[Psycho-Oncological Care for People with a Migration Background and their Relatives - Results of Semi-Structured Interviews with Physicians]. / Psychoonkologische Versorgung von Menschen mit Migrationshintergrund und ihren Angehörigen ­ Ergebnisse aus leitfadengestützten Einzelinterviews mit Ärztinnen und Ärzten.

BACKGROUND: People with a migration background represent a heterogeneous population group with different ethnic, cultural, and religious views and experiences. Cancer diagnosis and treatment are associated with a variety of psychosocial burdens. OBJECTIVE: The aim of this study was to investigate the current perspective of physicians regarding barriers in psycho-oncological care of people with a migration background and to analyse the assistance they need. In addition, the study also aimed to determine the need for as well as structures and processes of psycho-oncological care in order to develop recommendations for improvements in this area of medical care. METHODS: Eight physicians in private practices from the field of hematological-oncological care across Germany were interviewed individually in qualitative interviews that were digitally recorded and transcribed. The evaluation was carried out using content analysis with the software program MAXQDA 2020. RESULTS: 255 codes were identified in the main categories "Definition of people with a migration background", "Communication", "Cultural differences", "Psycho-oncological care", "Coordination and referral to psycho-oncological care services", and "Optimal psycho-oncological care". The results provided insight into daily and practical issues that arise while caring for this group of people, such as transcultural communication, barriers regarding the identification of needs, psycho-oncological continuing care, or translation by relatives. DISCUSSION: Even the identification of needs during medical treatment is associated with barriers. Screening instruments for people with a migration background in different languages and for different cultures could help the identification. In addition, networks would have to be created in order to provide psycho-oncological care to patients afterwards.

[Results of a Pilot Study to Assess Quality Indicators in Outpatient Cancer Care]. / Ergebnisse einer Pilotstudie zur Erfassung von Qualitätsindikatoren in der ambulanten onkologischen Versorgung.

AIMS: Indicators of process quality were developed for outpatient oncology care in Germany with the aim to advance quality monitoring and assurance. In this pilot study, data to assess these quality indicators (QI) were gathered and analyzed for the first time. METHODS: Data were retrieved from patient records in oncology practices using an online data tool. Data were collected by practice-internal and in 7 (wave 1), 9 (wave 2) and 7 (wave 3) practices, respectively, by an external documentalist. RESULTS: Altogether, 5,160 patient records from 37 oncology practices were analyzed. The adherence rates varied considerably between QI as well as between practices (0-100%). In summary, adherence rates were higher for QI of basis documentation (81%) than for therapy planning and implementation (72%), holistic care and psychosocial wellbeing (71%) or pain management (63%). CONCLUSION: The ranges and high standard deviations show a high spread of adherence rates of QI. However, except for pain management, 100% fulfilment of QI requirements in some practices suggests that adherence to QI is generally feasible. Data collection for QI is resource intensive (time and personnel). Yet, collecting and examining data for QI provides useful information about areas with potential for improvement. QI can help improve the quality of care in oncology.

[Cancer Patients and the Last Year of Life: Palliative Care, Hospitalization and Place of Death]. / Krebserkrankung und das letzte Lebensjahr: Palliative Leistungen, Krankenhausaufenthalte und Sterbeort.

INTRODUCTION: Palliative care patients frequently suffer from cancer diagnoses. Specialised palliative home care (German acronym 'SAPV') enables patients with complex symptoms and intensive care needs to receive home care until death. In the German Federal State of Hesse, the first SAPV teams were set up in 2009. Against this background, the aim of this study was (i) to investigate the utilization of SAPV and specialised inpatient palliative care in the last year of life of cancer patients, (ii) to detect the medical professions prescribing SAPV and (iii) to analyse the place of death and the hospitalization rate in the last 91 days of life. METHODS: A retrospective secondary data analysis was conducted. Routine data from the statutory health insurance company AOK Hesse in Germany for 2009-2014 were analysed using descriptive statistical methods. The study population comprised breast, prostate, and colorectal cancer patients who died in the year of observation (2010-2014) and who were fully insured 360 days before death. RESULTS: Depending on the year of observation, 492-545 breast, 546-625 prostate, and 709-752 colorectal cancer patients were included in the study. The analysis showed an increase of cancer patients receiving palliative care from 2010 to 2014. A higher proportion of breast, prostate, and colorectal cancer patients received SAPV as compared to services from palliative care units or inpatient hospices. All in all, over 90% of the SAPV prescriptions were issued by family doctors. The hospitalization rate of cancer patients in the last 91 days of life as well as the share of those dying in hospital decreased between 2010 and 2014. CONCLUSION: The results must be assessed in the context of the implementation of SAPV in the state of Hesse. The increase of SAPV services and the reduction of hospitalizations at the end of life indicate a successful introduction of SAPV in the state of Hesse.

[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.

Experience of office-based haematologists and oncologists with outpatient psycho-social support services for cancer patients with and without migration background in Germany.

PURPOSE: We compared the perception of office-based haematologists and oncologists regarding the availability of outpatient psycho-social support services (PSSS) for patients with cancer and a migration background, as well as their different experiences with these services. METHODS: Data were collected via an online survey addressing the doctors' socio-demographic characteristics and their perception of-and experience with PSSS. The association between socio-demographic characteristics of the doctors and their experiences with PSSS was tested using Pearson's chi-squared test and Kruskal-Wallis test. RESULTS: A total of 55 doctors were included in this study. More than three doctors in four reported non-sufficient presence of PSSS in foreign languages in their region; one in two reported that the services for patients with migration background should be improved. Most doctors reported missing PSSS in Turkish and Arabic in their region. Doctors with less experience referred patients more often to PSSS hosted in patients' associations (75% vs 25%; p = 0.02), than doctors with more experience. Doctors working in larger cities referred patients less often to PSSS in cancer counselling centres (12% vs 88%; p = 0.01), than doctors working in small or middle-large cities. Male doctors were more satisfied with the network of PSSS' providers, than female doctors (mean score = 2.8 vs 2.2; p = 0.05). CONCLUSIONS: Our results suggest that efforts should be made for a higher regional availability of overall and specific PSSS for non-German speaking patients (especially for Turkish- and Arabic-speaking patients). The experience with PSSS was associated with the doctors' work experience and gender, as well as the location of the practice.

Awareness and use of psychosocial care among cancer patients and their relatives-a comparison of people with and without a migration background in Germany.

PURPOSE: We examined how migration background is associated with awareness and usage of psycho-oncology services. METHODS: Oncologists in community-based practices and outpatient clinics asked their patients and their relatives to complete a questionnaire. Migrants were purposely over-sampled. The questionnaire was provided in Arabic, English, Farsi, French, German, Hindi, Kurdish, Pashto, Russian, Somali, Turkish, Urdu, and Vietnamese. RESULTS: From 9 collaborators, 177 participants were enrolled (130 with and 47 without migration background). The existence of outpatient cancer counselling centres was known to 38% of the participants without and 32% with migration background, self-help groups to 32 vs. 12%, and psychotherapy to 43 vs. 25%. Respondents from the Near and Middle East were less likely to know about psychotherapy (odds ratio (OR) 0.1, p = 0.01); those from the Commonwealth of the Independent States or former Yugoslavia were less often informed about self-help groups (OR 0.1, p = 0.06). Migrants retrieved information less frequently from the internet than non-migrants (10 vs. 25%). At least one service had been used by 27% of migrants and 42% of non-migrants (OR 0.5, p = 0.06). After adjusting for gender, age, education, and patient-relative status, there was no evidence for an association between migration background and service use. CONCLUSIONS: Migrants should be better informed about psychotherapy and self-help groups, in particular the ones coming from the Near or Middle East and the Commonwealth of the Independent States or former Yugoslavia. The under-use of psychosocial services can largely be explained by confounding factors. Therefore, these factors must always be taken into account when analysing the use of psychosocial services in the aforementioned populations.

Health related Quality of Life over time in German sarcoma patients. An analysis of associated factors - results of the PROSa study.

Introduction: Sarcomas are rare cancers and very heterogeneous in their location, histological subtype, and treatment. Health-Related Quality of Life (HRQoL) of sarcoma patients has rarely been investigated in longitudinal studies. Methods: Here, we assessed adult sarcoma patients and survivors between September 2017 and February 2020, and followed-up for one year in 39 study centers in Germany. Follow-up time points were 6 (t1) and 12 months (t2) after inclusion. We used a standardized, validated questionnaire (the European Organisation for Research and Treatment of Cancer Quality of Life Core Instrument (EORTC QLQ-C30) and explored predictors of HRQoL in two populations (all patients (Analysis 1), patients in ongoing complete remission (Analysis 2)) using generalized linear mixed models. Results: In total we included up to 1111 patients at baseline (915 at t1, and 847 at t2), thereof 387 participants were in complete remission at baseline (334 at t1, and 200 at t2). When analyzing all patients, HRQoL differed with regard to tumor locations: patients with sarcoma in lower extremities reported lower HRQoL values than patients with sarcomas in the upper extremities. Treatment which included radiotherapy and/or systemic therapy was associated with lower HRQoL. For patients in complete remission, smoking was associated with worse HRQoL-outcomes. In both analyses, bone sarcomas were associated with the worst HRQoL values. Being female, in the age group 55-<65 years, having lower socioeconomic status, and comorbidities were all associated with a lower HRQoL, in both analyses. Discussion: HRQoL increased partially over time since treatment and with sporting activities. HRQoL improved with time since treatment, although not in all domains, and was associated with lifestyle and socioeconomic factors. Bone sarcomas were the most affected subgroup. Methods to preserve and improve HRQoL should be developed for sarcoma patients.

[Acceptance of an oncologic addendum for the application of the German Standardized Medication Plan in oral anticancer drug therapy]. / Akzeptanz eines onkologischen Addendums zur Anwendung des Bundeseinheitlichen Medikationsplans in der oralen Tumortherapie.

BACKGROUND: The Federal Standardized Medication Plan (BMP) offers the possibility of providing patients with specific information on drug therapy. Cancer patients who are treated with oral anticancer drugs have a great need for information as they take the drugs independently in their home environment. Providing specific instructions for oral anticancer drugs may enhance the patient role and improve medication safety. METHODS: In a four-step process (needs assessment, compilation of the text modules, pilot and main phase), an oncologic addendum for the BMP was developed and subjected to an acceptance test. Also, a needs assessment was conducted with oncologists, pharmacists and patients to identify important information to be included in the oncologic addendum. Subsequently, the acceptability of the BMP including the addendum ('Onko-BMP') was tested among health care providers and patients in two study phases (pilot and main phase). Updates made to the Onko-BMP were documented at each follow-up visit. At the end of the observation period, discrepancies between a brown bag review and the latest Onko-BMP were identified to evaluate its completeness. In addition, acceptance of the Onko-BMP was analyzed using qualitative methods. At the end of the pilot phase the patients were interviewed and completed a questionnaire at the end of the main phase. Focus interviews and a focus group were conducted with the health care providers. RESULTS: A total of 347 health care providers and cancer patients participated in the needs assessment, including 167 oncologists, 130 pharmacists, and 50 patients. Suggestions for additional information to be included in the oncologic addendum mainly included instructions for how to take the medication, therapy-limiting side effects as well as potentially relevant interactions with over-the-counter drugs. Ten patients participated in the pilot phase and 60 patients in the main phase of the project. The use of the Onko-BMP was positively evaluated by all participants. The majority of the 178 updates in the main phase were made by the patients themselves. Most frequently, missing items were added (62). After comparison with the brown bag at the end of the observation period, 175 discrepancies for a total of 270 products, including food supplements (mean 6.3 ±â€¯3.9), and 245 drugs (mean 5.7 ±â€¯3.1) taken by the patients were detected, 49 of which were due to missing drugs on the Onko-BMP, mainly on-demand medication (30). 82 documented discrepancies were for prescription drugs. In the qualitative surveys, health care providers indicated that there is a high need for the Onko-BMP. In particular, its use could strengthen the patient's role in therapy. The frequently missing or poor technical requirements for working with the BMP were perceived as limiting its widespread use. Assignment of clear responsibilities and remuneration of all professionals involved were identified as important influential factors for an efficient use of the Onko-BMP. Patients considered the added value of the Onko-BMP primarily to be in their being able to inform their treating physicians and pharmacists about their medication. CONCLUSIONS: The developed Onko-BMP gained a high level of acceptance among patients and health care providers. It can improve education about oral anticancer drugs and thereby strengthen the patient role. However, in order to ensure widespread use of the tool, the necessary conditions should be created on the part of the health care providers. In particular, the IT infrastructure for its use in daily routine needs to be improved in order to exploit its full potential and ensure its successful large-scale implemention.

[Outpatient medical specialist care (ASV): A multiperspective study on status quo, challenges and perspectives]. / Ambulante Spezialfachärztliche Versorgung (ASV): eine multiperspektivische Studie zu Status quo, Herausforderungen und Perspektiven.

BACKGROUND: In 2012, the so-called ambulatory medical specialist care (ASV) was implemented in accordance with para. 116b of Book V of the German Social Code (SGB V), enabling physicians in outpatient practices and hospitals to treat patients with rare diseases or complex courses of disease in a uniform framework. The implementation, however, is slow. The Joint Federal Committee (G-BA) has therefore commissioned an evaluation of the ASV with the aim to examine the reasons for this and to provide recommendations for further development. METHODS: The health services research study "GOAL-ASV" (Innovation Fund, 01VSF19002) included a multi-perspective design with primary data collection as well as secondary data analyses. Data from the ASV service center and the central association of statutory health insurances and the notification forms of the extended state committees were analyzed. Data from the Robert Koch-Institute, the Federal Joint Committee, the National Association of Statutory Health Insurance Funds and a literature database analysis were used in order to estimate the proportion of insured persons qualifying for ASV. Care was examined by analyzing pseudonymized routine data from the statutory health insurances using selected indicators. Participating and not participating physicians were asked to complete an online survey. RESULTS: Since the start of ASV, 615,531 insured persons have been treated in this form of care. At the time of analysis, 509 teams were operating, with 26,540 physicians treating 102,898 patients by the end of March 2021 in all indications. This comprises less than 9.8 %. of all approx. 1.05 million eligible patients. Especially in the case of rare diseases, a low willingness of participation can be seen. In addition, there was a relevant proportion of multiple uses of physicians within and outside ASV at 31 percent as well as indications of passive participation of doctors. We found significant regional differences in type and scope of the notification procedure as well as the implementation of teams with 13.4 teams per 1 million inhabitants in Schleswig-Holstein and no team in Mecklenburg-Vorpommern. Patient benefits (84 %), interdisciplinary (82 %) and cross-sectoral cooperation (75 %) were cited as motivations for participation. The main barriers reported by the respondents were the complex and laborious notification procedure (60 %), the administrative and documentation effort during participation (50 %), insufficient billing figures (49 %), and a small proportion of patients (32 %) with a consecutively unfavorable assessment of the cost to income ratio due to the current reimbursement system. DISCUSSION: Nearly ten years after its introduction, the ASV has not become established nationwide. The reasons for this probably are the complex notification procedure and the reimburesement system for rare diseases. In the case of rare diseases, the risk of underuse is becoming apparent. CONCLUSION: Strategies to further develop the ASV should, in particular, simplify the notification procedure and reduce the obstacles during participation. The remuneration system should take more account of the specific care required.

[Quality assurance in haemato-oncology specialist practices]. / Qualitätssicherung bei hämatoonkologischen Schwerpunktpraxen: Ergebnisse der Strukturdatenerhebung 2019.

BACKGROUND: The regularly published quality reports of the haemato-oncology specialist practices primarily include billing data and results of patient and staff surveys as well as current project-related results. In order to obtain further information on structural quality, an additional survey was conducted among haemato-oncology practices. OBJECTIVES: The goals are the analysis and presentation of structural quality characteristics of haemato-oncology specialist practices. METHODS: We performed an online survey of practices with at least one member in the Professional Association of Office-based Haematologists and Oncologists in Germany in 2019 on practice characteristics, professional policy issues, quality management, and networking. RESULTS: Of 372 practices contacted, 130 participated in the structural data survey (35%). Regarding the topics of quality management and networking, the data show that more than 60% of the practices have a certified quality management system. Almost all practices (94%) are contracted to at least one certified centre and regularly participate in tumour conferences (98%). Furthermore, 77% of the practices participate in clinical trials. CONCLUSIONS: The results of the 2019 structural data survey provide insights into quality characteristics of haemato-oncology specialist practices and demonstrate a strong cross-sector networking of these practices in Germany.

["We knew it was going to be tough, but we didn't expect this!" Experiences with the inclusion of cancer patients with a migrant background and their relatives in the field of psycho-oncology]. / "Wir wussten, dass es schwierig wird, doch damit haben wir nicht gerechnet!" Erfahrungen beim Studieneinschluss von Krebspatient*innen mit Migrationshintergrund und Angehörigen im Bereich der Psychoonkologie.

BACKGROUND: The process of enrolling participants is an important component and often a time-consuming step in scientific research projects. Due to different financial, organisational and ethical framework conditions, the enrolment of participants is often a challenge. In this article, we report our experiences of enrolling patients in clinical trials made in the project "Psycho-oncological care of cancer patients with a migration background - a mixed methods study" (POM). METHODS: Participants were recruited through outpatient haemato-oncology practices. Patients and relatives were primarily made aware of the project by the treating physicians and recruited to participate in qualitative interviews. RESULTS: Nine patients and relatives were interviewed nationwide in individual qualitative interviews. In addition to the COVID-19 pandemic, there were other patient enrolment challenges. In many cases, participation was refused. The reasons included: "not interested", the use of the terms "psycho-oncology" or "person with a migration background", family denying permission to participate, no face-to-face interview due to the COVID-19 pandemic as well as too much emotional distress and deterioration of health after prior consent. DISCUSSION: Enrolling study participants from vulnerable groups for a sensitive topic such as psycho-oncology entails multiple challenges. In order to achieve successful study inclusion, regular telephone and written exchanges with the respective practice staff proved to be helpful, allowing an overview of challenges to be gained and study inclusion to be evaluated and adjusted in a timely manner. CONCLUSION: In research projects with vulnerable groups and on sensitive topics, both a target-group-specific, sensitive approach in plain language (layman's terms) and regular consultations with the persons responsible for study inclusion in care facilities should take place in order to adapt the existing procedure during the study inclusion process, if necessary.

Feasibility of Nurse Consultation in Oral Tumor Therapy: A Web-Based Survey among Physicians and Nonmedical Specialists.

BACKGROUND: Oral antiproliferative therapies have become increasingly important in the treatment of tumors. To ensure patient safety, medical care is focused on adherence and side effects. OBJECTIVES: To meet increased personnel and time requirements, delegation of tasks to nonmedical specialists (NMS) may be a solution; however, presently, little is known about the options in Germany. METHOD: At least 3,300 members of the German Society for Hematology and Medical Oncology (DGHO), 580 members of the Professional Association of Office-Based Hematologists and Oncologists in Germany (BNHO), and 1,500 members of the Conference on Oncology Nursing and Pediatric Nursing (KOK) were contacted via a web-based survey. The survey focused on the feasibility of oncology nurse consultation as an additional consulting service for patients undergoing oral tumor therapy. RESULTS: In total, 255 (physicians) and 206 (NMS) questionnaires were evaluable; 90.9% of the physicians were hematologists/oncologists, 87.8% advocated oncology nurse consultation, 34.1% had previously implemented/scheduled such consultations, 58.3% of the NMS were nursing staff, 46.1% had advanced training in oral tumor therapy, 94.2% were interested in further qualifications, 37.8% worked at facilities with established/planned nurse consultations, and 62.1% personally conducted/preferred conducting consultations. CONCLUSIONS: Throughout Germany, there seems to exist a group of qualified NMS who are motivated to provide care to patients undergoing oral tumor therapy. Particular physicians actively support these nurse consultations. Extensive implementation of delegation concepts in standard care of patients undergoing oral tumor therapy is not yet underway.

[Feedback strategies for routine surveys of quality indicators in outpatient oncology care]. / Feedbackstrategien bei routinemäßigen Erhebungen von Qualitätsindikatoren in der ambulanten onkologischen Versorgung.

OBJECTIVES: The study deals with the efficiency and possible improvements of quality promotion with quality indicators (QI). The goal is to investigate the practical use of feedback from QI surveys in the field of oncology office practices. It captures both the acceptance of results and the independent initiation of search- and improvement strategies. The value of best practice examples is of further interest. METHODS: Within one year, data of six QI of 31 physicians from 24 oncology practices were collected twice and the results were sent back in individual reports including a benchmarking. Practices with particularly good results in individual QI sectors were surveyed in semi-structured telephone interviews about their processes. Based on these results, best practice examples were created and provided to all participating practices to stimulate improvement. Further, two paper-based surveys about the acceptance and handling of results as well as the use of best practice examples were conducted. RESULTS: The practices accepted the reported results as an instrument to assess their own care quality (70 %) and indicated that had been able to identify improvement potentials (75 %). Improvement strategies were developed or planned by approximately every second practice in the respective sectors. The practices were interested in the best practice examples and rated them as helpful (70 %). Many of them indicated that they were already taking up some of the suggestions for improving the organization of their own processes or were planning to do so. CONCLUSION: The extraction of information on QI from patient files is a tedious task for the practices. Both the implementation of the necessary internal measures after receiving the results report as well as the adaptation of external process examples to their own processes is challenging. Nevertheless, oncology practices benefit from the feedback of the results of QI surveys and best practice examples. Thus, QI surveys and the reporting of results can actively encourage quality development.

Tumor Boards from the Perspective of Ambulant Oncological Care.

BACKGROUND: Cancer therapy requires the cooperation of physicians from different disciplines. At the core of the collaboration are 'tumor boards' (also known as 'multidisciplinary team meetings' and 'tumor conferences'). However, there is limited health care research that addresses the multiple facets of such meetings. MATERIAL AND METHODS: Data were analyzed from 3 routinely conducted surveys comprising information from (i) office-based hematologists and oncologists, (ii) their patients, and (iii) quality indicators. RESULTS: Most office-based oncologists stated that they participate in tumor boards taking place in hospitals. Although tumor boards are viewed as time intensive and lack financial compensation, they are considered as beneficial for patient care. Less than half of patients knew that their cases were discussed at a tumor board; those who knew rated the collaboration between their treating doctors as more positive, but also experienced slightly higher distress levels. The quality indicators showed that tumor board meetings were documented in three-quarters of the patient charts, but only half included the tumor board's recommendation. CONCLUSIONS: Participation in tumor boards is perceived as beneficial by oncologists and not just considered as a fulfillment of societies' recommendations or guidelines. The higher distress levels in patients who knew that their case was discussed at a tumor board may have occurred because more difficult cases are discussed at tumor boards and since the oncologists spend more time explaining the therapy process in complex cases, including the tumor board results.

[WINHO quality indicators for outpatient oncology care in Germany]. / WINHO-Qualitätsindikatoren für die ambulante onkologische Versorgung in Deutschland.

The aim of the WINHO indicators project is to describe and enhance the quality of outpatient oncology care in Germany with indicators. This paper deals with the development of a set of evidence- and consensus-based meaningful indicators to assess the quality of outpatient oncology care in Germany. These indicators are intended to be applied in assessments of quality of patient care in oncology practices, in quality reports and in peer-to-peer benchmarking. A set of 272 already existing indicators was identified through internet and literature searches. After redundancy reduction and addition of newly developed indicators for areas of ambulatory oncology care that were not yet covered, a preliminary set of 67 indicators was established. The further development of the indicator set was based on a modified version of the two-step RAND/UCLA expert evaluation method, which has been internationally established for developing quality indicator sets. The indicators were modified after the first round of ratings. After completing and assessing the second round of ratings, a set of 46 homogeneously positively rated quality indicators is now available for outpatient oncology care in Germany.