ObjectiveThis qualitative study investigated patients’ needs and wishes in relation to patient navigation.DesignA qualitative interview study was conducted. Participants were invited to take part in three in-depth interviews over a period of 6–12 months. Thematic analysis was used.SettingInterviewees were sought in the Berlin metropolitan area of Germany in academic university hospitals, in rehabilitation clinics and through self-help organisations.ParticipantsThe sample consisted of individuals diagnosed with lung cancer (n=20) or stroke (n=20).ResultsFrom the perspective of interviewees, patient navigators should function as consistent contact persons, present during the whole care trajectory. Their role would be to guide patients through an often confusing healthcare landscape, offering practical, advisory and emotional assistance corresponding to patients’ needs. The study shows that—independent of the disease—participants had similar expectations and needs regarding support from navigators.ConclusionFor chronic and complex diseases—as is the case with lung cancer and stroke—it appears less important for navigators to fulfil disease-specific tasks. Rather, they should ensure that patients’ more general needs, in relation to social, practical and emotional support, are met in a way that suits their individual wishes. Following these results, patient navigation programmes might be designed to include generic elements, which should then be adapted to the infrastructure in a particular healthcare region and to the particularities of a specific healthcare system.
Background The concept of patient navigation was first established in the USA to support vulnerable patient groups in receiving timely and comprehensive access to cancer care. It has recently gained increasing interest in Germany to support patients with chronic diseases in a fragmented healthcare system. The aim of this paper is to present the development of such a model adapted to the German context based on the results of mixed-methods studies investigating the need for and barriers to patient-oriented care. Methods In a process adapted from Delphi rounds, we conducted regular structured workshops with investigators of the project to discuss results of their studies and identify content and structure of the model based on the data. Workshop discussions were structured along seven core components of a navigation model including target patient groups, navigator tasks, occupational background and education of navigators, and patient-navigator interaction mode. Results Using an approach based on empirical data of current care practices with special focus on patients’ perspectives, we developed a patient-oriented navigation model for patients who have experienced stroke and lung cancer in the German healthcare context. Patients without personal social support were viewed as struggling most with the healthcare system, as well as multimorbid and elderly patients. Navigators should serve as a longer-term contact person with a flexible contact mode and timing based on the individual situation and preferences of patients. Navigator tasks include the provision of administrative and organizational support as well as referral and guidance to available resources and beneficial health programs with special forms of knowledge. Implementation of the navigator should be flexibly located to ensure a reliable outreach to vulnerable patients for first contact in settings like specialized in-patient and out-patient settings, while navigation itself focuses on care coordination in the out-patient setting. Conclusion Flexibility of navigator tasks needed to be a core characteristic of a navigation model to be perceived as supportive from patients’ perspectives. In a subsequent feasibility study, an intervention based on the model will be evaluated according to its acceptance, demand, and practicality.
The aim of the present study was to investigate the awareness of patient navigation (PN) in the general population in Germany and to assess which navigator tasks are considered most important. The analysis drew on a 2019 nationwide telephone survey of 6110 adults. We compared rankings of emotional support, administrative support and information among respondents with and without experience of patient navigation. One-fifth of the sample reported having heard of PNs; 13% of this group already had experience with PN. In both groups, the majority (>47%) considered assistance with applications to be most important. This was particularly the case among younger adults and those with a chronic disease. Within the inexperienced group, higher educated people had higher odds of ranking provision of information as most important for them, whereas women and those without a partner had higher odds of ranking emotional support as the most important task. This study shows that the majority of people predominantly expect PN services to offer administrative support, irrespective of their socioeconomic and health status. Whether these expectations are met by the diverse existing PN programs, which often have a strong focus on other tasks (e.g., increasing health literacy), has yet to be evaluated.
Objectives: Several patient factors have been described to influence access to optimal cancer care like socioeconomic factors or place of residence. In this study, we investigate whether data routinely collected in a clinical cancer registry can be used to identify populations of lung cancer patients with increased risk of not receiving optimal cancer care. Methods:We analysed data of 837 lung cancer patients extracted from the clinical cancer registry of a German university hospital. We compared patient populations by two indicators of optimal care, namely implementation of tumour board meeting recommendations as well as the timeliness of care.Results: There was a high rate of implementation of tumour board meeting recommendations of 94.4%. Reasons for non-implementation were mainly a patient's own wish or a worsening of the health situation. Of all patient parameters, only tumour stage was associated with the two optimal care indicators. Conclusion:Using routine data from a clinical cancer registry, we were not able to identify patient populations at risk of not getting optimal care and the implementation This is an open access article under the terms of the Creative Commons Attribution-NonCommercial-NoDerivs License, which permits use and distribution in any medium, provided the original work is properly cited, the use is non-commercial and no modifications or adaptations are made.
Zusammenfassung Ziel Es soll untersucht werden, welche Arten an Unterstützungsangeboten neben der direkten medizinisch-therapeutischen Versorgung für Betroffene der altersassoziierten Erkrankungen Lungenkrebs und Schlaganfall und deren Angehörige, in der Region Berlin, zur Verfügung stehen. In diesem Rahmen wurden auch relevante Unterstützungsthemen für diese Patientengruppen und Barrieren für die Nutzung von Unterstützungsangeboten aus der Perspektive von Experten der Versorgung betrachtet. Methodik Es erfolgte eine strukturierte Suche nach Unterstützungsangeboten, welche Lungenkrebs- und Schlaganfallpatienten und ihren Angehörigen im Umgang mit der neuen krankheitsbezogenen Lebenssituation in Berlin zur Verfügung stehen. Dafür wurden unterschiedliche Quellen, wie Internetrecherche und Printsuche genutzt sowie Experteninterviews und ein Gruppengespräch durchgeführt. Identifizierte Angebote wurden in Bezug auf ihre Zielgruppe verifiziert und Informationen per Fragebogen eingeholt. Die Experteninterviews und das Gruppengespräch wurden zusätzlich genutzt, um Unterstützungsthemen sowie Hürden der Nutzung von Angeboten aufzunehmen. Ergebnisse In Berlin wurden für Patienten mit Lungenkrebs und Schlaganfall und ihre Angehörigen 150 Unterstützungsangebote identifiziert. Diese bieten Unterstützung unter anderem in den Bereichen Informationsvermittlung und Beratung, Hilfe bei der Organisation und Koordination der neuen Lebenssituation sowie psychosoziale Hilfe. Als Hürden der Nutzung wurden unter anderem fehlende oder nicht an den Bildungsstand angepasste Informationen über Leistungsansprüche, die Unkenntnis des Unterstützungsangebots und räumliche Entfernung genannt. Schlussfolgerung Eine Reihe an Angeboten ist in Berlin vorhanden um unterschiedliche Unterstützungsbedarfe von Schlaganfall- und Lungenkrebspatienten und ihren Angehörigen abzudecken, welche aufgrund der neuen Gesundheits- und Lebenssituation entstehen können. Durch flächendeckende Information über dieses bestehende Angebot und eine regionale Verfügbarkeit kann die Nutzung von Unterstützung durch Betroffene optimiert werden.
Background Patient navigation programmes were introduced in the United States and recently gained interest in Germany, where the health care system is fragmented. Navigation programmes aim to decrease barriers to care for patients with age-associated diseases and complex care paths. Here we describe a feasibility study to evaluate a patient-oriented navigation model that was developed in a first project phase by integrating data about barriers to care, vulnerable patient populations and existing support services. Methods We designed a mixed-methods feasibility study that consists of two two-arm randomized controlled trials aligned with observational cohorts. The intervention group of the RCTs gets support by personal navigators for 12 months. The control group receives a brochure with regional support offers for patients and caregivers. The feasibility of the patient-oriented navigation model for two prototypic age-associated diseases, lung cancer and stroke, is evaluated with regard to its acceptance, demand, practicality and efficacy. This investigation includes process evaluation measures with detailed documentation of the screening and recruitment process, questionnaires about satisfaction with navigation, observant participation and qualitative interviews. Estimates of efficacy for patient-reported outcomes are obtained at three follow-up time points including satisfaction with care and health-related quality of life. Furthermore, we analyze health insurance data from patients of the RCT insured at a large German health insurance (AOK Nordost) to investigate heath care utilization, costs and cost effectiveness. Trial registration The study is registered at the German Clinical Trial Register (DRKS-ID: DRKS00025476).
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