77 research outputs found

    Preference-sensitive decisions of patients with metastatic breast cancer: The need for decision support

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    Because of disease progression and the increasing number of treatment options, patients with metastatic breast cancer face multiple decisions over time. Our aim was to identify the multiple decisions patients with metastatic breast cancer face in order to decide which decision aids will be developed. First, we analyzed the clinical practice guidelines to identify decisions encountered by patients with metastatic breast cancer and healthcare professionals. Furthermore, an online questionnaire for patients, a focus group interview with patients and interviews with healthcare professionals were performed. In addition, we performed a systematic literature research and internet search to identify relevant decision support tools and we assessed their quality. Finally, all results were discussed with a mixed group of eight experts, consisting of researchers, patients and healthcare professionals and a comprehensive advice was given which decision aid to develop. It turned out that patients with metastatic breast cancer and healthcare professionals are confronted with eight major decision points regarding treatment and examinations during the care process. We identified four decision aids. These tools partially overlap with some of the identified decision points. Experts advised to develop a decision aid for patients with metastatic breast cancer that would address all mentioned decision points. We concluded patients with metastatic breast cancer and healthcare professionals will benefit from a personalized decision aid in which all eight major decision points are addressed. This decision aid would help patients and healthcare professionals to explore patients’ personal values and preferences in order to make a well-informed decision

    Optimising integrated stroke care in regional networks:A nationwide self-assessment study in 2012, 2015 and 2019

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    Background: To help enhance the quality of integrated stroke care delivery, regional stroke services networks in the Netherlands participated in a self-assessment study in 2012, 2015 and 2019. Methods: Coordinators of the regional stroke services networks filled out an online self-assessment questionnaire in 2012, 2015 and 2019. The questionnaire, which was based on the Development Model for Integrated Care, consisted of 97 questions in nine clusters (themes). Cluster scores were calculated as proportions of the activities implemented. Associations between clusters and features of stroke services were assessed by regression analysis. Results: The response rate varied from 93.1% (2012) to 85.5% (2019). Over the years, the regional stroke services networks increased in ‘size’: the median number of organisations involved and the volume of patients per network increased (7 and 499 in 2019, compared to 5 and 364 in 2012). At the same time, fewer coordinators were appointed for more than 1 day a week in 2019 (35.1%) compared to 2012 (45.9%). Between 2012 and 2019, there were statistically significantly more elements implemented in four out of nine clusters: ‘Transparent entrepreneurship’ (MD = 18.0% F(1) = 10.693, p = 0.001), ‘Roles and tasks’ (MD = 14.0% F(1) = 9.255, p = 0.003), ‘Patient-centeredness’ (MD = 12.9% F(1) = 9.255, p = 0.003), and ‘Commitment’ (MD = 11.2%, F(1) = 4.982, p = 0.028). A statistically significant positive correlation was found for all clusters between implementation of activities and age of the network. In addition, the number of involved organisations is associated with better execution of implemented activities for ‘Transparent entrepreneurship’, ‘Result-focused learning’ and ‘Quality of care’. Conversely, there are small but negative associations between the volume of patients and implementation rates for ‘Interprofessional teamwork’ and ‘Patient-centredness’. Conclusion: This long-term analyses of stroke service development in the Netherlands, showed that between 2012 and 2019, integrated care activities within the regional stroke networks increased. Experience in collaboration between organisations within a network benefits the uptake of integrated care activities

    What leadership role should University Medical Centers take in regional primary prevention networks? An interdisciplinary, multi-method analysis of a crowded stakeholder environment

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    Advancing public health through prevention necessitates collaboration among public, private, and community actors. Only together can these different actors amass the resources, knowledge, and community outreach required to promote health. Recent studies have suggested that university medical centres (UMCs) can play a key role in regional prevention networks, given their capacity to initiate, coordinate, drive, and monitor large partnerships. Yet, the literature often refers to prevention activities in general, leaving underexplored what UMCs can add to primary, universal prevention networks specifically. Moreover, UMCs operate in a crowded field of other organizations with extensive experience in primary prevention, who will already have an idea about what role UMCs should play in the network. This article presents a case study examining the potential role of a UMC within a densely interconnected stakeholder environment in the surroundings of a large city in the Netherlands. Combining insights from public health studies and network governance research, and integrating data from various methods, this study concludes that UMCs can enhance their contributions to prevention by assuming the role of network servants rather than network leaders. Stakeholders consider public health authorities or municipal governments as more logical candidates for coordinating the network. Moreover, partners often perceive–deservedly or not–UMCs as overly focused on the medical aspects of prevention, potentially neglecting social interventions, and as favouring universal treatments over tailor-made community interventions. At the same time, partner organizations hope that the UMCs join collaborations within the community, using their expertise to measure the impact of interventions and leveraging their prestige to generate attention for primary prevention. By synthesizing theoretical insights from multiple disciplines and analysing the empirics of network leaderships through multiple methods, this study offers UMCs a contextually-informed perspective on how to position themselves effectively within primary prevention networks

    Towards better culturally tailored cardiometabolic prevention among the South-Asian Surinamese in the Netherlands

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    Objectives: To gain insight in the motives and determinants for the uptake of healthy lifestyles by South-Asian Surinamese people to identify needs and engagement strategies for healthy lifestyle support. Methods: We used a mixed-method design: first, focus groups with South-Asian Surinamese women; second, a questionnaire directed at their social network, and third, interviews with health professionals. Qualitative content analysis, basic statistical analyses and triangulation of data were applied. Results: Sixty people participated (n = 30 women, n = 20 social network, n = 10 professionals). Respondent groups reported similar motives and determinants for healthy lifestyles. In general, cardiometabolic prevention was in line with the perspectives and needs of South-Asian Surinamese. However, there seems to be a mismatch too: South-Asian Surinamese people missed a culturally sensitive approach, whereas professionals experienced difficulty with patient adherence. Incremental changes to current lifestyles; including the social network, and an encouraging approach seem to be key points for improvement of professional cardiometabolic prevention. Conclusion: Some key points for better culturally tailoring of preventive interventions would meet the needs and preferences of the South-Asian Surinamese living in the Netherlands

    Towards Better Culturally Tailored Cardiometabolic Prevention Among the South-Asian Surinamese in the Netherlands

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    Objectives: To gain insight in the motives and determinants for the uptake of healthy lifestyles by South-Asian Surinamese people to identify needs and engagement strategies for healthy lifestyle support.Methods: We used a mixed-method design: first, focus groups with South-Asian Surinamese women; second, a questionnaire directed at their social network, and third, interviews with health professionals. Qualitative content analysis, basic statistical analyses and triangulation of data were applied.Results: Sixty people participated (n = 30 women, n = 20 social network, n = 10 professionals). Respondent groups reported similar motives and determinants for healthy lifestyles. In general, cardiometabolic prevention was in line with the perspectives and needs of South-Asian Surinamese. However, there seems to be a mismatch too: South-Asian Surinamese people missed a culturally sensitive approach, whereas professionals experienced difficulty with patient adherence. Incremental changes to current lifestyles; including the social network, and an encouraging approach seem to be key points for improvement of professional cardiometabolic prevention.Conclusion: Some key points for better culturally tailoring of preventive interventions would meet the needs and preferences of the South-Asian Surinamese living in the Netherlands

    Improving sustainability of a patient decision aid for systemic treatment of metastatic colorectal cancer: A qualitative study

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    Objective: To improve sustainability of a patient decision aid for systemic treatment of metastatic colorectal cancer, we evaluated real-world experiences and identified ways to optimize decision aid content and future implementation. Methods: Semi-structured interviews with patients and medical oncologists addressed two main subjects: user experience and decision aid content. Content analysis was applied. Fifteen experts discussed the results and devised improvements based on experience and literature review. Results: Thirteen users were interviewed. They confirmed the relevance of the decision aid for shared decision making. Areas for improvement of content concerned; 1) outdated and missing information, 2) an imbalance in presentation of treatment benefits and harms, and 3) medical oncologists' expressed preference for a more center-specific or patient individualized decision aid, presenting a selection of the guideline recommended treatment options. Key points for improvement of implementation were better alignment within the care pathway, and clear instruction to users. Conclusion: We identified relevant opportunities for improvement of an existing decision aid and developed an updated version and accompanying implementation strategy accordingly. Innovation: This paper outlines an approach for continued decision aid and implementation strategy development which will add to sustainability. Implementation success of the improved decision aid is currently being studied in a multi-center mixed-methods implementation study
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