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29 results on '"Korfage, I. J."'

1. Shared Decision Making with Frail People with Intellectual Disabilities in the Palliative Phase: A Process Evaluation of the Use of the In-Dialogue Conversation Aid in Practice

Author

Noorlandt, H. W., Korfage, I. J., Felet, F. M. A. J., Aarts, K., Festen, D. A. M., Vrijmoeth, C., Van Der Heide, A., and Echteld, M. A.

Abstract

Background: This study reports the process evaluation of the In-Dialogue conversation aid to facilitate shared decision-making with people with intellectual disabilities in the palliative phase. Methods: Training for In-Dialogue was evaluated by 53 support staff members through questionnaires. The use of In-Dialogue in four residential care facilities for frail people with mild to severe intellectual disabilities was evaluated with semi-structured interviews with five relatives, nine support staff and three people with intellectual disabilities. Results: Most participants considered the training helpful to apply shared decision-making. Sixty-three people with intellectual disabilities participated in In-Dialogue conversations. Almost all interviewees stated that these conversations provided additional insight into people's concerns and preferences. Involvement of people with profound intellectual disabilities and their relatives appeared to be challenging. Conclusion: Conversations about illness and the end of life appeared to be feasible with the In-Dialogue conversation aid and provided insight into people's experiences and preferences.

Published
2024
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2. Meaning-making following loss among bereaved spouses during the COVID-19 pandemic (the CO-LIVE study).

Author

Vieveen, M. J. M., Yildiz, B., Korfage, I. J., Witkamp, F. E., Becqué, Y. N., van Lent, L. G. G., Pasman, H. R., Zee, M. S., Onwuteaka-Philipsen, B. D., van der Heide, A., and Goossensen, A.

Subjects
DEATH & psychology, LIFE, ATTITUDES toward death, RESEARCH funding, SPOUSES, INTERVIEWING, EMOTIONS, BEREAVEMENT, RESEARCH methodology, INDIVIDUALIZED medicine, COVID-19 pandemic
Abstract

This study investigates how individuals construe, understand, and make sense of experiences during the first wave of the COVID-19 pandemic. Seventeen semi-structured interviews were conducted with bereaved spouses focusing on meaning attribution to the death of their partner. The interviewees were lacking adequate information, personalized care, and physical or emotional proximity; these challenges complicated their experience of a meaningful death of their partner. Concomitantly, many interviewees appreciated the exchange of experiences with others and any last moments together with their partner. Bereaved spouses actively sought valuable moments, during and after bereavement, that contributed to the perceived meaning. [ABSTRACT FROM AUTHOR]

Published
2025
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3. Coping Strategies of Patients With Advanced Lung or Colorectal Cancer Over Time: Insights From the International ACTION Study.

Author

Luu, K. L., Mager, P., Nieboer, D., Witkamp, F. E., Jabbarian, L. J., Payne, S., Groenvold, M., Pollock, K., Miccinesi, G., Deliens, L., van Delden, J. J. M., van der Heide, A., Korfage, I. J., and Rietjens, J. A. C.

Subjects
CANCER patients, PSYCHOLOGICAL adaptation, COLORECTAL cancer, PALLIATIVE treatment, LUNG cancer
Abstract

Objective: A comprehensive understanding of coping strategies of patients with advanced diseases can contribute to providing supportive care that meets patients' needs. However, insight into how coping of this population develops over time is lacking. We examined coping strategies of patients with advanced cancer over time and identified distinct trajectories and their predictors. Methods: Data from 675 patients of the control group from the ACTION cluster‐randomized trial were analyzed. Patients with lung or colorectal cancer from six European countries (Belgium, Denmark, Italy, the Netherlands, Slovenia and the United Kingdom) completed questionnaires at baseline, 12 and 20 weeks. Measures included Denial, Acceptance, and Problem‐focused coping (COPE, Brief COPE inventory; scores 4–16 per scale). We used linear mixed models to analyze the data and latent class mixed models to identify stable (within patient change < 2) coping strategies. Results: At baseline, patients reported low use of Denial (6.6) and greater use of Acceptance (12.6) and Problem‐Focused coping (12.2). These scores did not significantly change. We found four distinct trajectories for the use of Denial, three for Acceptance and five for Problem‐Focused coping strategies. Stable trajectories were found in 513 (77%) patients for Denial, 645 (96%) for Acceptance and 602 (91%) for Problem‐Focused coping. All coping strategies were stable in 447 (68%) patients and two were stable in 181 patients (28%). Conclusions: Overall, the use of coping strategies was rather stable in the majority of patients with advanced cancer. However, for each of the coping strategies subgroups of patients reported fluctuating coping trajectories. [ABSTRACT FROM AUTHOR]

Published
2024
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5. Coping Strategies of Patients With Advanced Lung or Colorectal Cancer Over Time:Insights From the International ACTION Study

Author

Luu, K L, Mager, P, Nieboer, D, Witkamp, F E, Jabbarian, L J, Payne, S, Grønvold, Mogens, Pollock, K, Miccinesi, G, Deliens, L, van Delden, J J M, van der Heide, A, Korfage, I J, Rietjens, J A C, Luu, K L, Mager, P, Nieboer, D, Witkamp, F E, Jabbarian, L J, Payne, S, Grønvold, Mogens, Pollock, K, Miccinesi, G, Deliens, L, van Delden, J J M, van der Heide, A, Korfage, I J, and Rietjens, J A C

Abstract

OBJECTIVE: A comprehensive understanding of coping strategies of patients with advanced diseases can contribute to providing supportive care that meets patients' needs. However, insight into how coping of this population develops over time is lacking. We examined coping strategies of patients with advanced cancer over time and identified distinct trajectories and their predictors.METHODS: Data from 675 patients of the control group from the ACTION cluster-randomized trial were analyzed. Patients with lung or colorectal cancer from six European countries (Belgium, Denmark, Italy, the Netherlands, Slovenia and the United Kingdom) completed questionnaires at baseline, 12 and 20 weeks. Measures included Denial, Acceptance, and Problem-focused coping (COPE, Brief COPE inventory; scores 4-16 per scale). We used linear mixed models to analyze the data and latent class mixed models to identify stable (within patient change < 2) coping strategies.RESULTS: At baseline, patients reported low use of Denial (6.6) and greater use of Acceptance (12.6) and Problem-Focused coping (12.2). These scores did not significantly change. We found four distinct trajectories for the use of Denial, three for Acceptance and five for Problem-Focused coping strategies. Stable trajectories were found in 513 (77%) patients for Denial, 645 (96%) for Acceptance and 602 (91%) for Problem-Focused coping. All coping strategies were stable in 447 (68%) patients and two were stable in 181 patients (28%).CONCLUSIONS: Overall, the use of coping strategies was rather stable in the majority of patients with advanced cancer. However, for each of the coping strategies subgroups of patients reported fluctuating coping trajectories.

Published
2024

6. Coping Strategies of Patients With Advanced Lung or Colorectal Cancer Over Time:Insights From the International ACTION Study

Author

Luu, K. L., Mager, P., Nieboer, D., Witkamp, F. E., Jabbarian, L. J., Payne, S., Groenvold, M., Pollock, K., Miccinesi, G., Deliens, L., van Delden, J. J.M., van der Heide, A., Korfage, I. J., Rietjens, J. A.C., Luu, K. L., Mager, P., Nieboer, D., Witkamp, F. E., Jabbarian, L. J., Payne, S., Groenvold, M., Pollock, K., Miccinesi, G., Deliens, L., van Delden, J. J.M., van der Heide, A., Korfage, I. J., and Rietjens, J. A.C.

Abstract

Objective: A comprehensive understanding of coping strategies of patients with advanced diseases can contribute to providing supportive care that meets patients' needs. However, insight into how coping of this population develops over time is lacking. We examined coping strategies of patients with advanced cancer over time and identified distinct trajectories and their predictors. Methods: Data from 675 patients of the control group from the ACTION cluster-randomized trial were analyzed. Patients with lung or colorectal cancer from six European countries (Belgium, Denmark, Italy, the Netherlands, Slovenia and the United Kingdom) completed questionnaires at baseline, 12 and 20 weeks. Measures included Denial, Acceptance, and Problem-focused coping (COPE, Brief COPE inventory; scores 4–16 per scale). We used linear mixed models to analyze the data and latent class mixed models to identify stable (within patient change < 2) coping strategies. Results: At baseline, patients reported low use of Denial (6.6) and greater use of Acceptance (12.6) and Problem-Focused coping (12.2). These scores did not significantly change. We found four distinct trajectories for the use of Denial, three for Acceptance and five for Problem-Focused coping strategies. Stable trajectories were found in 513 (77%) patients for Denial, 645 (96%) for Acceptance and 602 (91%) for Problem-Focused coping. All coping strategies were stable in 447 (68%) patients and two were stable in 181 patients (28%). Conclusions: Overall, the use of coping strategies was rather stable in the majority of patients with advanced cancer. However, for each of the coping strategies subgroups of patients reported fluctuating coping trajectories.

Published
2024

7. Shared decision making with frail people with intellectual disabilities in the palliative phase:A process evaluation of the use of the In-Dialogue conversation aid in practice

Author

Noorlandt, H. W., Korfage, I. J., Felet, F. M.A.J., Aarts, K., Festen, D. A.M., Vrijmoeth, C., Van Der Heide, A., Echteld, M. A., Noorlandt, H. W., Korfage, I. J., Felet, F. M.A.J., Aarts, K., Festen, D. A.M., Vrijmoeth, C., Van Der Heide, A., and Echteld, M. A.

Abstract

Background: This study reports the process evaluation of the In-Dialogue conversation aid to facilitate shared decision-making with people with intellectual disabilities in the palliative phase. Methods: Training for In-Dialogue was evaluated by 53 support staff members through questionnaires. The use of In-Dialogue in four residential care facilities for frail people with mild to severe intellectual disabilities was evaluated with semi-structured interviews with five relatives, nine support staff and three people with intellectual disabilities. Results: Most participants considered the training helpful to apply shared decision-making. Sixty-three people with intellectual disabilities participated in In-Dialogue conversations. Almost all interviewees stated that these conversations provided additional insight into people's concerns and preferences. Involvement of people with profound intellectual disabilities and their relatives appeared to be challenging.Conclusion: Conversations about illness and the end of life appeared to be feasible with the In-Dialogue conversation aid and provided insight into people's experiences and preferences.

Published
2024

9. Meaning-making following loss among bereaved spouses during the COVID-19 pandemic (the CO-LIVE study)

Author

Vieveen, M. J.M., Yildiz, B., Korfage, I. J., Witkamp, F. E., Becqué, Y. N., van Lent, L. G.G., Pasman, H. R., Zee, M. S., Onwuteaka-Philipsen, B. D., van der Heide, A., Goossensen, A., Vieveen, M. J.M., Yildiz, B., Korfage, I. J., Witkamp, F. E., Becqué, Y. N., van Lent, L. G.G., Pasman, H. R., Zee, M. S., Onwuteaka-Philipsen, B. D., van der Heide, A., and Goossensen, A.

Abstract

This study investigates how individuals construe, understand, and make sense of experiences during the first wave of the COVID-19 pandemic. Seventeen semi-structured interviews were conducted with bereaved spouses focusing on meaning attribution to the death of their partner. The interviewees were lacking adequate information, personalized care, and physical or emotional proximity; these challenges complicated their experience of a meaningful death of their partner. Concomitantly, many interviewees appreciated the exchange of experiences with others and any last moments together with their partner. Bereaved spouses actively sought valuable moments, during and after bereavement, that contributed to the perceived meaning.

Published
2023

12. Missing not at random in end of life care studies

Author

Carreras G., Miccinesi G., Wilcock A., Preston N., Nieboer D., Deliens L., Groenvold M., Lunder U., van der Heide A., Baccini M., Korfage I. J., Rietjens J. A. C., Jabbarian L. J., Polinder S., van Delden H., Kars M., Zwakman M., Verkissen M. N., Eecloo K., Faes K., Pollock K., Seymour J., Caswell G., Bramley L., Payne S., Dunleavy L., Sowerby E., Bulli F., Ingravallo F., Toccafondi A., Gorini G., Cerv B., Simonic A., Mimic A., Kodba-Ceh H., Ozbic P., Arnfeldt C., Thit Johnsen A., Family Medicine and Chronic Care, End-of-life Care Research Group, Carreras G., Miccinesi G., Wilcock A., Preston N., Nieboer D., Deliens L., Groenvold M., Lunder U., van der Heide A., Baccini M., Korfage I.J., Rietjens J.A.C., Jabbarian L.J., Polinder S., van Delden H., Kars M., Zwakman M., Verkissen M.N., Eecloo K., Faes K., Pollock K., Seymour J., Caswell G., Bramley L., Payne S., Dunleavy L., Sowerby E., Bulli F., Ingravallo F., Toccafondi A., Gorini G., Cerv B., Simonic A., Mimic A., Kodba-Ceh H., Ozbic P., Arnfeldt C., Thit Johnsen A., and Public Health

Subjects
Advance care planning, Quality of life, Epidemiology, Missing data, MODELS, POWER, Health Informatics, Disease cluster, 01 natural sciences, law.invention, 010104 statistics & probability, 03 medical and health sciences, missing data, 0302 clinical medicine, Quality of life (healthcare), LUNG-CANCER, Randomized controlled trial, SDG 3 - Good Health and Well-being, law, QUALITY-OF-LIFE, Statistics, Medicine and Health Sciences, Humans, 030212 general & internal medicine, Imputation (statistics), 0101 mathematics, advance care planning, Quality Of Life, Terminal Care, lcsh:R5-920, Models, Statistical, RANDOM FOREST, MNAR, 3. Good health, Random forest, MICE, MAR, Action study, Oncology, Research Design, oncology, Psychology, lcsh:Medicine (General), Research Article
Abstract

Background Missing data are common in end-of-life care studies, but there is still relatively little exploration of which is the best method to deal with them, and, in particular, if the missing at random (MAR) assumption is valid or missing not at random (MNAR) mechanisms should be assumed. In this paper we investigated this issue through a sensitivity analysis within the ACTION study, a multicenter cluster randomized controlled trial testing advance care planning in patients with advanced lung or colorectal cancer. Methods Multiple imputation procedures under MAR and MNAR assumptions were implemented. Possible violation of the MAR assumption was addressed with reference to variables measuring quality of life and symptoms. The MNAR model assumed that patients with worse health were more likely to have missing questionnaires, making a distinction between single missing items, which were assumed to satisfy the MAR assumption, and missing values due to completely missing questionnaire for which a MNAR mechanism was hypothesized. We explored the sensitivity to possible departures from MAR on gender differences between key indicators and on simple correlations. Results Up to 39% of follow-up data were missing. Results under MAR reflected that missingness was related to poorer health status. Correlations between variables, although very small, changed according to the imputation method, as well as the differences in scores by gender, indicating a certain sensitivity of the results to the violation of the MAR assumption. Conclusions The findings confirmed the importance of undertaking this kind of analysis in end-of-life care studies.

Published
2021
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13. Shared decision-making with people with intellectual disabilities in the last phase of life : a scoping review

Author

Noorlandt, H. W., Echteld, M. A., Tuffrey-Wijne, I., Festen, D. A. M., Vrijmoeth, C., Heide,van der, A., and Korfage, I. J.

Subjects
nursing, Palliative care, Health care, alliedhealth, decision-making, intellectual disabilities
Abstract

Shared decision-making (SDM) is the process in which healthcare professionals and patients jointly discuss and decide which care and treatment policy is to be followed. The importance of SDM is increasingly being recognised across health settings, including palliative care. Little is known about SDM with people with intellectual disabilities (IDs) in the last phase of life. This review aimed to explore to which extent and in which way people with ID in the last phase of life are involved in decision-making about their care and treatment. In this scoping review, we systematically searched in the Embase, Medline and PsycINFO databases for empirical studies on decision-making with people with ID in the last phase of life. Of a total of 281 identified titles and abstracts, 10 studies fulfilled the inclusion criteria. All focused on medical end-of-life decisions, such as foregoing life-sustaining treatment, do-not-attempt-resuscitation orders or palliative sedation. All studies emphasise the relevance of involving people with ID themselves, or at least their relatives, in making decisions at the end of life. Still, only two papers described processes of decision-making in which persons with ID actively participated. Furthermore, in only one paper, best practices and guidelines for decision-making in palliative care for people with ID were defined. Although the importance of involving people with ID in the decision-making process is emphasised, best practices or guidelines about what this should look like are lacking. We recommend developing aids that specifically support SDM with people with ID in the last phase of life.

Published
2020

14. Unraveling patients’ readiness in advance care planning conversations:a qualitative study as part of the ACTION Study

Author

Zwakman, M., Milota, M. M., van der Heide, A., Jabbarian, L. J., Korfage, I. J., Rietjens, J. A.C., van Delden, J. J.M., Kars, M. C., Zwakman, M., Milota, M. M., van der Heide, A., Jabbarian, L. J., Korfage, I. J., Rietjens, J. A.C., van Delden, J. J.M., and Kars, M. C.

Abstract

Purpose: Patients’ readiness for advance care planning (ACP) is often considered a prerequisite for starting ACP conversations. Healthcare professionals’ uncertainty about patients’ readiness hampers the uptake of ACP in clinical practice. This study aims To determine how patients’ readiness is expressed and develops throughout an ACP conversation. Methods: A qualitative sub-study into the ACTION ACP conversations collected as part of the international Phase III multicenter cluster-randomized clinical trial. A purposeful sample was taken of ACP conversations of patients with advanced lung or colorectal cancer who participated in the ACTION study between May 2015 and December 2018 (n = 15). A content analysis of the ACP conversations was conducted. Results: All patients (n = 15) expressed both signs of not being ready and of being ready. Signs of being ready included anticipating possible future scenarios or demonstrating an understanding of one’s disease. Signs of not being ready included limiting one’s perspective to the here and now or indicating a preference not to talk about an ACP topic. Signs of not being ready occurred more often when future-oriented topics were discussed. Despite showing signs of not being ready, patients were able to continue the conversation when a new topic was introduced. Conclusion: Healthcare professionals should be aware that patients do not have to be ready for all ACP topics to be able to participate in an ACP conversation. They should be sensitive to signs of not being ready and develop the ability to adapt the conversation accordingly.

Published
2021

15. Unraveling patients' readiness in advance care planning conversations: a qualitative study as part of the ACTION Study

Author

Medical Humanities Onderzoek Team 1, UMC Utrecht, Julius Centrum, Global Public Health & Bioethics, JC onderzoeksprogramma Methodologie, Regenerative Medicine and Stem Cells, Bioethics & Health Humanities, Palliatieve Zorg, Child Health, Cancer, JC onderzoeksprogramma Kanker, Zwakman, M, Milota, M M, Jabbarian, L J, Korfage, I J, Rietjens, J A C, van Delden, J J M, Kars, M C, Medical Humanities Onderzoek Team 1, UMC Utrecht, Julius Centrum, Global Public Health & Bioethics, JC onderzoeksprogramma Methodologie, Regenerative Medicine and Stem Cells, Bioethics & Health Humanities, Palliatieve Zorg, Child Health, Cancer, JC onderzoeksprogramma Kanker, Zwakman, M, Milota, M M, Jabbarian, L J, Korfage, I J, Rietjens, J A C, van Delden, J J M, and Kars, M C

Published
2021

17. Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention : insights gained from the ACTION trial

Author

Zwakman, Marieke, van Delden, J J M, Jabbarian, L J, Johnsen, A T, Korfage, I J, Preston, N J, Kars, M C, and ACTION consortium

Subjects
Advance Care Planning, Oncology, End of life, Journal Article, Advance Directive, Content analysis, Cancer
Abstract

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.

Published
2020

18. Trained facilitators' experiences with structured advance care planning conversations in oncology

Author

Zwakman, M., Pollock, K., Bulli, F., Caswell, G., Cerv, B., van Delden, J. J. M., Deliens, L., van der Heide, A., Jabbarian, L. J., Koba-Ceh, H., Lunder, U., Miccinesi, G., Arnfeldt, C. A. Moller, Seymour, J., Toccafondi, A., Verkissen, M. N., Kars, M. C., Korfage, I. J., Rietjens, J. A. C., Polinder, S., Billekens, P. F. A., Eecloo, K., Faes, K., Wilcock, A., Bramley, L., Payne, S., Preston, N., Dunleavy, L., Sowerby, E., Ingravallo, F., Carreras, G., Gorini, G., Simonic, A., Mimic, A., Ceh, H. Kodba, Ozbic, P., Grønvold, M., Johnsen, A. Thit, Family Medicine and Chronic Care, End-of-life Care Research Group, Faculty of Medicine and Pharmacy, and Public Health

Subjects
Oncology, Advance care planning, Cancer Research, Lung Neoplasms, Experiences, pomočnik pri načrtovanju oskrbe, Emotions, ACTION study, respecting choices, Medical Oncology, GOALS, patients, 0302 clinical medicine, experience, Cultural diversity, Adaptation, Psychological, Health care, rak, Medicine and Health Sciences, facilitator, 030212 general & internal medicine, media_common, Cancer, Facilitator, Communication, Professional-Patient Relations, Focus Groups, bolniki, GENERAL-PRACTITIONERS, lcsh:Neoplasms. Tumors. Oncology. Including cancer and carcinogens, 3. Good health, Europe, 030220 oncology & carcinogenesis, raziskava ACTION, spoštovanje odločitev, Colorectal Neoplasms, Psychology, Life Sciences & Biomedicine, Research Article, medicine.medical_specialty, Health Personnel, media_common.quotation_subject, education, Self-concept, lcsh:RC254-282, 03 medical and health sciences, PEOPLE, Internal medicine, Respecting choices, medicine, Genetics, Journal Article, Humans, udc:614.2, cancer, Conversation, Science & Technology, izkušnje, BARRIERS, business.industry, Focus group, Self Concept, business, Qualitative research
Abstract

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. Trial registration International Standard Randomised Controlled Trial Number registry 63110516 (ISRCTN63110516) per 10/3/2014.

Published
2019
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19. Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention: insights gained from the ACTION trial

Author

Zwakman, M., van Delden, J. J. M., Caswell, G., Deliens, L., Ingravallo, F., Jabbarian, L. J., Johnsen, A. T., Korfage, I. J., Mimic, A., Arnfeldt, C. Moller, Preston, N., Kars, M. C., van der Heide, A., Rietjens, J. A. C., Polinder, S., Billekens, P. F. A., Verkissen, M. N., Eecloo, K., Faes, K., Pollock, K., Seymour, J., Wilcock, A., Bramley, L., Payne, S., Dunleavy, L., Sowerby, E., Miccinesi, G., Bulli, F., Carreras, G., Toccafondi, A., Gorini, G., Lunder, U., Cerv, B., Simonic, A., Ceh, H. Kodba, Ozbic, P., Groenvold, M., Zwakman, M., van Delden, J. J. M., Caswell, G., Deliens, L., Ingravallo, F., Jabbarian, L. J., Johnsen, A. T., Korfage, I. J., Mimic, A., Arnfeldt, C. Moller, Preston, N., Kars, M. C., van der Heide, A., Rietjens, J. A. C., Polinder, S., Billekens, P. F. A., Verkissen, M. N., Eecloo, K., Faes, K., Pollock, K., Seymour, J., Wilcock, A., Bramley, L., Payne, S., Dunleavy, L., Sowerby, E., Miccinesi, G., Bulli, F., Carreras, G., Toccafondi, A., Gorini, G., Lunder, U., Cerv, B., Simonic, A., Ceh, H. Kodba, Ozbic, P., and Groenvold, M.

Published
2020

20. Content analysis of Advance Directives completed by patients with advanced cancer as part of an Advance Care Planning intervention: insights gained from the ACTION trial

Author

Medical Humanities Onderzoek Team 1, Global Public Health & Bioethics, JC onderzoeksprogramma Methodology, Regenerative Medicine and Stem Cells, Bioethics & Health Humanities, Circulatory Health, Julius Centrum, UMC Utrecht, Palliatieve Zorg, Cancer, Child Health, JC onderzoeksprogramma Cancer, Zwakman, Marieke, van Delden, J J M, Jabbarian, L J, Johnsen, A T, Korfage, I J, Preston, N J, Kars, M C, ACTION consortium, Medical Humanities Onderzoek Team 1, Global Public Health & Bioethics, JC onderzoeksprogramma Methodology, Regenerative Medicine and Stem Cells, Bioethics & Health Humanities, Circulatory Health, Julius Centrum, UMC Utrecht, Palliatieve Zorg, Cancer, Child Health, JC onderzoeksprogramma Cancer, Zwakman, Marieke, van Delden, J J M, Jabbarian, L J, Johnsen, A T, Korfage, I J, Preston, N J, Kars, M C, and ACTION consortium

Published
2020

21. Trained facilitators' experiences with structured advance care planning conversations in oncology:an international focus group study within the ACTION trial

Author

Zwakman, M., Pollock, K., Bulli, F., Caswell, G., Cerv, B., van Delden, J. J. M., Deliens, L., van der Heide, A., Jabbarian, L. J., Koba-Ceh, H., Lunder, U., Miccinesi, G., Arnfeldt, C. A. Moller, Seymour, J., Toccafondi, A., Verkissen, M. N., Kars, M. C., Korfage, I. J., Rietjens, J. A. C., Polinder, S., Billekens, P. F. A., Eecloo, K., Faes, K., Wilcock, A., Bramley, L., Payne, S., Preston, N., Dunleavy, L., Sowerby, E., Ingravallo, F., Carreras, G., Gorini, G., Simonic, A., Mimic, A., Ceh, H. Kodba, Ozbic, P., Grønvold, M., Johnsen, A. Thit, Zwakman, M., Pollock, K., Bulli, F., Caswell, G., Cerv, B., van Delden, J. J. M., Deliens, L., van der Heide, A., Jabbarian, L. J., Koba-Ceh, H., Lunder, U., Miccinesi, G., Arnfeldt, C. A. Moller, Seymour, J., Toccafondi, A., Verkissen, M. N., Kars, M. C., Korfage, I. J., Rietjens, J. A. C., Polinder, S., Billekens, P. F. A., Eecloo, K., Faes, K., Wilcock, A., Bramley, L., Payne, S., Preston, N., Dunleavy, L., Sowerby, E., Ingravallo, F., Carreras, G., Gorini, G., Simonic, A., Mimic, A., Ceh, H. Kodba, Ozbic, P., Grønvold, M., and Johnsen, A. Thit

Published
2019

23. Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness

Author

Medical Humanities Onderzoek Team 1, JC onderzoeksprogramma Kanker, Global Public Health & Bioethics, Cancer, Zwakman, M, Jabbarian, L J, van Delden, Jjm, van der Heide, A, Korfage, I J, Pollock, K, Rietjens, Jac, Seymour, J, Kars, M C, Medical Humanities Onderzoek Team 1, JC onderzoeksprogramma Kanker, Global Public Health & Bioethics, Cancer, Zwakman, M, Jabbarian, L J, van Delden, Jjm, van der Heide, A, Korfage, I J, Pollock, K, Rietjens, Jac, Seymour, J, and Kars, M C

Published
2018

24. Exploring how individuals complete the choice tasks in a discrete choice experiment : an interview study

Author

Veldwijk, Jorien, Determann, D., Lambooij, M., van Til, J. A., Korfage, I. J., de Bekker-Grob, E. W., de Wit, A., Veldwijk, Jorien, Determann, D., Lambooij, M., van Til, J. A., Korfage, I. J., de Bekker-Grob, E. W., and de Wit, A.

Abstract

Background To be able to make valid inferences on stated preference data from a Discrete Choice Experiment (DCE) it is essential that researchers know if participants were actively involved, understood and interpreted the provided information correctly and whether they used complex decision strategies to make their choices and thereby acted in accordance with the continuity axiom. Methods During structured interviews, we explored how 70 participants evaluated and completed four discrete choice tasks aloud. Hereafter, additional questions were asked to further explore if participants understood the information that was provided to them and whether they used complex decision strategies (continuity axiom) when making their choices. Two existing DCE questionnaires on rotavirus vaccination and prostate cancer-screening served as case studies. Results A large proportion of the participants was not able to repeat the exact definition of the risk attributes as explained to them in the introduction of the questionnaire. The majority of the participants preferred more optimal over less optimal risk attribute levels. Most participants (66 %) mentioned three or more attributes when motivating their decisions, thereby acting in accordance with the continuity axiom. However, 16 out of 70 participants continuously mentioned less than three attributes when motivating their decision. Lower educated and less literate participants tended to mention less than three attributes when motivating their decision and used trading off between attributes less often as a decision-making strategy. Conclusion The majority of the participants seemed to have understood the provided information about the choice tasks, the attributes, and the levels. They used complex decision strategies (continuity axiom) and are therefore capable to adequately complete a DCE. However, based on the participants’ age, educational level and health literacy additional, actions should be undertaken to ensure that partici, De två första författarna delar förstaförfattarskapet.

Published
2016
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25. Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness.

Author

Zwakman, M., Jabbarian, L. J., van Delden, J. J. M., van der Heide, A., Korfage, I. J., Pollock, K., Rietjens, J. A. C., Seymour, J., and Kars, M. C.

Subjects
CINAHL database, MEDICAL information storage & retrieval systems, PSYCHOLOGY information storage & retrieval systems, MEDLINE, TERMINAL care, SYSTEMATIC reviews, ADVANCE directives (Medical care), DATA analysis software, DESCRIPTIVE statistics, META-synthesis
Abstract

Background: Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patients' experiences with advance care planning might provide clues to optimise its value to patients and improve implementation. Aim: To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness. Design: A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11. Data sources: The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016. Results: Of the 3555 articles found, 20 were included. We identified three themes in patients' experiences with advance care planning. 'Ambivalence' refers to patients simultaneously experiencing benefits from advance care planning as well as unpleasant feelings. 'Readiness' for advance care planning is a necessary prerequisite for taking up its benefits but can also be promoted by the process of advance care planning itself. 'Openness' refers to patients' need to feel comfortable in being open about their preferences for future care towards relevant others. Conclusion: Although participation in advance care planning can be accompanied by unpleasant feelings, many patients reported benefits of advance care planning as well. This suggests a need for advance care planning to be personalised in a form which is both feasible and relevant at moments suitable for the individual patient. [ABSTRACT FROM AUTHOR]

Published
2018
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28. Development of an international core domain set for medium, large and giant congenital melanocytic naevi as a first step towards a core outcome set for clinical practice and research.

Author

Oei W, Fledderus AC, Spuls PI, Eggen CAM, Kottner J, van der Horst CMAM, Wolkerstorfer A, van Kessel MS, Krengel S, Etchevers HC, Korfage IJ, and Pasmans SGM

Subjects
Consensus, Delphi Technique, Humans, Patient Reported Outcome Measures, Research Design, Treatment Outcome, Nevus, Pigmented, Quality of Life
Abstract

Background: Medium, large and giant congenital melanocytic naevi (CMN) can impose a psychosocial burden on patients and families, and are associated with increased risk of developing melanoma or neurological symptoms. Lack of consensus on what outcomes to measure makes it difficult to advise patients and families about treatment and to set up best practice for CMN., Objectives: Fostering consensus among patient representatives and professionals, we aim to develop a core outcome set, defined as the minimum set of outcomes to measure and report in care and all clinical trials of a specific health condition. We focused on the 'what to measure' aspect, the so-called core domain set (CDS), following the COMET and CS-COUSIN guidelines., Methods: We conducted a systematic review to identify outcomes reported in the literature. Focus groups with patient representatives identified patient-reported outcomes. All these outcomes were classified into domains. Through e-Delphi surveys, 144 stakeholders from 27 countries iteratively rated the importance of domains and outcomes. An online consensus meeting attended by seven patient representatives and seven professionals finalized the CDS., Results: We reached consensus on six domains, four of which were applied to both care and research: 'quality of life', 'neoplasms', 'nervous system' and 'anatomy of skin'. 'Adverse events' was specific to care and 'pathology' to research., Conclusions: We have developed a CDS for medium-to-giant CMN. Its application in reporting care and research of CMN will facilitate treatment comparisons. The next step will be to reach consensus on the specific outcomes for each of the domains and what instruments should be used to measure these domains and outcomes., (© 2020 British Association of Dermatologists.)

Published
2021
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29. [Screening for child abuse at emergency rooms is useful].

Author

Affourtit MJ, Korfage IJ, and Louwers EC

Subjects
Child, Humans, Netherlands epidemiology, Child Abuse diagnosis, Emergency Service, Hospital, Mass Screening methods
Abstract

In the Netherlands screening of child abuse is obligatory at emergency departments. In spite of the modest detection rate, in our opinion there is sufficient evidence and reason to continue screening.

Published
2016

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