Three distinct symptom profiles among older adults with severe dementia: A latent class analysis.

OBJECTIVES: Older adults with severe dementia experience multiple symptoms at the end of life. This study aimed to delineate distinct symptom profiles of older adults with severe dementia and to assess their association with older adults' and caregiver characteristics and 1-year mortality among older adults. METHODS: We used baseline data from a cohort of 215 primary informal caregivers of older adults with severe dementia in Singapore. We identified 10 indicators representing physical, emotional, and functional symptoms, and responsive behaviors, and conducted latent class analysis. We assessed the association between delineated older adults' symptom profiles and their use of potentially burdensome health-care interventions in the past 4 months; older adults' 1-year mortality; and caregiver outcomes. RESULTS: We delineated 3 profiles of older adults - primarily responsive behaviors (Class 1; 33%); physical and emotional symptoms with responsive behaviors (Class 2; 20%); and high functional deficits with loss of speech and eye contact (Class 3; 47%). Classes 2 and 3 older adults were more likely to have received a potentially burdensome intervention for symptoms in the past 4 months and have a greater hazard for 1-year mortality. Compared to Class 1, caregivers of Class 2 older adults were more likely to experience adverse caregiver outcomes, that is, higher distress, impact on schedule and health, anticipatory grief, and coping and lower satisfaction with care received (p<0.01 for all). SIGNIFICANCE OF RESULTS: The 3 delineated profiles of older adults can be used to plan or optimize care plans to effectively manage symptoms of older adults and improve their caregivers' outcomes.

Trajectories of Health-related quality of life in patients with Advanced Cancer during the Last Year of Life: findings from the COMPASS study.

BACKGROUND: Patients with advanced cancer prioritise health-related quality of life (HrQoL) in end-of-life care, however an understanding of pre-death HrQoL trajectories is lacking. We aimed to delineate and describe the trajectories of physical, social, emotional and functional HrQoL during last year of life among advanced cancer patients. We assessed associations between these trajectories and patient socio-demographic characteristics, healthcare use and place of death. METHODS: We used data from 345 decedents from a prospective cohort study of 600 patients with a solid advanced cancer receiving secondary care at public hospitals in Singapore. Patients were surveyed every three months until death and HrQoL was assessed using the Functional Assessment of Cancer Therapy - General (FACT-G) questionnaire. Interviews were conducted between July 2016 and December 2019. Group-based multi-trajectory modelling was used to assess potential heterogeneity in the four HrQoL dimensions during patients' last year of life. RESULTS: We identified four distinct trajectories of HrQoL - (1) overall high HrQoL (47% of sample), (2) progressively decreasing HrQoL (32%), (3) asymmetric decline in HrQoL (13%), (4) overall low HrQoL (8%). Compared to patients with secondary or above education, those with primary education or less (ß = 1.39, SE = 0.55, p-value = 0.012) were more likely to have "progressively decreasing HrQoL" or "overall low HrQoL" in contrast to "overall high HrQoL". Compared to patients with 'overall high HrQoL', those with 'overall low HrQoL' had longer length of hospital stay during the last year of life (ß = 0.47, SE = 0.21, p-value = 0.026) and were more likely to die in a hospice/care home (ß = 1.86, SE = 0.66, p-value = 0.005). CONCLUSION: Our results showed heterogeneity in deterioration of HrQoL among patients with advanced cancer in the last year of life. Systematic monitoring of HrQoL, early identification and referral of high-risk patients to palliative care may provide timely relief and mitigate the steep decline in their HrQoL. TRIAL REGISTRATION: NCT02850640.

Epidemiology of Pain Among Patients with Solid Metastatic Cancer During the Last Year of Life.

Background: Despite medical advancements, pain is a major source of suffering at the end of life for patients with a solid metastatic cancer. We aimed to assess the trajectory of pain prevalence, severity, interference, and inadequacy of analgesia during the last year of life. Methods: We analysed data from the last year of life of 345 decedents from a prospective cohort study of 600 patients with a solid metastatic cancer in Singapore. Patients were surveyed every 3 months and their pain outcomes (prevalence, severity, and interference) and inadequacy of analgesia were analysed. We used mixed-effects regressions to assess the association of pain outcomes with patients' time from death, demographics, and planned or unplanned hospitalisations. Results: Prevalence of pain was higher in the last 2 months (65%) compared to 11 to 12 months (41%) before death. Pain severity and interference scores (mean ± SD) were also higher in the last month (severity: 2.5±2.6; interference: 2.6±3.0) compared to 12 months before death (severity: 1.4±2.0; interference: 1.4±2.0). At any time during the last year of life, 38% of the patients were prescribed non-steroidal anti-inflammatory drugs, 11% were prescribed weak-opioids and 29% were prescribed strong opioids. These analgesics were prescribed through either oral, topical or injectable route. Pain outcomes were significantly worse (p-value<0.05) for younger patients, those with higher education, and more financial difficulties, while interference was higher after an unplanned hospitalisation in the last month. Females reported higher pain severity score during their last year of life compared to males. For patients reporting moderate to severe pain, inadequacy of analgesia was lower in the last 2 months (43%) compared to 11 to 12 months before death (83%). Conclusion: Findings highlight the need for greater attention in monitoring and treatment of pain even earlier in the disease trajectory, and increased attention to patients discharged from an unplanned hospitalisation.

Advance care planning and caregiver outcomes: intervention efficacy - systematic review.

CONTEXT: Caregivers make difficult end-of-life (EOL) decisions for patients, often adversely affecting their own psychological health. Understanding whether advance care planning (ACP) interventions benefit caregivers can enable healthcare systems to use these approaches to better support them. OBJECTIVE: We conducted a systematic review and meta-analysis to identify and quantify the impacts of ACP interventions on caregiver outcomes. METHODS: We searched MEDLINE, Embase and Cochrane databases for English-language randomised or cluster randomised controlled trials (RCTs) published until May 2021. Two reviewers independently assessed methodological quality using the Physiotherapy Evidence-Based Database Scale. We conducted a narrative synthesis for each outcome. Difference between arms with a p value of <0.05 was considered statistically significant. RESULTS: Of the 3487 titles reviewed, 35 RCTs met eligibility; 68.6% were rated high quality. Included RCTs were heterogeneous in intervention characteristics, setting and disease. Meta-analysis of 17 RCTs showed that ACP had large and significant improvement in congruence in EOL care preferences between caregivers and patients (standardised mean difference 0.73, 95% CI 0.42 to 1.05). The effect of ACP on this outcome, however, declined over time. We also found some evidence that ACP improved bereavement outcomes (three of four RCTs), satisfaction with care quality/communication (four of the six RCTs), reduced decisional conflict (two of the two RCTs) and burden (one RCT). No study showed that mental health of caregivers were adversely affected. CONCLUSION: The review provides most comprehensive evidence about the efficacy of ACP on caregiver outcomes. Findings suggest some evidence of benefit of ACP on caregiver outcomes.

Trajectories of physical symptom burden and psychological distress during the last year of life in patients with a solid metastatic cancer.

OBJECTIVE: To delineate the trajectories of physical symptoms and psychological distress among patients with a solid metastatic cancer during the last year of life. METHODS: We used data of 345 decedents from a prospective cohort of 600 patients with a Stage IV solid cancer. Using group-based trajectory modelling, we assessed (a) demographic (age, gender, education, cancer site) predictors of trajectory membership, (b) shift in trajectories associated with planned and unplanned hospitalizations, emergency room visits and chemotherapy, and (c) the association between trajectory membership and place of death. RESULTS: We identified three trajectories of physical symptoms-"persistent mild" (56%), "progressive moderate" (36%), and "progressive severe" (8%), and two for psychological distress-"persistent mild" (72%) and "progressive distress" (28%). Females (ß = 1.40 [SE = 0.55], p-value = 0.01) and highly educated patients (ß = 1.46 [SE = 0.62], p-value = 0.02) were more likely to experience progressive severe symptoms compared to persistent mild symptoms. Older patients were less likely (ß = -1.01 [SE = 0.33], p-value = 0.003), while those with gynecological cancers (ß = 1.51 [SE = 0.65], p-value = 0.02) were more likely to experience progressive distress compared to persistent mild distress. Planned and unplanned hospitalizations, emergency room visits, and chemotherapy were associated with a worsening in trajectories. Patients with higher distress were more likely to die in a hospice compared to a hospital. CONCLUSIONS: Interventions to improve physical symptoms and distress can focus on patients at risk of being in worse trajectories and at critical time points in the last year of life-hospitalizations, emergency room visits, and chemotherapy.