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1.
BMC Palliat Care ; 23(1): 29, 2024 Jan 30.
Artigo em Inglês | MEDLINE | ID: mdl-38287335

RESUMO

BACKGROUND: Specialist palliative care is often provided late in the patient's disease trajectory in response to uncontrolled symptoms. Shifting from this reactionary illness-stress paradigm to a proactive health-wellness approach, the ENABLE (Educate, Nurture, Advise, Before Life Ends) telehealth model aims to enhance the coping, stress and symptom management, self-care, and advance care planning skills of patients with advanced cancers and their caregivers. The ENABLE model has been culturally adapted to Singapore (ENABLE-SG) and pilot-tested. A hybrid type 1 effectiveness-implementation design will be used to evaluate the effectiveness of ENABLE-SG while collecting real-world implementation data. METHODS: This single-centre, assessor-blind, wait-list (immediately vs. 6 months) randomized controlled trial will recruit 300 adult patients within 60 days of an advanced cancer diagnosis and their family caregivers from the National Cancer Centre of Singapore. ENABLE-SG comprises structured psychoeducational sessions with a telehealth coach, covering essential topics of early palliative care. Participants will be assessed at baseline and every 3 months until patient's death, 12 months (caregivers), or end of study (patients). The primary outcome is patient quality of life 6 months after baseline. Secondary patient-reported outcomes include mood, coping, palliative care concerns, and health status. Secondary caregiver-reported outcomes include caregiver quality of life, mood, coping, and care satisfaction. Mixed-effects regression modelling for repeated measurements will be used. To assess the effectiveness of ENABLE-SG versus usual care, patient and caregiver outcomes at 6 months will be compared. To compare earlier versus delayed ENABLE-SG, patient and caregiver outcomes at 12 months will be compared. Within the hybrid type 1 effectiveness-implementation design, implementation outcomes will be evaluated in both the early and delayed groups. Acceptability, adoption, appropriateness, and feasibility will be assessed using a feedback survey and semi-structured interviews with a purposive sample of patients, caregivers, and healthcare providers. Transcribed interviews will be analysed thematically. Other implementation outcomes of penetration, fidelity, and cost will be assessed using records of study-related processes and summarized using descriptive statistics. A cost-effectiveness analysis will also be conducted. DISCUSSION: This study will assess both effectiveness and implementation of ENABLE-SG. Insights into implementation processes can facilitate model expansion and upscaling. TRIAL REGISTRATION: Registered prospectively on ClinicalTrials.gov, NCT06044441. Registered on 21/09/2023.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Assistência Terminal , Adulto , Humanos , Cuidados Paliativos/métodos , Qualidade de Vida , Singapura , Assistência Terminal/métodos , Neoplasias/terapia , Cuidadores , Ensaios Clínicos Controlados Aleatórios como Assunto
2.
BMC Palliat Care ; 23(1): 124, 2024 May 20.
Artigo em Inglês | MEDLINE | ID: mdl-38769564

RESUMO

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.


Assuntos
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/tendências
3.
Palliat Support Care ; : 1-7, 2024 Mar 14.
Artigo em Inglês | MEDLINE | ID: mdl-38482857

RESUMO

OBJECTIVE: The main objective was to pilot the culturally adapted "Educate, Nurture, Advise, Before Life Ends" for Singapore (ENABLE-SG) model to evaluate its feasibility and potential effectiveness. METHODS: A single-arm pilot trial of ENABLE-SG among patients with advanced solid tumors and caregivers of these patients was conducted in the outpatient oncology clinic setting. Enrolled participants participated in individual ENABLE-SG psychoeducational sessions weekly. Patients had 6 sessions on the topics of maintaining positivity, self-care, coping with stress, managing symptoms, exploring what matters most and life review. Caregivers had 4 sessions on the topics of maintaining positivity, self-care, coping with stress and managing symptoms. At baseline, 4, 8, and 12 months after enrolment, patient's quality of life was measured using the Functional Assessment of Chronic Illness Therapy - Palliative Care, patient's mood was measured using the Center for Epidemiologic Studies - Depression scale, and caregiver quality of life was measured using the Singapore Caregiver Quality of Life Scale. RESULTS: We enrolled 43 patients and 15 caregivers over a 10-month period from August 2021 to June 2022. Although there was a low approach-to-participation rate, most of those who enrolled completed all ENABLE-SG sessions - 72% for patients and 94% for caregivers. Caregivers had better quality of life over time, specifically in the subscales of mental well-being and experience-meaning. SIGNIFICANCE OF RESULTS: Based on findings from this study, we are planning a randomized waitlist-controlled trial of ENABLE-SG for patients with advanced cancer and their caregivers.

4.
Palliat Support Care ; : 1-8, 2024 Feb 01.
Artigo em Inglês | MEDLINE | ID: mdl-38299377

RESUMO

OBJECTIVES: Patients with terminal cancer receiving home palliative care present differential healthcare utilization trajectories before death. It remains unclear which situational elements influence these trajectories among disparate patient groups. The aim of this study was to compare situational influences on "persistently high" and "low stable" trajectories of healthcare utilization in patients who received palliative care support at home. METHODS: Bereaved family caregivers were recruited from our prior quantitative study investigating healthcare utilization trajectories in oncology patients on home-based palliative care. In-depth interviews were conducted with 30 family caregivers. Data were analyzed using thematic analysis. RESULTS: Analysis of data uncovered how the 2 utilization trajectories were influenced by the interplay of 1 or more of 4 situational elements. Perceived symptom control in patients, influenced by their determination to die at home, shapes the susceptibility to situational contingencies, resulting in differential utilization trajectories. Caregivers' mental readiness in dealing with unexpected circumstances has a significant impact on the overall manageability of care, ultimately affecting decisions related to healthcare utilization. The concordance between symptom needs and scope of homecare services in a given situation proves to be an important determinant. Lastly, perceived accessibility to informal support in times of need acts as a contextual reinforcement, either preventing or precipitating decisions regarding healthcare utilizations. SIGNIFICANCE OF RESULTS: Our findings hold important implications for the provision of homecare services, in particular, the need for comprehensive assessment of end-of-life wishes during homecare enrolment and strengthening psychological preparedness of caregivers. Expansion of home-based clinical interventions tailored to high utilizers, and funding for temporary in-home respite should be considered to optimally manage potentially preventable acute healthcare utilization.

5.
Palliat Support Care ; : 1-7, 2024 Mar 07.
Artigo em Inglês | MEDLINE | ID: mdl-38450453

RESUMO

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.

6.
Palliat Med ; 37(2): 257-264, 2023 02.
Artigo em Inglês | MEDLINE | ID: mdl-36476098

RESUMO

BACKGROUND: Persons with advanced cancer may participate in Phase 1 clinical trials - first-in-human trials that are conducted with the main objectives of safety and dosing. The motivations for participation are not well understood and may include hope for cure. AIM: To explore the perspectives of persons with advanced cancer in order to understand the motivations for participating in Phase 1 clinical trials, experiences while being on trial and views on palliative care provision. DESIGN: Qualitative study with a constructivist stance, using thematic analysis based upon the grounded theory approach. SETTING/PARTICIPANTS: 20 persons with advanced cancer who were participating in a Phase 1 clinical trial. RESULTS: Many participants described how Phase 1 clinical trial participation was their last hope, as they were cognisant of their advanced disease. Information-seeking needs differed - some needed comprehensive information while others relied on the doctor's recommendation. Participants experienced varied negative and positive physical and psycho-emotional concerns, and needed to draw on multiple sources of support such as family, friends and healthcare professionals. Some could list potential benefits of palliative care but felt they did not require it yet. The overarching theme was hope and positive thinking as a way of coping. CONCLUSIONS: The concepts of hope as a way of coping and the supportive presence of healthcare professionals could be weaved into a future model of palliative care to improve the illness journey for patients considering Phase 1 clinical trial participation and other persons with advanced cancer.


Assuntos
Motivação , Neoplasias , Humanos , Pesquisa Qualitativa , Neoplasias/terapia , Neoplasias/psicologia , Cuidados Paliativos/psicologia , Pessoal de Saúde
7.
Palliat Support Care ; : 1-8, 2023 Jan 09.
Artigo em Inglês | MEDLINE | ID: mdl-36622079

RESUMO

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.

8.
BMC Med ; 20(1): 313, 2022 09 22.
Artigo em Inglês | MEDLINE | ID: mdl-36131339

RESUMO

BACKGROUND: Home-based palliative care (HPC) is considered to moderate the problem of rising healthcare utilization of cancer patients at end-of-life. Reports however suggest a proportion of HPC patients continue to experience high care intensity. Little is known about differential trajectories of healthcare utilization in patients on HPC. Thus, we aimed to uncover the heterogeneity of healthcare utilization trajectories in HPC patients and identify predictors of each utilization pattern. METHODS: This is a cohort study of adult cancer patients referred by Singapore Health Services to HCA Hospice Service who died between 1st January 2018 and 31st March 2020. We used patient-level data to capture predisposing, enabling, and need factors for healthcare utilization. Group-based multi-trajectory modelling was applied to identify trajectories for healthcare utilization based on the composite outcome of emergency department (ED) visits, hospitalization, and outpatient visits. RESULTS: A total of 1572 cancer patients received HPC (median age, 71 years; interquartile range, 62-80 years; 51.1% female). We found three distinct trajectory groups: group 1 (31.9% of cohort) with persistently low frequencies of healthcare utilization, group 2 (44.1%) with persistently high frequencies, and group 3 (24.0%) that begin with moderate frequencies, which dropped over the next 9 months before increasing in the last 3 months. Predisposing (age, advance care plan completion, and care preferences), enabling (no medical subsidy, primary decision maker), and need factors (cancer type, comorbidity burden and performance status) were significantly associated with group membership. High symptom needs increased ED visits and hospitalizations in all three groups (ED visits, group 1-3: incidence rate ratio [IRR] 1.74-6.85; hospitalizations, group 1-3: IRR 1.69-6.60). High home visit intensity reduced outpatient visits in all three groups (group 1-3 IRR 0.54-0.84), while it contributed to reduction of ED visits (IRR 0.40; 95% CI 0.25-0.62) and hospitalizations (IRR 0.37; 95% CI 0.24-0.58) in group 2. CONCLUSIONS: This study on HPC patients highlights three healthcare utilization trajectories with implications for targeted interventions. Future efforts could include improving advance care plan completion, supporting care preferences in the community, proactive interventions among symptomatic high-risk patients, and stratification of home visit intensity.


Assuntos
Neoplasias , Cuidados Paliativos , Adulto , Idoso , Estudos de Coortes , Serviço Hospitalar de Emergência , Feminino , Hospitalização , Humanos , Masculino , Neoplasias/epidemiologia , Neoplasias/terapia , Aceitação pelo Paciente de Cuidados de Saúde , Estudos Retrospectivos , Singapura/epidemiologia
9.
Stat Med ; 41(15): 2923-2938, 2022 07 10.
Artigo em Inglês | MEDLINE | ID: mdl-35352382

RESUMO

Stepped-wedge cluster randomized trials (SW-CRTs) are typically analyzed using mixed effects models. The fixed effects model is a useful alternative that controls for all time-invariant cluster-level confounders and has proper control of type I error when the number of clusters is small. In principle, all clusters in SW-CRTs are designed to eventually receive the intervention, but in real-world research, some trials can end with unexposed clusters (clusters that never received the intervention), such as when a trial is terminated early based on interim analysis results. Typically, unexposed clusters are expected to contribute no information to the fixed effects intervention effect estimator and are excluded from fixed effects analyses. In this article we mathematically prove that inclusion of unexposed clusters improves the precision of the fixed effects least squares dummy variable (LSDV) intervention effect estimator, re-analyze data from a recent SW-CRT of a novel palliative care intervention containing an unexposed cluster, and evaluate the methods by simulation. We found that including unexposed clusters improves the precision of the fixed effects LSDV intervention effect estimator in both real and simulated datasets. Our simulations also reveal an increase in power and decrease in root mean square error. These improvements are present even if the assumptions of constant residual variance and period effects are violated. In the case that a SW-CRT concludes with unexposed clusters, these unexposed clusters can be included in the fixed effects LSDV analysis to improve precision, power, and root mean square error.


Assuntos
Projetos de Pesquisa , Análise por Conglomerados , Simulação por Computador , Humanos , Análise dos Mínimos Quadrados , Ensaios Clínicos Controlados Aleatórios como Assunto , Tamanho da Amostra
10.
BMC Palliat Care ; 20(1): 40, 2021 Mar 09.
Artigo em Inglês | MEDLINE | ID: mdl-33750367

RESUMO

CONTEXT: Measurement of patient-centred outcomes enables clinicians to focus on patient and family priorities and enables quality of palliative care to be assessed. OBJECTIVES: This study aimed to evaluate the validity and reliability of the English and translated Chinese versions of the Integrated Palliative care Outcome Scale (IPOS) among advanced cancer patients in Singapore. METHODS: IPOS was forward and backward translated from English into Chinese. Structural validity was assessed by confirmatory factor analysis; known-group validity by comparing inpatients and community patients; construct validity by correlating IPOS with Edmonton Symptom Assessment System-revised (ESAS-r) and Functional Assessment of Cancer Therapy-General (FACT-G); internal consistency by Cronbach's alpha; inter-rater reliability between patient and staff responses; test-retest reliability of patient responses between two timepoints. RESULTS: One hundred eleven English-responding and 109 Chinese-responding patients participated. The three-factor structure (Physical Symptoms, Emotional Symptoms and Communication and Practical Issues) was confirmed with Comparative Fit Index and Tucker-Lewis-Index > 0.9 and Root Mean Square Error of Approximation < 0.08. Inpatients scored higher than outpatients as hypothesised. Construct validity (Pearson's correlation coefficient, r ≥ |0.608|) was shown between the related subscales of IPOS and FACT-G and ESAS-r. Internal consistency was confirmed for total and subscale scores (Cronbach's alpha≥0.84), except for the Communication and Practical Issues subscale (Cronbach's alpha = 0.29-0.65). Inter-rater reliability (Intra-class correlation coefficient [ICC] ≤ 0.43) between patient and staff responses was insufficient. Test-retest reliability was confirmed with Intra-class correlation coefficient ICC = 0.80 (English) and 0.88 (Chinese) for IPOS Total. CONCLUSION: IPOS in English and Chinese showed good validity, good internal consistency, and good test-retest reliability, except for the Communication and Practical Issues subscale. There was poor inter-rater reliability between patients and staff.


Assuntos
Cuidados Paliativos , China , Humanos , Psicometria , Reprodutibilidade dos Testes , Singapura , Inquéritos e Questionários
11.
BMC Palliat Care ; 20(1): 86, 2021 Jun 22.
Artigo em Inglês | MEDLINE | ID: mdl-34158022

RESUMO

BACKGROUND: ENABLE (Educate, Nurture, Advise, Before Life Ends) is a nurse coach-led, early palliative care model for patients with advanced cancer and their family caregivers. Content covered includes problem-solving, advance care planning, symptom management and self-care. The aim was to evaluate the cultural acceptability of ENABLE among patients with advanced cancer and their caregivers in Singapore and identify modifications for an adapted ENABLE-SG model. METHODS: Qualitative formative evaluation with a thematic analysis approach in two hospitals in Singapore, involving patients (n = 10), family caregivers (n = 11) and healthcare professionals (n = 10) who care for patients with advanced cancer. Semi-structured interviews were conducted to explore (i) the main needs and challenges facing individuals with advanced cancer and their family caregivers; (ii) patient involvement in healthcare decision making; and (iii) content and delivery of ENABLE. RESULTS: While physical needs were largely well met, participants expressed that psychosocial care was delivered too late in the illness trajectory. Healthcare decision making approaches varied from a patient-centred shared decision-making model to a family-centred model where patients may not know their cancer diagnosis and prognosis. The content was considered to be relevant, comprehensive and practical; financial assistance, adjustment to body image, and evaluation of complementary therapy were also recommended. Face-to-face rather than telephone sessions were preferred to facilitate rapport building. CONCLUSIONS: ENABLE was broadly acceptable with some modifications, including adjusting the content to ensure it can be delivered even if the patient is not fully aware of cancer diagnosis and delivering the first session face-to-face with flexibility for subsequent sessions.


Assuntos
Enfermagem de Cuidados Paliativos na Terminalidade da Vida , Neoplasias , Cuidadores , Humanos , Neoplasias/terapia , Cuidados Paliativos , Pesquisa Qualitativa , Singapura
12.
BMC Cancer ; 20(1): 768, 2020 Aug 15.
Artigo em Inglês | MEDLINE | ID: mdl-32799834

RESUMO

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.


Assuntos
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 Questionários
13.
Psychooncology ; 29(2): 389-397, 2020 02.
Artigo em Inglês | MEDLINE | ID: mdl-31703146

RESUMO

OBJECTIVE: Advanced breast cancer patients around the world experience high symptom burden (ie, distress, pain, and fatigue) and are in need of psychosocial interventions that target symptom management. This study examined the feasibility, acceptability, and engagement of a psychosocial intervention that uses cognitive-behavioral strategies along with mindfulness and values-based activity to enhance patients' ability to manage symptoms of advanced disease in a cross-cultural setting (United States and Singapore). Pre-treatment to post-treatment outcomes for distress, pain, and fatigue were compared between intervention recipients and waitlisted controls. METHODS: A pilot randomized controlled trial included women with advanced breast cancer (N = 85) that were recruited in the United States and Singapore. Participants either received the four session intervention or be put on waitlist. Descriptive statistics and effect size of symptom change were calculated. RESULTS: The psychosocial intervention was found to be feasible as indicated through successful trial accrual, low study attrition (15% ), and high intervention adherence (77% completed all sessions). Acceptability (ie, program satisfaction and cultural sensitivity) and engagement to the study intervention (ie, practice of skills taught) were also high. Anxiety, depression, and fatigue scores remained stable or improved among intervention participants while the same symptoms worsened in the control group. In general, effect sizes are larger in the US sample compared with the Singapore sample. CONCLUSIONS: The cognitive-behavioral, mindfulness, and values-based intervention is feasible, acceptable, and engaging for advanced breast cancer patients in a cross-cultural setting and has potential for efficacy. Further larger-scaled study of intervention efficacy is warranted.


Assuntos
Neoplasias da Mama/psicologia , Depressão/prevenção & controle , Fadiga/prevenção & controle , Atenção Plena , Cuidados Paliativos/psicologia , Autoeficácia , Adulto , Ansiedade/psicologia , Neoplasias da Mama/terapia , Depressão/psicologia , Fadiga/psicologia , Feminino , Humanos , Pessoa de Meia-Idade , Autocuidado/psicologia , Índice de Gravidade de Doença , Singapura , Resultado do Tratamento , Estados Unidos
14.
Indian J Palliat Care ; 25(3): 374-378, 2019.
Artigo em Inglês | MEDLINE | ID: mdl-31413451

RESUMO

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.

15.
BMC Cancer ; 18(1): 459, 2018 04 23.
Artigo em Inglês | MEDLINE | ID: mdl-29688843

RESUMO

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).


Assuntos
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 Jovem
16.
Palliat Support Care ; 15(4): 434-443, 2017 08.
Artigo em Inglês | MEDLINE | ID: mdl-27894377

RESUMO

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.


Assuntos
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/tendências
17.
Am J Hosp Palliat Care ; 41(4): 442-451, 2024 Apr.
Artigo em Inglês | MEDLINE | ID: mdl-37246153

RESUMO

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.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Assistência Terminal , Humanos , Cuidados Paliativos/métodos , Assistência Terminal/métodos , Oncologia , Morte
18.
Artigo em Inglês | MEDLINE | ID: mdl-38878909

RESUMO

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.

19.
JCO Oncol Pract ; : OP2300505, 2024 Jun 05.
Artigo em Inglês | MEDLINE | ID: mdl-38838278

RESUMO

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.

20.
BMJ Support Palliat Care ; 13(e1): e59-e62, 2023 Oct.
Artigo em Inglês | MEDLINE | ID: mdl-33355170

RESUMO

BACKGROUND: Compared with the current inpatient consultation model, a novel corounding model of care whereby palliative specialists round with oncology teams, increases healthcare collaboration and may improve quality of care for inpatients. Whether this translates to better pain control for patients is unexplored. OBJECTIVE: To determine whether the corounding model provides better pain control compared with the consultation model for cancer inpatients. METHODS: Cancer patients with moderate or severe pain severity during the admission were included in this observational study. Pain severity was determined using electronic records. Improvement to mild or no pain by day 3 of identification of moderate or severe pain was defined as good pain control and proportion of admissions achieving this was compared between models. RESULTS: A total of 142 and 128 admissions admitted under the consult and corounding model, respectively, had moderate or severe pain. The proportion of patients that achieved good pain control was 77.3% (99/128) and 71.8% (102/142) in the corounding and consult model, respectively. The difference in proportion of admissions achieving good pain control was significantly higher in the corounding model after adjusting for differences in baseline characteristics (unadjusted OR, 1.34; 95% CI, 0.77 to 2.33; adjusted OR, 2.25; 95% CI, 1.19 to 4.26). DISCUSSION: The odds of achieving good pain control was significantly better in the corounding model. However, the mechanism behind this is unexplored. This study can serve as precedence for future studies evaluating the corounding model of care.


Assuntos
Neoplasias , Cuidados Paliativos , Humanos , Pacientes Internados , Dor , Encaminhamento e Consulta
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