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  • 1
    In: BMC Palliative Care, Springer Science and Business Media LLC, Vol. 23, No. 1 ( 2024-04-02)
    Abstract: End-of-life (EoL) care volunteers in hospitals are a novel approach to support patients and their close ones. The iLIVE Volunteer Study supported hospital volunteer coordinators from five European countries to design and implement an EoL care volunteer service on general wards in their hospitals. This study aimed to identify and explore barriers and facilitators to the implementation of EoL care volunteer services in the five hospitals. Methods Volunteer coordinators (VCs) from the Netherlands (NL), Norway (NO), Slovenia (SI), Spain (ES) and United Kingdom (UK) participated in a focus group interview and subsequent in-depth one-to-one interviews. A theory-inspired framework based on the five domains of the Consolidated Framework for Implementation Research (CFIR) was used for data collection and analysis. Results from the focus group were depicted in radar charts per hospital. Results Barriers across all hospitals were the COVID-19 pandemic delaying the implementation process, and the lack of recognition of the added value of EoL care volunteers by hospital staff. Site-specific barriers were struggles with promoting the service in a highly structured setting with many stakeholders (NL), negative views among nurses on hospital volunteering (NL, NO), a lack of support from healthcare professionals and the management (SI, ES), and uncertainty about their role in implementation among VCs (ES). Site-specific facilitators were training of volunteers (NO, SI, NL), involving volunteers in promoting the service (NO), and education and awareness for healthcare professionals about the role and boundaries of volunteers (UK). Conclusion Establishing a comprehensive EoL care volunteer service for patients in non-specialist palliative care wards involves multiple considerations including training, creating awareness and ensuring management support. Implementation requires involvement of stakeholders in a way that enables medical EoL care and volunteering to co-exist. Further research is needed to explore how trust and equal partnerships between volunteers and professional staff can be built and sustained. Trial registration NCT04678310. Registered 21/12/2020.
    Type of Medium: Online Resource
    ISSN: 1472-684X
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2024
    detail.hit.zdb_id: 2091556-1
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  • 2
    In: BMJ Open, BMJ, Vol. 12, No. 8 ( 2022-08), p. e057229-
    Abstract: Adequately addressing the needs of patients at the end of life and their relatives is pivotal in preventing unnecessary suffering and optimising their quality of life. The purpose of the iLIVE study is to contribute to high-quality personalised care at the end of life in different countries and cultures, by investigating the experiences, concerns, preferences and use of care of terminally ill patients and their families. Methods and analysis The iLIVE study is an international cohort study in which patients with an estimated life expectancy of 6 months or less are followed up until they die. In total, 2200 patients will be included in 11 countries, that is, 200 per country. In addition, one relative per patient is invited to participate. All participants will be asked to fill in a questionnaire, at baseline and after 4 weeks. If a patient dies within 6 months of follow-up, the relative will be asked to fill in a post-bereavement questionnaire. Healthcare use in the last week of life will be evaluated as well; healthcare staff who attended the patient will be asked to fill in a brief questionnaire to evaluate the care that was provided. Qualitative interviews will be conducted with patients, relatives and healthcare professionals in all countries to gain more in-depth insights. Ethics and dissemination The cohort study has been approved by ethics committees and the institutional review boards (IRBs) of participating institutes in all countries. Results will be disseminated through the project website, publications in scientific journals and at conferences. Within the project, there will be a working group focusing on enhancing the engagement of the community at large with the reality of death and dying. Trial registration number NCT04271085 .
    Type of Medium: Online Resource
    ISSN: 2044-6055 , 2044-6055
    Language: English
    Publisher: BMJ
    Publication Date: 2022
    detail.hit.zdb_id: 2599832-8
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  • 3
    In: JAMA Network Open, American Medical Association (AMA), Vol. 5, No. 11 ( 2022-11-30), p. e2244350-
    Abstract: To optimize palliative care in patients with cancer who are in their last year of life, timely and accurate prognostication is needed. However, available instruments for prognostication, such as the surprise question (“Would I be surprised if this patient died in the next year?”) and various prediction models using clinical variables, are not well validated or lack discriminative ability. Objective To develop and validate a prediction model to calculate the 1-year risk of death among patients with advanced cancer. Design, Setting, and Participants This multicenter prospective prognostic study was performed in the general oncology inpatient and outpatient clinics of 6 hospitals in the Netherlands. A total of 867 patients were enrolled between June 2 and November 22, 2017, and followed up for 1 year. The primary analyses were performed from October 9 to 25, 2019, with the most recent analyses performed from June 19 to 22, 2022. Cox proportional hazards regression analysis was used to develop a prediction model including 3 categories of candidate predictors: clinician responses to the surprise question, patient clinical characteristics, and patient laboratory values. Data on race and ethnicity were not collected because most patients were expected to be of White race and Dutch ethnicity, and race and ethnicity were not considered as prognostic factors. The models’ discriminative ability was assessed using internal-external validation by study hospital and measured using the C statistic. Patients 18 years and older with locally advanced or metastatic cancer were eligible. Patients with hematologic cancer were excluded. Main Outcomes and Measures The risk of death by 1 year. Results Among 867 patients, the median age was 66 years (IQR, 56-72 years), and 411 individuals (47.4%) were male. The 1-year mortality rate was 41.6% (361 patients). Three prediction models with increasing complexity were developed: (1) a simple model including the surprise question, (2) a clinical model including the surprise question and clinical characteristics (age, cancer type prognosis, visceral metastases, brain metastases, Eastern Cooperative Oncology Group performance status, weight loss, pain, and dyspnea), and (3) an extended model including the surprise question, clinical characteristics, and laboratory values (hemoglobin, C-reactive protein, and serum albumin). The pooled C statistic was 0.69 (95% CI, 0.67-0.71) for the simple model, 0.76 (95% CI, 0.73-0.78) for the clinical model, and 0.78 (95% CI, 0.76-0.80) for the extended model. A nomogram and web-based calculator were developed to support clinicians in adequately caring for patients with advanced cancer. Conclusions and Relevance In this study, a prediction model including the surprise question, clinical characteristics, and laboratory values had better discriminative ability in predicting death among patients with advanced cancer than models including the surprise question, clinical characteristics, or laboratory values alone. The nomogram and web-based calculator developed for this study can be used by clinicians to identify patients who may benefit from palliative care and advance care planning. Further exploration of the feasibility and external validity of the model is needed.
    Type of Medium: Online Resource
    ISSN: 2574-3805
    Language: English
    Publisher: American Medical Association (AMA)
    Publication Date: 2022
    detail.hit.zdb_id: 2931249-8
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  • 4
    In: BMC Medical Informatics and Decision Making, Springer Science and Business Media LLC, Vol. 24, No. 1 ( 2024-02-02)
    Abstract: Patients with advanced cancer who no longer have standard treatment options available may decide to participate in early phase clinical trials (i.e. experimental treatments with uncertain outcomes). Shared decision-making (SDM) models help to understand considerations that influence patients’ decision. Discussion of patient values is essential to SDM, but such communication is often limited in this context and may require new interventions. The OnVaCT intervention, consisting of a preparatory online value clarification tool (OnVaCT) for patients and communication training for oncologists, was previously developed to support SDM. This study aimed to qualitatively explore associations between patient values that are discussed between patients and oncologists during consultations about potential participation in early phase clinical trials before and after implementation of the OnVaCT intervention. Methods This study is part of a prospective multicentre nonrandomized controlled clinical trial and had a between-subjects design: pre-intervention patients received usual care, while post-intervention patients additionally received the OnVaCT. Oncologists participated in the communication training between study phases. Patients’ initial consultation on potential early phase clinical trial participation was recorded and transcribed verbatim. Applying a directed approach, two independent coders analysed the transcripts using an initial codebook based on previous studies. Steps of continuous evaluation and revision were repeated until data saturation was reached. Results Data saturation was reached after 32 patient-oncologist consultations (i.e. 17 pre-intervention and 15 post-intervention). The analysis revealed the values: hope, perseverance, quality or quantity of life, risk tolerance, trust in the healthcare system/professionals, autonomy, social adherence, altruism, corporeality, acceptance of one’s fate, and humanity. Patients in the pre-intervention phase tended to express values briefly and spontaneously. Oncologists acknowledged the importance of patients’ values, but generally only gave ‘contrasting’ examples of why some accept and others refuse to participate in trials. In the post-intervention phase, many oncologists referred to the OnVaCT and/or asked follow-up questions, while patients used longer phrases that combined multiple values, sometimes clearly indicating their weighing. Conclusions While all values were recognized in both study phases, our results have highlighted the different communication patterns around patient values in SDM for potential early phase clinical trial participation before and after implementation of the OnVaCT intervention. This study therefore provides a first (qualitative) indication that the OnVaCT intervention may support patients and oncologists in discussing their values. Trial registration Netherlands Trial Registry: NL7335, registered on July 17, 2018.
    Type of Medium: Online Resource
    ISSN: 1472-6947
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2024
    detail.hit.zdb_id: 2046490-3
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  • 5
    In: Cancers, MDPI AG, Vol. 14, No. 6 ( 2022-03-15), p. 1500-
    Abstract: When standard treatment options are not available anymore, patients with advanced cancer may participate in early phase clinical trials. Improving this complex decision-making process may improve their quality of life. Therefore, this prospective multicenter study with questionnaires untangles several contributing factors to decisional conflict (which reflects the quality of decision-making) in patients with advanced cancer who recently decided upon early phase clinical trial participation (phase I or I/II). We hypothesized that health-related quality of life, health literacy, sense of hope, satisfaction with the consultation, timing of the decision, and the decision explain decisional conflict. Mean decisional conflict in 116 patients was 30.0 (SD = 16.9). Multivariate regression analysis showed that less decisional conflict was reported by patients with better global health status (β = −0.185, p = 0.018), higher satisfaction (β = −0.246, p = 0.002), and who made the decision before (β = −0.543, p 〈 0.001) or within a week after the consultation (β = −0.427, p 〈 0.001). These variables explained 37% of the variance in decisional conflict. Healthcare professionals should realize that patients with lower global health status and who need more time to decide may require additional support. Although altering such patient intrinsic characteristics is difficult, oncologists can impact the satisfaction with the consultation. Future research should verify whether effective patient-centered communication could prevent decisional conflict.
    Type of Medium: Online Resource
    ISSN: 2072-6694
    Language: English
    Publisher: MDPI AG
    Publication Date: 2022
    detail.hit.zdb_id: 2527080-1
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  • 6
    In: BMJ Supportive & Palliative Care, BMJ, Vol. 8, No. 3 ( 2018-09), p. 278-281
    Abstract: Burdensome and futile interventions with the aim of prolonging life should be avoided in dying patients. However, current clinical practice has hardly been investigated. We examined the number and type of diagnostic and therapeutic medical interventions in hospitalised patients with cancer in their last days of life. In addition, we investigated if physician awareness of impending death affected the use of these interventions. Methods Questionnaire study and medical record study. Attending physicians of patients who died in a university hospital between January 2010 and June 2012 were asked whether they had been aware of the patient’s impending death. The use of diagnostic and therapeutic interventions and medications was assessed by studying patients’ charts. We included 131 patients. Results In the last 72 and 24 hours of life, 59% and 24% of the patients received one or more diagnostic interventions, respectively. Therapeutic interventions were provided to 47% and 31%. In the last 24 hours of life, patients received on average 5.8 types of medication. Awareness of a patient’s impending death was associated with a significant lower use of diagnostic interventions (48% vs 69% in the last 72 hours; 11% vs 37% in the last 24 hours) and several medications that potentially prolong life (eg, antibiotics and cardiovascular medication). Conclusions Many patients with cancer who die in hospital receive diagnostic and therapeutic interventions in the last days of life of which their advantages are questionable. To improve end-of-life care, medical care should be adapted.
    Type of Medium: Online Resource
    ISSN: 2045-435X , 2045-4368
    Language: English
    Publisher: BMJ
    Publication Date: 2018
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  • 7
    In: JAMA, American Medical Association (AMA), Vol. 326, No. 13 ( 2021-10-05), p. 1268-
    Type of Medium: Online Resource
    ISSN: 0098-7484
    RVK:
    Language: English
    Publisher: American Medical Association (AMA)
    Publication Date: 2021
    detail.hit.zdb_id: 2958-0
    detail.hit.zdb_id: 2018410-4
    SSG: 5,21
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  • 8
    Online Resource
    Online Resource
    American Society of Clinical Oncology (ASCO) ; 2015
    In:  Journal of Clinical Oncology Vol. 33, No. 29_suppl ( 2015-10-10), p. 17-17
    In: Journal of Clinical Oncology, American Society of Clinical Oncology (ASCO), Vol. 33, No. 29_suppl ( 2015-10-10), p. 17-17
    Abstract: 17 Background: Awareness is growing that palliative care is an important part in the hospital. It is aimed to improve the quality of life of patients and their relatives in the end-stage of a disease by a multidimensional approach. Prior to the development and implementation of a digital Care Pathway for Palliative Care, we wanted to map the palliative care process during the last hospitalization prior to death of patients with malignancies. Methods: We studied the medical files of patients who died in the period 1 July 2011 – 1 July 2012 within six months after having been admitted to the Department of Oncology and Lung diseases in a general hospital. A checklist was used to collect data about the patients’ diagnosis; the care that was provided during their last stay in the hospital; and about characteristics of the dying process. Results: In total 149 medical records were examined. Most of the patients (78%) were admitted because of complications or progression of the disease. During their last hospitalization, 90% of the patients underwent radiologic tests and 97% underwent blood tests. Furthermore, 38% of the patients received chemotherapy. Of all patients, 55% died during their last stay in the hospital. Medical files contained limited information about the care process: 18% contained information about provision of information to the general practitioner (GP) during admission, 78% contained reports of bad-news conversations. In 36%, the patient’s preference concerning their place of death was unknown. Further, there was no optimal communication with the GP after the patient had died in the hospital; 87% of the GP’s were informed. Conclusions: Palliative care in the hospital was found to involve suboptimal communication on several important topics. A structured medical file to guide palliative care may contribute to improvement of the care process. We are now evaluating the effects of a digital Care Pathway for Palliative Care, that includes ‘marking’ of the palliative phase of a disease and supports adequate communication, advanced care planning, multidisciplinary cooperation and continuity of care.
    Type of Medium: Online Resource
    ISSN: 0732-183X , 1527-7755
    RVK:
    RVK:
    Language: English
    Publisher: American Society of Clinical Oncology (ASCO)
    Publication Date: 2015
    detail.hit.zdb_id: 2005181-5
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  • 9
    Online Resource
    Online Resource
    Springer Science and Business Media LLC ; 2022
    In:  Supportive Care in Cancer Vol. 30, No. 11 ( 2022-11), p. 9299-9306
    In: Supportive Care in Cancer, Springer Science and Business Media LLC, Vol. 30, No. 11 ( 2022-11), p. 9299-9306
    Abstract: Adequate integration of palliative care in oncological care can improve the quality of life in patients with advanced cancer. Whether such integration affects the use of diagnostic procedures and medical interventions has not been studied extensively. We investigated the effect of the implementation of a standardized palliative care pathway in a hospital on the use of diagnostic procedures, anticancer treatment, and other medical interventions in patients with incurable cancer at the end of their life. Methods In a pre- and post-intervention study, data were collected concerning adult patients with cancer who died between February 2014 and February 2015 (pre-PCP period) or between November 2015 and November 2016 (post-PCP period). We collected information on diagnostic procedures, anticancer treatments, and other medical interventions during the last 3 months of life. Results We included 424 patients in the pre-PCP period and 426 in the post-PCP period. No differences in percentage of laboratory tests (85% vs 85%, p  = 0.795) and radiological procedures (85% vs 82%, p  = 0.246) were found between both groups. The percentage of patients who received anticancer treatment or other medical interventions was lower in the post-PCP period (40% vs 22%, p   〈  0.001; and 42% vs 29%, p   〈  0.001, respectively). Conclusions Implementation of a PCP resulted in fewer medical interventions, including anticancer treatments, in the last 3 months of life. Implementation of the PCP may have created awareness among physicians of patients’ impending death, thereby supporting caregivers and patients to make appropriate decisions about medical treatment at the end of life. Trial registration number Netherlands Trial Register; clinical trial number: NL 4400 (NTR4597); date registrated: 2014–04-27.
    Type of Medium: Online Resource
    ISSN: 0941-4355 , 1433-7339
    Language: English
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
    detail.hit.zdb_id: 1463166-0
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  • 10
    In: European Journal of Cancer Care, Hindawi Limited, Vol. 31, No. 6 ( 2022-11)
    Type of Medium: Online Resource
    ISSN: 0961-5423 , 1365-2354
    URL: Issue
    Language: English
    Publisher: Hindawi Limited
    Publication Date: 2022
    detail.hit.zdb_id: 2020234-9
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