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.

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.

[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.

The association of Health-Related Quality of Life and 1-year-survival in sarcoma patients-results of a Nationwide Observational Study (PROSa).

BACKGROUND: Sarcomas are rare cancers of high heterogeneity. Health-Related Quality of Life (HRQoL) has been shown to be a prognostic factor for survival in other cancer entities but it is unclear whether this applies to sarcoma patients. PATIENTS AND METHODS: HRQoL was prospectively assessed in adult sarcoma patients from 2017 to 2020 in 39 German recruiting sites using the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30). Vital status was ascertained over the course of 1 year. HRQoL domains were analysed by multivariable cox-regressions including clinical and socio-economic risk factors. RESULTS: Of 1102 patients, 126 (11.4%) died during follow-up. The hazard ratio (HR) for global health was 0.73 per 10-point increase (95% confidence interval (CI) 0.64-0.85). HR for the HRQoL-summary score was 0.74 (CI 0.64-0.85) and for physical functioning 0.82 (CI 0.74-0.89). There was also evidence that fatigue (HR 1.17, CI 1.10-1.25), appetite loss (HR 1.15, CI 1.09-1.21) and pain (HR 1.14, CI 1.08-1.20) are prognostic factors for survival. CONCLUSION: Our study adds sarcoma-specific evidence to the existing data about cancer survival in general. Clinicians and care-givers should be aware of the relations between HRQoL and survival probability and include HRQoL in routine assessment.

Barriers to utilisation of cancer rehabilitation from the expert's view: A cross-sectional survey.

OBJECTIVE: The goal of this study was to investigate barriers to utilisation of cancer rehabilitation by querying a large sample of various professionals in health care with a comprehensive set of barriers. METHODS: We developed a questionnaire comprising 55 barriers to utilisation of cancer rehabilitation and administered it to four different types of medical, care and social work experts involved in the referral to cancer rehabilitation. An exploratory factor analysis was conducted and the extracted factors were ranked by mean values. Additionally, ANOVAs were calculated to test for group differences. RESULTS: Our sample (N = 606) consisted of 249 physicians, 194 social workers, 105 nurses and 55 psychologists in Germany. We identified seven barrier-dimensions: low appreciation of rehabilitation by professionals, insufficient coordination, insufficient application procedure, rehabilitation requirements not met, patients' unfulfilled demands, patients' social responsibilities and patients' coping style, with the latter being rated as the most obstructive thereof. Furthermore, we found statistically significant group differences for six of these factors with small- to medium-sized effects. CONCLUSION: Our results support previous publications implicating the patients' coping style as a barrier. We furthermore found evidence for barriers relating to processes and organisational issues, thereby expanding on the scope of patient-oriented publications. Suggestions for improving patients' health services accessibility are made.

["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.

[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.

[Barriers in the Application Process for Oncological Rehabilitation: A Nationwide Expert Study]. / Barrieren der Antragstellung in der Onkologischen Rehabilitation: Eine bundesweite Expertenstudie.

PURPOSE: From the perspective of various expert groups involved in the care of oncological patients, barriers to the application process of oncological rehabilitation programs will be identified. The study was funded by the German Pension Insurance Association (DRV). METHODS: Based on an interview study (N=61), a questionnaire instrument with 55 items describing possible barriers in the application process was designed and implemented online. Participants with more than 33% missing values were excluded from the analyses. Mean value analyses were used to identify the most significant relevance. To identify overall dimensions an explorative factor analysis was conducted . RESULTS: A total of 606 experts from the oncological field were included in the analyses. Among them were 249 doctors, 194 social workers, 105 nurses / medical assistants, 55 psychologists / psycho-oncologists and three other professional groups. The queried experts were on average 51 years old (SD=10.4) and had been working in the oncological field for 17 years (SD=9.8). The barriers could be assigned to the following seven factor-analytically determined content sections: coping style, application procedure, rehabilitation requirements, coordination, social responsibilities, desires of patient and the priority of rehabilitation. According to the experts statements the main obstacles to an application were the patient's desire for normality, the rigid deadline for the application and the application procedure which is difficult for patients with a migration background to understand. It was also pointed out that it is difficult to place multimorbid patients in rehabilitation facilities. CONCLUSION: The following recommendations for action to facilitate access to rehabilitation can be derived from the expert study: optimization of the coordination between different expert groups, institutions and the cost units, flexibilisation of the deadline for follow-up, simplifying the application process, providing applications/information material in additional languages, orienting rehabilitation clinics towards specific patient groups.

Utilization of Interdisciplinary Tumor Boards for Sarcoma Care in Germany: Results from the PROSa Study.

BACKGROUND: Data on institutional structures of sarcoma care in Germany are scarce. The utilization of an interdisciplinary tumor board (IDTB) is an essential part of modern cancer care. We investigated to which extent and when IDTB are used in sarcoma care. We hypothesized that IDTB before treatment initiation were used more often at certified cancer centers and at high-volume centers and that IDTB utilization increased over time. METHODS: From 2017 to 2020 we conducted a prospective cohort study, undertaking major efforts to include the whole spectrum of sarcoma treatment facilities. To analyze potential predictors of IDTB utilization, we calculated multivariable logistic regressions. RESULTS: Patients and survivors (n = 1,309) from 39 study centers (22 tertiary referral hospitals, 9 other hospitals, and 8 office-based practices) participated; 88.3% of the patients were discussed at some stage of their disease in an IDTB (56.1% before treatment, 78% after therapy, and 85.9% in metastatic disease). Hypotheses were confirmed regarding the utilization of IDTB in certified cancer centers (vs. all others: OR = 5.39; 95% CI 3.28-8.85) and the time of diagnosis (2018/2019 vs. until 2013: OR = 4.95; 95% CI 2.67-9.21). CONCLUSION: Our study adds to the evidence regarding the institutional structures of sarcoma care in Germany. Utilization of a tumor board before therapy seems to be in an implementation process that is making progress but is far from complete. Certification is a possible tool to accelerate this development.

[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.

[Barriers in the Application Process for Oncological Rehabilitation: Results of a Qualitative Expert Survey]. / Barrieren bei der Antragstellung zur onkologischen Rehabilitation: Ergebnisse einer qualitativen Expertenbefragung.

PURPOSE: In this study, which was funded by the German Federal Pension Fund (DRV), barriers in the application process for oncological rehabilitation services were examined from the perspective of various expert groups. METHODS: In an exploratory multicentre qualitative cross-sectional study 61 semi-structured interviews with experts working in oncological care were conducted: Physicians (n=26), social workers (n=22), psychologists/psycho-oncologists (n=6), nurses/medical assistants (n=5), administrative staff of the DRV (n=2). In guided interviews the participants were asked about their experiences with rehabilitation applications as well as their estimations and evaluations regarding possible reasons for non-utilisation. The evaluation of the interviews was computerized and based on the qualitative content analysis by Mayring. RESULTS: The respondents had an average age of 52.51 years (SD=10.06; min=25, max=71) and were working in the consultation or treatment of oncological patients for an average of 19.26 years (SD=10.15; min=1, max=42). In total, 854 statements were coded and assigned to the following three main categories: expert-related, system-related and patient-related barriers. In the first main category, scepticism about the benefits of rehabilitation services and an insufficiently met need for information on the part of experts became the focus of attention. In the main category of system-related barriers, aspects were mentioned that addressed the application procedure, the low availability of, for example, outpatient rehabilitation services and the absence of a functioning referral system. The main category of patient-related barriers included psychosocial factors such as subcategories on the topic of coping with the disease which include the patient's desire to come home, experience everyday life again and the fear of being confronted with the disease. CONCLUSION: The exploratory study revealed potential barriers in the application process for oncological rehabilitation services from an expert perspective. In particular, the findings form the basis for a multi-dimensional assessment instrument that can be used to analyze the barriers in a standardised way and to derive individual recommendations for action.

The Health-Related Quality of Life of Sarcoma Patients and Survivors in Germany-Cross-Sectional Results of a Nationwide Observational Study (PROSa).

Sarcomas are rare cancers with high heterogeneity in terms of type, location, and treatment. The health-related quality of life (HRQoL) of sarcoma patients has rarely been investigated and is the subject of this analysis. Adult sarcoma patients and survivors were assessed between September 2017 and February 2019 in 39 study centers in Germany using standardized, validated questionnaires (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ-C30)). Associated factors were analyzed exploratively using multivariable linear regressions. Among 1113 patients, clinically important limitations and symptoms were most pronounced in emotional (63%, 95% CI 60-66%), physical (60%, 95% CI 57-62%), role functioning (51%, 95% CI 48-54%), and pain (56%, 95% CI 53-59%) and fatigue (51%, 95% CI 48-54%). HRQoL differed between tumor locations with lower extremities performing the worst and sarcoma types with bone sarcoma types being most affected. Additionally, female gender, higher age, lower socioeconomic status, recurrent disease, not being in retirement, comorbidities, and being in treatment were associated with lower HRQoL. Sarcoma patients are severely restricted in their HRQoL, especially in functioning scales. The heterogeneity of sarcomas with regard to type and location is reflected in HRQoL outcomes. During treatment and follow-up, close attention has to be paid to the reintegration of the patients into daily life as well as to their physical abilities and emotional distress.

[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.

Current State of Sarcoma Care in Germany: Results of an Online Survey of Physicians.

BACKGROUND: Sarcoma treatment is a complex and multidisciplinary process. Little is known about the actual status of sarcoma care in Germany. OBJECTIVES: We evaluated: (1) on an institutional level, which physician diagnosed and treated sarcomas; (2) whether guidelines and tumor board recommendations were routinely implemented; and (c) access to which diagnosis and treatment options was regarded as problematic. We also examined factors that were associated with access problems. METHODS: A cross-sectional online survey was employed among German sarcoma physicians between June 2017 and February 2018 with convenience sampling. RESULTS: Two hundred fourteen physicians participated; 46% were oncologists and 27% surgeons, 38% worked in hospitals of maximum care, 34% were office based and 27% worked in other hospitals, 68% of all of the physicians consulted established guidelines, and 93% presented their patients in multidisciplinary tumor boards. The most common access problems were: isolated limb perfusion (39%), deep-wave hyperthermia (33%), and FDG-PET (27%), and 42% reported no access problems at all. Those physicians who treat more than 100 patients per year reported "no access problems" more frequently compared to centers with lower patient numbers (vs. 0-10 patients, OR 0.14; 95% CI 0.03-0.61; vs. 11-100 patients, OR 0.21; 95% CI 0.06-0.73). CONCLUSIONS: Access to multidisciplinary tumor boards seems to be largely guaranteed in the participants of our survey. The use of guidelines could be further implemented and expanded. The number of treated patients appears to be a significant factor to avoid access problems to treatment options.