Multiples Myelom

  • 文章类型: Journal Article
    目的:作为基于价值的医疗保健质量改进计划的一部分,我们旨在优化多发性骨髓瘤护理路径中的共享决策(SDM)流程,作为数字护理路径(DCP)的一部分。为此,医疗保健专业人员(HCP)对SDM的观点需要更多的洞察力,以及如何在MM的DCP中处理SDM元素以促进SDM的HCP性能。
    方法:根据计划行为理论以及组织环境和SDM模型对HCP进行了访谈(第1阶段)。组织了多学科开发会议,以讨论与HCP的解决方案概念(第2阶段)。对来自质量改进小组的两名患者进行了评估。
    结果:在第一阶段,进行了十次访谈。HCP对SDM的态度和主观规范是积极的,并且执行SDM的意图很高。临床环境(物理环境,疾病特征,关于患者特征的假设,和工作流)对MM的实际SDM行为提出了挑战。教育和使用DCP来提高对SDM的认识被视为SDM的可能促进者。准备好并活跃的患者将促进SDM过程。在阶段2中,在达到最终解决方案之前开发了三个概念解决方案。最终的解决方案包括三个要素,将SDM步骤纳入DCP:1)在咨询之前,通过两个关于患者偏好的问题来创建患者意识和激活,2)在DCP集中可视化偏好,以触发HCP讨论它们,3)在决策后通过患者问卷监测和改进SDM。患者和HCP愿意实施它。
    结论:HCP参与SDM的意愿很高,但他们的实际行为受到临床环境的挑战。开发了基于3元素DCP的干预措施以增加SDM。
    解决方案的输入来自最终用户,包括两名患者和十名医疗保健专业人员。
    OBJECTIVE: As part of a quality improvement initiative in the context of value-based health care we aimed to optimize the shared decision-making (SDM) process in the care pathway for Multiple Myeloma as part of a digital care pathway (DCP). For this, more insight was needed in health care professionals\' (HCPs\') perspectives on SDM, and how SDM elements could be addressed in a DCP for MM to facilitate HCPs\' performance of SDM.
    METHODS: HCPs were interviewed as per the theory of planned behaviour and the model of organizational context and SDM (phase 1). Multidisciplinary development sessions were organized to discuss concepts of the solution with HCPs (phase 2). The solution was evaluated with two patients from the quality improvement team.
    RESULTS: In phase 1, ten interviews were held. HCPs\' attitudes and the subjective norm towards SDM were positive, and the intention to perform SDM was high. The clinical environment (physical context, disease characteristics, assumptions about patient characteristics, and workflows) for MM posed challenges on the actual SDM behavior. Education and use of the DCP to create awareness of SDM were seen as possible facilitators for SDM. A prepared and active patient would facilitate the SDM process. In phase 2, three concept solutions were developed before arriving at the final solution. The final solution consisted of three elements to incorporate SDM steps in the DCP: 1) creating patient awareness and activation with two questions about their preferences prior to a consultation, 2) visualisation of preferences centrally in the DCP to trigger HCP to discuss them, 3) monitoring and improving SDM with patient-questionnaires after decision-making. Patients and HCPs were willing to implement it.
    CONCLUSIONS: HCPs intention to engage in SDM was high, but their actual behaviour was challenged by the clinical environment. A 3-element DCP-based intervention was developed to increase SDM.
    UNASSIGNED: Input on the solution was obtained from end-users including two patients and ten healthcare professionals.
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  • 文章类型: English Abstract
    Die diesjährige Frühjahrstagung der DGHO (Deutsche Gesellschaft für Hämatologie und Medizinische Onkologie e. V.) stand unter der Überschrift «Herausforderungen in der Onkologie - personalisierte Therapiesteuerung». Über drei Themenkomplexe hinweg wurden aktuelle Möglichkeiten und Perspektiven der Therapiesteuerung in der Onkologie hinsichtlich «Methoden», gelungenen «Beispielen» sowie der «Umsetzung in der Versorgung» diskutiert.
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  • 文章类型: Journal Article
    OBJECTIVE: A next step in value-based healthcare (VBHC) is to use outcome information (OI) to inform patients about (personalized) outcomes of care in order to support decision-making processes. We aimed to explore multiple myeloma (MM) patients\' and caregivers\' views on communication of OI and (shared) decision-making (SDM).
    METHODS: Focus groups with MM patients and caregivers. Main topics were experiences and needs with information provision, communication, decision-making, and use of OI. Focus groups were audiotaped, transcribed verbatim and analyzed in an iterative process by two researchers using open coding. Member checks were performed.
    RESULTS: Two focus groups were held with 11 patients (91% male, M=71 years old) and 10 caregivers (89% partners). Information needs were different per moment in the disease trajectory and purpose. Patients were implicitly involved in decisions, but they were not always aware of options and no active weighing of values took place. Outcome information was mostly provided on an individual level, to monitor disease progression and initiate decisions about the need for changes in ongoing treatment regimens (follow-up treatment lines). Patients appreciated the current process of information provision and decision-making, but prefer more option awareness, a bigger role in decision-making and more OI to 1) weigh outcomes for decision-making; 2) get insight in their care trajectory; and 3) compare with other patients.
    CONCLUSIONS: Participants were satisfied with information provision and decision-making, but they were only implicitly involved in decisions. Real world OI derived from VBHC improvement cycles for MM may fulfil MM patients\' and caregivers\' information needs and support treatment decision-making.
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  • 文章类型: Case Reports
    CME: Multiple Myeloma - a Review Abstract. Multiple myeloma accounts for 1 % of all malignancies, and its incidence increases with age. Both the symptoms and the course of the disease are heterogeneous. While some patients experience unspecific complaints, e.g. malaise or lethargy, others might present with emergency situations like hypercalcemia, spinal cord compression or hyperviscosity, so that an urgent therapy initiation is crucial. The aim of this article is to review the most common initial symptoms, typical emergencies, as well as diagnostics and therapy of multiple myeloma.
    Zusammenfassung. Das Multiple Myelom macht 1 % aller Malignome aus, wobei die Inzidenz mit zunehmendem Alter steigt. Das Krankheitsbild verläuft sehr heterogen und die Symptome sind vielgestaltig. Während sich einige Patienten mit unspezifischen Beschwerden,wie Müdigkeit, Lethargie und Infektneigung präsentieren, gibt es Notfallsituationen wie die Hyperkalziämie, die Rückenmarkskompression oder das Hyperviskositätssyndrom, die einer sofortigen Therapieeinleitung bedürfen. Ziel dieses Artikels ist es, einen Überblick über Symptome und Notfallsituationen, die wichtigsten Abklärungsstrategien und die Therapie zu geben.
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  • 文章类型: Journal Article
    BACKGROUND: To ensure true patient-centered care, the urgency of patient participation in research is increasingly recognized. This study takes this one step further and reports on patient participation in describing patients\' needs for improving quality of care in the context of research priorities - a challenging partnership with patients in research as we yet lack experience in the Netherlands.
    OBJECTIVE: 1) To illustrate the process of describing patients\' needs in the context of research priorities for patients with blood cancer (multiple myeloma or Waldenstrom\'s disease) with the purpose to improve the quality of health care. 2) To describe the experienced needs in the context of research priorities in the patients.
    METHODS: Following the Dialogue Model, we first established a balanced project group and agreed on the study protocol, followed by the actual data collection of which the most important steps included: individual interviews and focus groups with purposeful samples of patients, a questionnaire that was sent to all members of the patient organization (n=1,782), and a dialogue meeting with patients to prioritize the final issues.
    RESULTS: 1) Ten interviews and two focus groups were successfully conducted. Response rate on the questionnaire averaged 44%. 2) Main research topics: improved information on all aspects of disease and treatment, involving patients in decision making, organization of care and the burden of neuropathy.
    CONCLUSIONS: Given the process of data collection we believe that the patients\' needs for quality of care improvements in the context of research priorities that were described are valid and representative. The novelty of this approach was that patients themselves contacted researchers to assess the patients\' priorities in a scientific and reliable way.
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  • 文章类型: Case Reports
    We report the case of a 79 year old woman presenting with progressive confusion and drowsiness. Renal insufficiency with hyperkalemia as well as hypercalcemia and severe hyperphosphatemia were diagnosed. Renal insufficiency improved with treatment. However, hyperphosphatemia persisted without apparent explanation. We discuss possible causes of hyper- and pseudohyperphosphatemia. Specifically, phosphate analysis may be disturbed by the paraproteins in patients with multiple myeloma, resulting in pseudohyperphosphatemia. We review the standard laboratory phosphate measurement and the mechanisms of interference with paraproteins.
    Wir berichten über eine 79-jährige Patientin mit zunehmender Verwirrung und Somnolenz. Neben einer Hyperkalzämie und Hyperkaliämie wurde eine schwere Hyperphosphatämie festgestellt. Trotz Behandlung und Verbesserung der gleichzeitig bestehenden Niereninsuffizienz blieb eine ungewöhnlich hohe Serumphosphatkonzentration nachweisbar, die klinisch und anamnestisch nicht erklärbar war. Wir diskutieren mögliche Ursachen einer Hyper- bzw. Pseudohyperphosphatämie. Bei Patienten mit multiplem Myelom und einer Hyperphosphatämie kann die laborchemische Phosphatmessung durch die Paraproteinämie gestört werden, was zu einer Pseudohyperphosphatämie führt. Wir diskutieren die Standard-Phosphatbestimmung sowie die möglichen Gründe einer Interferenz durch Paraproteine.
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