Using decision tree analysis to identify population groups at risk of subjective unmet need for assistance with activities of daily living.

BACKGROUND: Identifying predictors of subjective unmet need for assistance with activities of daily living (ADL) is necessary to allocate resources in social care effectively to the most vulnerable populations. In this study, we aimed at identifying population groups at risk of subjective unmet need for assistance with ADL and instrumental ADL (IADL) taking complex interaction patterns between multiple predictors into account. METHODS: We included participants aged 55 or older from the cross-sectional German Health Update Study (GEDA 2019/2020-EHIS). Subjective unmet need for assistance was defined as needing any help or more help with ADL (analysis 1) and IADL (analysis 2). Analysis 1 was restricted to participants indicating at least one limitation in ADL (N = 1,957). Similarly, analysis 2 was restricted to participants indicating at least one limitation in IADL (N = 3,801). Conditional inference trees with a Bonferroni-corrected type 1 error rate were used to build classification models of subjective unmet need for assistance with ADL and IADL, respectively. A total of 36 variables representing sociodemographics and impairments of body function were used as covariates for both analyses. In addition, the area under the receiver operating characteristics curve (AUC) was calculated for each decision tree. RESULTS: Depressive symptoms according to the PHQ-8 was the most important predictor of subjective unmet need for assistance with ADL. Further classifiers that were selected from the 36 independent variables were gender identity, employment status, severity of pain, marital status, and educational level according to ISCED-11. The AUC of this decision tree was 0.66. Similarly, depressive symptoms was the most important predictor of subjective unmet need for assistance with IADL. In this analysis, further classifiers were severity of pain, social support according to the Oslo-3 scale, self-reported prevalent asthma, and gender identity (AUC = 0.63). CONCLUSIONS: Reporting depressive symptoms was the most important predictor of subjective unmet need for assistance among participants with limitations in ADL or IADL. Our findings do not allow conclusions on causal relationships. Predictive performance of the decision trees should be further investigated before conclusions for practice can be drawn.

Development of a patient-oriented navigation model for patients with lung cancer and stroke in Germany.

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.

[Structured Collection of Data on Support Offers for Lung Cancer and Stroke Patients in Berlin]. / Strukturierte Erfassung von Unterstützungsangeboten für Lungenkrebs- und Schlaganfallbetroffene in Berlin.

OBJECTIVES: The 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. METHODS: A 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. RESULTS: A 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. CONCLUSIONS: A 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.

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.

Feasibility of a patient-oriented navigation programme for patients with lung cancer or stroke in Germany: Protocol of the CoreNAVI study.

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).

Patient Navigation-Who Needs What? Awareness of Patient Navigators and Ranking of Their Tasks in the General Population in Germany.

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.

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.

Using others' experiences. Cancer patients' expectations and navigation of a website providing narratives on prostate, breast and colorectal cancer.

OBJECTIVE: To understand what cancer patients expect and may learn from other patients' experiences, as analyzed and sorted for presentation on a website called krankheitserfahrungen.de (meaning "illness experiences"). METHODS: Mixed methods approach including log file analyses, survey data analyses and thematic analysis of focus group discussions. RESULTS: Users highly valued the wide range of patient experiences presented. The academic leadership of krankheitserfahrungen.de made them trust the information quality. Reading, watching and listening to other cancer patients' experiences gave users a feeling of hope and confidence. Searching for persons with similar experiences was a major way of navigating the website. CONCLUSION: Patient narratives as presented on krankheitserfahrungen.de provide a helpful resource, supporting cancer patients' engagement with their disease. Having access to such research-informed accounts of everyday cancer experiences was seen as a great contribution to existing available patient information. PRACTICE IMPLICATIONS: When health information websites include experiences, they should adhere to quality standards of qualitative research and encompass a wide range, so that users are able to find patients similar to themselves. Filter options are a helpful tool. A mix of written text and videos is beneficial, as users have different preferences. The inclusion of patient photographs and video interviews facilitates authenticity and closeness.