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

Importance: 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. Objectives: 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. Design, Setting, and Participants: 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. Main Outcomes and Measures: 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. Results: 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]). Conclusions and Relevance: 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.

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.

BACKGROUND AND OBJECTIVES: 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. METHODS: 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. RESULTS: 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. SIGNIFICANT OF RESULTS: 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 Healing through Arts (HeARTS) program for children bereaved by cancer: Pilot study findings from Singapore.

OBJECTIVES: The article aims to investigate the feasibility, acceptability, and initial efficacy of a short-term 3-day art therapy group for children who have experienced parental death to cancer. METHODS: The study utilized a pretest-posttest design and included children (n = 20) aged 7-12 years. The feasibility of the intervention was measured by recruitment ability, study compliance, and intervention adherence, while acceptability was assessed using a child-reported satisfaction survey. Efficacy was examined using the child-reported Pediatric Quality of Life Inventory (PedsQL), while the emotional, social, and behavioral functioning of children was measured using the parent-reported Strengths and Difficulties Questionnaire. Paired sample t-tests were used for analyses. RESULTS: The intervention was found to be feasible (80% recruitment rate and 100% session adherence). Acceptability was high, and all participants were satisfied and found the intervention to be helpful. While results did not reach statistical significance, improvements in psychosocial and physical quality of life were reported by all the children post-intervention and at the 3-month follow-up. Parent-reported a decrease in behavioral difficulties scores and an increase in prosocial behavior scores at post-intervention and at the 3-month follow-up. SIGNIFICANCE OF RESULTS: The 3-day art therapy group intervention was shown to be feasible to conduct and acceptable to the recipients. The intervention shows promise in improving post-death adjustment and quality of life outcomes of children bereaved by parental death due to cancer that were maintained after 3 months. The use of art therapy groups to ameliorate difficulties associated with parental loss and to assist children in coping day-to-day difficulties should be further investigated.

Deathbed experiences and meaning-making: Perspectives of family caregivers of patients who received cancer palliative care.

OBJECTIVES: The deathbed symbolizes a time when the patient is dangerously ill and where death is imminent. The memories of family caregivers during this time can potentially shape their meaning-making of the patient's death and bereavement adjustment. We aimed to understand the experiences of family caregivers at the deathbed of patients receiving palliative care. We also examined caregiver's meaning-making that occurred after the patient's death. METHODS: In this retrospective qualitative study, family caregivers of cancer patients who received palliative care in Singapore were recruited through purposive sampling. In-person, semi-structured interviews were individually conducted with study participants to understand their experiences from a caregiver's perspective before and after the death of the patient. Thematic content analysis method was conducted. RESULTS: A total of 25 bereaved family caregivers were interviewed, with spouses, adult children, and others comprising one-third each of the sample. Six themes emerged from caregivers' recollected experiences around the patient deathbed: Lasting image of the patient, A time of intense emotions, Healthcare providers prepare caregivers, A time for saying goodbye, Rituals provide comfort, and Impact on family ties. Four themes emerged surrounding post-loss meaning-making: An end to the pain and suffering, "Have I done enough?," Significance in the timing of events, and Gaining strength and personal growth. SIGNIFICANCE OF RESULTS: The deathbed is a salient time for family caregivers as they prepare for patient's death. There are opportunities to provide support to the family based on the study findings.

Understanding the experiences of mothers receiving perinatal palliative care: A qualitative study.

BACKGROUND: Despite the diagnosis of life-limiting foetal conditions, some mothers choose to continue their pregnancies. The experiences of these individuals are relatively unknown, making it difficult for perinatal palliative services to be targeted towards their needs. AIM: To examine maternal experiences in perinatal palliative care among those who choose to continue their pregnancies despite life-limiting foetal condition. DESIGN: Qualitative, retrospective study involving semi-structured interviews. Braun & Clarke's reflexive thematic analyses using a constructionist-interpretive approach were conducted. SETTING/PARTICIPANTS: A total of 15 adult women participants who decided to continue their pregnancies after learning of life-limiting foetal diagnoses were recruited from a Singaporean tertiary hospital. Interviews were conducted in-person or via video conferencing. RESULTS: Seven themes were synthesized from the data: (1) Internal upheaval - 'World turns upside down'; (2) Role of religion and spirituality in hope of miracles; (3) Support from family and close friends; (4) Navigating a fragmented healthcare system; (5) Value added by the perinatal palliative service; (6) Goodbye and grieving and (7) No regrets and other personal reflections. CONCLUSIONS: Continuing a pregnancy despite the diagnosis of a life-limiting foetal condition can be challenging for mothers. To better meet their needs during this difficult period, perinatal palliative care must be patient-centred, multidisciplinary and non-judgmental. Efforts must be made to streamline the healthcare delivery process.

A cognitive behavioral therapy-based intervention to address body image in patients with facial cancers: Results from a randomized controlled trial.

OBJECTIVES: Body image adjustment is a crucial issue for patients with facial cancer, but body image-specific interventions are scarce. We report results of a novel psychotherapeutic intervention to address body image concerns during acute postoperative recovery following facial reconstructive surgery. Our primary aims were to evaluate the intervention's feasibility, acceptability, and efficacy on body image concerns, psychological distress, and quality of life (QOL). METHODS: Adults with facial cancers who endorsed body image concerns were recruited to participate in a randomized controlled trial. The intervention group participated in 4 in-person counseling sessions. The control group received an educational booklet and a brief phone call. Participants completed measures of body image, distress, and QOL at baseline and at the 4-week follow-up to assess the impact of the intervention. Intervention outcomes were assessed with 2 sample t-tests or Mann-Whitney U tests as appropriate. RESULTS: Twenty-nine participants completed both the baseline and follow-up assessments. The intervention demonstrated good feasibility with a high retention rate (79%), visit completion rate (81%), and high satisfaction scores (75% reported mean satisfaction score of >3). Intervention did not result in an observed statistically significant difference in reduction in body image dissatisfaction and disturbance, psychological distress, or improvement in QOL compared with the control group. However, intervention resulted in statistically significant difference in perceived social impact (-1 vs. -8.3, p = 0.033) compared to control group. SIGNIFICANCE OF RESULTS: Our study highlights the potential clinical benefits of a novel psychotherapeutic intervention that targets body image concerns and suggests the need for further evaluation.

Quality of life and psychological distress of patients with advanced cancer in the Philippines.

PURPOSE: This study aimed to describe the quality of life (QOL) and psychological distress (anxiety and depression) of Filipino patients with advanced solid cancers and identify sociodemographic and clinical-related factors associated with them. METHODS: 195 patients with advanced cancer were recruited from a major hospital treating cancer patients in the Philippines. Participants completed self-reported surveys on Quality-of-life (QOL-FACT-G) and psychological distress (HADS-D, HADS-A). Multi-variable OLS regression models were performed where sociodemographic, health history and clinical characteristics were included as predictors. RESULTS: The average total FACT-G score was 65.39/108 (Standard deviation (SD) = 13.76), with the physical well-being scale having the lowest scores (M = 14.14/28, SD = 5.92). The two most common symptoms reported were fatigue (88%) and pain (86.5%). Physical symptom burden was significantly negatively associated with QOL and psychological distress. The average HADS-total score was 14.46/21 (SD = 5.77), with 8% with probable anxiety and 27% with probable depression. Participants who reported greater reliance on their spiritual faith for strength in coping with illness reported lower depression scores. CONCLUSIONS: Our findings underline the importance of understanding the multi-dimensional outcomes of Filipino advanced cancer patients. Results may be used to improve QOL and reduce the psychological distress of advanced cancer patients.

A prospective study of psychological distress among patients with advanced cancer and their caregivers.

BACKGROUND: Cancer can impact the psychological well-being of both patients and their informal caregivers. We investigated the joint trajectories of psychological distress among Singaporean advanced cancer patients-caregiver dyads. We also examined predictors of trajectory group membership. METHODS: This study utilised data from 299 patients with advanced solid cancer and their caregivers over 33 months (12 times points). Group-based trajectory modelling was used to examine the joint trajectories of patient anxiety, patient depression, caregiver anxiety and caregiver depression scores using the Hospital Anxiety and Depression Scale. RESULTS: Four joint trajectory groups were found: (1) Patient-caregiver low distress (27%), (2) patient-caregiver increasing distress (28.5%), (3) patient low- caregiver borderline distress (25%), (4) patient-caregiver high distress (19.5%). Dyads where the patient is below 50 years of age were more likely to be in Group 4. Dyads where caregiver-patient emotional closeness was low were more likely to be in Groups 2 or 4 where dyads reported increasing/high distress. Dyads that reported financial inadequacy were more likely to be in Groups 2, 3 and 4, while dyads with caregivers who were employed were more likely to be in group 3. CONCLUSIONS: A substantial proportion of patients and caregivers reported anxiety and/or depression that lasted or increased throughout the study duration. We found significant heterogeneity in how dyads experienced psychological distress, suggesting that efforts should consider dyadic differences when providing psychological support. Particular focus should be placed on identifying dyads that are at risk and who require additional support.

Prognostic awareness and its association with health outcomes in the last year of life.

BACKGROUND: Little research has examined changes in prognostic awareness (PA) in the last year of life and the extent PA change was associated with anxiety, depression, and spiritual well-being among metastatic cancer patients. METHODS: Two surveys were administered in the last year of life to 176 conveniently sampled Singaporean patients with stage 4 solid cancers. PA was assessed by asking patients whether they were aware that their treatments were unlikely to cure their cancer. Multivariable linear regression models were used to investigate the association of PA change with anxiety, depression, and spiritual well-being. RESULTS: The proportion of patients with accurate PA increased (39.2%-45.5%; p < 0.05) from the second-last assessment to the last assessment before death. Those with inaccurate PA decreased (26.1%-20.4%; p < 0.05) while a third of patients remained uncertain at both assessments (34.7% and 34.1%). Compared to patients with inaccurate PA at both assessments, patients who reported accurate PA at both assessments reported worsened anxiety (ß = 2.08), depression (ß = 3.87), and spiritual well-being (ß = -4.45) while patients who reported being uncertain about their prognosis at both assessments reported worsened spiritual well-being (ß = - 6.30) at the last assessment before death (p < 0.05 for all). CONCLUSIONS: Interventions should dually focus on decreasing prognostic uncertainty at the end-of-life while minimising the psychological and spiritual sequelae associated with being prognostically aware. More research is needed to clarify the causes of prognostic uncertainty.

Caregiver-Reported Roles in Treatment Decision Making in Advanced Cancer and Associated Caregiving Burden and Psychological Distress: A Longitudinal Study.

OBJECTIVE: To longitudinally examine caregiver-reported treatment decision-making roles and to investigate the associations of these roles with caregiver burden, caregiving esteem, caregiver anxiety, and depression. METHODS: 281 caregivers of patients with stage IV solid cancers were recruited from outpatient clinics in Singapore. Caregivers were eligible if they were aged ≥21 y, primary informal caregiver, and involved in treatment decision making. We used 3 y of longitudinal data. The decision-making roles were grouped into 4 categories: no family involvement, patient/physician-led, joint, and family-led/alone decision making. Mixed-effects linear regressions were used to assess associations between decision-making roles and caregiver outcomes. RESULTS: On average, 72% of caregivers reported family involvement in decision making. Compared with baseline, a higher proportion of caregivers at the 36-mo follow-up reported no family involvement (from 23% to 34%, P = 0.05) and patient/physician-led decision making (from 22% to 34%, P = 0.02), while a lower proportion reported family-led/alone (from 19% to 7%, P = 0.01) decision making. Compared with family-led/alone decision making, caregivers reporting no family involvement reported lower impact on finances (-0.15 [-0.28, -0.01], P = 0.03) while caregivers who reported patient/physician-led decision making reported lower impact on schedule and health (-0.12 [-0.20, -0.03], P = 0.01), and finances (-0.15 [-0.28, -0.03], P = 0.02), and lower anxiety (-0.69 [-1.17, -0.22], P < 0.01), and depressive symptoms (-0.69 [-1.12, -0.26], P < 0.01). Caregivers who reported joint decision making reported higher caregiving esteem (0.07 [0.01, 0.14], P = 0.02). CONCLUSIONS: Higher family involvement in decision making was associated with higher caregiver burden and psychological distress. Help should be given so that family caregivers can support patient decision-making in a meaningful way. HIGHLIGHTS: Compared with baseline, a lower proportion of caregivers at the 36-mo follow-up reported family-led or family-alone decision making, and a higher proportion of caregivers reported patient-led or physician-led decision making.Higher levels of family involvement in decision making were associated with burdens on caregivers' daily life, health, and finances and increased caregiver anxiety and depression.Support must be given so that family members can contribute to making medical decisions in a rewarding manner.

Variation in Patient-Reported Decision-Making Roles in the Last Year of Life among Patients with Metastatic Cancer: A Longitudinal Study.

OBJECTIVE: We investigated the variation in patient-reported decision-making roles in the past year of life among patients with metastatic solid cancer and the associations of these roles with patient quality of life and perceived quality of care. METHODS: We used the last year of life data of 393 deceased patients from a prospective cohort study. Patients reported their decision-making roles, quality of life (emotional well-being, spiritual well-being, and psychological distress) and perceived quality of care (care coordination and physician communication) every 3 months until death. We used mixed effects linear regressions to investigate the associations of decision-making roles with patients' quality of life and perceived quality of care. RESULTS: The most reported roles, on average, were patient-led (37.9%) and joint (23.4%; with physicians and/or family caregivers) decision making, followed by no patient involvement (14.8%), physician/family-led (12.9%), and patient alone (11.0%) decision making. Patient level of involvement in decision making decreased slightly as death approached (P < 0.05). Compared with no patient involvement, joint decision making was associated with better emotional well-being (ß [95% confidence interval] = 1.02 [0.24, 1.81]), better spiritual well-being (1.48 [0.01, 2.95]), lower psychological distress (-1.99 (-3.21, -0.77]), higher perceived quality of care coordination (5.04 [1.24, 8.85]), and physician communication (5.43 [1.27, 9.59]). Patient-led decision making was associated with better spiritual well-being (1.69 [0.24, 3.14]) and higher perceived quality of care coordination (6.87 [3.17, 10.58]) and physician communication (6.21 [2.15, 10.27]). CONCLUSION: Joint and patient-led decision-making styles were reported by 61% of the patients and were associated with better quality of life and quality of care. A decrease in the level of patient involvement over time indicates reliance on family and physicians as death approached. HIGHLIGHTS: Among patients with metastatic cancer, the level of patient involvement in decision making decreased slightly as death approached.Joint decision making of patients with their physicians and/or family caregivers and patient-led decision making were associated with better quality of life and perceived quality of care.Patients with metastatic cancer should be encouraged to be involved in decision making together with their physicians and/or family caregivers to potentially improve their end-of-life experience.

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.

Awareness and Utilization of Palliative Care Among Advanced Cancer Patients in Asia.

CONTEXT: To date, little is known about palliative care (PC) awareness and utilization in low- and middle-income countries (LMICs) in Asia. OBJECTIVES: This study aimed to investigate PC awareness and its predictors, utilization of PC services, and perceived utilization barriers among advanced cancer patients from select hospitals in Asian LMICs. METHODS: This cross-sectional study analyzed data of 759 advanced cancer patients at major hospitals of four LMICs in Asia (i.e., Bangladesh, Philippines, Sri Lanka, and Vietnam). The predictors of PC awareness were investigated using multivariable logistic regression. RESULTS: Overall PC awareness was 30.8% (n = 234). Patients with higher education (OR = 1.0; CI = 1.0,1.1), from upper-middle or high-income households (compared to low-income) (OR = 2.0; CI = 1.2,3.3), awareness of disease severity (OR = 1.5; CI = 1.0,2.2), and higher pain severity (OR = 1.1; CI = 1.0,1.2) had higher odds of PC awareness. Compared to patients who perceived themselves as being very informed about disease trajectory, those who were unsure (OR = 0.5; CI = 0.3,0.8) or uninformed (OR = 0.5; CI = 0.3,0.9) had lower odds of PC awareness. The PC utilization rate was 35.0% (n = 82) among those with PC awareness, and 47.8% (n = 66) among patients recommended PC by a healthcare professional (n = 138). The most cited PC utilization barriers were currently receiving anti-cancer treatment (n = 43; 33.9%), and having insufficient information about PC (n = 41; 32.3%). CONCLUSION: The low awareness of PC services in these major hospitals in Asian LMICs highlights that more effort may be required to promote the awareness of PC in this region. The efforts should especially focus on those from disadvantaged groups to reduce the gap in PC awareness.

A prospective cohort study assessing aggressive interventions at the end-of-life among patients with solid metastatic cancer.

BACKGROUND: Many patients with a solid metastatic cancer are treated aggressively during their last month of life. Using data from a large prospective cohort study of patients with an advanced cancer, we aimed to assess the number and predictors of aggressive interventions during last month of life among patients with solid metastatic cancer and its association with bereaved caregivers' outcomes. METHODS: We used data of 345 deceased patients from a prospective cohort study of 600 patients. We surveyed patients every 3 months until death for their physical, psychological and functional health, end-of-life care preference and palliative care use. We surveyed their bereaved caregivers 8 weeks after patients' death regarding their preparedness about patient's death, regret about patient's end-of-life care and mood over the last week. Patient data was merged with medical records to assess aggressive interventions received including hospital death and use of anti-cancer treatment, more than 14 days in hospital, more than one hospital admission, more than one emergency room visit and at least one intensive care unit admission, all within the last month of life. RESULTS: 69% of patients received at least one aggressive intervention during last month of life. Patients hospitalized during the last 2-12 months of life, male patients, Buddhist or Taoist, and with breast or respiratory cancer received more aggressive interventions in last month of life. Patients with worse functional health prior to their last month of life received fewer aggressive interventions in last month of life. Bereaved caregivers of patients receiving more aggressive interventions reported feeling less prepared for patients' death. CONCLUSION: Findings suggest that intervening early in the sub-group of patients with history of hospitalization prior to their last month may reduce number of aggressive interventions during last month of life and ultimately positively influence caregivers' preparedness for death during the bereavement phase. TRIAL REGISTRATION: NCT02850640 .

Perceived stigma and its correlates among Asian patients with advanced cancer: A multi-country APPROACH study.

OBJECTIVES: Perceived cancer-related stigma can affect mental health and potentially treatment choices for patients with cancer. Nevertheless, perceived stigma is not very well understood in Asia. This study investigated across six developing Asian countries: (1) the prevalence of perceived stigma among advanced cancer patients, (2) its risk factors, and (3) its association with patient treatment preferences. METHODS: This cross-sectional study recruited patients receiving oncology care across major hospitals in Bangladesh, China, India, Philippines, Sri Lanka and Vietnam. Participants (N = 1358) were adults diagnosed with stage IV metastatic solid cancer who completed self-reported surveys. Multi-variable logistic regression and ordered logit models examined the associations with perceived stigma and variables of interest. RESULTS: Across the countries, 35%, 95% CI [32%, 38%] of patients reported experiencing at least one facet of cancer-related stigma often or always, while 60% [57%, 63%] reported it occurring occasionally. Top-endorsed facets of perceived stigma across the Asian countries suggest a distinct pattern. Having knowingly engaged in health-risk behaviours (OR = 2.03-2.24, 95% CI [1.14-1.19, 3.43-4.41]), unemployment (2.64 [1.67, 4.19]) and body image change (1.57 [1.00, 2.45]) were associated with higher odds of perceived stigma, while time mitigated perceived stigma (0.49-0.65 [0.30-0.45, 0.76-0.92]). Perceived stigma was associated with lower odds of preference for life-extending treatments, although the associations did not hold up in the adjusted model. CONCLUSIONS: Perceived stigma is unique among Asian advanced cancer patients. Stigma is important to assess and address, taking into consideration the various sociodemographic, clinical and psychological factors of cancer patients.

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.

Patients' Awareness of Advanced Disease Status, Psychological Distress and Quality of Life Among Patients With Advanced Cancer: Results From the APPROACH Study, India.

BACKGROUND: Prognostic disclosure to patients with advanced cancer facilitates treatment decisions and goals of care discussions. However, the perspectives of patients, families and physicians differ in this regard across different cultures. Non-disclosure of cancer diagnosis or prognosis is commonly observed in family-centric cultures such as India. AIM: To assess the prevalence of and factors associated with cancer patients' awareness of advanced disease status; and its with quality of life and psychological distress. METHODS: Patients for this cross-sectional questionnaire-based survey were recruited from oncology and palliative medicine clinics at a tertiary cancer hospital in India from January 2017 to June 2018. Patients aged ≥ 21 years, aware of cancer diagnosis and receiving oncology treatment for Stage IV solid cancer were included in the study after obtaining written informed consent. RESULTS: Two hundred patients were enrolled, of which 146 (73%) were not aware of the stage of their malignancy and 9 (4.5%) believed that their disease was at stage I, II or III. Those who were aware of their advanced cancer stage had more years of education (9.9 years vs 8.1 years, p = .05) and had poorer spiritual wellbeing in the faith domain (adjusted difference -1.6, 95% confidence interval -3.1 to -0.1, p = .03) compared to those who were unaware. CONCLUSION: It is recommended that future studies may explore prognostic understanding in Indian patients according to their socio-cultural, spiritual and educational background.

Disparities in end-of-life outcomes among advanced cancer patients in Sri Lanka: Results from the APPROACH study.

OBJECTIVE: A Universal Health Coverage goal is to provide access to affordable palliative care to reduce disparities in end-of-life (EOL) outcomes. To assess progress toward this goal in Sri Lanka, our primary aim was to systematically assess differences in patients' physical, psychological, social and spiritual outcomes, and their perceived quality of care by their socioeconomic status (SES). METHODS: As part of the multi-country APPROACH (Asian Patient Perspectives Regarding Oncology Awareness, Care and Health) study, we surveyed 199 patients with a stage IV solid malignant tumor and aged >21 years from the largest government cancer hospital in Sri Lanka. We assessed their physical (physical and functional well-being, symptom burden), psychological (anxiety, depression, emotional well-being), social (social well-being), and spiritual outcomes and perceived quality of care (physician communication, nursing care, and coordination/responsiveness). RESULTS: Low SES patients reported significantly lower physical and functional well-being, emotional well-being, spiritual well-being including meaning/peace and faith; and significantly higher symptom burden, anxiety and depressive symptoms compared with patients from high SES (p < 0.05 for all outcomes). SIGNIFICANCE OF RESULTS: Results have implications regarding reducing barriers in access to appropriate palliative care and EOL care services to stage IV cancer patients from low SES in Sri Lanka.

Patient-Reported Roles in Decision-Making Among Asian Patients With Advanced Cancer: A Multicountry Study.

Purpose. We investigated 1) perceived roles in decision-making among advanced cancer patients in 5 Asian countries 2) associations of patient characteristics with these roles, and 3) the association of perceived roles with quality of life and perceived quality of care. Methods. We surveyed 1585 patients with stage IV solid cancer. Multinomial logistic regressions were used to analyze associations of patient characteristics with decision-making roles. Multivariate regressions were used to analyze associations of decision-making roles with quality of life and care. Results. The most common perceived-role was no patient involvement. Most patients (73%) reported roles consistent with their preferences. Being male, nonminority, higher educated, aware of advanced cancer diagnosis, and knowledge of cancer diagnosis for ≥1 year were associated with higher levels of patient involvement in decision-making. Compared to no patient involvement, joint decision-making (together with physicians/family) was associated with higher social (ß = 2.49, P < 0.01) and spiritual (ß = 2.64, P < 0.01) well-being, and better quality of physician communication (ß = 9.73, P < 0.01) and care coordination (ß = 13.96, P < 0.01) while making decisions alone was associated with lower emotional (ß = -1.43, P < 0.01), social (ß = -2.39, P < 0.01), and spiritual (ß = -2.98, P < 0.01) well-being. Conclusions. Findings suggest that a substantial number of advanced cancer patients were not (and preferred not to be) involved in decision-making. Despite this finding, joint decision-making together with physicians/family was associated with better quality of life and care. Implications. Physicians should explain the benefits of shared decision making to patients and encourage participation in decision-making, while ensuring that patients feel supported and do not find decision-making overwhelming.