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Study protocol for a cohort study of patients with advanced heart failure in Singapore.

ABSTRACT: INTRODUCTIO:Understanding the symptom and health expenditure burden among patients with advanced congestive heart failure (CHF) and their family caregivers is essential to reform policy and practice needed to provide quality care to these patients at affordable prices. The proposed cohort study titled Singapore Cohort of Patients with Advanced Heart Failure aims to describe trajectories of quality of life among patients and their primary informal caregivers, quantify healthcare utilisation and expenditures, assess changes in patient and caregiver awareness of and preferences for knowing diagnostic and prognostic information, awareness and utilisation of palliative care services, preferences for treatments and decision making, perceived quality of care, self-care, caregiver psychological distress and caregiver burden. METHODS:This cohort study will recruit 250 patients with New York Heart Association Classification class III and IV CHF from inpatient wards at two public tertiary healthcare institutions in Singapore. Patients and their primary informal caregiver are being surveyed every 4 months until patients' death; caregivers are followed until 8 weeks postpatient death. Medical and billing records of patients are obtained and merged with patients' survey data. ETHICS AND DISSEMINATION:The study has been approved by an ethics board. Results from the study will be disseminated through publications and presentations targeting researchers, policy makers and clinicians interested in understanding and improving care for patients with advanced CHF. TRIAL REGISTRATION NUMBER:NCT03089034.

SUBMITTER: Malhotra C

PROVIDER: S-EPMC6144387 | biostudies-literature | 2018 Sep

REPOSITORIES: biostudies-literature

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Study protocol for a cohort study of patients with advanced heart failure in Singapore.

Malhotra Chetna C Foo Renette R Singh Ratna R Ozdemir Semra S Teo Irene I Sim David D Jaufeerally Fazlur F Aung Than T Keong Yeo Khung YK Nadkarni Nivedita N Finkelstein Eric Andrew EA

BMJ open 20180917 9

<h4>Introductio</h4>Understanding the symptom and health expenditure burden among patients with advanced congestive heart failure (CHF) and their family caregivers is essential to reform policy and practice needed to provide quality care to these patients at affordable prices. The proposed cohort study titled Singapore Cohort of Patients with Advanced Heart Failure aims to describe trajectories of quality of life among patients and their primary informal caregivers, quantify healthcare utilisati ...[more]

PMID: 30224389

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Project description: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).

Project description:EscapeEvaluation of a patient-centred biopsychosocial blended collaborative care pathway for the treatment of multimorbid elderly patients.Therapeutic areaHealthcare interventions for the management of older patients with multiple morbidities.AimsMulti-morbidity treatment is an increasing challenge for healthcare systems in ageing societies. This comprehensive cohort study with embedded randomized controlled trial tests an integrated biopsychosocial care model for multimorbid elderly patients.HypothesisA holistic, patient-centred pro-active 9-month intervention based on the blended collaborative care (BCC) approach and enhanced by information and communication technologies can improve health-related quality of life (HRQoL) and disease outcomes as compared with usual care at 9 months.MethodsAcross six European countries, ESCAPE is recruiting patients with heart failure, mental distress/disorder plus ≥2 medical co-morbidities into an observational cohort study. Within the cohort study, 300 patients will be included in a randomized controlled assessor-blinded two-arm parallel group interventional clinical trial (RCT). In the intervention, trained care managers (CMs) regularly support patients and informal carers in managing their multiple health problems. Supervised by a clinical specialist team, CMs remotely support patients in implementing the treatment plan-customized to the patients' individual needs and preferences-into their daily lives and liaise with patients' healthcare providers. An eHealth platform with an integrated patient registry guides the intervention and helps to empower patients and informal carers. HRQoL measured with the EQ-5D-5L as primary endpoint, and secondary outcomes, that is, medical and patient-reported outcomes, healthcare costs, cost-effectiveness, and informal carer burden, will be assessed at 9 and ≥18 months.ConclusionsIf proven effective, the ESCAPE BCC intervention can be implemented in routine care for older patients with multiple morbidities across the participating countries and beyond.

Project description:BackgroundKnee osteoarthritis (OA) is a leading cause of global disability. The understanding of the role of psychosocial factors in knee OA outcomes is still evolving particularly in an Asian context. The primary aim of this study is to explore psychosocial factors that prognosticate short and long-term clinical outcomes, productivity, and healthcare utilization in patients with knee OA. Secondary aims are to explore the mediation and directional relationships and the role it plays in predicting the discordance between self-reported measures (SRM), physical-performance measures (PPMs) and objective clinical parameters.MethodsA multi-centre prospective cohort study of community ambulant knee OA patients seeking treatment in the tertiary healthcare institutions in Singapore will be conducted. Patients with secondary arthritis, significant cognitive impairment, severe medical comorbidities or previous knee arthroplasty will be excluded. Primary clinical outcome measure is the Knee injury and OA Outcome Score-12 (KOOS-12). Baseline characteristics include sociodemographic status, arthritis status including symptom duration and radiographic severity, comorbidities and functional status through Charlson Comorbidities Index (CCI), Barthel Index (BI) and Parker Mobility Score (PMS). Psychosocial variables include social support, kinesiophobia, negative affect, self-efficacy, injustice, chronic illness shame and the built environment. Clinical outcomes include quality of life, physical performance, global assessment, satisfaction and physical activity levels. Productivity and healthcare utilization will be assessed by a modified OA Cost and Consequences Questionnaire (OCC-Q) and the Work Productivity and Activity Impairment Questionnaire (WPAI). Variables will be collected at baseline, 4, 12 months and yearly thereafter. Regression, mediation and structural equation modelling will be used for analysis.DiscussionResults will allow contextualization, identification, and phenotyping of the critical (and potentially modifiable) psychosocial parameters that predict positive clinical outcomes in the OA population to guide optimization and refinement of healthcare and community. This will facilitate: 1. identification of high-risk knee OA subpopulations that will likely experience poor outcomes and 2. formulation of targeted multidisciplinary comprehensive approaches to address these psychosocial factors to optimize non-surgical treatment care, maximize functional outcomes and create more value-based care model for knee OA.Ethics and disseminationThe study has been registered under clinicaltrials.gov registry (Identifier: NCT04942236).

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Study protocol for a cohort study of patients with advanced heart failure in Singapore.

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Study protocol for a cohort study of patients with advanced heart failure in Singapore.

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