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BACKGROUND: Ex-ante identification of the last year in life facilitates a proactive palliative approach. Machine learning models trained on electronic health records (EHR) demonstrate promising performance in cancer prognostication. However, gaps in literature include incomplete reporting of model performance, inadequate alignment of model formulation with implementation use-case, and insufficient explainability hindering trust and adoption in clinical settings. Hence, we aim to develop an explainable machine learning EHR-based model that prompts palliative care processes by predicting for 365-day mortality risk among patients with advanced cancer within an outpatient setting. METHODS: Our cohort consisted of 5,926 adults diagnosed with Stage 3 or 4 solid organ cancer between July 1, 2017, and June 30, 2020 and receiving ambulatory cancer care within a tertiary center. The classification problem was modelled using Extreme Gradient Boosting (XGBoost) and aligned to our envisioned use-case: "Given a prediction point that corresponds to an outpatient cancer encounter, predict for mortality within 365-days from prediction point, using EHR data up to 365-days prior." The model was trained with 75% of the dataset (n = 39,416 outpatient encounters) and validated on a 25% hold-out dataset (n = 13,122 outpatient encounters). To explain model outputs, we used Shapley Additive Explanations (SHAP) values. Clinical characteristics, laboratory tests and treatment data were used to train the model. Performance was evaluated using area under the receiver operating characteristic curve (AUROC) and area under the precision-recall curve (AUPRC), while model calibration was assessed using the Brier score. RESULTS: In total, 17,149 of the 52,538 prediction points (32.6%) had a mortality event within the 365-day prediction window. The model demonstrated an AUROC of 0.861 (95% CI 0.856-0.867) and AUPRC of 0.771. The Brier score was 0.147, indicating slight overestimations of mortality risk. Explanatory diagrams utilizing SHAP values allowed visualization of feature impacts on predictions at both the global and individual levels. CONCLUSION: Our machine learning model demonstrated good discrimination and precision-recall in predicting 365-day mortality risk among individuals with advanced cancer. It has the potential to provide personalized mortality predictions and facilitate earlier integration of palliative care.
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Registros Eletrônicos de Saúde , Aprendizado de Máquina , Cuidados Paliativos , Humanos , Aprendizado de Máquina/normas , Registros Eletrônicos de Saúde/estatística & dados numéricos , Cuidados Paliativos/métodos , Cuidados Paliativos/normas , Cuidados Paliativos/estatística & dados numéricos , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Medição de Risco/métodos , Neoplasias/mortalidade , Neoplasias/terapia , Estudos de Coortes , Adulto , Oncologia/métodos , Oncologia/normas , Idoso de 80 Anos ou mais , Mortalidade/tendênciasRESUMO
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.
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OBJECTIVES: Patients with cancer often have unmet needs (e.g., physical, psychosocial, and emotional) during their cancer journey, putting them at risk for distress. This study aimed to identify factors associated with distress and to investigate the association between distress and acute health-care services utilization in a cohort of breast and gynecological cancer patients across different survivorship stages. METHODS: This was a retrospective cohort study of patients who visited National Cancer Centre Singapore between September 2019 and July 2020. Distress was evaluated using the self-reported Distress Thermometer and Problem List, with a distress thermometer score ≥4 signifying high distress. Data were extracted from electronic medical records. Multivariable logistic regression was used to identify demographic or clinical variables associated with distress and estimate the odds of emergency department (ED) visits and hospitalizations within 30 days of distress screening, adjusted for covariates. RESULTS: Of the 1386 patients included in the analysis, 510 (36.8%) reported high distress on their first distress screening. Variables associated with high distress included younger age, presence of psychiatric diagnosis, poorer Eastern Cooperative Oncology Group performance status, and shorter duration from cancer diagnosis to distress screening. Patients with high distress were associated with higher odds of ED visits (adjusted odds ratio [OR] = 2.25, 95% confidence interval [CI]: 1.14-4.43) and hospitalizations (adjusted OR = 2.11, 95% CI: 1.27-3.50) within 30 days of distress screening. SIGNIFICANCE OF RESULTS: Self-reported high distress was associated with higher odds of increased acute health-care services utilization (ED visits and hospitalizations) in patients with breast and gynecological cancer. Identifying the subgroups at risk of high distress could trigger early interventions that reduce unplanned health-care services utilization and possibly health-care costs.
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BACKGROUND: The impact and consequences of cancer on the patients and their family caregivers (FCs) are closely intertwined. Caregivers' burdens can be increased due to the patients' unmet needs and unresolved problems. Additionally, the caregivers' unmet needs may adversely affect their own well-being and the patients' health outcomes. This study aims to determine the palliative care needs and the factors associated with these needs in patients with advanced solid cancer and their FCs. METHODS: In a cross-sectional survey, 599 patients with advanced solid tumours and 599 FCs were recruited from the largest ambulatory cancer centre and the inpatient ward of the largest hospital in Singapore. Determinants of patients' and FCs' needs were assessed by the Comprehensive Needs Assessment Tool (CNAT) and CNAT-C respectively. Clinical characteristics of patients were obtained from medical records. RESULTS: The FCs (median age 51 years) were younger than the patients (median age 62 years), and were mostly female (62.6%) whereas the gender distribution of patients was quite balanced (49.2% male and 50.8% female). Both patients and FCs had "information" and "practical support" in their top three domains of palliative care needs. The second highest domain of needs was "psychological problems" (16.4 ± 21.5) in patients and "health-care staff" (23.4 ± 26.5) in FCs. The item that had the highest need score in "information" domain for both patients and FCs was "financial support for patients, either from government and/ or private organizations". Under clinical setting, the inpatients (19.2 ± 16.4) and their FCs (26.0 ± 19.0) tend to have higher needs than the outpatients (10.5 ± 12.1) and their FCs (14.7 ± 14.3). In terms of palliative care, higher total CNAT score was observed in both patients (16.6 ± 12.9 versus 13.3 ± 15.2) and their FCs (25.1 ± 18.6 versus 17.7 ± 16.7) who received palliative care. In terms of patients' KPS scores, patients with lower KPS scores tend to have higher needs. CONCLUSION: Overall, the findings confirm that patients with advanced cancer and their FCs have many palliative care needs irrespective of their clinical settings. Initiatives and interventions for the development of a comprehensive support system for both patients with advanced cancer and their FCs are warranted and can be derived from these findings.
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Cuidadores/estatística & dados numéricos , Avaliação das Necessidades/estatística & dados numéricos , Neoplasias/terapia , Cuidados Paliativos/organização & administração , Adulto , Idoso , Estudos Transversais , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Estadiamento de Neoplasias , Neoplasias/diagnóstico , Neoplasias/patologia , Cuidados Paliativos/estatística & dados numéricos , Qualidade de Vida , Singapura , Inquéritos e QuestionáriosRESUMO
PURPOSE: Work-related issues among Asian adolescent and young-adult (AYA) cancer survivors are poorly described in the literature. There has also been a paucity of reports regarding insurance-related concerns in this patient population. Focus groups were therefore carried out in Singapore to understand survivorship issues related to work and insurance coverage among Asian AYA cancer survivors. METHODS: Twenty-three AYA survivors and 18 healthcare professionals (HCPs) who care for AYA cancer patients were recruited for 11 focus group sessions. Thematic content analysis was carried out to identify major themes that emerged. RESULTS: Similar themes emerged from AYA and HCP focus groups. The majority of AYA survivors were eager to return to work post-treatment. However, some survivors were worried about not keeping up with expectations and struggled with disclosure of their medical history. In contrast, several survivors leveraged on their experience with cancer to bolster job opportunities. Despite facing challenges due to complications from cancer and restrictions at work, AYA survivors preferred to be treated normally. AYA survivors also expressed concerns about inadequate insurance coverage and a lack of information on this topic. CONCLUSION: Contrary to expectations, Asian AYA survivors are motivated to return to work and address work-related challenges. Inadequate insurance coverage remains a pressing concern despite the availability of public health insurance and subsidies. Career coaches and financial counselors should be incorporated into survivorship care to aid AYA survivors.
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Sobreviventes de Câncer/psicologia , Sobreviventes de Câncer/estatística & dados numéricos , Seguro Saúde/estatística & dados numéricos , Neoplasias/psicologia , Retorno ao Trabalho/psicologia , Engajamento no Trabalho , Adolescente , Adulto , Povo Asiático , Feminino , Grupos Focais , Pessoal de Saúde/psicologia , Humanos , Masculino , Neoplasias/terapia , Pesquisa Qualitativa , Singapura , Sobrevivência , Adulto JovemRESUMO
AIMS: The 59-item Comprehensive Needs Assessment Tool (CNAT) for cancer patients is an English language survey developed in South Korea. The objective of this study was to validate the English version of CNAT in advanced cancer patients in Singapore. METHODS: This was a cross-sectional survey where advanced cancer patients completed the CNAT in English. Confirmatory factor analysis was used to assess construct validity. For known groups validity, independent samples t-test was used to compare CNAT scores based on the Karnofsky performance status and outpatient versus inpatient setting. Cronbach's alpha was used to measure internal consistency. RESULTS: A total of 328 advanced cancer patients were recruited. The mean age was 59.6 years and 49.1% were male. Majority (68.0%) were Chinese, 20.4% were Malay, 7.9% were Indian, and 3.7% were of other ethnicities. The 7-factor model previously established in Korea showed sufficient construct validity with root mean square error of approximation 0.037 and comparative fit index 0.944. All 59 items had a factor loading ≥0.5. Group invariance test showed no difference in the pattern of factor loadings between ethnic Chinese and other ethnic groups (P = 0.155). For known groups validity, there were significant differences in CNAT scores by performance status and outpatient versus inpatient setting. The CNAT total and factor scores showed good internal consistency with Cronbach's alpha of between 0.80 and 0.937. CONCLUSIONS: The CNAT showed construct and known-group validity and internal consistency in this study sample and can be used to assess the unmet needs of advanced cancer patients in the Singapore context.
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BACKGROUND: Advanced cancer significantly impacts quality of life of patients and families as they cope with symptom burden, treatment decision-making, uncertainty and costs of treatment. In Singapore, information about the experiences of advanced cancer patients and families and the financial cost they incur for end-of-life care is lacking. Understanding of this information is needed to inform practice and policy to ensure continuity and affordability of care at the end of life. The primary objectives of the Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS) cohort study are to describe changes in quality of life and to quantify healthcare utilization and costs of patients with advanced cancer at the end of life. Secondary objectives are to investigate patient and caregiver preferences for diagnostic and prognostic information, preferences for end-of-life care, caregiver burden and perceived quality of care and to explore how these change as illness progresses and finally to measure bereavement adjustment. The purpose of this paper is to present the COMPASS protocol in order to promote scientific transparency. METHODS: This cohort study recruits advanced cancer patients (n = 600) from outpatient medical oncology clinics at two public tertiary healthcare institutions in Singapore. Patients and their primary informal caregiver are surveyed every 3 months until patients' death; caregivers are followed until 6 months post patient death. Patient medical and billing records are obtained and merged with patient survey data. The treating medical oncologists of participating patients are surveyed to obtain their beliefs regarding care delivery for the patient. DISCUSSION: The study will allow combination of self-report, medical, and cost data from various sources to present a comprehensive picture of the end-of-life experience of advanced cancer patients in a unique Asian setting. This study is responsive to Singapore's National Strategy for Palliative Care which aims to identify opportunities to meet the growing need for high quality care for Singapore's aging population. Results will also be of interest to policy makers and researchers beyond Singapore who are interested to understand and improve the end-of-life experience of cancer patients. TRIAL REGISTRATION: NCT02850640 (Prospectively registered on June 9, 2016).
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Protocolos Clínicos , Estado Terminal/economia , Estado Terminal/epidemiologia , Custos de Cuidados de Saúde , Adulto , Idoso , Estado Terminal/psicologia , Gastos em Saúde , Conhecimentos, Atitudes e Prática em Saúde , Humanos , Pessoa de Meia-Idade , Aceitação pelo Paciente de Cuidados de Saúde , Vigilância em Saúde Pública , Qualidade de Vida , Índice de Gravidade de Doença , Singapura/epidemiologia , Estresse Psicológico , Adulto JovemRESUMO
OBJECTIVE: Physicians and nurses do not assess spirituality routinely, even though spiritual care is a vital part of palliative care for patients with an advanced serious illness. The aim of our study was to determine whether a training program for healthcare professionals on spirituality and the taking of a spiritual history would result in improved patient quality of life (QoL) and spiritual well-being. METHOD: This was a cluster-controlled trial of a spiritual care training program for palliative care doctors and nurses. Three of seven clinical teams (clusters) received the intervention, while the other four served as controls. Included patients were newly referred to the palliative care service, had an estimated survival of more than one month, and were aware of their diagnosis and prognosis. The primary outcome measure was the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being (FACIT-Sp) patient-reported questionnaire, which patients completed at two timepoints. Total FACIT-Sp score includes the Functional Assessment of Cancer Therapy-General (FACT-G) questionnaire, which measures overall quality of life, as well as a spiritual well-being score. RESULTS: Some 144 patients completed the FACIT-Sp at both timepoints-74 in the control group and 70 in the intervention group. The change in overall quality of life, measured by change in FACT-G scores, was 3.89 points (95% confidence interval [CI 95%] = -0.42 to 8.19, p = 0.076) higher in the intervention group than in the control group. The difference between the intervention and control groups in terms of change in spiritual well-being was 0.32 (CI 95% = -2.23 to 2.88, p = 0.804). SIGNIFICANCE OF RESULTS: A brief spiritual care training program can possibly help bring about enhanced improvement of global patient QoL, but the effect on patients' spiritual well-being was not as evident in our participants. Further study with larger sample sizes is needed to allow for more definite conclusions to be drawn.
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Pessoal de Saúde/educação , Cuidados Paliativos/métodos , Qualidade de Vida/psicologia , Espiritualidade , Ensino/normas , Idoso , Feminino , Agências de Assistência Domiciliar/organização & administração , Agências de Assistência Domiciliar/tendências , Humanos , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/tendências , Psicometria/instrumentação , Psicometria/métodos , Singapura , Inquéritos e Questionários , Ensino/tendênciasRESUMO
BACKGROUND: The prevalence of burnout, psychological morbidity and the use of coping mechanisms among palliative care practitioners in Singapore have not been studied. AIM: We aimed to study the prevalence of burnout and psychological morbidity among palliative care practitioners in Singapore and its associations with demographic and workplace factors as well as the use of coping mechanisms. DESIGN: This was a multi-centre, cross-sectional study of all the palliative care providers within the public healthcare sector in Singapore. SETTING/PARTICIPANTS: The study was conducted in hospital palliative care services, home hospice and inpatient hospices in Singapore. The participants were doctors, nurses and social workers. RESULTS: The prevalence of burnout among respondents in our study was 91 of 273 (33.3%) and psychological morbidity was 77 (28.2%). Working >60 h per week was significantly associated with burnout (odds ratio: 9.02, 95% confidence interval: 2.3-35.8, p = 0.002) and psychological morbidity (odds ratio: 7.21, 95% confidence interval: 1.8-28.8, p = 0.005). Home hospice care practitioners (41.5%) were more at risk of developing psychological morbidity compared to hospital-based palliative care (17.5%) or hospice inpatient care (26.0%) (p = 0.007). Coping mechanisms like physical well-being, clinical variety, setting boundaries, transcendental (meditation and quiet reflection), passion for one's work, realistic expectations, remembering patients and organisational activities were associated with less burnout. CONCLUSION: Our results reveal that burnout and psychological morbidity are significant in the palliative care community and demonstrate a need to look at managing long working hours and promoting the use of coping mechanisms to reduce burnout and psychological morbidity.
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Adaptação Psicológica , Esgotamento Profissional/epidemiologia , Esgotamento Profissional/psicologia , Cuidados Paliativos/estatística & dados numéricos , Adulto , Esgotamento Profissional/prevenção & controle , Estudos Transversais , Feminino , Cuidados Paliativos na Terminalidade da Vida/estatística & dados numéricos , Humanos , Satisfação no Emprego , Masculino , Pessoa de Meia-Idade , Cuidados Paliativos/psicologia , Estudos Prospectivos , Singapura/epidemiologia , Estresse Psicológico , Carga de TrabalhoRESUMO
BACKGROUND: Clinical trial evidence on the effect of palliative care models in reducing aggressive end-of-life care is inconclusive. We previously reported on an integrated inpatient palliative care and medical oncology co-rounding model that significantly reduced hospital bed-days and postulate additional effect on reducing care aggressiveness. OBJECTIVES: To compare the effect of a co-rounding model vs usual care in reducing receipt of aggressive treatment at end-of-life. METHODS: Secondary analysis of an open-label stepped-wedge cluster-randomized trial comparing two integrated palliative care models within the inpatient oncology setting. The co-rounding model involved pooling specialist palliative care and oncology into one team with daily review of admission issues, while usual care constituted discretionary specialist palliative care referrals by the oncology team. We compared odds of receiving aggressive care at end-of-life: acute healthcare utilization in last 30 days of life, death in hospital, and cancer treatment in last 14 days of life between patients in two trial arms. RESULTS: 2145 patients were included in the analysis, and 1803 patients died by 4th April 2021. Median overall survival was 4.90 (4.07 - 5.72) months in co-rounding and 3.75 (3.22 - 4.21) months in usual care, with no difference in survival (P = .12). We found no significant differences between both models with respect to receipt of aggressive care at end-of-life. (Odds Ratio .67 - 1.27; all P > .05). CONCLUSION: The co-rounding model within an inpatient setting did not reduce aggressiveness of care at end-of-life. This could be due in part to the overall focus on resolving episodic admission issues.
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Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Assistência Terminal/métodos , Oncologia , MorteRESUMO
CONTEXT: Patients with advanced cancer may experience symptoms and concerns that are inadequately identified by the healthcare team, leading to calls for patient-reported symptom monitoring. OBJECTIVES: Assess the feasibility of administering weekly patient-reported online Integrated Palliative care Outcome Scale (IPOS) questionnaires within the context of a stepped care model in the outpatient care setting. METHODS: Analysis of intervention group data in a randomized controlled trial to assess the effectiveness of a stepped care model of palliative care for patients with advanced cancer. Patients in the intervention group were invited to complete the IPOS weekly for 16 weeks through a remotely-administered online questionnaire. At the end of the 16-week period, patients were invited to complete a feedback survey. Multivariable logistic regression was used to assess factors associated with more versus less than 70% completion of weekly questionnaires. RESULTS: Among 111 patients who survived more than 16 weeks, the mean number of questionnaires completed was 9.2/16 (58%). A total of 53 out of the 111 patients (48%) completed more than 70% of the questionnaires. Higher education level was found to be associated with higher completion of the questionnaires. A total of 79 out of 111 (71%) patients responded to the feedback survey, of which 67 (85%) felt comfortable with completing the online questionnaire and 11 (14%) felt it was troublesome to complete it on a weekly basis. CONCLUSION: In our study, there was suboptimal completion of patient-reported IPOS questionnaire. Further research is needed to improve the uptake of patient-reported outcomes in real-world clinical settings.
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Estudos de Viabilidade , Neoplasias , Cuidados Paliativos , Humanos , Cuidados Paliativos/métodos , Masculino , Feminino , Pessoa de Meia-Idade , Idoso , Neoplasias/terapia , Medidas de Resultados Relatados pelo Paciente , Inquéritos e Questionários , Assistência Ambulatorial , AdultoRESUMO
PURPOSE: The Accessible Cancer Care to Enable Support for Cancer Survivors (ACCESS) program adopts a multidisciplinary supportive care model with routine distress screening to triage newly diagnosed cancer survivors for additional support on the basis of distress levels. This study aimed to evaluate the clinical impact of ACCESS over 1 year. METHODS: We performed cluster random assignment at the oncologist level in a 1:1 ratio to receive ACCESS or usual care. Participants 21 years and older, newly diagnosed with breast or gynecologic cancer, and receiving care at National Cancer Centre Singapore were included. Outcomes assessed every 3 months for 1 year included quality of life (QoL) (primary), functioning, physical and psychological symptom burden, and activity levels. Data were analyzed using mixed-effects models. RESULTS: Participants from 16 clusters (control = 90, intervention = 83) were analyzed. The ACCESS program did not significantly improve QoL (primary outcome). However, compared with usual care recipients, ACCESS recipients reported higher physical functioning (P = .017), role functioning (P = .001), and activity levels (P < .001) at 9 months and lower psychological distress (P = .025) at 12 months. ACCESS recipients screened with high distress had poorer QoL, lower role and social functioning, and higher physical symptom distress at 3 months but had comparable scores with ACCESS recipients without high distress after 12 months. CONCLUSION: Compared with usual care, participation in the ACCESS program did not yield QoL improvement but showed earlier functioning recovery related to activities of daily living and reduced psychological distress. Routine distress screening is a promising mechanism to identify survivors with poorer health for more intensive supportive care.
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Background: Low awareness about palliative care among the global public and healthcare communities has been frequently cited as a persistent barrier to palliative care acceptance. Given that knowledge shapes attitudes and encourages receptiveness, it is critical to examine factors that influence the motivation to increase knowledge. Health information-seeking from individuals and media has been identified as a key factor, as the process of accessing and interpreting information to enhance knowledge has been shown to positively impact health behaviours. Objective: Our study aimed to uncover public sentiments toward palliative care in Singapore. A conceptual framework was additionally developed to investigate the relationship between information-seeking preferences and knowledge, attitudes, receptiveness of palliative care, and comfort in death discussion. Design and Methods: A nationwide survey was conducted in Singapore with 1226 respondents aged 21 years and above. The data were analysed through a series of hierarchical multiple regression to examine the hypothesised role of information-seeking sources as predictors. Results: Our findings revealed that 53% of our participants were aware of palliative care and about 48% were receptive to receiving the care for themselves. It further showed that while information-seeking from individuals and media increases knowledge, attitudes and receptiveness to palliative care, the comfort level in death conversations was found to be positively associated only with individuals, especially healthcare professionals. Conclusion: Our findings highlight the need for public health authorities to recognize people's deep-seated beliefs and superstitions surrounding the concept of mortality. As Asians view death as a taboo topic that is to be avoided at all costs, it is necessary to adopt multipronged communication programs to address those fears. It is only when the larger communicative environment is driven by the media to encourage public discourse, and concurrently supported by timely interventions to trigger crucial conversations on end-of-life issues between individuals, their loved ones, and the healthcare team, can we advance awareness and benefits of palliative care among the public in Singapore.
A nationwide survey to understand public sentiments and the extent that information-seeking preferences can increase knowledge, attitudes, receptiveness of palliative care, and comfort level in death discussion in Singapore Low awareness of palliative care is a barrier that persistently hinders palliative care acceptance among populations in developing and developed countries. As knowledge shapes attitudes and encourages receptiveness, it is vital that researchers uncover factors that influence the motivation to increase knowledge. Health information-seeking is a factor that deserves greater attention in palliative care research because the process of seeking out information on health concerns from other people or the media can greatly increase individuals' knowledge. As such, this nationwide survey involving 1226 participants was carried out in Singapore to understand the public sentiments toward palliative care. It further statistically analyzed if information-seeking (from individuals and the media) will increase knowledge, attitudes, receptiveness toward palliative care, and comfort level in death discussion. Our findings indicated that 53% of our participants were aware of palliative care and about 48% were receptive to receiving the care for themselves. Furthermore, while information-seeking from individuals and media increases knowledge, attitudes, and receptiveness to palliative care, people are only comfortable to engage in death discussion with individuals, especially healthcare professionals. Exposure to media alone is not enough to encourage individuals to want to talk about end-of-life issues including palliative care. As Asians view death as a taboo topic, it is important for public health authorities to recognize people's deep-seated beliefs and superstitions surrounding the concept of mortality. A multipronged communication program is therefore needed to address these fears. It is only when the larger communicative environment driven by the media to encourage public discourse, and concurrently supported by timely interventions to trigger crucial conversations on end-of-life issues between individuals, their loved ones, and the healthcare team, can we advance awareness and benefits of palliative care among the public in Singapore.
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Introduction: Supportive care models considering inclusivity and community services to improve integrated care for cancer survivors are limited. In this case study, we described the implementation of a multidisciplinary care model employing routine distress screening and embedded integrated care pathways to integrate care across disciplines and care sectors, while remaining inclusive of the multi-ethnic and multilingual population in Singapore. We reported implementation outcomes after 18 months of implementation. Description: We reviewed the model's process indicators from September 2019 to February 2021 at the largest public ambulatory cancer centre. Outcomes assessed included penetration, fidelity to screening protocol, and feasibility in three aspects - inclusiveness of different ethnic and language groups, responsiveness to survivors reporting high distress, and types of community service referrals. Discussion/conclusion: We elucidated opportunities to promote access to community services and inclusivity. Integration of community services from tertiary settings should be systematic through mutually beneficial educational and outreach initiatives, complemented by their inclusion in integrated care pathways to encourage systematic referrals and care coordination. A hybrid approach to service delivery is crucial in ensuring inclusivity while providing flexibility towards external changes such as the COVID-19 pandemic. Future work should explore using telehealth to bolster inclusiveness and advance community care integration.
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Purpose: With an increasing focus on developing survivorship services tailored for adolescent and young adult (AYA) cancer survivors, incorporation of viewpoints from both survivors and health care professionals (HCPs) is important. This study aims to explore the perceptions of current and prospective survivorship services from both groups in Singapore to propose service design and delivery strategies. Methods: Focus group discussions with 23 AYA cancer survivors between the ages of 16 and 39 years at diagnosis and 18 HCPs were conducted in National Cancer Centre Singapore (NCCS) and Singapore Cancer Society (SCS). All focus group discussions were transcribed verbatim. Deductive thematic analysis was performed according to the components of a design thinking model: empathizing with AYA survivors, defining care gaps, proposing services, and implementation strategies. Results: AYA survivors preferred age-specific services that are aligned with their personal goals. Current survivorship care failed to address the needs of survivors' dependents (caregivers and children) and to consider the utility of each service temporally. Prospective services should clarify disease disclosure obligation in job search and introduce a care navigator. Key implementation strategies included (1) training HCPs on communication techniques with AYA, (2) selecting engagement platforms that complement survivors' information-seeking behavior, (3) improving outreach to survivors through appropriate branding and publicity, and (4) consolidating services from multiple providers. Conclusions: The design of survivorship care services for AYA survivors should be systematic in its conceptualization process and employ implementation strategies. The coordination of the wide spectrum of services warrants a concerted effort by cancer centers, community partners, and the government.
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Sobreviventes de Câncer/psicologia , Sobrevivência , Adolescente , Adulto , Povo Asiático , Feminino , Grupos Focais , Humanos , Masculino , Pesquisa Qualitativa , Adulto JovemRESUMO
Facing the possibility of a surge of COVID-19-infected patients requiring ventilatory support in Intensive Care Units (ICU), the Singapore Hospice Council and the Chapter of Palliative Medicine Physicians forward its position on the guiding principles that ought to drive the allocation of ICU beds and its role in care of these patients and their families.
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BACKGROUND: Family caregivers of patients with advanced cancer have been reported to provide long hours of care and be at risk for poor psychological outcomes. Although research has focused on the nature of caregiving burden, little attention has been paid to identifying protective factors that improve caregiver psychological outcomes. AIM: We examined the relationship between caregivers' time spent caregiving and the following psychological outcomes: anxiety, depression and caregiving esteem. Subsequently, we explored the main and moderating effects of caregiver-perceived self-competency and sense of meaning on caregiver psychological outcomes. DESIGN/PARTICIPANTS: Cross-sectional analysis was conducted using the baseline data from an ongoing cohort study. Family caregivers of advanced cancer patients (n=287) were recruited from two tertiary hospitals in Singapore. RESULTS: Time spent caregiving was not significantly associated with caregiver anxiety, depression or caregiving esteem. However, significant main effects of self-competency on anxiety and caregiving esteem; and sense of meaning on anxiety, depression and caregiving esteem were observed. Moderator analyses further indicated that self-competency attenuated the positive relationship between time spent caregiving and anxiety, while sense of meaning attenuated the negative relationship between time spent caregiving and caregiving esteem. CONCLUSION: Greater perceived self-competency and sense of meaning are related to better caregiver psychological outcomes, and protect caregivers from worsening outcomes as caregiving hours increase. Our findings suggest that screening caregivers for distress is an important part of care, and that supportive interventions for caregivers should aim to enhance their perceived caregiving competencies and the ability to make meaning of their caregiving role.
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Cuidadores/psicologia , Competência Clínica , Neoplasias/terapia , Autoimagem , Adulto , Idoso , Ansiedade/etiologia , Estudos Transversais , Depressão/psicologia , Feminino , Humanos , Masculino , Pessoa de Meia-Idade , Singapura , Apoio Social , Adulto JovemRESUMO
The COVID-19 pandemic has disrupted current models of healthcare and adaptations will likely continue. With the gradual easing of lockdown measures worldwide, cancer centres must be prepared to implement novel means to prevent repeated waves of infection. There are two limitations unique to oncology - a higher susceptibility of patients to COVID-19 and the multidisciplinary approach required of cancer management. We describe the measures implemented in the largest cancer centre in Singapore to continue optimal cancer care in spite of the ongoing pandemic, with no nosocomial infections reported in our centre to date. We adopted a multipronged approach, with an overall committee supervising the entire COVID-19 management effort. A screening clinic was setup to triage patients prior to entry to the centre. Each Oncology Division within the cancer centre designed solutions tailored to the specific needs of their discipline. We explore in detail the screening criteria and workflow of the screening clinic, as well as modifications by individual divisions to reduce infection risk to patients and healthcare professionals. This approach can be modelled by other cancer centres during this prolonged COVID-19 pandemic.
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Informal caregivers (IC) are key to enabling home deaths, where preferred, at the end-of-life. Significant morbidity from advanced cancer can make caregiving burdensome. However, knowledge about the nature of the caregiving burden for caregivers in Singapore is limited. Hence, the key objective in this study was to examine the impact of the caregiving burden on quality of life (QOL), mental health and work capacity among local ICs. Eligible English-speaking ICs of hospitalized advanced cancer patients were recruited through non-random sampling. The Zarit Burden Interview (ZBI), Caregiver Quality of Life Index-Cancer (CQOLC), Center for Epidemiologic Studies Depression Scale-Revised (CESD-R), and Work Productivity and Activity Impairment Questionnaire (WPAI) were interviewer-administered to eligible ICs. Altogether, 16 ICs were surveyed. The mean age of ICs was 43.8 years. Most were children of patients (43.8%), and eight ICs had high burden (ZBI > 17). Those with ZBI > 17 had lower QOL, higher depression scores as well as greater work and activity impairment. In conclusion, high caregiver burden has adverse effects on QOL, mental health and work productivity. Non-physical elements of caregiving (particularly financial and decision-making) and increased number of care roles undertaken by a single IC contribute to high burden. Future interventions for caregiving burden in Singapore should also address the financial and decision-making aspects of caregiving. Outsourcing selected aspects of the caregiving role to community services may reduce the number of caregiving aspects undertaken by a single IC and caregiver burden.
RESUMO
BACKGROUND: Early referral to palliative care (PC) services has been shown to improve quality of life in advanced cancer. However, limitations in trained PC workforce raise issues with the sustainability of delivering PC with early PC referral. Classifying PC into generalist and specialist components could be one approach to sustainable PC delivery models but a quantitative guide for this classification is presently lacking in the literature. OBJECTIVE: To undertake a retrospective examination of clinical data obtained from a PC benchmarking project to develop a quantitative framework guiding classification of PC services into specialist and generalist components. DESIGN: A descriptive retrospective study of data from 2726 hospitalized inpatients under the care of a tertiary consultative PC service over a 2-year period was conducted. Daily categorical symptom, overall psychological and social distress scores at the start and end of 3392 palliative care episodes as well as the number of visits made by the PC team to patients were extracted for analysis. RESULTS: More than 50% of patients had symptom, overall psychological or social distress scores of nil or mild severity at episode start and end. Approximately 20% of all 2726 patients accounted for approximately half of all visits made by the team regardless of the reasons for review. This patient percentage minority had more PC episodes starting with moderate or severe pain. These findings suggest a Pareto-like distribution in the occurrence of moderate/severe PC problems and the intensity of PC input. CONCLUSIONS: Large-scale clinical data supports the use of a Pareto-based quantitative framework for a workforce comprising of mainly generalist PC staff supported by smaller numbers of PC specialists.