OBJECTIVES:To provide an overview of existing interactive web-based educational tools and decision aids for patients with advanced cancer and to evaluate their development process, content, feasibility, usability, and effectiveness. METHODS:Systematic literature search from inception to November 2023; screening with Covidence software; narrative analysis of results and quality assessment with the SUNDAE checklist. RESULTS:Sixteen web-based tools were identified: Seven for breast cancer, six for other specific cancers, and three for mixed populations. Studies predominantly used literature reviews, focus groups, and/or pre-existing tools for the development. The tools were heterogeneous and not all integrated aspects of end-of-life care. User tests included controlled trials, prospective interventional cohort studies, and a retrospective observational study, involving a total of 6192 patients. Results showed partially low adoption and infrequent use. Feasibility and usability were positively rated with high rates of user satisfaction. Preparation for and involvement in decision-making was partially supported by increased knowledge and improved doctor-patient relationships. Effects on involvement and self-efficacy in decision-making, participation, and distress were uncertain. Effects on quality of life, hope, anxiety, engagement in palliative care/advance directives, and survival were not found. CONCLUSIONS:Despite high user satisfaction and adequate feasibility and usability, the evidence for other outcomes is diverse and low for long-term implementation. Tools are very heterogeneous in cancer entities and content. Although targeting patients with advanced cancer not all tools integrate aspects of palliative care and end-of-life. PRACTICE IMPLICATIONS:In advanced cancer care, patient involvement in decision-making is complex. Web-based solutions are promising because of easy accessibility and dissemination and the ability to adapt information to patients' needs and new treatment developments. Still, only a few evidence-based web-based educational tools and decision aids are available. Filling this gap is essential to empower patients to make informed and goal-concordant treatment decisions.
BackgroundThe timely initiation of end-of-life (EOL) conversations is considerered best practice for patients with advanced cancer and therefore recommended in oncological guidelines. General practitioners (GPs) play a key role in the coordination of EOL-care and often claim that they have also the responsibility to initiate the necessary conversations. Nonetheless, the content of these conversations is rarely a subject of communication between GPs and oncology specialists but crucial for timely integration of palliative care. The aim of this study is to explore the GPs' perspectives on initiation and conduction of EOL-conversations in patients with metastatic lung cancer and how they perceive the interaction with the oncologists of a cancer center.MethodsQualitative design with in-depth interviews with GPs that refer patients with metastatic lung cancer to a cancer center; thematic analysis following Braun and Clarke.ResultsWe identified three main themes: timing and conduction of EOL-conversations, factors influencing EOL-conversations, and modes of GP-oncologist interaction. All themes showed important and increasing challenges in regard to communication strategies or procedures within the cancer center and between general practitioners and oncologists. Aside from the elucidated challenges of EOL-communication, new problems arise from the difficulties in keeping pace with advances in oncology and the increasing prognostic uncertainty. Additionally, the lack of standardized communication in EOL-topics between GPs and oncologists is underlined. Options in the mode of interaction include written information in reports or digital platforms and direct phone calls.ConclusionsBecause of the growing complexity in modern oncology, strategies for improvement in GP-oncologist interaction have to consider information about therapeutic advances and prognosis of patients. The increasing prognostic uncertainty hazards the adequate provision and conduction of EOL-conversations and thus, the timely integration of palliative care. As a consequence, a trustful personal interaction that includes direct contact via phone calls between GPs and oncologists should be encouraged.
BACKGROUND:Guidelines recommend to discuss the treatment and care goals of patients with advanced cancer in alignment with their values and preferences, yet this approach is often not adequately implemented in hospitals. To explore the personal values of patients with metastatic lung cancer and how they communicate them to physicians, a mixed-methods study was conducted at a German University Lung Cancer Center. METHODS:The study included quantitative data from 66 patients with metastatic lung cancer using the Human Values Scale, a group comparison after propensity score matching with the German cohort from the 9th European Social Survey, semi-structured in-depth interviews (n = 17), qualitative content analysis, and integration of the data using side-by-side display. RESULTS:The quantitative analysis showed that patients prioritized the value dimensions of self-transcendence (universalism, benevolence; p = 0.02) and openness to change (self-direction, stimulation; p = 0.03), with a shift toward stronger self-direction in more advanced disease. In contrast, values related to conservation (conformity, tradition, security; p = 0.04) and self-enhancement (power, achievement; p = 0.02) were less important. Despite these stated preferences, qualitative data revealed that personal values and existential concerns were largely overlooked in clinical encounters. Patients often accepted physicians' treatment recommendations without question, suggesting a gap in addressing their values and preferences. CONCLUSIONS:Our findings highlight the need for physicians to take a proactive role in discussing patient values and empowering them in decision-making. These insights can inform the development of value assessment tools and interventions to improve shared decision-making and goal-concordant care.
Purpose Guidelines recommend the discussion of treatment and care goals of patients with advanced cancer according to their values and preferences. Little is known about the value system of these patients and how to address them in the hospital setting. Methods Convergent mixed-methods design: collection of quantitative data of patients with advanced lung cancer from a German University Hospital (n = 66) using the Human Values Scale, group comparison after a propensity score matching with the German cohort of the 9th European Social Survey, semi-structured interviews (n = 17) and qualitative content analysis, integration of data using side-by-side display. Results Quantitative analysis shows that lung cancer patients prioritize significantly more the value dimensions of self-transcendence (universalism, benevolence; p = .02) and openness to change (self-direction, stimulation; p = .03). While values of conservation (conformity, tradition, security; p = .04) and self-enhancement (power, achievement; p = .02) are notably less important. Besides the affirmation of self-direction, qualitative data, contrastingly, shows strong “conformity” with medical treatment decisions and the importance of “security”, while revealing the systematic neglect of values in patient-physician conversations. Conclusions The values guiding lung cancer patients differ from the general population. Despite the expressed importance of self-direction strong conformity arises in regard to medical treatment decisions. This may show the need of feeling secure in a complex and uncertain setting but has also the risk of over-treatment, hazarding goal-concordant care and the timely integration of palliative care, particularly when considering the neglect of values exposed.
Background Shared decision-making (SDM), which increases the patient’s well-being, adherence, and success of treatment, is becoming increasingly important in medicine and especially in oncology. To empower patients to participate more actively in consultations with their physicians decision aids have been developed. In non-curative settings, such as the treatment of advanced lung cancer, decisions differ substantially from the curative setting, as uncertain gains in terms of survival outcomes and quality of life have to be weighed against the severe side effects of treatment regimens. There is still a lack of tools developed and implemented for such specific settings in cancer therapy that support shared decision-making. The aim of our study is to evaluate the effectiveness of the HELP decision aid. Methods The HELP-study is designed as a randomized, controlled, open monocenter trial with two parallel groups. The intervention consists of the use of the HELP decision aid brochure, accompanied by a decision coaching session. The primary endpoint is clarity of personal attitude as operationalized by the Decisional Conflict Scale (DCS) after the decision coaching. Randomization will be performed as stratified block randomization according to the characteristic of preferred decision-making at baseline with a 1:1 allocation. The participants in the control group get usual care, i.e., the doctor-patient conversation takes place without preliminary coaching and deliberation about their preferences and goals. Discussion Developing decision aids (DA) for (lung) cancer patients with limited prognosis should empower patients to address these aspects and include information about “Best Supportive Care” as a treatment option. Using and implementing the decision aid HELP can not only give patients the possibility to include their personal wishes and values in the decision-making process, but also raise the awareness of shared decision-making itself among these patients and their physicians. Trial registration German Clinical Trial Register DRKS00028023. Registered on 8 February 2022.
Purpose Oncological societies advocate the continuity of care, specialized communication, and early integration of palliative care. To comply with these recommendations, an interprofessional, longitudinally-structured communication concept, the Milestone Communication Approach (MCA), was previously developed, implemented, and evaluated. Our research question is: what are possible explanations from the patient perspective for prognosis and advance care planning being rarely a topic and for finding no differences between MCA and control groups concerning distress, quality of life, and mood? Methods A pragmatic epistemological stance guided the study. A mixed-methods design was chosen including a pragmatic randomized trial ( n = 171), qualitative interviews with patients ( n = 13) and caregivers ( n = 12), and a content analysis (133 milestone conversations, 54 follow-up calls). Data analysis involved the pillar integration process. Results Two pillar themes emerged: 1 “approaching prognosis and advance care planning”; 2 “living with a life-threatening illness”. Information on prognosis seemed to be offered, but patients’ reactions were diverse. Some patients have to deal with having advanced lung cancer while nonetheless feeling healthy and seem not to be ready for prognostic information. All patients seemed to struggle to preserve their quality of life and keep distress under control. Conclusion Attending to patients’ questions, worries and needs early in a disease trajectory seems key to helping patients adjust to living with lung cancer. If necessary clinicians should name their predicament: having to inform about prognosis versus respecting the patients wish to avoid it. Research should support better understanding of patients not wishing for prognostic information to successfully improve communication strategies. Trial registration Registration: German Clinical Trial Register No. DRKS00013649, registration date 12/22/2017, ( https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00013649 ) and No. DRKS00013469, registration date 12/22/2017, ( https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00013469 ).
Background An innovative patient-centred interprofessional communication concept with advanced lung cancer patients (Heidelberg Milestone Communication Approach, MCA) has been developed and implemented. Role changes and interprofessional communication are challenging in a busy outpatient oncology service. The aim of the study was to present attitudes to interprofessional collaboration of professions in thoracic oncology during the implementation of MCA and to explore factors and experiences healthcare team members associate with its implementation. Methods In a longitudinal study, 3 of the 4 subscales of the validated German translation of the University of the West of England Interprofessional Questionnaire (UWE-IP-D) were collected prior to implementation of MCA (t0) with follow-up data collections at 4 months (t1), 10 months (t2) and 17 months (t3). Descriptive analysis included calculating subscale sum scores and categorizing each subscale into positive, neutral and negative attitudes. Interviews and focus groups on implementation and interprofessional collaboration in the context of MCA were conducted with healthcare staff. The topics were analysed deductively, guided by the Professional Interactions factor of the Tailored Implementation for Chronic Diseases (TICD) framework. Results The survey with 87 staff (44 nurses, 13 physicians, 12 psycho-social staff, 7 therapists, and 11 others) participating at least once found heterogeneous attitudes. ‘Communication and Teamwork’ and ‘Interprofessional Relationships’ were characterized by primarily positive attitudes. Neutral attitudes to ‘Interprofessional Interaction’ were indicated by the majority of respondents. There were no differences between collection times. Fifteen staff members participated in the interviews and focus groups. The main interprofessional interaction factors associated with implementation concerned the knowledge of the MCA and the impact of the intervention on team roles, on information sharing and on transfer processes between wards. Adaptive processes led to a shift in the perception of responsibilities and interprofessional collaboration. Conclusions Positive experiences and potential shortfalls in the implementation were observed. Future introductions of interprofessional communication concepts require further activities which should address the attitudes of healthcare professionals towards interprofessional care. Trial registration DRKS00013469 / Date of registration: 22/12/2017.
This study investigates whether the imbalance of supply and competitors on the partner market impacts the stability of marital and non-marital unions. Using the first six waves of the German Family Panel (pairfam) we find partner market effects on the proposal of a separation and on separation itself. Women’s partner market opportunities impact union stability depending on the duration of the union. The impact of men’s partner market opportunities on union stability depends on living arrangement with the effect being stronger for cohabiting than for married couples. Whether or not a context provides opportunities for (alternative) partner choice and for separation depends on using adequate bridging assumptions about individuals’ preferences for a (new) partner’s traits.
Abstract Background To address the support needs of newly diagnosed patients with lung cancer with limited prognosis, the Milestone Communication Approach (MCA) was developed and implemented. The main elements of the MCA are situation‐specific conversations along the disease trajectory conducted by an interprofessional tandem of physician and nurse. The aim of the study was to evaluate the effects of MCA on addressing support needs, quality of life, and mood as compared with standard oncological care. Patients and Methods A randomized trial was conducted with baseline assessment and follow‐up assessments at 3, 6, and 9 months in outpatients with newly diagnosed lung cancer stage IV at a German thoracic oncology hospital. The primary outcome was the Health System and Information Needs subscale of the Short Form Supportive Care Needs Survey (SCNS‐SF34‐G) at 3‐month follow‐up. Secondary outcomes included the other subscales of the SCNS‐SF34‐G, the Schedule for the Evaluation of Individual Quality of Life, the Functional Assessment of Cancer Therapy lung module, the Patient Health Questionnaire for Depression and Anxiety, and the Distress Thermometer. Results At baseline, 174 patients were randomized, of whom 102 patients (MCA: n = 52; standard care: n = 50) provided data at 3‐month follow‐up. Patients of the MCA group reported lower information needs at 3‐month follow‐up (mean ± SD, 33.4 ± 27.5; standard care, 43.1 ± 29.9; p = .033). No effects were found for secondary outcomes. Conclusion MCA lowered patient‐reported information needs but did not have other effects. MCA contributed to tailored communication because an adequate level of information and orientation set the basis for patient‐centered care. Implications for Practice By addressing relevant issues at predefined times, the Milestone Communication Approach provides individual patient‐centered care facilitating the timely integration of palliative care for patients with a limited prognosis. The needs of patients with lung cancer must be assessed and addressed throughout the disease trajectory. Although specific topics may be relevant for all patients, such as information about the disease and associated health care, situations of individual patients and their families must be considered. Additionally, using the short form of the Supportive Care Needs Survey in clinical practice to identify patients’ problems might support individually targeted communication and preference‐sensitive care.
Purpose The purpose of this study is to investigate changes over time in quality of life (QoL) in incurable lung cancer patients and the impact of determinants like molecular alterations (MA). Methods In a prospective, longitudinal, multicentric study, we assessed QoL, symptom burden, psychological distress, unmet needs, and prognostic understanding of patients diagnosed with incurable lung cancer at the time of the diagnosis (T0) and after 3 (T1), 6 (T2) and 12 months (T3) using validated questionnaires like FACT-L, National Comprehensive Cancer Network (NCCN) Distress Thermometer (DT), PHQ-4, SCNS-SF-34, and SEIQoL. Results Two hundred seventeen patients were enrolled, 22 (10%) with reported MA. QoL scores improved over time, with a significant trend for DT, PHQ-4, and SCNS-SF-34. Significant determinants for stable or improving scores over time were survival > 6 months, performance status at the time of diagnosis, and presence of MA. Patients with MA showed better QoL scores (FACT-L at T1 104.4 vs 86.3; at T2 107.5 vs 90.0; at T3 100.9 vs 92.8) and lower psychological distress (NCCN DT at T1 3.3 vs 5; at T2 2.7 vs 4.5; at T3 3.7 vs 4.5; PHQ-4 at T1 2.3 vs 4.1; at T2 1.7 vs 3.6; at T3 2.2 vs 3.6), but also a worsening of the scores at 1 year and a higher percentage of inaccurate prognostic understanding (27 vs 17%) compared to patients without MA. Conclusion Patients with tumors harboring MA are at risk of QoL deterioration during the course of the disease. Physicians should adapt their communication strategies in order to maintain or improve QoL.
Der Nationale Krebsplan empfiehlt bei der Behandlung von Patienten mit begrenzter Prognose neben der Kontinuität der Versorgung auch spezialisierte Kommunikation und die frühe Integration von Palliative Care (PC). Die Heidelberger Meilenstein-Kommunikation (HeiMeKOM) ist eine komplexe Intervention und beinhaltet strukturierte Gespräche im Arzt-Pflege-Tandem gemeinsam mit Patienten und Angehörigen zu Hochbelastungszeitpunkten im Erkrankungsverlauf. Prozesse und Ergebnisse von HeiMeKOM sollten evaluiert werden. In einem Multiphase-Mixed-Methods-Design wurden eine Evaluation mit folgenden Methoden durchgeführt: Interviews mit Pflegenden (n = 12), Fokusgruppen mit Ärzten (n = 10) in Phase 1; eine Dokumentenanalyse der Verlaufsbögen (n = 302) sowie Interviews mit Patienten und Angehörigen von HeiMeKOM (n = 13) in Phase 2 und eine randomisierte Studie zu Unterstützungsbedarfen (primäres Outcome), Lebensqualität, Angststörung und Depressivität sowie Distress (n = 174) in Phase 3. Relevante Implementierungsfaktoren wurden in Phase 1 identifiziert und in Phase 2 berücksichtigt. Die qualitativen Interviews mit Patienten und Angehörigen zeigen, dass HeiMeKOM diese in ihrer Erkrankung hinsichtlich Verstehbarkeit, Handhabbarkeit und Bedeutsamkeit des eigenen Lebens unterstützt. Patienten mit HeiMeKOM-Intervention zeigten nach 3 Monaten weniger Unterstützungsbedarfe (n = 52, M = 33,4, SD = 27,5) als Patienten der Kontrollgruppe (n = 50, M = 43,1, SD = 29,9; p = 0,033; Effektstärke: Cohens d = −0,0,37). Patientenorientierte Kommunikation im Sinne des HeiMeKOM-Konzepts ist im Praxisalltag umsetzbar und wirkungsvoll. Die nachhaltige Finanzierung von Gesprächen ist Voraussetzung, um die Kommunikationsbedarfe von Patienten mit limitierter Prognose erfüllen zu können.
Der Beitrag informiert uber ein am Institut fur Soziologie der Universitat Heidelberg durchgefuhrtes Forschungsprojekt uber den Partnermarkt in Deutschland. Nach einer Erlauterung der theoretischen und methodischen Grundlagen der im Projekt entwickelten Partnermarktindikatoren werden erste Untersuchungsergebnisse vorgestellt. Dabei geht es zunachst um die Deskription des Partnermarkts mit Blick auf dessen Veranderung im Lebensverlauf, dessen Entwicklung in der Kohortenabfolge sowie auf regionale Unterschiede. Anschliesend werden Ergebnisse uber die Implikationen eines unausgewogenen Partnermarkts fur die Pravalenz und Inzidenz von Paarbeziehungen, fur die Alters- und Bildungshomogamie, fur die interethnische Partnerwahl und fur die Stabilitat von Paarbeziehungen diskutiert.