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Iskalni niz: "avtor" (Agnes van der Heide) .

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1.
Development of an international Core Outcome Set (COS) for best care for the dying person : study protocol
Sofia C. Zambrano, Dagny Renata Faksvåg Haugen, Agnes van der Heide, Vilma A. Tripodoro, John Ellershaw, Carl-Johan Fürst, Raymond Voltz, Stephen Mason, María L. Daud, Gustavo De Simone, Urška Lunder, Hana Kodba Čeh, Miša Bakan, 2020, izvirni znanstveni članek

Povzetek: Background: In contrast to typical measures employed to assess outcomes in healthcare such as mortality or recovery rates, it is difficult to define which specific outcomes of care are the most important in caring for dying individuals. Despite a variety of tools employed to assess different dimensions of palliative care, there is no consensus on a set of core outcomes to be measured in the last days of life. In order to optimise decision making in clinical practice and comparability of interventional studies, we aim to identify and propose a set of core outcomes for the care of the dying person. Methods: Following the COMET initiative approach, the proposed study will proceed through four stages to develop a set of core outcomes: In stage 1, a systematic review of the literature will identify outcomes measured in existing peer reviewed literature, as well as outcomes derived through qualitative studies. Grey literature, will also be included. Stage 2 will allow for the identification and determination of patient and proxy defined outcomes of care at the end of life via quantitative and qualitative methods at an international level. In stage 3, from a list of salient outcomes identified through stages 1 and 2, international experts, family members, patients, and patient advocates will be asked to score the importance of the preselected outcomes through a Delphi process. Stage 4 consists of a face-to-face consensus meeting of international experts and patient/family representatives in order to define, endorse, and propose the final Core Outcomes Set. Discussion: Core Outcome Sets aim at promoting uniform assessment of care outcomes in clinical practice as well as research. If consistently employed, a robust set of core outcomes for the end of life, and specifically for the dying phase, defined by relevant stakeholders, can ultimately be translated into best care for the dying person. Patient care will be improved by allowing clinicians to choose effective and meaningful treatments, and research impact will be improved by employing internationally agreed clinically relevant endpoints and enabling accurate comparison between studies in systematic reviews and/or in meta-analyses.
Ključne besede: palliative care, palliative medicine, Delphi technique, dying persons, Outcome research, last days of life, end of life
Objavljeno v DiRROS: 02.02.2021; Ogledov: 756; Prenosov: 392
.pdf Celotno besedilo (792,31 KB)
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2.
Trained facilitators' experiences with structured advance care planning conversations in oncology : an international focus group study within the ACTION trial
K. Pollock, Marieke Zwakman, Francesco Bulli, Glenys Caswell, Branka Červ, Johannes JM van Delden, Luc Deliens, Agnes van der Heide, Lea J. Jabbarian, Hana Kodba Čeh, Urška Lunder, Anja Simonič, 2019, izvirni znanstveni članek

Povzetek: Background: In oncology, health care professionals often experience conducting advance care planning (ACP) conversations as difficult and are hesitant to start them. A structured approach could help to overcome this. In the ACTION trial, a Phase III multi-center cluster-randomized clinical trial in six European countries (Belgium, Denmark, Italy, the Netherlands, Slovenia, United Kingdom), patients with advanced lung or colorectal cancer are invited to have one or two structured ACP conversations with a trained facilitator. It is unclear how trained facilitators experience conducting structured ACP conversations. This study aims to understand how facilitators experience delivering the ACTION Respecting Choices (RC) ACP conversation. Methods: A qualitative study involving focus groups with RC facilitators. Focus group interviews were recorded, transcribed, anonymized, translated into English, and thematically analysed, supported by NVivo 11. The international research team was involved in data analysis from initial coding and discussion towards final themes. Results: Seven focus groups were conducted, involving 28 of in total 39 trained facilitators, with different professional backgrounds from all participating countries. Alongside some cultural differences, six themes were identified. These reflect that most facilitators welcomed the opportunity to participate in the ACTION trial, seeing it as a means of learning new skills in an important area. The RC script was seen as supportive to ask questions, including those perceived as difficult to ask, but was also experienced as a barrier to a spontaneous conversation. Facilitators noticed that most patients were positive about their ACTION RC ACP conversation, which had prompted them to become aware of their wishes and to share these with others. The facilitators observed that it took patients substantial effort to have these conversations. In response, facilitators took responsibility for enabling patients to experience a conversation from which they could benefit. Facilitators emphasized the need for training, support and advanced communication skills to be able to work with the script. Conclusions: Facilitators experienced benefits and challenges in conducting scripted ACP conversations. They mentioned the importance of being skilled and experienced in carrying out ACP conversations in order to be able to explore the patients' preferences while staying attuned to patients' needs.
Ključne besede: ACTION study, cancer, facilitator, patients, respecting choices, experience
Objavljeno v DiRROS: 23.09.2020; Ogledov: 838; Prenosov: 524
.pdf Celotno besedilo (748,78 KB)
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3.
Coping strategies of patients with advanced lung or colorectal cancer in six European countries : insights from the ACTION study
Lea J. Jabbarian, Ida Joanna Korfage, Branka Červ, Johannes JM van Delden, Luc Deliens, Guido Miccinesi, Sheila Payne, Anna Thit Johnsen, Mariette Verkissen, Andrew Wilcock, Agnes van der Heide, Judith Anna Catharina Rietjens, 2020, pregledni znanstveni članek

Povzetek: Objective: Even when medical treatments are limited, supporting patients' coping strategies could improve their quality of life. Greater understanding of patients' coping strategies, and influencing factors, can aid developing such support. We examined the prevalence of coping strategies and associated variables. Methods: We used sociodemographic and baseline data from the ACTION trial, including measures of Denial, Acceptance and Problem-focused coping (COPE; Brief COPE inventory), of patients with advanced cancer from six European countries. Clinicians provided clinical information. Linear mixed models with clustering at hospital level were used. Results: Data from 675 patients with stage III/ IV lung (342, 51%) or stage IV colorectal (333, 49%) cancer were used; mean age 66 (10 SD) years. Overall, patients scored low on Denial and high on Acceptance and Problem-focused coping. Older age was associated with higher scores on Denial than younger age ([beta] = 0.05; CI[0.023; 0.074]), and patients from Italy ([beta] = 1.57 CI[0.760; 2.388]) and Denmark ([beta] = 1.82 CI[0.881; 2.750]) scored higher on Denial than patients in other countries. Conclusions: Patients with advanced cancer predominantly used Acceptance and Problem-focused coping, and Denial to a lesser extent. Since the studied coping strategies of patients with advanced cancer vary between subpopulations, we recommend taking these factors into account when developing tailored interventions to support patients' coping strategies.
Ključne besede: ACTION study, lung cancer, colorectal cancer, coping strategies
Objavljeno v DiRROS: 29.07.2020; Ogledov: 1144; Prenosov: 658
.pdf Celotno besedilo (319,54 KB)
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