What do people with lung cancer and stroke expect from patient navigation?: A qualitative study in Germany

Objective This qualitative study investigated patients' needs and wishes in relation to patient navigation. Design A 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. Setting Interviewees were sought in the Berlin metropolitan area of Germany in academic university hospitals, in rehabilitation clinics and through self-help organisations. Participants The sample consisted of individuals diagnosed with lung cancer (n=20) or stroke (n=20). Results From 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. Conclusion For 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

Can routine register data be used to identify vulnerable lung cancer patients of suboptimal care in a German comprehensive cancer centre?

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 of guideline-conform care appeared to be very high in this setting. However, limitations were the ambiguity of optimal care indicators and availability of parameters predictive for patients' vulnerability.Clinical epidemiolog

Structured Collection of Data on Support Offers for Lung Cancer and Stroke Patients in Berlin

ObjectivesThe aim of this study was to investigate available offers of support for stroke and lung cancer patients and their caregivers in the Berlin region besides direct medical or therapeutic care and to identify barriers in the use of available support from the perspective of care experts. MethodsA structured search of different sources, including an internet search, print information as well as interviews with experts and a group discussion, was conducted on support services available to lung cancer and stroke patients and their caregivers in Berlin for managing their altered health and life situation. Target groups of identified offers were verified and further information was gathered by a questionnaire. Further, barriers for utilization of support services were analyzed from conducted interviews and the group discussion with health care experts. ResultsA total of 150 support services were identified for lung cancer and stroke patients and their caregivers in Berlin. There were many different forms of such offers, including, but not limited to, providing information and counseling, helping with the organization and coordination of the new life situation as well as giving psychosocial support. Missing information or information that was not adjusted to the patients' education level about care entitlements, lack of knowledge about as well as spatial distance to facilities were stated as barriers for utilization. ConclusionsA variety of support services is available in Berlin for lung cancer and stroke patients and their caregivers regarding different needs that might arise from their altered health and living situation. Providing information on existing offers more broadly to the target group and improving local availability may optimize utilization of such services by patients.Clinical epidemiolog