Dataset Information

Last Year of Life Study Cologne (LYOL-C): protocol for a cross-sectional mixed methods study to examine care trajectories and transitions in the last year of life until death.

ABSTRACT: INTRODUCTION:The last year of life constitutes a particularly vulnerable phase for patients, involving nearly all health and social care structures. Yet, little scientific evidence is available that provides insight into the trajectories including the number and types of care setting transitions, transitions into palliative care and the dying phase. Only few studies have focused on difficulties associated with having to move between health and social care settings in the last year of life, although patients face a significant risk of adverse events. The Last Year of Life Study Cologne (LYOL-C) aims to fill this gap. METHODS AND ANALYSIS:LYOL-C is a mixed-methods study composed of four steps: (1) Claims data collected by the statutory health insurance funds of deceased persons will be analysed with regard to patient care trajectories, health service transitions and costs in the last year of life. (2) Patient trajectories and transitions in healthcare will additionally be reconstructed by analysing the retrospective accounts of bereaved relatives (n=400) using a culturally adapted version of the Views of Informal Carers-Evaluation of Services Short Form questionnaire and the Patient Assessment of Care for Chronic Conditions Short Form questionnaire adapted for relatives. (3) Qualitative interviews with bereaved relatives (n=40-60) will provide in-depth insight into reasons for transitions and effects on patients' quality of life. (4) Focus groups (n=3-5) with Healthcare Professionals will be conducted to discuss challenges associated with transitions in the last year of life. ETHICS AND DISSEMINATION:Ethical approval has been obtained from the Ethics Commission of the Faculty of Medicine of Cologne University (#17-188). Results will be submitted for publication in peer-reviewed journals and presented at national and international conferences. TRIAL REGISTRATION NUMBER:The study is registered in the German Clinical Trials Register (DRKS00011925) and in the Health Services Research Database (VfD_CoRe-Net_17_003806).

SUBMITTER: Strupp J

PROVIDER: S-EPMC5905737 | biostudies-literature | 2018 Apr

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Last Year of Life Study Cologne (LYOL-C): protocol for a cross-sectional mixed methods study to examine care trajectories and transitions in the last year of life until death.

Strupp Julia J Hanke Gloria G Schippel Nicolas N Pfaff Holger H Karbach Ute U Rietz Christian C Voltz Raymond R

BMJ open 20180417 4

<h4>Introduction</h4>The last year of life constitutes a particularly vulnerable phase for patients, involving nearly all health and social care structures. Yet, little scientific evidence is available that provides insight into the trajectories including the number and types of care setting transitions, transitions into palliative care and the dying phase. Only few studies have focused on difficulties associated with having to move between health and social care settings in the last year of lif ...[more]

PMID: 29666139

Similar Datasets

Project description:BackgroundPatients with advanced cancer prioritise health-related quality of life (HrQoL) in end-of-life care, however an understanding of pre-death HrQoL trajectories is lacking. We aimed to delineate and describe the trajectories of physical, social, emotional and functional HrQoL during last year of life among advanced cancer patients. We assessed associations between these trajectories and patient socio-demographic characteristics, healthcare use and place of death.MethodsWe used data from 345 decedents from a prospective cohort study of 600 patients with a solid advanced cancer receiving secondary care at public hospitals in Singapore. Patients were surveyed every three months until death and HrQoL was assessed using the Functional Assessment of Cancer Therapy - General (FACT-G) questionnaire. Interviews were conducted between July 2016 and December 2019. Group-based multi-trajectory modelling was used to assess potential heterogeneity in the four HrQoL dimensions during patients' last year of life.ResultsWe identified four distinct trajectories of HrQoL - (1) overall high HrQoL (47% of sample), (2) progressively decreasing HrQoL (32%), (3) asymmetric decline in HrQoL (13%), (4) overall low HrQoL (8%). Compared to patients with secondary or above education, those with primary education or less (β = 1.39, SE = 0.55, p-value = 0.012) were more likely to have "progressively decreasing HrQoL" or "overall low HrQoL" in contrast to "overall high HrQoL". Compared to patients with 'overall high HrQoL', those with 'overall low HrQoL' had longer length of hospital stay during the last year of life (β = 0.47, SE = 0.21, p-value = 0.026) and were more likely to die in a hospice/care home (β = 1.86, SE = 0.66, p-value = 0.005).ConclusionOur results showed heterogeneity in deterioration of HrQoL among patients with advanced cancer in the last year of life. Systematic monitoring of HrQoL, early identification and referral of high-risk patients to palliative care may provide timely relief and mitigate the steep decline in their HrQoL.Trial registrationNCT02850640.

Project description:IntroductionThe Last Year of Life Study-Cologne Part I (LYOL-C I) has identified general hospital units as the most important checkpoints for transitions in the last year of life of patients. Yet, satisfaction with hospitals, as reported by bereaved relatives, is the lowest of all health service providers. Thus, the LYOL-C Part II (LYOL-C II) focuses on optimising patient-centred care in acute hospitals for patients identified to be in their last year of life. LYOL-C II aims to test an intervention for hospitals by using a two-sided (healthcare professionals (HCPs) and patients) trigger question-based intervention to 'shake' the system in a minimally invasive manner.Methods and analysisProspective interventional mixed-methods study following a two-phase approach: phase I, individual interviews with HCPs and patient representatives to design the intervention to maximise ease of implementation and phase II, exploratory study with two arms and a prepost design with patients in their last year of life. The intervention will consist of the Surprise Question and the German version of the Supportive and Palliative Care Indicators Tool (SPICT-DE) for HCPs to identify patients and provide patient-centred care, plus question prompt sheets for patients, encouraging them to initiate discussions with their HCPs. Data on transitions, changes in therapy, quality of care, palliative care integration and death of patients will be analysed. Furthermore, a staff survey (pre/post) and guided interviews with staff, patients and relatives (post) will be conducted. Finally, a formative socioeconomic impact assessment to provide evidence regarding the sustainability of the intervention will be performed.Ethics and disseminationThe study was approved by the Ethics Committee of the Faculty of Medicine of the University of Cologne (#20-1431). Results will be published in peer-reviewed journals and presented at national and international conferences.Trial registration numberDRKS00022378.

Project description:ObjectiveTo evaluate the role of intervening hospital admissions on trajectories of disability in the last year of life.DesignProspective cohort study.SettingGreater New Haven, Connecticut, United States, from March 1998 to June 2013.Participants552 decedents from a cohort of 754 community living people, aged 70 years or older, who were initially non-disabled in four essential activities of daily living: bathing, dressing, walking, and transferring.Main outcome measureOccurrence of admissions to hospital and severity of disability (range 0-4), ascertained during monthly interviews for more than 15 years.ResultsIn the last year of life, six distinct trajectories of disability were identified, from least disabled to most disabled: 95 participants (17.2%) had no disability, 61 (11.1%) had catastrophic disability, 53 (9.6%) had accelerated disability, 61 (11.1%) had progressively mild disability, 127 (23.0%) had progressively severe disability, and 155 (28.1%) had persistently severe disability. 392 (71.0%) participants had at least one hospital admission and 248 (44.9%) had multiple hospital admissions. For each trajectory the course of disability closely tracked the monthly prevalence of hospital admission. In a set of multivariable models that included several potential confounders, hospital admission in a given month had a strong independent effect on the severity of disability, in both relative and absolute terms. The largest absolute effect was observed for catastrophic disability, with a mean increase in disability score of 1.9 (95% confidence interval 1.5 to 2.4) in the setting of a hospital admission, corresponding to a rate ratio (or relative effect) of 2.0 (95% confidence interval 1.5 to 2.7).ConclusionsIn the last year of life, acute hospital admissions play an important role in the disabling process. Knowledge about the course of disability before these intervening events may facilitate clinical decision making at the end of life. For older patients admitted to hospital with progressive or persistent levels of severe disability, representing more than half of the decedents, clinicians might consider a palliative care approach to facilitate discussions about advance care planning and to better deal with personal care needs.

Project description:BackgroundPhysician home visits are associated with better health outcomes, yet most patients near the end of life never receive such a visit. Our objectives were to describe the receipt of physician home visits during the last year of life after a referral to home care - an indication that the patient can no longer live independently - and to measure associations between patient characteristics and receipt of a home visit.MethodsWe conducted a retrospective cohort study using linked population-based health administrative databases housed at ICES. We identified adult (aged ≥ 18 yr) decedents in Ontario who died between Mar. 31, 2013, and Mar. 31, 2018, who were receiving primary care and were referred to publicly funded home care services. We described the provision of physician home visits, office visits and telephone management. We used multinomial logistic regression to calculate the odds of receiving home visits from a rostered primary care physician, controlling for referral during the last year of life, age, sex, income quintile, rurality, recent immigrant status, referral by rostered physician, referral during hospital stay, number of chronic conditions and disease trajectory based on the cause of death.ResultsOf the 58 753 decedents referred in their last year of life, 3125 (5.3%) received a home visit from their family physician. Patient characteristics associated with higher odds of receiving home visits compared to office-based or telephone-based care were being female (adjusted odds ratio [OR] 1.28, 95% confidence interval [CI] 1.21-1.35), being 85 years of age or older (adjusted OR 2.42, 95% CI 1.80-3.26) and living in a rural area (adjusted OR 1.09, 95% CI 1.00-1.18). Increased odds were associated with home care referrals by the patient's primary care physician (adjusted OR 1.49, 95% CI 1.39-1.58) and referrals occurring during a hospital stay (adjusted OR 1.20, 95% CI 1.13-1.28).InterpretationA small proportion of patients near the end of life received home-based physician care, and patient characteristics did not explain the low visit rates. Future work on system- and provider-level factors may be critical to improve access to home-based end-of-life primary care.

Dataset Information

Last Year of Life Study Cologne (LYOL-C): protocol for a cross-sectional mixed methods study to examine care trajectories and transitions in the last year of life until death.

Publications

Last Year of Life Study Cologne (LYOL-C): protocol for a cross-sectional mixed methods study to examine care trajectories and transitions in the last year of life until death.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets