH (45% Black, 61 ± 7 years old) and 10 providers (80% White, 8.9 ± years practice). Adaptation themes included changing words and phrases to (1) increase transparency about the purpose of the conversation, (2) promote OAEH autonomy and empowerment, (3) align with nurses’ and social workers’ scope of practice regarding facilitating diagnostic and prognostic awareness, and (4) be sensitive to the realities of fragmented healthcare. Responses also revealed training and implementation considerations.ConclusionsThe adapted SICG is a promising clinical tool to aid in the delivery of serious illness conversations with OAEH. Future research should use this updated guide for implementation planning. Additional adaptations may be dependent on specific settings where the SICG will be delivered.

Relationship between cognitive and emotional domains of prognostic awareness with quality of life and psychological distress in patients with advanced cancer.

11106 Background: Prognostic awareness, a measure of patients’ cognitive and emotional perception of their illness and prognosis, allows individuals to align their medical decision-making with their goals and values. Prior studies have shown mixed findings regarding the relationship between prognostic awareness with better quality of life (QOL) and less psychological distress in patients with advanced cancer. However, studies have not investigated whether it is the cognitive or the emotional aspects of patients’ awareness of their prognosis that are associated with QOL and psychological distress in patients with advanced cancer. Methods: We conducted a cross-sectional study of patients with metastatic solid malignancies not being treated for curative intent at a single academic center from 11/2019-6/2022. We used the Prognostic Awareness Questionnaire (PAIS) to measure the cognitive (i.e., the capacity to understand one’s prognosis characterized by the accurate perception that a cancer is curable or not) and emotional coping with prognosis (i.e., the capacity to emotionally process prognostic uncertainty and terminal prognosis). We used the Functional Assessment of Cancer Therapy-General (FACT-G), Hospital Anxiety and Depression scale (HADS), and the Peace, Equanimity and Acceptance in the Cancer Experience (PEACE) scale to measure, QOL, psychological distress, and acceptance of illness, respectively. We used multivariate regression models controlling for age, gender, and cancer type to assess the relationship between the cognitive and emotional prognostic awareness domains and patient-reported outcomes. Results: Overall, 632 participants (age 65 years (SD=11.3), 51% female, 76% married or living with a partner) were enrolled in the study. In multivariate models, higher cognitive understanding of prognosis was not associated with QOL (b=-2.134; p=0.069), psychological distress (i.e., anxiety: b=0.331; p=0.232 and depression; b=0.233; p=0.368), or peaceful acceptance of terminal illness (b=-0.045; p=0.838). However, emotional coping of prognosis was associated with better QOL (b=1.981; p&lt;0.001), less anxiety (b=-0.516; p&lt;0.001) and depression (b=-0.370; p&lt;0.001) symptoms, and more peaceful acceptance of terminal illness (b=0.438; p&lt;0.001). Conclusions: Patients’ emotional coping with their prognosis, rather than their cognitive understanding of their terminal prognosis, was associated with their QOL, psychological distress, and acceptance of their illness. These findings underscore the importance of examining prognostic awareness and its association with patient-reported outcomes by domains. We also highlight the need to develop supportive care interventions to promote effective coping strategies for patients after prognostic disclosure.

Why and How to Integrate Early Palliative Care Into Cutting-Edge Personalized Cancer Care.

Early palliative care, palliative care integrated with oncology care early in the course of illness, has myriad benefits for patients and their caregivers, including improved quality of life, reduced physical and psychological symptom burden, enhanced prognostic awareness, and reduced health care utilization at the end of life. Although ASCO and others recommend early palliative care for all patients with advanced cancer, widespread implementation of early palliative care has not been realized because of barriers such as insufficient reimbursement and a palliative care workforce shortage. Investigators have recently tested several implementation strategies to overcome these barriers, including triggers for palliative care consultations, telehealth delivery, navigator-delivered interventions, and primary palliative care interventions. More research is needed to identify mechanisms to distribute palliative care optimally and equitably. Simultaneously, the transformation of the oncology treatment landscape has led to shifts in the supportive care needs of patients and caregivers, who may experience longer, uncertain trajectories of cancer. Now, palliative care also plays a clear role in the care of patients with hematologic malignancies and may be beneficial for patients undergoing phase I clinical trials and their caregivers. Further research and clinical guidance regarding how to balance the risks and benefits of opioid therapy and safely manage cancer-related pain across this wide range of settings are urgently needed. The strengths of early palliative care in supporting patients' and caregivers' coping and centering decisions on their goals and values remain valuable in the care of patients receiving cutting-edge personalized cancer care.

Prognostic awareness and prognostic information preferences among advanced cancer patients in Kenya.

Cancer is the third leading cause of death in Kenya. Yet, little is known about prognostic awareness and preferences for prognostic information. To assess the prevalence of prognostic awareness and preference for prognostic information among advanced cancer patients in Kenya. Outpatient medical oncology and palliative care clinics and inpatient medical and surgical wards of Moi Teaching and Referral Hospital (MTRH) in Eldoret, Kenya. The authors surveyed 207 adults with advanced solid cancers. The survey comprised validated measures developed for a multi-site study of end-of-life care in advanced cancer patients. Outcome variables included prognostic awareness and preference for prognostic information. More than one-third of participants (36%) were unaware of their prognosis and most (67%) preferred not to receive prognostic information. Increased age (OR = 1.04, 95% CI: 1.02, 1.07) and education level (OR: 1.18, CI: 1.08, 1.30) were associated with a higher likelihood of preference to receive prognostic information, while increased symptom burden (OR= 0.94, CI: 0.90, 0.99) and higher perceived household income levels (lower-middle vs low: OR= 0.19; CI: 0.09, 0.44; and upper middle- or high vs low: OR= 0.22, CI: 0.09, 0.56) were associated with lower odds of preferring prognostic information. Results reveal low levels of prognostic awareness and little interest in receiving prognostic information among advanced cancer patients in Kenya.Contribution:Given the important role of prognostic awareness in providing patient-centred care, efforts to educate patients in Kenya on the value of this information should be a priority, especially among younger patients.

Goals of Care Among Patients With Advanced Cancer and Their Family Caregivers in the Last Years of Life

Understanding goals of care for terminally ill patients at the end of life is crucial to ensure that patients receive care consistent with their preferences. To investigate the patterns of goals of care among patient-caregiver dyads over the last years of the patient's life and the associations of the goals of care with patient-caregiver characteristics. This prospective cohort study of 210 patient-caregiver dyads involved surveys every 3 months from July 8, 2016, until the patient's death or February 28, 2022. Data from the last 2 years of the patients' lives were analyzed. Dyads, which comprised patients with stage IV solid cancer and their caregivers, were recruited from outpatient clinics at 2 major cancer centers in Singapore. Goals of care were examined via the tradeoffs between life extension and symptom management and between life extension and cost containment. The actor-partner interdependence framework was implemented using mixed-effects linear regressions. This study included 210 dyads (patients: mean [SD] age, 62.6 [10.5] years; 108 men [51.4%]; caregivers: mean [SD] age, 49.4 [14.6] years; 132 women [62.9%]). On average, 34% of patients (264 of 780 observations; range, 23%-42%) and 29% of caregivers (225 of 780 observations; range, 20%-43%) prioritized symptom management over life extension, whereas 24% of patients (190 of 780 observations; range, 18%-32%) and 19% of caregivers (148 of 780 observations; range, 8%-26%) prioritized life extension. Between cost containment and life extension, on average, 28% of patients (220 of 777 observations; range, 22%-38%) and 17% of caregivers (137 of 780 observations; range, 10%-25%) prioritized cost containment, whereas 26% of patients (199 of 777 observations; range, 18%-34%) and 35% of caregivers (271 of 780 observations; range, 25%-45%) prioritized life extension. Goals of care did not change as patients approached death. Patients prioritized symptom management if they experienced higher symptom burden (average marginal effect [SE], 0.04 [0.01]), worse spiritual well-being (average marginal effect [SE], -0.04 [0.01]), and accurate (vs inaccurate) prognostic awareness (average marginal effect [SE], 0.40 [0.18]) and if their caregivers reported accurate prognostic awareness (average marginal effect [SE], 0.53 [0.18]), lower impact of caregiving on finances (average marginal effect [SE], -0.28 [0.08]), and poorer caregiving self-esteem (average marginal effect [SE], -0.48 [0.16]). Compared with patients, caregivers expressed lower preferences for cost containment (average marginal effect [SE], -0.63 [0.09]). Patients prioritized cost containment if they were older (average marginal effect [SE], 0.03 [0.01]), had higher symptom burden (average marginal effect [SE], 0.04 [0.01]), had poorer spiritual well-being (average marginal effect [SE], -0.04 [0.01]), and their caregivers reported poorer caregiving self-esteem (average marginal effect [SE], -0.51 [0.16]) and more family support (average marginal effect [SE], -0.30 [0.14]). In this cohort study of patient-caregiver dyads, findings suggested the importance of interventions aimed at reducing discordance in goals of care between patients and caregivers and helping them develop realistic expectations to avoid costly, futile treatments.

Disease-State Understanding and Experience of Patients Receiving Continuous Intravenous Inotropic Support as Palliative Therapy: A Multicenter Survey.

Background: The use of continuous intravenous inotropic support (CIIS) as palliative therapy in patients with advanced heart failure (HF) has increased over the past decade. CIIS improves New York Heart Association (NYHA) functional class but does not impact survival. Objective: The objective of this study was to examine patients' understanding of the therapeutic intent of CIIS, prognostic awareness, and quality of life with CIIS. Design: We conducted a prospective, cross-sectional, multicenter study of patients with advanced HF receiving CIIS as palliative therapy between 2020 and 2022. Settings/Subjects: An investigator-developed survey instrument was administered to outpatients on CIIS in the United States via telephone. Measurements: Survey data were analyzed using descriptive and inferential statistics. Results: Forty-eight patients, 63% male, 81% African American/Black, with a mean age of 68.9 (standard deviation 12.3) years, participated in this study. The majority of patients responded that they expected CIIS to make them feel better (79%) and increase longevity (75%), but few expected that CIIS would cure their HF (19%). Patients described their overall quality of life on CIIS as not better/worse (19%), somewhat better (46%), and significantly better (35%) and reported high treatment satisfaction (87% were at least somewhat satisfied). Conclusions: In this study, patients report improved quality of life with CIIS as palliative therapy. Patients on CIIS as palliative therapy expected increased survival on CIIS, which is incongruent with current evidence. Further studies on how we can improve care processes so that patients have accurate prognostic and disease-state awareness, and receive goal concordant care, are warranted.

The association of prognostic awareness with quality of life, spiritual well-being, psychological distress, and pain severity in patients with advanced cancer: Results from the APPROACH Study in Indonesia.

Advanced cancer patients' understanding of their illness is key for making informed treatment decisions. Despite the known importance of patients' awareness of their disease prognosis, it is debatable whether this awareness is positively, negatively, or not associated with clinical and psychological outcomes among patients with advanced cancer. This paper aims to determine the prevalence of and factors associated with prognostic awareness and its association with quality of life (QoL), spiritual well-being, pain control, and psychological distress in patients with advanced cancer in Indonesia. This cross-sectional questionnaire-based survey was part of a multicountry study titled "Asian Patient Perspectives Regarding Oncology Awareness, Care and Health (APPROACH)." Patients were asked what they knew about their cancer and treatment. QoL and spiritual well-being were measured using the Functional Assessment of Cancer Therapy - General (FACT-G) and Functional Assessment of Chronic Illness Therapy - Spiritual Well-being (FACIT-Sp) questionnaire. Psychological distress experienced by patients was recorded via the Hospital Anxiety and Depression Scale. Pain severity was also assessed. Data from 160 patients were analyzed using descriptive statistics and multivariable regression models. Of the 160 patients who participated, 55 (34.4%) were unaware of their cancer stage. Those who were aware of their stage of cancer were younger than those who were not aware (45.7 years vs 50.4 years, p = .015). There was no significant difference in spiritual well-being and other domains of QoL between those who were aware and those who were not aware of their advanced cancer stage. There was also no significant difference in anxiety depression or pain severity, even after adjustment for demographic and clinical characteristics. Given the high prevalence of patients who wrongly thought their cancer was curable, more could be done to improve disease and prognostic understanding among patients with advanced cancer in Indonesia. Those who were aware of their advanced cancer stage did not have a poorer QoL, nor did they have more anxiety or depression than those who were unaware. This finding suggests that concerns about the negative impact of prognostic disclosure may be unfounded.

The trajectory of prognostic cognition in patients with advanced cancer: is the traditional advance care planning approach desirable for patients?

Most patients with advanced cancer initially express a desire to be informed of their prognosis, and prognostic discussions between patients and their oncologists can trigger the subsequent trajectory of prognostic cognitions. On the continuum of prognostic cognition, including inaccurate/accurate prognostic awareness (awareness of incurability of cancer, terminal nature of illness or life expectancy) and prognostic acceptance (accepting one's prognosis), patients' perceptions of being informed of their prognosis by oncologists and patients' coping strategy for serious medical conditions regulate prognostic cognitions. However, nearly half of the patients with advanced cancer have poor prognostic awareness, and few patients achieve prognostic acceptance. These phenomena partly act as barriers to participation in advance care planning. When oncologists engage in advance care planning conversations, they must assess the patient's prognostic cognition and readiness for advance care planning. Considering the inaccurate prognostic awareness in a non-negligible proportion of patients and that astatic patients' preferences for future treatment and care are influenced by prognostic cognition, more research on decision-making support processes for high-quality and goal-concordant end-of-life care is needed along with research of advance care planning. In addition to making decisions regarding future medical treatment and care, oncologists must engage in continuous and dynamic goal-of-care conversations with empathic communication skills and compassion from diagnosis to end-of-life care.

Evaluation of circulating levels of miR-135a and miR-193 in patients with sepsis.

Sepsis is a life-threatening condition where early diagnosis and prognostic awareness provide guidance for selecting the appropriate treatment strategies. A wide variety of biomarker-based studies in clinical medicine provide new insights into personalized medicine for sepsis patients. MiRNAs are endogenous non-coding RNA molecules that have been acting as great potential diagnostic, prognostic and therapeutic biomarkers in various diseases. In the present study, the expression levels of two selected miRNAs, including miR-135a and miR-193, were evaluated for their prognostic potential in patients with sepsis. The circulating levels of miRNAs were quantified by quantitative PCR (qPCR) in patients with sepsis (n = 100) and age- and sex-matched healthy controls (n = 100). Statistical findings confirmed the valuable prognostic potential of miR-135a in patients with sepsis, while no significant difference was found between the miR-193 expression level in the patients with sepsis and the controls. Circulating levels of miRNA-135a can serve a the prognostic biomarker for patients with sepsis. These findings highlight the importance of miRNAs as signatures in the personalized managements of sepsis.

Quality of Life, Psychological Distress, and Prognostic Awareness Among Caregivers of Chimeric Antigen Receptor T-Cell Therapy Recipients

Quality of Life, Psychological Distress, and Prognostic Awareness Among Caregivers of Chimeric Antigen Receptor T-Cell Therapy Recipients

Quality of Life and Prognostic Awareness in Caregivers of Patients Receiving Chimeric Antigen Receptor T Cell Therapy

Caregivers of patients undergoing chimeric antigen receptor T cell therapy (CAR-T) play a critical role during treatment, yet their experience remains largely unaddressed. We aimed to longitudinally describe quality of life (QoL) and psychological distress, as well as prognostic awareness, in caregivers and explore the association of prognosis awareness with baseline psychological distress. We conducted a longitudinal study of caregivers of patients undergoing CAR-T and examined QoL (CAReGiverOncology QoL questionnaire) and psychological distress (Hospital Anxiety and Depression Scale) prior to CAR-T (baseline) and at days 7, 30, 90, and 180 post-CAR-T. At baseline, caregivers and patients completed the Prognostic Awareness Impact Scale, which examines cognitive understanding of prognosis, emotional coping with prognosis, and adaptive response (ie, capacity to use prognostic awareness to inform life decisions). We enrolled 58% (69 of 120) of eligible caregivers. Caregivers reported QoL impairments that did not change over time (B = 0.09; P = .452). The rates of clinically significant depression and anxiety symptoms were 47.7% and 20.0%, respectively, at baseline, and 39.1% and 17.4% at 180 days. One-third (32%) of the caregivers and patients reported that their oncologist said the cancer is curable. Caregivers' greater emotional coping with prognosis was associated with fewer symptoms of anxiety (B = -.17; P < .001) and depression (B = -.02; P < .001). Cognitive understanding of prognosis and adaptive response were not associated with psychological distress. Caregivers reported QoL impairments throughout the study period. A substantial proportion of caregivers experienced psychological distress and reported misperceptions about the prognosis, highlighting the need for supportive care interventions.

Outcomes and Experiences of Patients and Their Caregivers After Severe Stroke Requiring Tube Feeding in Peru

ObjectivesEvaluate clinical outcomes of stroke survivors in Peru discharged with artificial nutrition via a feeding tube (FT), and explore perspectives and experiences of these patients and their caregivers. MethodsRetrospective chart review to describe the prevalence of FT placement and characteristics of patients admitted with stroke to the Instituto Nacional de Ciencias Neurológicas in Lima, Peru between January 2019 and 2021. Follow-up calls to stroke survivors discharged home with FTs or their caregivers included quantitative and qualitative questions to assess long-term outcome and explore perspectives around poststroke care and FT management. We analyzed quantitative data descriptively and applied thematic analysis to qualitative data using a consensus-driven codebook. ResultsOf 812 hospitalized patients with stroke, 146 (18%) were discharged home with FT, all with nasogastric tubes (NGTs). Follow-up calls were performed a median of 18 months after stroke with 96 caregivers and three patients. Twenty-five patients (25%) had died, and 82% of survivors (n = 61) remained dependent for some care. Four themes emerged from interviews: (1) perceived suffering (physical, emotional, existential) associated with the NGT and stroke-related disability, often exacerbated by lack of preparedness or prognostic awareness; (2) concerns around compromised personhood and value-discordant care; (3) coping with their loved-one's illness and the caregiving role; and (4) barriers to NGT care and skill acquisition. ConclusionWe identified a high burden of palliative and supportive needs among severe stroke survivors with NGTs and their caregivers suggesting opportunities to improve poststroke care through education, communication, and support.