[Need for Further Training for Function Holders of Cancer Self-Help Organizations]. / Bedarf an Fortbildung für Funktionsträger*innen von Krebs-Selbsthilfeorganisationen.

OBJECTIVE: As part of the Center for Competence Development in Cancer Self-Help at the University Medical Center Freiburg, an analysis of the need for training and education was conducted among the member organizations of the House of the Cancer Patient Support Associations of Germany (HKSH). METHODS: The online survey took place from February to April 2021 and was completed by functionaries at various organization levels and group members. In a questionnaire developed together with self-help representatives 19 potential training topics were ranked in terms of importance. In addition, it was indicated whether the respective topic was perceived as sufficiently covered by already existing qualification offers. Using a forced-choice approach, respondents finally named the five most important topics for them. RESULTS: The topics that a particularly high proportion of the N=293 respondents identified as "very important" and which at the same time were perceived as inadequately addressed by existing qualification offers were dealing with stressful issues (e. g. relapse, metastases, dying), recruiting new members and successors for association tasks, socio-legal aspects, as well as conversational and communication skills. In the prioritization of the five most important topics, the first three topics were named again, with dealing with excessive demands and assistance for self-care/burnout prevention following in fourth place and in the fifth place the topics of knowledge in dealing with complementary medicine and knowledge of professional care structures in oncology, each with the same number of votes. DISCUSSION: There was a clear need for a broad range of training topics that goes beyond the existing offers of the cancer self-help organizations. Through the needs analysis, the topics could be identified which are prioritized as training topics across all ten member organizations of the HKSH. CONCLUSION: Based on this needs assessment, the respective training courses can be prioritized and implemented in cooperation with the patient representatives of the HKSH.

Integrated, cross-sectoral psycho-oncology (isPO): a new form of care for newly diagnosed cancer patients in Germany.

BACKGROUND: The annual incidence of new cancer cases has been increasing worldwide for many years, and is likely to continue to rise. In Germany, the number of new cancer cases is expected to increase by 20% until 2030. Half of all cancer patients experience significant emotional and psychosocial distress along the continuum of their disease, treatment, and aftercare, and also as long-term survivors. Consequently, in many countries, psycho-oncological programs have been developed to address this added burden at both the individual and population level. These programs promote the active engagement of patients in their cancer therapy, aftercare and survivorship planning and aim to improve the patients' quality of life. In Germany, the "new form of care isPO" ("nFC-isPO"; integrated, cross-sectoral psycho-oncology/integrierte, sektorenübergreifende Psycho-Onkologie) is currently being developed, implemented and evaluated. This approach strives to accomplish the goals devised in the National Cancer Plan by providing psycho-oncological care to all cancer patients according to their individual healthcare needs. The term "new form of care" is defined by the Innovation Fund (IF) of Germany's Federal Joint Committee as "a structured and legally binding cooperation between different professional groups and/or institutions in medical and non-medical care". The nFC-isPO is part of the isPO project funded by the IF. It is implemented in four local cancer centres and is currently undergoing a continuous quality improvement process. As part of the isPO project the nFC-isPO is being evaluated by an independent institution: the Institute for Medical Sociology, Health Services Research, and Rehabilitation Science (IMVR), University of Cologne, Germany. The four-year isPO project was selected by the IF to be eligible for funding because it meets the requirements of the federal government's National Cancer Plan (NCP), in particular, the "further development of the oncological care structures and quality assurance" in the psycho-oncological domain. An independent evaluation is required by the IF to verify if the new form of care leads to an improvement in cross-sectoral care and to explore its potential for permanent integration into the German health care system. METHODS: The nFC-isPO consists of six components: a concept of care (C1), care pathways (C2), a psycho-oncological care network (C3), a care process organization plan (C4), an IT-supported documentation and assistance system (C5) and a quality management system (C6). The two components concept of care (C1) and care pathways (C2) represent the isPO clinical care program, according to which the individual cancer patients are offered psycho-oncological services within a period of 12 months after program enrolment following the diagnosis of cancer. The remaining components (C3-C6) represent the formal-administrative aspects of the nFC-isPO that are intended to meet the legally binding requirements of patient care in the German health care system. With the aim of systematic development of the nFC-isPO while at the same time enabling the external evaluators to examine its quality, effectiveness and efficiency under conditions of routine care, the project partners took into consideration approaches from translational psycho-oncology, practice-based health care research and program theory. In order to develop a structured, population-based isPO care program, reference was made to a specific program theory, to the stepped-care approach, and also to evidence-based guideline recommendations. RESULTS: The basic version, nFC-isPO, was created over the first year after the start of the isPO project in October 2017, and has since been subject to a continuous quality improvement process. In 2019, the nFC-isPO was implemented at four local psycho-oncological care networks in the federal state North Rhine-Westphalia, in Germany. The legal basis of the implementation is a contract for "special care" with the German statutory health insurance funds according to state law (§ 140a SCB V; Social Code Book V for the statutory health insurance funds). Besides the accompanying external evaluation by the IMVR, the nFC-isPO is subjected to quarterly internal and cross-network quality assurance and improvement measures (internal evaluation) in order to ensure continuous quality improvement process. These quality management measures are developed and tested in the isPO project and are to be retained in order to ensure the sustainability of the quality of nFC-isPO for later dissemination into the German health care system. DISCUSSION: Demands on quality, effectiveness and cost-effectiveness of in the German health care system are increasing, whereas financial resources are declining, especially for psychosocial services. At the same time, knowledge about evidence-based screening, assessment and intervention in cancer patients and about the provision of psychosocial oncological services is growing continuously. Due to the legal framework of the statutory health insurance in Germany, it has taken years to put sound psycho-oncological findings from research into practice. Ensuring the adequate and sustainable financing of a needs-oriented, psycho-oncological care approach for all newly diagnosed cancer patients, as required by the NCP, may still require many additional years. The aim of the isPO project is to develop a new form of psycho-oncological care for the individual and the population suffering from cancer, and to provide those responsible for German health policy with a sound basis for decision-making on the timely dissemination of psycho-oncological services in the German health care system. TRIAL REGISTRATION: The study was pre-registered at the German Clinical Trials Register (https://www.drks.de/DRKS00015326) under the following trial registration number: DRKS00015326 ; Date of registration: October 30, 2018.

Designing a Patient-Friendly Website for Newly Diagnosed Cancer Patients with the Participatory Health Research Approach.

High-quality and user-friendly patient information material (PIM) is essential for understanding and accepting a new care programme. When optimising the PIM of the integrated, cross-sectoral psycho-oncological (isPO) care programme, the design of the fifth element of the patient information strategy-the patient-friendly website-was still pending. In this paper, the iterative design process of the patient-friendly isPO website is described. We applied the participatory health research (PHR) approach to enable high levels of participation of its respective end-users (e.g., cancer survivors), service providers, and experts. The design included six steps: (1) initiation, (2) planning, (3) initial idea exploration, (4) creation of a first working version, (5) three optimisation loops, and (6) dissemination. An exploratory mixed-methods design has been used. Qualitative data collection included document analysis, interviews, and participatory action research (PAR) loops with focus groups. Finally, the quality of the newly designed website was quantitatively assessed with the UPIM-Check, a user-friendly instrument for assessing and optimising PIM. The PHR approach was indispensable for the design of our needs-oriented, patient-friendly website. Participants' high levels of participation strongly contributed to the products' quality. The final descriptive statistical evaluation shows that the final website was rated very good on average by its end-users.

[DNVF Memorandum Health Services Research in Oncology]. / DNVF-Memorandum Versorgungsforschung in der Onkologie.

Health services research in oncology deals with all situations which cancer patients face. It looks at the different phases of care, i. e. prevention / early detection, prehabilitation, diagnostics, therapy, rehabilitation and palliative care as well as the various actors, including those affected, the carers and self-help. It deals with healthy people (e. g. in the context of prevention / early detection), patients and cancer survivors. Due to the nature of cancer and the existing care structures, there are a number of specific contents for health services research in oncology compared to general health services research while the methods remain essentially identical. This memorandum describes the subject, illustrates the care structures and identifies areas of health services research in oncology. This memorandum has been prepared by the Oncology Section of the German Network for Health Services Research and is the result of intensive discussions.