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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 , Enfermedad Crítica/economía , Enfermedad Crítica/epidemiología , Costos de la Atención en Salud , Adulto , Anciano , Enfermedad Crítica/psicología , Gastos en Salud , Conocimientos, Actitudes y Práctica en Salud , Humanos , Persona de Mediana Edad , Aceptación de la Atención de Salud , Vigilancia en Salud Pública , Calidad de Vida , Índice de Severidad de la Enfermedad , Singapur/epidemiología , Estrés Psicológico , Adulto JovenRESUMEN
Background: The Serious Illness Conversation Guide (SICG) was developed by Ariadne Labs in the United States. However, there is a scarcity of literature on the cross-cultural adaptations of the SICG in Asian settings. Objectives: We aimed to adapt the SICG for English-speaking patients with serious illnesses in Singapore. Methods: We purposively recruited 28 patients with advanced stages of heart failure, renal failure, or cancer from a tertiary hospital. A designated research team member conducted semistructured interviews to obtain participants' feedback on the SICG. The interviews were transcribed by the designated study team member. Participants' response to each item on the SICG was coded quantitatively into categories to denote participant acceptance, partial acceptance, or nonacceptance. Transcripts were further analyzed using content analysis to understand participants' rationale regarding feedback of the specific SICG item. Modifications to the SICG were iteratively made over time to obtain its current version. Results: Participants indicated a preference for direct language with shorter sentences and inclusive pronouns. It was considered important that clinicians keep the conversation hopeful, individualize the conversation content according to the patient's journey, and use prompts where necessary to support the patient's elaboration. Conclusion: This study outlined a patient-centric approach to localizing the SICG in the English language to a new cultural context, marking the first such effort in an Asian setting. Further study is under way to evaluate the SICG in more disease populations and non-English languages used in Singapore.
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BACKGROUND: Renal replacement therapy (RRT) has not always been shown to benefit end-stage renal failure patients who are elderly or have multiple comorbidities in terms of survival or symptom control. Conservative management may be a viable alternative offering comparable health-related quality of life. METHODS: This is a prospective observational study of 101 patients who reached an estimated glomerular filtration rate of 8-12 ml/min and were either ≥75 years old or had an age-adjusted Charlson Comorbidity Index ≥8. Patients were all initially on conservative management; 38 later commenced renal replacement therapy while the rest remained conservatively managed. The Kidney Disease Quality of Life-Short Form was assessed at baseline and various scheduled time points over 24 months. The mixed model methodology was used to estimate the quality of life patterns and adjust for covariates. RESULTS: In the conservative management group, the Physical Component Summary and Mental Component Summary scores were stable and showed no significantly different trajectories from the RRT group (both p > 0.05). Though RRT was associated with an improvement in the Cognitive Function Scale score, it was also associated with worse scores on the Effect of Kidney Disease and Burden of Kidney Disease Scale scores. CONCLUSIONS: RRT does not improve health-related quality of life of end-stage kidney failure patients who are elderly or have a high comorbidity burden.
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Fallo Renal Crónico/fisiopatología , Calidad de Vida/psicología , Diálisis Renal/psicología , Adulto , Anciano , Anciano de 80 o más Años , Comorbilidad , Progresión de la Enfermedad , Femenino , Humanos , Fallo Renal Crónico/psicología , Fallo Renal Crónico/terapia , Masculino , Persona de Mediana Edad , Pronóstico , Estudios Prospectivos , Índice de Severidad de la EnfermedadRESUMEN
INTRODUCTION: In managing end-stage kidney disease (ESKD), older adults face a decision regarding whether to undergo dialysis or manage symptoms through kidney supportive care (KSC). This article describes the development of a patient decision aid (PDA) that is designed specifically for older adults with ESKD. METHODS: The decision context of the PDA was to choose a treatment between hemodialysis, peritoneal dialysis, and KSC. The development process used insights obtained from qualitative interviews with patients, informal caregivers, and health care providers. The PDA was then developed in English and Mandarin and was pilot-tested with patients, caregivers, and health care providers. We finalized the PDA based on feedback from pilot testing and performed a preliminary evaluation based on the International Patient Decision Aid Standards (IPDASi v4.0) criteria. RESULTS: The final PDA consists of 2 booklets and a video. During pilot testing, patients and caregivers reported high levels of ease of understanding and usefulness with ≥92.5% providing agree/strongly agree responses for the "Content"-related criteria, and ≥75% providing agree/strongly agree responses for the "Development Process and Effectiveness"-related criteria. The final PDA met 10 of 12 IPDASi v4.0 criteria. CONCLUSIONS: This PDA was found useful during pilot-testing. It will be used during renal counseling in Singapore to help older adults with ESKD and their caregivers make informed decisions on which treatment option is best for the patients.
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Despite being a relatively young nation, Singapore has established itself as a leading multifaceted medical hub, both regionally and globally. Although Singapore continues to pursue excellence in oncology care, cancer supportive care and survivorship care remain in the infancy stage. In an effort to advance this important aspect of oncology care in Singapore, the first cancer supportive and survivorship care forum was held in December 2016, involving 74 oncology practitioners. The primary goals of this forum were to raise awareness of the importance of cancer supportive and survivorship care and to provide a platform for oncology practitioners of diverse backgrounds to converge and address the challenges associated with the delivery of cancer supportive and survivorship care in Singapore. Key challenges identified during this forum included, but were not limited to, care fragmentation in an oncologist-centric model of care, poor integration of allied health and rehabilitation services, passive engagement of community partners, lack of specialized skill sets and knowledge in supportive and survivorship care, and patient-related barriers such as poor health literacy. The survivorship care model commonly used in Singapore places an imbalanced emphasis on surveillance for cancer recurrence and second primary cancers, with little attention given to the supportive and survivorship needs of the survivors. In summary, these challenges set the stage for the development and use of a more survivor-centric model, one that focuses not only on cancer surveillance, but also on the broad and unique physical and psychosocial needs of survivors of cancer in Singapore.
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Supervivientes de Cáncer , Neoplasias/epidemiología , Cuidados Paliativos , Supervivencia , Atención a la Salud , Humanos , Neoplasias/terapia , Singapur/epidemiologíaRESUMEN
BACKGROUND: Cancer patients contribute significantly to emergency department (ED) utilization. The objective of this study was to identify factors associated with patients becoming ED frequent attenders (FA) after a cancer-related hospitalization. METHODS: A retrospective cohort study was conducted using national administrative, billing, and death records of Singapore residents discharged alive from Singapore public hospitals from January 2012 to December 2015, with a primary discharge diagnosis of cancer. Patients with four or more ED visits within any 12-month period after discharge from their index hospitalization were classified as FA. Time to FA distribution was estimated using the Kaplan-Meier method, and factors associated with risk of FA were identified using multivariate Cox regression analyses. RESULTS: Records for 47 235 patients were analyzed, of whom 2980 patients were FA within the study period. Age (<17 years, hazard ratio [HR] 2.92, 95% CI 2.28-3.74; 75-84 years, HR 1.29, 95% CI 1.16-1.45; and ≥85 years, HR 1.71, 95% CI 1.45-2.02, relative to age 55-64), male gender (HR 1.26, 95% CI 1.16-1.37), Charlson comorbidity index (HR 1.21, 95% CI 1.19-1.23), and socioeconomic factors (Medifund use, HR 1.40, 95% CI 1.23-1.59; housing subsidy type, HR 2.12, 95% CI 1.77-2.54) were associated with increased risk of FA. Primary malignancies associated with FA included brain and spine (HR 2.51, 95% CI 1.67-3.75), head and neck cancers (tongue, HR 2.05, 95% CI 1.27-3.31; hypopharynx, HR 2.72, 95% CI 1.56-4.74), lung (trachea and lung, HR 1.57, 95% CI 1.13-2.18; pleural, HR 3.69, 95% CI 2.12-6.34), upper gastrointestinal (stomach, HR 1.93, 95% CI 1.26-2.74; esophagus, HR 4.13, 95% CI 2.78-6.13), hepato-pancreato-biliary (liver, HR 1.42, 95% CI 1.01-2.00, pancreas, HR 2.48, 95% CI 1.72-3.59), and certain hematological malignancies (diffuse non-Hodgkin's lymphoma, HR1.59, 95% CI 1.08-2.33, lymphoid leukemia, HR 1.86, 95% CI 1.21-2.86). Brain (HR 1.69, 95% CI 1.27-2.26), lung (HR 1.31, 95% CI 1.01-1.71), liver (HR 1.46, 95% CI 1.14-1.89), and bone (HR 1.35, 95% CI 1.04-1.76) metastases were also associated with FA. CONCLUSION: There are cancer-specific factors contributing to ED frequent attendance. Additional resources should be allocated to support high-risk groups and prevent unnecessary ED use.
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Atención Ambulatoria/estadística & datos numéricos , Servicios Médicos de Urgencia/estadística & datos numéricos , Servicio de Urgencia en Hospital , Neoplasias/epidemiología , Adolescente , Adulto , Anciano , Anciano de 80 o más Años , Comorbilidad , Femenino , Hospitalización , Humanos , Incidencia , Masculino , Persona de Mediana Edad , Aceptación de la Atención de Salud , Estudios Retrospectivos , Factores de Riesgo , Adulto JovenRESUMEN
AIM: This study aims to review patient and disease factors that predict survival after palliative surgery for intestinal perforation from metastases in advanced malignancies, with a goal to help decision-making in this clinical scenario. Secondary aims include validation of the UC Davis Cancer Centre nomogram to predict risk of 30-day morbidity and mortality for patients with disseminated malignancy undergoing surgical intervention. METHODS: The following factors were examined: age, preoperative albumin, total white blood cell count, creatinine, site of metastases, presence of ascites, presence of sepsis, steroid use, presence of dyspnea, presence of significant weight loss, preoperative chemotherapy, preoperative radiotherapy, type of operative procedure performed, Eastern Cooperative Oncology Group (ECOG) status, length of surgery, duration of inhospitalization and mortality. For univariate analysis, independent t-test and Fisher's exact test were used to analyze the association of continuous and categorical variables, respectively. For multivariate analysis, logistic regression using likelihood ratios was used. The nomogram was validated by assessing its extent of discrimination (c-index). RESULTS: Twenty palliative operations for intestinal perforation were performed during this period. On univariate analysis, presence of dyspnea, decreased preoperative levels of albumin and high ECOG status were significant predictors of increased mortality. On multivariate analysis, high ECOG status and decreased preoperative albumin were statistically significant. The concordance index in our data set was 0.64. CONCLUSION: Preoperative levels of albumin (>20 g/L) and low ECOG status (≤1) were independently associated with favorable postoperative outcomes. In patients with favorable prognostic factors such as absence of dyspnea, high preoperative levels of albumin and low ECOG status, surgical management should be considered. Conversely, in patients with unfavorable prognostic factors, medical management should be considered to avoid unnecessary surgery.
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Perforación Intestinal/cirugía , Neoplasias/complicaciones , Neoplasias/patología , Nomogramas , Cuidados Paliativos , Albúmina Sérica/metabolismo , Adulto , Anciano , Anciano de 80 o más Años , Disnea/complicaciones , Femenino , Humanos , Perforación Intestinal/etiología , Masculino , Persona de Mediana Edad , Metástasis de la Neoplasia , Selección de Paciente , Complicaciones Posoperatorias , Periodo Preoperatorio , Pronóstico , Índice de Severidad de la Enfermedad , Tasa de SupervivenciaRESUMEN
CONTEXT: The Kidney Disease Quality of Life (KDQOL™) instrument is widely used to assess care of end-stage renal disease (ESRD) patients. OBJECTIVES: This study aimed to demonstrate the measurement properties of the Chinese (simplified characters) version of the KDQOL-Short Form™ (KDQOL-SF™) in ethnic Chinese ESRD patients in Singapore. METHODS: Seventy-eight new ESRD patients, initially conservatively managed, were interviewed and followed-up; 31 later commenced dialysis. Quality of life (with the KDQOL-SF), Karnofsky Performance Status, and estimated glomerular filtration rate (eGFR) were assessed at 0, 3, 6, 9, 12, 18, and 24 months. Nonparametric statistics were used to assess correlation and changes. RESULTS: The patterns of descriptive summary and floor and ceiling effects were similar to those reported in the original English version. Most of the kidney disease-targeted scales and the generic scales of the KDQOL-SF demonstrated 1) criterion validity in terms of correlation with objectively measured and/or subjectively rated variables, 2) convergent/divergent validity in terms of correlation patterns between kidney disease-targeted and generic scales, and 3) responsiveness to change in terms of difference before and after dialysis, except for Work Status. Internal consistency reliability was satisfactory, but that for the Work Status scale was too low (alpha=0.32) and for two other kidney disease-targeted scales, Sexual Function and Dialysis Staff Encouragement, was too high (1.0). CONCLUSION: Most of the scales in the Chinese version of the KDQOL-SF were valid and achieved internal consistency reliability, except for the Work Status scale. Also, the internal consistency reliability of two disease-targeted scales was too high, suggesting room for reduction of some items to reduce burden on respondents.