Objective: To learn how to configure a patient communication aid (PCA) to facilitate shared decision-making (SDM) about treatment for advanced cancer.Methods: The PCA consists of education about... Show moreObjective: To learn how to configure a patient communication aid (PCA) to facilitate shared decision-making (SDM) about treatment for advanced cancer.Methods: The PCA consists of education about SDM, a question prompt list, and values clarification methods. Study 1. A first veersion was presented to 13 patients, 8 relatives and 14 bereaved relatives in interviews. Study 2. A second version was used by 18 patients in a pilot study. Patients and oncologists were interviewed, patients were surveyed, and consultations were audio-recorded.Results: Respondents reported that the aid facilitated patient control over information, raised choice awareness and promoted elaboration. Risks were identified, most importantly that the aid might upset patients. Also, some respondents reported that the PCA did not, or would not support decision making because they felt sufficiently competent, did not perceive a role for themselves, or did not perceive that the decision required elaboration.Conclusions: Opinions on the usefulness of the PCA varied. It was challenging to raise awareness about the presence of a choice, and to find a balance between comprehensive information and sensitivity.Practice implications: A future study should demonstrate whether the PCA can improve SDM, and whether this effect is stronger when oncologists receive training. (C) 2018 Elsevier B.V. All rights reserved. Show less
Koppel, M. ten; Onwuteaka-Philipsen, B.D.; Steen, J.T. van der; Kylanen, M.; Block, L. van den; Smets, T.; ... ; Alzheimer 2019
Objective To provide an overview of the current state of research of advance care planning (ACP), highlighting most studied topics, publication time, quality of studies and reported outcomes, and... Show moreObjective To provide an overview of the current state of research of advance care planning (ACP), highlighting most studied topics, publication time, quality of studies and reported outcomes, and to identify gaps to improve ACP receptivity, utilization, implementation, and outcomes. Method Cochrane methodology for conducting overviews of systematic reviews. Study quality was assessed using a modified version of the Assessing the Methodological Quality of Systematic Reviews tool. The following databases were searched from inception to April 2017: MEDLINE, EBM Reviews, Cochrane Reviews, CINAHL, Global Health, PsycINFO, and EMBASE. Searches were supplemented with gray literature and manual searches. Result Eighty systematic reviews, covering 1,662 single articles, show that ACP-related research focuses on nine main topics: (1) ACP as part of end-of-life or palliative care interventions, (2) care decision-making; (3) communication strategies; (4) factors influencing ACP implementation; (5) ACP for specific patient groups, (6) ACP effectiveness; (7) ACP experiences; (8) ACP cost; and (9) ACP outcome measures. The majority of this research was published since 2014, its quality ranges from moderate to low, and reports on documentation, concordance, preferences, and resource utilization outcomes.Significance of results. Despite the surge of ACP research, there are major knowledge gaps about ACP initiation, timeliness, optimal content, and impact because of the low quality and fragmentation of the available evidence. Research has mostly focused on discrete aspects within ACP instead of using a holistic evaluative approach that takes into account its intricate working mechanisms, the effects of systems and contexts, and the impacts on multilevel stakeholders. Higher quality studies and innovative interventions are needed to develop effective ACP programs and address research gaps. Show less
Boogaard, J.A.; Vet, H.C.W. de; Soest-Poortvliet, M.C. van; Anema, J.R.; Achterberg, W.P.; Steen, J.T. van der 2018
Considering the worldwide ageing of populations, there is a growing need for rehabilitation programmes specifically designed for geriatric patients. The authors developed and implemented a post... Show moreConsidering the worldwide ageing of populations, there is a growing need for rehabilitation programmes specifically designed for geriatric patients. The authors developed and implemented a post-acute geriatric rehabilitation programme in a skilled nursing facility for patients with advanced chronic obstructive pulmonary disease(COPD)- the GR-COPD programme. This paper describes the characteristics of the programme and presents three case studies to illustrate its possible benefits for individual patients. The case studies show that integration of rehabilitation and palliative care components is essential, as patients with advanced COPD admitted to hospital for an acute exacerbation often suffer from high symptom burden, deteriorating quality of life, and poor prognosis. Development and implementation of a post-acute GR-COPD programme is feasible and can offer substantial benefits for patients with advanced COPD admitted to hospital for an acute exacerbation. Show less
