SMAs seem to offer an appreciated variation on the regular diabetes care for children and adolescents.
Objective: Alopecia is a frequently occurring side effect of chemotherapy and has high impact on many patients. Currently, scalp cooling is the only method to prevent this chemotherapy-induced alopecia (CIA) and it is effective in about half of the patients. Since determinants of the success are largely unknown, all patients should be prepared for potential hair loss. The objective was to provide up-to-date online information about CIA and scalp cooling to support patients in coping with CIA and in their choice regarding scalp cooling. Methods: Essential aspects of delivering information and lack of information were identified during focus groups, interviews, and a questionnaire survey among cancer patients, and in discussions with nurses. Results: The obtained information was used to develop a website ( www.scalpcooling.org ) and a web-based tool. It combines scientific evidence and practical advice about CIA and regrowth of hair, scalp-cooling tolerance, efficacy and safety, as well as an overview of possible advantages and disadvantages. The web-based tool provides tailored information about the probability of CIA with and without scalp cooling in particular chemotherapy regimens. Besides, the tool offers patients’ support in decision-making by allowing them to reflect and consider their values and opinions about scalp cooling. Conclusions: This comprehensive information is useful during nursing consultations.
BackgroundShared decision making (SDM) is at the core of policy measures for making healthcare person-centred. However, the context-sensitive nature of the challenges in integrated stroke care calls for research to facilitate its implementation. This before and after evaluation study identifies factors for implementation and concludes with key recommendations for adoption.MethodsData were collected at the start and end of an implementation programme in five stroke services (December 2017 to July 2018). The SDM implementation programme consisted of training for healthcare professionals (HCPs), tailored support, development of decision aids and a social map of local stroke care. Participating HCPs were included in the evaluation study: A questionnaire was sent to 25 HCPs at baseline, followed by 11 in-depth interviews. Data analysis was based on theoretical models for implementation and 51 statements were formulated as a result. Finally, all HCPs were asked to validate and to quantify these statements and to formulate recommendations for further adoption.ResultsThe majority of respondents said that training of all HCPs is essential. Feedback on consultation and peer observation are considered to help improve performance. In addition, HCPs stated that SDM should also be embedded in multidisciplinary meetings, whereas implementation in the organisation could be facilitated by appointed ambassadors. Time was not seen as an inhibiting factor. According to HCPs, negotiating patients’ treatment decisions improves adherence to therapy. Despite possible cognitive or communications issues, all are convinced patients with stroke can be involved in a SDM-process. Relatives play an important role too in the further adoption of SDM. HCPs provided eight recommendations for adoption of SDM in integrated stroke care.ConclusionsHCPs in our study indicated it is feasible to implement SDM in integrated stroke care and several well-known implementation activities could improve SDM in stroke care. Special attention should be given to the following activities: (1) the appointment of knowledge brokers, (2) agreements between HCPs on roles and responsibilities for specific decision points in the integrated stroke care chain and (3) the timely investigation of patient’s preferences in the care process – preferably before starting treatment through discussions in a multidisciplinary meeting.
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.
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