How Can Cardiac Rehabilitation Promote Health Literacy? Results from a Qualitative Study in Cardiac Inpatients

After acute care of a cardiac event, cardiac rehabilitation helps future disease management. Patients with low health literacy have been shown to have fewer knowledge gains from rehabilitation and higher all-cause mortality after acute cardiac events. Cardiac rehabilitation may be the best channel to target population with low health literacy, yet research on this topic is limited. Consequently, the main aim of the current study was to identify patient perceptions about the health literacy domains that are needed for successful rehabilitation of patients attending German cardiac rehabilitation clinics after an acute cardiac event. Five focus group interviews with 25 inpatients (80% male, 20% female) were conducted at a cardiac rehabilitation clinic in Germany. Patients were eligible to participate if they had sufficient understanding of the German language and had no other debilitating diseases. Patients identified five domains of health literacy for rehabilitation success: knowledge about their health condition; being able to find and evaluate health-related information, being able to make plans and sticking to them, assumption of responsibility over one’s health and the ability to ask for and receive support. The results give an important insight into what patients perceive as important components of their cardiac rehabilitation, which can provide the basis for developing the health literacy of patients and how cardiac rehabilitation clinics respond to the recovery needs of their patients

Veränderung der Altersstruktur neuerkrankter Krebspatient:innen zwischen 2010 und 2022 in niedergelassenen Praxen

Krebs ist eine der häufigsten Todesursachen weltweit und wird im Jahr 2020 für fast 10 Millionen Todesfälle verantwortlich sein. Im selben Jahr wurden weltweit etwa 19 Millionen neue Krebsfälle diagnostiziert [1]. Die Inzidenz aller Krebsarten ist zwischen 1998 und 2012 in den meisten Ländern und in allen Altersgruppen weltweit gestiegen [2]. Zumindest in Europa, den USA und einem Teil Asiens entsprach dieser Trend jedoch den demografischen Veränderungen und der Alterung der Bevölkerung [3,4]. Das Krebsrisiko nimmt mit dem Alter zu, und mehr als 60% der Krebserkrankungen werden bei Menschen im Alter von 65 Jahren oder älter diagnostiziert [5]. Jüngste Studien deuten jedoch auf einen starken Anstieg der Inzidenz von Krebserkrankungen bei Erwachsenen unter 50 Jahren [6-15]. Bei jungen Menschen, bei denen Krebs diagnostiziert wird, ist die Krankheit zum Zeitpunkt der Diagnose oft weiter fortgeschritten als bei älteren Menschen, was zum Teil auf eine verzögerte Diagnose zurückzuführen ist [16]

Evaluation of two evidence-based decision aids for female BRCA1/2 mutation carriers in Germany: study protocol for a randomised controlled parallel-group trial

Background Women with BRCA1/2 mutations have a higher risk of developing breast and ovarian cancer compared to women of the general population. Various preventive options are available to deal with the increased risk of developing cancer. These include intensified breast cancer screening and risk-reducing bilateral mastectomy and salpingo-oophorectomy. The choice of a preventive option can lead to increased decisional conflict. To support these women in their decision-making process, two evidence-based decision aids were developed in an upstream research process and adapted to the German healthcare context. These will be evaluated within a randomised controlled trial (RCT) in terms of their effects on decision-making, women’s level of information and psychological outcome variables. Methods A sample of 310 women carrying BRCA1/2 mutations (A) without a history of cancer or (B) with a history of unilateral breast cancer who have received post-test genetic counselling will be enrolled. Upon study consent, women will be randomly assigned to either the intervention or the control group. All participants will receive standard care including a physician’s letter summarising the counselling content. After baseline data collection (t0), the intervention group receives the respective decision aid while the control group receives standard care only. The primary outcome variable assessed at a 3-month follow-up (t1) is the change of extent in decisional conflict (measured with the Decisional Conflict Scale). Secondary outcome variables comprise the stage of decision-making, self-reported symptoms of anxiety, depression and stress due to the genetic test result, and knowledge regarding cancer risks and preventive options. At t1, the extent of preparation for decision-making and acceptability of the decision aids will also be examined. Another secondary outcome variable assessed at 6-month follow-up (t2) is the extent of decision regret. Discussion These will be the first decision aids available for BRCA1/2 mutation carriers in Germany to be evaluated regarding their effectiveness and acceptability in clinical use within an RCT. Subsequently, they are to be integrated into the care concept of the centres of the German Consortium for Hereditary Breast and Ovarian Cancer and the affiliated breast centres. Trial registration {2a} DRKS DRKS00015823 . Retrospectively registered on 14 June 2019Medicine, Faculty ofNon UBCPopulation and Public Health (SPPH), School ofReviewedFacultyResearcherOthe

Genetic diagnostics for cancer prevention and treatment in hereditary predisposition for breast cancer: implementation in networked treatment

Aim/objective: Genes with moderate to high risk are involved in the development of hereditary breast cancer as are low-risk variants alone or in combination. Comprehensive evidence is now also available on the influence of non-genetic risk factors on breast cancer development. Deciphering the complex interrelationships can increase the chances for risk-adjusted prevention services and targeted treatment strategies for breast cancer patients and their family members. Material and methods: This article specifically addresses the challenges for the daily practice associated with these developments, which are manifold. Results and discussion: In the centers of the German Consortium for Familial Breast and Ovarian Cancer and the network of cooperating certified breast and gynecological cancer centers, state of the art genetic diagnostics are embedded in a knowledge-generating care concept. Core elements of this are the continuous improvement of treatment by result-oriented evaluation based on a comprehensive databank as well as continuous communication of this knowledge for improvement of the genetic competence of physicians and the health literacy of patients

Coping Self-Efficacy and Its Relationship with Psychological Morbidity after Genetic Test Result Disclosure: Results from Cancer-Unaffected BRCA1/2 Mutation Carriers

Women who are found to carry a BRCA1/2 pathogenic variant experience psychological distress due to an increased risk of breast and ovarian cancer. They may decide between different preventive options. In this secondary analysis of data collected alongside a larger randomized controlled trial, we are looking at 130 newly found BRCA1/2 pathogenic variant carriers and how their coping self-efficacy immediately after genetic test result disclosure is related to their psychological burden and status of preventive decision making. Participants received the Coping Self-Efficacy Scale, the Hospital Anxiety and Depression Scale, the Impact of Event Scale, the Decisional Conflict Scale, and the Stage of Decision-Making Scale after positive genetic test result disclosure. We found that women with higher coping self-efficacy showed fewer symptoms of anxiety or depression and were less affected by receiving the genetic test result in terms of post-traumatic stress. However, coping self-efficacy had no relationship with any decision-related criteria, such as decisional conflict or stage of decision making. This shows that despite its buffering capacity on psychological burden, possessing coping self-efficacy does not lead to more decisiveness in preference-sensitive decisions

Nurse-led decision coaching by specialized nurses for healthy BRCA1/2 gene mutation carriers - adaptation and pilot testing of a curriculum for nurses: a qualitative study

Background: Women with BRCA1/2 mutations are at high risk to develop breast and ovarian cancer. To support these women to participate in shared decision-making, structured nurse-led decision coaching combined with an evidence-based decision aid may be employed. In preparation of the interprofessional randomized controlled trial to evaluate a decision coaching program to support preventive decisions of healthy female BRCA 1/2 gene mutation carriers (EDCP-BRCA), we adapted and piloted an existing training program for specialized nurses and included elements from an existing physician communication training. Methods: The training was adapted according to the six-step-approach for medical curriculum development. The educational design is based on experience- and problem-based learning. Subsequently, we conducted a qualitative pilot study. Nurses were recruited from six German centers for familial breast and ovarian cancer. The acceptability and feasibility were assessed by structured class observations, field notes and participants' feedback Data were analyzed using qualitative content analysis. The training was revised according to the results. Due to the COVID-19 pandemic, the patient intervention was adapted as a virtual coaching and a brief additional training for nurses was added. Results: The training consists of two modules (2 + 1 day) that teach competences in evidence-based medicine and patient information, (risk) communication and decision coaching. One pilot test was conducted with six nurses of which three were specialized and experienced in patient counselling. A final set of eight main categories was derived from the data: framework conditions; interaction; schedule, transparency of goals, content, methods, materials and practical relevance and feasibility. Overall, the training was feasible and comprehensible. Decision coaching materials were awkward to handle and decision coaching role plays were set too short Therefore, materials will be sent out in advance and the training was extended. Conclusions: Specialized nurses are rarely available and nurse-led counselling is not routinely implemented in the centers of familial breast and ovarian cancer. However, training of less qualified nurses seems feasible. Decision coaching in a virtual format seems to be a promising approach. Further research is needed to evaluate its feasibility, acceptability and effectiveness

DNVF Memorandum Health Literacy (Part 2) – Operationalisation and Measuring of Health Literacy from a Health Services Research Perspective

Stock S, Isselhard A, Junger S, et al. DNVF Memorandum Gesundheitskompetenz (Teil II) – Operationalisierung und Messung von Gesundheitskompetenz aus Sicht der Versorgungsforschung. Gesundheitswesen. 2022;84(4): e26-e41.The "DNVF Memorandum Health Literacy (Part 2): Operationalization and Measurement of Health Literacy from the Perspective of Health Services Research" of the German Network for Health Services Research represents the continuation of the memorandum "DNVF Memorandum Health Literacy (Part 1): Background, Subject and Issues in Health Services Research". In addition to the general requirements for the measurement of health literacy, this memorandum also deals with the specific requirements, such as the differentiation of health literacy from related constructs, the differences between performance-based and self-assessment methods, the differences between generic and specific instruments, the use of screening instruments, and the measurement of health literacy in special populations. Furthermore, special considerations about the measurement of digital health literacy, potentials of qualitative and participatory research approaches as well as research ethics in the measurement of health literacy will be elaborated on. A special emphasis is placed on practical relevance for health services researchers. Finally, the authors will give an outlook on challenges and research desiderata in connection with the measurement of health literacy in the context of health services research. The Author(s). This is an open access article published by Thieme under the terms of the Creative Commons Attribution-NonDerivative-NonCommercial-License, permitting copying and reproduction so long as the original work is given appropriate credit. Contents may not be used for commercial purposes, or adapted, remixed, transformed or built upon. (https://creativecommons.org/licenses/by-nc-nd/4.0/).Das vorliegende „DNVF Memorandum Gesundheitskompetenz (Teil 2) – Operationalisierung und Messung von Gesundheitskompetenz aus Sicht der Versorgungsforschung“ des Deutschen Netzwerks Versorgungsforschung e.V. (DNVF) stellt die Fortführung des Memorandums „DNVF Memorandum Gesundheitskompetenz (Teil 1) – Hintergrund, Gegenstand und Fragestellungen in der Versorgungsforschung“ dar. Neben den allgemeinen Anforderungen an die Messung der Gesundheitskompetenz, beschäftigt sich dieses Memorandum auch mit den speziellen Anforderungen, wie die Abgrenzung zu verwandten Konstrukten, den Unterschieden zwischen performanzbasierten und Selbsteinschätzungsverfahren, den Unterschieden zwischen generischen und spezifischen Instrumenten, dem Einsatz von Screeninginstrumenten sowie der Messung der Gesundheitskompetenz bei speziellen Personengruppen. Weiterhin werden Besonderheiten bei der Messung der digitalen Gesundheitskompetenz, Potenziale qualitativer und partizipativer Forschungszugänge sowie forschungsethische Gesichtspunkte bei der Messung der Gesundheitskompetenz erarbeitet. Ein besonderer Wert wird auf den Praxisbezug gelegt, der am Ende der jeweiligen Abschnitte mit einem Fazit für die Versorgungsforschung aufgegriffen wird. Abschließend wird einen Blick auf Herausforderungen und Forschungsdesiderate im Zusammenhang mit der Messung von Gesundheitskompetenz im Rahmen der Versorgungsforschung geworfen