1. Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention : insights gained from the ACTION trialMarieke Zwakman, Johannes JM van Delden, Glenys Caswell, Luc Deliens, F. Ingravallo, Lea J. Jabbarian, Anna Thit Johnsen, Ida Joanna Korfage, Alenka Mimič, C. Møller Arnfeldt, Urška Lunder, Branka Červ, Anja Simonič, Hana Kodba Čeh, Polona Ozbič, 2019, izvirni znanstveni članek Povzetek: Purpose. Writing an Advance Directive (AD) is often seen as a part of Advance Care Planning (ACP). ADs may include specific preferences regarding future care and treatment and information that provides a context for healthcare professionals and relatives in case they have to make decisions for the patient. The aim of this study was to get insight into the content of ADs as completed by patients with advanced cancer who participated in ACP conversations. Methods. A mixed methods study involving content analysis and descriptive statistics was used to describe the content of completed My Preferences forms, an AD used in the intervention arm of the ACTION trial, testing the effectiveness of the ACTION Respecting Choices ACP intervention. Results. In total, 33% of 442 patients who received the ACTION RC ACP intervention completed a My Preferences form. Document completion varied per country: 10.4% (United Kingdom), 20.6% (Denmark), 29.2% (Belgium), 41.7% (the Netherlands), 61.3% (Italy) and 63.9% (Slovenia). Content analysis showed that 'maintaining normal life' and 'experiencing meaningful relationships' were important for patients to live well. Fears and worries mainly concerned disease progression, pain or becoming dependent. Patients hoped for prolongation of life and to be looked after by healthcare professionals. Most patients preferred to be resuscitated and 44% of the patients expressed maximizing comfort as their goal of future care. Most patients preferred 'home' as final place of care. Conclusions. My Preferences forms provide some insights into patients' perspectives and preferences. However, understanding the reasoning behind preferences requires conversations with patients. Ključne besede: advance care planning, psycho-oncology, medical oncology, ACTION study, cancer, end of life, dying persons Objavljeno v DiRROS: 15.02.2021; Ogledov: 1494; Prenosov: 1028
Celotno besedilo (351,21 KB) Gradivo ima več datotek! Več... |
2. Development of an international Core Outcome Set (COS) for best care for the dying person : study protocolSofia 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: 1481; Prenosov: 897
Celotno besedilo (792,31 KB) Gradivo ima več datotek! Več... |
3. Advance care planning in patients with advanced cancer : a 6-country, cluster-randomised clinical trialIda Joanna Korfage, Giulia Carreras, Caroline M. Arnfeldt Christiansen, Pascalle Billekens, Louise Bramley, Linda Briggs, Francesco Bulli, Glenys Caswell, Branka Červ, Johannes JM van Delden, Hana Kodba Čeh, Urška Lunder, Alenka Mimič, Polona Ozbič, Anja Simonič, 2020, pregledni znanstveni članek Povzetek: Background. Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce. Methods and findings. To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015–2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0–3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised advance directives. Control patients received care as usual. Main outcome measures were quality of life (operationalised as European Organisation for Research and Treatment of Cancer [EORTC] emotional functioning) and symptoms. Secondary outcomes were coping, patient satisfaction, shared decision-making, patient involvement in decision-making, inclusion of advance directives (ADs) in hospital files, and use of hospital care. In all, 1,117 patients were included (442 intervention; 675 control), and 809 (72%) completed the 12-week questionnaire. Patients’ age ranged from 18 to 91 years, with a mean of 66; 39% were female. The mean number of ACP conversations per patient was 1.3. Fidelity was 86%. Sixteen percent of patients found ACP conversations distressing. Mean change in patients’ quality of life did not differ between intervention and control groups (T-score −1.8 versus −0.8, p = 0.59), nor did changes in symptoms, coping, patient satisfaction, and shared decision-making. Specialist palliative care (37% versus 27%, p = 0.002) and AD inclusion in hospital files (10% versus 3%, p < 0.001) were more likely in the intervention group. A key limitation of the study is that recruitment rates were lower in intervention than in control hospitals. Conclusions. Our results show that quality of life effects were not different between patients who had ACP conversations and those who received usual care. The increased use of specialist palliative care and AD inclusion in hospital files of intervention patients is meaningful and requires further study. Our findings suggest that alternative approaches to support patient-centred end-of-life care in this population are needed. Ključne besede: advanced care planning, medical treatment, advanced cancer, palliative care Objavljeno v DiRROS: 14.12.2020; Ogledov: 1527; Prenosov: 1443
Celotno besedilo (986,49 KB) Gradivo ima več datotek! Več... |
4. Trained facilitators' experiences with structured advance care planning conversations in oncology : an international focus group study within the ACTION trialK. 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: 1504; Prenosov: 1022
Celotno besedilo (748,78 KB) Gradivo ima več datotek! Več... |
5. |
6. |
7. |
8. |