Publications by authors named "Rietjens J"
Objectives: This systematic review examines how design methodologies support Shared Decision Making (SDM), identifies the most suitable for future use, explores types of methodologies used, challenges faced, and the impact on patients, clinicians, and care pathways.
Methods: Studies were searched on Medline, Web of Science, Scopus and grey literature (Google Scholar, CORDIS) up to July 2024, following PRISMA guidelines.
Results: were analysed to identify patient involvement, design strategies, SDM solutions, and their impact on care paths, professionals, and patients.
Article Synopsis
- Explicit end-of-life discussions are rare in Confucian-influenced Asian societies, making culturally sensitive advance care planning challenging, especially with the important role of families in decision-making.
- A Delphi study involving 115 multidisciplinary experts from five Asian regions aimed to create a consensus definition of advance care planning and provide practical recommendations for a patient-centered and family-based approach.
- The proposed definition emphasizes identifying personal values and preferences for future medical care while engaging family and healthcare providers, with high agreement on various recommendations that can inform practices, education, and policies for culturally relevant care in Asia.
Article Synopsis
- The study investigates how patients with advanced cancer cope over time, aiming to improve supportive care by understanding their coping strategies.
- Data from 675 patients across six European countries were analyzed, using questionnaires to track Denial, Acceptance, and Problem-Focused coping over 20 weeks.
- Findings showed that while most coping strategies remained stable, different subgroups of patients exhibited varying trajectories in their coping methods.
Article Synopsis
- The study focuses on stage I and II melanoma survivors to understand their experiences and survivorship care needs after treatment, highlighting the lack of research in this area despite the rising incidence of localized melanoma.
- The qualitative research involved 18 survivors divided into focus groups, revealing that they experienced significant emotional and physical challenges after treatment, alongside a mix of relief and fear as they navigated life post-diagnosis.
- Survivors emphasized the need for tailored information, accessible resources, and ongoing, patient-centered support to help them adjust and improve their quality of life after melanoma treatment.
Aim: To evaluate the failed implementation of the Carer Support Needs Assessment Tool Intervention for family caregivers in end-of-life care, within a trial context using Normalization Process Theory (NPT).
Design: An evaluation study was conducted to learn lessons from our trial, which was not successful due to the low number of participants. The evaluation study utilized various data sources, including published data from interviews and questionnaires, and unpublished data derived from emails and conversation notes.
Objective: To obtain insight into adaptation processes of redefining normality and its influencing factors in relatives of patients with advanced cancer.
Methods: An exploratory qualitative study among relatives of patients with advanced cancer was conducted. Participants were purposively recruited.
Cancer experience in metaphors: patients, carers, professionals, students - a scoping review.
BMJ Support Palliat Care
May 2024
The use of metaphors to talk about cancer experiences has attracted much research and debate, especially in the case of military metaphors. However, questions remain about what metaphors are used by different populations for different aspects of the cancer experience. This scoping review aims to answer them.
View Article and Find Full Text PDFArticle Synopsis
- - The 4D PICTURE project aims to enhance cancer care by redesigning patient care paths and creating data-driven decision-support tools that incorporate patient preferences and quality of life into treatment choices.
- - The project targets specific cancers like breast cancer, prostate cancer, and melanoma, utilizing large datasets and innovative methodologies to facilitate better decision-making and improve overall health outcomes.
- - An ethical framework will guide the project to address social and ethical concerns, ensuring the sustainability and applicability of the developed tools across different cancer types and European Union member states.
Introduction: Existing advance care planning (ACP) definitional frameworks apply to individuals with decision-making capacity. We aimed to conceptualize ACP for dementia in terms of its definition and issues that deserve particular attention.
Methods: Delphi study with phases: (A) adaptation of a generic ACP framework by a task force of the European Association for Palliative Care (EAPC); (B) four online surveys by 107 experts from 33 countries, September 2021 to June 2022; (C) approval by the EAPC board.
Background: Continuous deep sedation (CDS) can be used for patients at the end of life who suffer intolerably from severe symptoms that cannot be relieved otherwise. In the Netherlands, the use of CDS is guided by an national guideline since 2005. The percentage of patients for whom CDS is used increased from 8% of all patients who died in 2005 to 18% in 2015.
View Article and Find Full Text PDFBackground: The incidence of continuous deep sedation (CDS) has more than doubled over the last decade in The Netherlands, while reasons for this increase are not fully understood. Patients and relatives have an essential role in deciding on CDS. We hypothesize that the increase in CDS practice is related to the changing role of patients and relatives in deciding on CDS.
View Article and Find Full Text PDFPurpose: Many patients prefer an active role in making decisions about their care and treatment, but participating in such decision-making is challenging. The aim of this study was to explore whether patient-reported outcomes (quality of life and patient satisfaction), patients' coping strategies, and sociodemographic and clinical characteristics were associated with self-efficacy for participation in decision-making among patients with advanced cancer.
Methods: We used baseline data from the ACTION trial of patients with advanced colorectal or lung cancer from six European countries, including scores on the decision-making participation self-efficacy (DEPS) scale, EORTC QLQ-C15-PAL questionnaire, and the EORTC IN-PATSAT32 questionnaire.
Objectives: The care needs of patients with advanced cancer and their relatives change throughout the disease trajectory. This study focused on the care-related problems and needs of patients with advanced cancer and their relatives. This was done from the perspective of centres for information and support.
View Article and Find Full Text PDFBackground: Acculturation is the process of two different cultures coming into contact. It is unclear how acculturation influences Chinese immigrants' engagement in advance care planning due to the complexity and multifaceted nature of both acculturation and advance care planning.
Aims: To synthesize evidence regarding the role of Chinese immigrants' acculturation in their engagement in advance care planning.
Purpose: To understand the experiences and preferences of Indonesian cancer survivors regarding medical information disclosure and advance care planning.
Methods: On the basis of systematic reviews of the scientific literature, qualitative studies, and expert-panel input, we developed an online survey that was distributed to nine cancer survivor support groups in Indonesia.
Results: A total of 1,030 valid responses were received.
Purpose: The family plays a major role in medical decision-making in China. Little is known about whether family caregivers understand patients' preference for receiving life-sustaining treatments and are able to make decisions consistent with them when patients are incapable of making medical decisions. We aimed to compare preferences and attitudes concerning life-sustaining treatments of community-dwelling patients with chronic conditions and their family caregivers.
View Article and Find Full Text PDFObjective: Family caregivers are often intensively involved in palliative and end-of-life cancer care. A variety of interventions to support family caregivers have been developed, differing in target population, modality, and components. We aimed to systematically examine characteristics and the effectiveness of interventions to support family caregivers of patients with advanced cancer.
View Article and Find Full Text PDFCOVID-19 may cause sudden serious illness, and relatives having to act on patients' behalf, emphasizing the relevance of advance care planning (ACP). We explored how ACP was portrayed in newspapers during year one of the pandemic. In 'LexisNexis Uni', we identified English-language newspaper articles about ACP and COVID-19, published January-November 2020.
View Article and Find Full Text PDFIntroduction: Clinical prediction models (CPMs) for coronavirus disease 2019 (COVID-19) may support clinical decision making, treatment, and communication. However, attitudes about using CPMs for COVID-19 decision making are unknown.
Methods: Online focus groups and interviews were conducted among health care providers, survivors of COVID-19, and surrogates (i.
Introduction: Adolescents and young adults with an uncertain or poor cancer prognosis (UPCP) are confronted with ongoing and unique age-specific challenges, which forms an enormous burden. To date, little is known about the way AYAs living with a UPCP cope with their situation. Therefore, this study explores how AYAs with a UPCP cope with the daily challenges of their disease.
View Article and Find Full Text PDFBackground: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce.
Aim: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries.
Background: Web-based advance care planning (ACP) programs may support patients in thinking about and discussing their preferences for future treatment and care. However, they are not widely available, and only a limited number of programs are evidence based.
Objective: We aimed to develop and evaluate an evidence-based, interactive web-based ACP program that guides users through the process of thinking about, discussing, and recording of preferences for treatment and care.