Introduction Partners of cancer patients often show similar levels of distress like the oncological patients themselves, and they are a primary resource for the patient’s physical and emotional support. Integrating self-care in daily routines is applied as a treatment approach in cognitive behavioural therapy. Carrying out self-care in caring relatives prevents anxiety and depression, enhances health-related quality of life and reduces caregiver burden. So far, there is no instrument which assesses self-care specifically in partners of cancer patients. The aim of this prospective mixed-methods validation study is to develop and psychometrically evaluate a psychological self-reported questionnaire assessing self-care in partners of cancer patients (SC-PC questionnaire).Methods and analysis Recruitment of participants will take place online and offline across Germany, Austria and Switzerland. The data collection will be carried out via personal cognitive qualitative interviews and a web-based data assessment tool within four phases: (1) personal qualitative semi-structured interviews with n≈15 partners of cancer patients on self-care in different areas of life; (2) pretest of derived self-care items concerning feasibility, comprehensibility and completeness with n=3–5 (psycho-)oncological experts and n=20–30 partners of cancer patients; (3) pilot study with an exploratory factor analysis with n=300 partners of cancer patients, based on an expected initial item pool of approximately 30 items and a 10:1 item-participant ratio; and (4) main validation study with confirmatory factor analysis with n=400 partners of cancer patients, based on an expected final item pool of approximately 20 items and a 20:1 item-participant ratio. Subgroup analyses will be calculated with demographic and medical variables.Ethics and dissemination A project-specific concept for data protection was established. All legal and professional regulations will be complied with. In order to meet ethical standards and protect participants from potential emotional burdens during this mainly decentralised study, ethical guidelines for online studies were implemented in the study design. The study was approved by the ethics committee of the University of Ulm (number/ID of the approval: 230/25). Results will be presented at conferences and published in scientific peer-reviewed journals for broad reach. The resulting self-care questionnaire may be implemented as a new measurement instrument in research projects investigating psycho-oncological interventions for partners of cancer patients and the practical field of cancer counselling for progress assessment.Trial registration number DRKS00038519.

IntroductionMajor national and international oncological societies generally recommend treating a significant proportion of oncological patients in clinical trials to improve therapy strategies for cancer patients. At cancer centers, the recommendation about the appropriate therapy for the individual tumor patient is usually made in interdisciplinary case discussions in multidisciplinary tumor boards (MDT). In this study, we examined the impact of MDTs for the inclusion of patients in therapy trials.MethodologyA prospective, explorative study of the Comprehensive Cancer Center Munich (CCCM) was conducted at both university hospitals in 2019. In the first phase, various MDTs' case discussions about oncological situations and their decisions regarding possible therapy trials were recorded in a structured manner. In the second phase, the actual inclusion rates of patients in therapy trials and reasons for non-inclusion were examined. Finally, the data of the respective university hospitals were anonymized, pooled and analyzed.ResultsA total of 1797 case discussions were reviewed. Therapy recommendations were made in 1527 case presentations. 38 (2.5%) of 1527 patients were already included in a therapy trial at the time of case presentation. The MDTs recommended inclusion of an additional 107 cases (7%), for a therapy trial. Of these patients, 41 were finally enrolled in a therapy trial which resulted in a total recruitment rate of 5.2%. Despite MDTs' recommendations, 66 patients were not included in a therapy trial. The main reason for non-inclusion was insufficient inclusion or existing exclusion criteria (n = 18, 28%). In 48% of all cases (n = 31), the reason for non-inclusion could not be determined.ConclusionThe potential of MDTs as an instrument for the inclusion of patients in therapy trials is high. To increase the enrollment of patients in oncological therapy trials, structural measures such as the central use of trial administration and MTB software in addition to standardized tumor board discussions must be established to ensure a seamless flow of information about actual recruiting trials and the current status of trial participation of patients.

Zusammenfassung Fragestellung Wie entwickelte sich die allgemeine und bereichsspezifische Lebenszufriedenheit in Ost- und Westdeutschland zwischen 1991 und 2020? Methode Auf Basis dreier repräsentativer Befragungen aus den Jahren 1991, 2006 und 2020 wurde die Lebenszufriedenheit in Ost- und Westdeutschland durch Mittelwertsvergleiche und Signifikanztestungen untersucht. Der Einfluss soziodemografischer Variablen wurde mittels univariater Varianzanalyse berechnet. Ergebnisse 1991 bestanden große Unterschiede in der allgemeinen Lebenszufriedenheit und den Bereichen Wohnen, Freizeit, Gesundheit, Finanzen und Beruf. Dabei berichteten Befragte in Ostdeutschland deutlich geringere Werte. Diese Differenzen glichen sich über den Erhebungszeitraum deutlich an. Fazit Die allgemeine und bereichsspezifische Lebenszufriedenheit in Ost- und Westdeutschland glichen sich über den Untersuchungszeitraum an. Die verbesserten Lebensbedingungen in Ostdeutschland könnten dabei eine entscheidende Rolle spielen.

Die psychoonkologische Versorgung von Krebspatienten ist fester Bestandteil einer umfassenden onkologischen Behandlung. Im klinischen Alltag zeigen sich jedoch vielfältige Herausforderungen hinsichtlich der Inanspruchnahme entsprechender Angebote. Welche Barrieren finden sich in der Inanspruchnahme psychoonkologischer Versorgung? Vorliegende Arbeit gibt einen narrativen Überblick ausgewählter relevanter Ergebnisse zu individuellen Barrieren aus Patientenperspektive, Barrieren hinsichtlich Informationen über psychoonkologische Versorgung und Einstellungen zur Psychoonkologie sowie über strukturelle Barrieren. Mehr als die Hälfte der psychisch belasteten Patienten nimmt keine psychoonkologische Versorgung in Anspruch. Hinsichtlich individueller Barrieren zeigt sich, dass der Zeitpunkt, die Art und Weise, wie Patientinnen und Patienten die eigene psychische Belastung wahrnehmen, und das Vorhandensein persönlicher/sozialer Ressourcen das Inanspruchnahmeverhalten beeinflussen. Viele Patienten sind nicht ausreichend über Modalitäten und Wirkweisen psychoonkologischer Versorgung informiert. Strukturelle Barrieren ergeben sich in der Finanzierung psychoonkologischer Versorgung sowie in der Erfassung und Dokumentation des Versorgungsbedarfs. Mit niederschwelliger, verständlicher und leicht zugänglicher Information hinsichtlich Modalitäten und Wirkweisen der Unterstützung kann individuellen Vorbehalten begegnet werden. Eine enge interdisziplinäre Zusammenarbeit ist hierbei bedeutsam. Mithilfe einer geregelten Finanzierung, einer flächendeckenden Erhebung und Dokumentation des Bedarfs (Distress-Screening) sowie den Möglichkeiten digitaler Lösungen kann Barrieren auf struktureller Ebene begegnet werden.

Background Today, the psycho-oncological care of cancer patients is an integral part of comprehensive oncological treatment. However, there are many barriers regarding the utilization of psycho-oncological support in everyday clinical practice. Objectives What are the barriers to the utilization of psycho-oncological care? Materials and methods This paper gives a narrative overview of available empirical evidence regarding individual barriers from the patient's perspective, barriers regarding information and personal attitudes towards psycho-oncology as well as structural barriers. Results More than 50% of clinically distressed patients with cancer do not use psycho-oncological support. With regard to individual barriers, it is shown that the timing, the way patients perceive their own psychological distress and the availability of personal/social resources have an impact on the utilization of psycho-oncological support offers. In addition, many patients are not sufficiently informed about the modalities and effects of psycho-oncological care. Structural barriers arise in the financing of these support offers as well as in the recording and documentation of patients' needs for psycho-oncological care. Conclusions Individual concerns regarding psycho-oncological support can be addressed with low-threshold, comprehensible and easily accessible information about the modalities and effects of psycho-oncological support. Close interdisciplinary cooperation is important here. Regulated funding, consequent recording and documentation of the psychosocial support needs (via distress screening), as well as digital solutions may reduce barriers on a structural level.

Objective To improve allocation of psychosocial care and to provide patient-oriented support offers, identification of determinants of elevated distress is needed. So far, there is a lack of evidence investigating the interplay between individual disposition and current clinical and psychosocial determinants of distress in the inpatient setting. Methods In this cross-sectional study, we investigated 879 inpatients with different cancer sites treated in a German Comprehensive Cancer Center. Assessment of determinants of elevated distress included sociodemographic, clinical and psychosocial characteristics as well as dimensions of personality. Multiple linear regression was applied to identify determinants of psychosocial distress. Results Mean age of the patients was M = 61.9 (SD = 11.8), 48.1% were women. In the multiple linear regression model younger age (beta = -0.061, p = 0.033), higher neuroticism (beta = 0.178, p = <0.001), having metastases (beta = 0.091, p = 0.002), being in a worse physical condition (beta = 0.380, p = <0.001), depressive symptoms (beta = 0.270, p = <0.001), not feeling well informed about psychological support (beta = 0.054, p = 0.046) and previous uptake of psychological treatment (beta = 0.067, p = 0.020) showed significant associations with higher psychosocial distress. The adjusted R-2 of the overall model was 0.464. Conclusion Controlling for sociodemographic characteristics and dispositional vulnerability, that is neuroticism, current clinical and psychosocial characteristics were still associated with hospitalized patients' psychosocial distress. Psycho-oncologists should address both, the more transient emotional responses, such as depressive symptoms, as well as more enduring patient characteristics, like neuroticism.

The discrepancy in the general and area specific life satisfaction between East and West Germans did align during the last 30 years. A reason might be the improved economical living conditions in East Germany.

A cancer disease can be associated with psychological stress for both patients and partners. To date, no psychometrically tested measuring instrument has been available for the assessment of cancer-specific distress in partners of cancer patients. The Questionnaire on Stress in Partners of Cancer Patients (QSC-P) was developed to close this gap. This study validates the QSC-P in two subsamples of n1 = 227 and n2 = 297 partners of cancer patients by application of exploratory factor analysis methods in n1 and confirmatory factor analysis methods in n2. Additionally, correlations with common measures of anxiety, depression, and quality of life were calculated. A cut-off for high distress was determined. A three-factor structure with 23 items that was generated in n1 could be replicated in n2. Reliability and validity analyses resulted in good to very good characteristic values of the resulting QSC-P (α = .84- .93). A cut-off of 68.5 with good sensitivity and specificity was calculated. The QSC-P proved to be a valid and reliable measuring instrument for psychological distress of partners of cancer patients and a helpful tool for clinical care and research. Future directions include development of a short-form and detailed comparison of the sexes.

Background Partly as a result of the increasing attention directed toward transgender individuals and despite much research work on the topic of quality of life (QOL) of transgender, there is still a lack of studies using standardized questionnaires in their evaluation. Aims We designed a survey to evaluate the influence of surgery after phalloplasty (osteofasciocutaneous fibula free flap or osteofasciocutaneous radial free forearm flap) on QOL, emotional stability, self-esteem, and psyche of postoperated transgender men. Methods The present study included 32 transgender men who had undergone gender-affirming surgery (GAS) exclusively in our department between 2000 and 2012. Apart from our self-developed, indication-specific questionnaire with questions on socioeconomic and demographic data as well as postoperative satisfaction, the testing instrument included 4 frequently used, standardized testing instruments, which we compared with normative data. These included ( a ) a self-assessment test Fragebogen zur Lebenszufriedenheit with questions on QOL consisting of 3 modules (general satisfaction, satisfaction with health, and satisfaction with body image/outer appearance), ( b ) the Freiburg Personality Inventory, ( c ) the Rosenberg Self-Esteem Questionnaire, and ( d ) the Patient Health Questionnaire 4. Findings Our self-developed, indication-specific questionnaire showed that 88% of our patients were very satisfied with the aesthetic result, 75% have had sex after surgery, and 72% were very satisfied with sexual function after GAS. Eighty-one percent had a strong improvement of QOL, and 91% would undergo the same treatment again. Eighty-four percent would recommend GAS to others. All patients lived as men fulltime. Discussion Our study reveals that GAS plays an important part in the interdisciplinary treatment of transgender individuals as it improves the QOL in transgender men in most aspects of everyday life and has a positive influence on the patients' psyche and self-esteem in a retrospective study.

Die systematische Erfassung der psychosozialen Belastung von Krebspatienten, das sog. Distress Screening (DS), ist heute Bestandteil einer modernen onkologischen Versorgung und Bedingung für die Anerkennung als Krebszentrum. Ziel ist die Vermittlung einer individuellen bedarfsgerechten psychoonkologischen Unterstützung. Die praktische Umsetzung des DS unter Routinebedingungen ist aufwendig und kann nur gelingen, wenn klare Abläufe und definierte Zuständigkeiten vorliegen und personelle Ressourcen bereitgestellt werden. Es ist damit zu rechnen, dass etwa 50 % der als belastet identifizierten Patienten die Nutzung psychoonkologischer Unterstützungsangebote ablehnen. Objektive und subjektive Hürden können dafür verantwortlich gemacht werden. Neben Alter und Geschlecht, geeigneten Zeiten und Orten spielen wenig differenzierte Angebote und unzureichende Patienteninformationen eine Rolle. Der Zugang zur psychoonkologischen Unterstützung ist für den Patienten leichter, wenn er sich genau vorstellen kann, welche Art von Intervention in welcher Form welche psychologischen Ziele erreichen soll.

Background Precision oncology is associated with high hopes of therapeutic success for affected patients. The data available on the clinical benefit of precision oncology approaches is inconsistent and the complexity of the subject matter places high demands on patient understanding. The management of these patients poses new challenges to the treating oncologists. Objectives This article reports on the current status of psycho-oncological research on the psychosocial burden of this patient group, their information needs, and the challenges for oncologists in connection with molecular diagnostics. Methods The basis for this was provided by a literature review and the results of our own investigations. Results Patients show high psychological stress and at the same time high hopes for molecular diagnostics. Transparent and continuous physician-patient communication, which includes patient-oriented education and consultation, is necessary to ensure informed consent in the context of precision oncology. Conclusion Psychological stress in patients in connection with precision oncology should be systematically investigated and identified at an early stage. These can be mitigated by specific physician-patient communication. One of the tasks of psycho-oncology today is to provide supporting measures.

Purpose Despite promising achievements in precision cancer medicine (PCM), participating patients are still faced with manifold uncertainties, especially regarding a potential treatment benefit of molecular diagnostics (MD). Hence, MD poses considerable challenges for patient information and communication. To meet these challenges, healthcare professionals need to gain deeper insight into patients’ subjective experiences. Therefore, this qualitative study examined information aspects of MD programs in cancer patients. Methods In two German Comprehensive Cancer Centers, 30 cancer patients undergoing MD participated in semi-structured interviews on information transfer and information needs regarding MD. Additionally, patients provided sociodemographic and medical data and indicated their subjective level of information (visual analogue scale, VAS, 0–10). Results On average patients had high levels of information (mean = 7, median = 8); nevertheless 20% ( n = 6) showed an information level below 5 points. Qualitative analysis revealed that patients show limited understanding of the complex background of MD and have uncertainties regarding their personal benefit. Further, patients described unmet information needs. Existential threat in awaiting the results was experienced as burdensome. To withstand the strains of their situation, patients emphasized the importance of trusting their physician. Conclusion The challenges in PCM consist in providing unambiguous information, especially concerning treatment benefit, and providing guidance and support. Therefore, psycho-oncology needs to develop guidelines for adequate patient communication in order to help healthcare providers and cancer patients to handle these challenges in the developing field of PCM.

Die psychosozialen Konsequenzen einer Krebserkrankung sind gut erforscht und zeigen im kurz- wie längerfristigen Krankheitsverlauf ein erhebliches Belastungsausmaß der Betroffenen. Psychoonkologische Interventionen helfen Erkrankten und ihren Angehörigen, mit diesen Belastungen umzugehen. Sie reduzieren signifikant psychische Belastungen und verbessern die Lebensqualität. Mit Blick auf eine bedarfsgerechte psychoonkologische Versorgung hat ein Expertengremium erstmals für Deutschland einen Bedarfsalgorithmus Psychoonkologie für den stationären psychoonkologischen Dienst erstellt. Der Versorgungsalgorithmus berücksichtigt (i) die evidenzbasierte Schätzung der psychischen Komorbidität (objektiver Bedarf) sowie der subjektiven Belastung und Unterstützungsbedürfnisse (subjektive Bedürfnisse) der an Krebs Erkrankten, basierend auf der aktuellen wissenschaftlichen Studienlage, und (ii) die evidenz- und konsensbasierte Aufgaben- und Zeitabschätzung eines psychoonkologischen Dienstes, unterteilt in direkte und indirekte Patientenversorgung sowie allgemeine Versorgungsaufgaben. Basierend auf dem Versorgungsalgorithmus ist davon auszugehen, dass eine Vollzeitkraft in der Gruppe der psychisch hoch belasteten an Krebs Erkrankten (alle Tumorentitäten außer Prostata- und Hautkrebs), 300 Personen pro Jahr versorgen kann, wohingegen in der Gruppe der moderat belasteten an Krebs Erkrankten, d. h. Prostata- und Hautkrebspatienten, eine Versorgung von 500 Personen durch eine Vollzeitkraft möglich ist. Der psychoonkologische Versorgungsalgorithmus trägt zur Sicherstellung einer bedarfsgerechten psychoonkologischen Versorgung bei, die sowohl als Handlungsziel im Nationalen Krebsplan des Bundesministeriums für Gesundheit als auch in der S3-Leitlinie Psychoonkologie beschlossen wurde.

ZusammenfassungNationale und internationale Behandlungsleitlinien und Zertifizierungskriterien für Krebszentren schließen psychoonkologische Mitbetreuung von belasteten Patienten heute zwingend ein; das gilt selbstverständlich auch für die Uro-Onkologie. Die systematische Feststellung der individuellen Unterstützungsbedürftigkeit in der Praxis soll durch „distress screenings“ bewerkstelligt werden. Während im Allgemeinen von ca. 30 % belasteter Krebspatienten ausgegangen wird (Anteil Patienten mit hohem distress oder psychischer Komorbidität), liegt die Rate bei der größten urologischen Entität, den Prostatakrebspatienten, niedriger (bei ca. 20 %). Der Zugang zu den indizierten Psychotherapien ist für viele Patienten aus persönlichen Gründen schwierig und führt zu relativ hohen Ablehnungsquoten − trotz hoher Belastung. Dies gilt insbesondere für die Uro-Onkologie. Ein entscheidender Faktor ist die Tatsache, dass hier überwiegend ältere Männer betroffen sind, ein Personenkreis, der sich generell schwer tut, eigene Emotionen wahrzunehmen, zu kommunizieren und psychologische Unterstützung in Anspruch zu nehmen. In diesem Zusammenhang werden hohe Anforderungen an die kommunikative Kompetenz des Urologen gestellt.

Background There are few studies evaluating depression, self-esteem, and mental health after gender confirming treatment of transgender women. Most of these studies include different surgical techniques and nonvalidated questionnaires. With our survey, we are aiming to assess psychopathologies and mental health as well as sexuality among a group of patients treated by the same surgeon performing our self-developed combined surgical technique. This vaginoplasty approach is characterized by constructing the vaginal cavity with parts of the penile and scrotal skin as well as the longitudinally incised urethra. Materials and Methods Forty-seven transgender women who underwent gender confirming treatment between 2007 and 2013 were included in a retrospective study. The assessment of our study group was performed by means of self-developed indication-specific questionnaires and 3 standardized questionnaires that can be compared with norm data. Results Preoperative psychotherapy was mostly considered as helpful by the patients, yet postoperatively, only a third of our study participants were still under therapeutic treatment. Furthermore, we could show a change in sexual preference toward a more bisexual orientation. Gender confirming treatment satisfied the expectations for most of the patients and, in their opinion, should have been performed earlier. Results of the standardized Patient Health Questionnaire 4, a short depression screening questionnaire, did not significantly differ from healthy norm data. The Freiburg Personality Inventory, Revised, revealed normal emotionality and sane self-assessment within our study group. High self-esteem and significantly higher scores than norm data were found for the Rosenberg Self-esteem Scale. Conclusions Gender confirming treatment with the combined technique is an important part of a multi-structured treatment of transgenders and does have effects on psychological well-being. It seems to decrease psychopathologies and implicates several ameliorations for transgender women. Findings need to be verified in prospective studies including preoperative evaluations.

Patient Reported Outcome Measures (PROMs) finden zunehmend Anwendung in der Erhebung und dem Monitoring von psychosozialem Distress bei Krebspatienten. Bisher mangelt es jedoch an Studien zur Anwendung elektronischer PROMs (ePROMs) im klinischen Alltag. Mit Screen2Care wurde ein elektronisches Distress-Screening für Krebspatienten mit Anschluss an das Krankenhausinformationssystem (KIS) SAP i.s.h.med entwickelt. Ziel der Studie des Comprehensive Cancer Center München ist es, Machbarkeit und Akzeptanz von Screen2Care zu überprüfen. Es wurde eine digitale Version des Distress-Screenings für Krebspatienten (FBK-R10) entwickelt. Im Zuge einer dreimonatigen Pilotstudie füllten insgesamt n = 69 Patientinnen den Fragebogen auf einem Tablet-PC aus. Abhängig von den Ergebnissen des Screenings wurde innerhalb des KIS automatisch ein klinischer Auftrag an die psychoonkologische Abteilung ausgelöst. Anhand von Evaluationsbögen bewerteten Patientinnen und die anleitenden Pflegefachkräfte die Machbarkeit und Akzeptanz von Screen2Care. Die Patientinnen (n = 39) beurteilten das elektronische Screening sehr positiv. Die Pflegefachkräfte (n = 13) berichteten, dass sie das elektronische Screening gegenüber einem Papierscreening bevorzugen. Die Handhabung der Screening-Software wurde als unkompliziert und als für neue Anwender leicht erlernbar empfunden. Der Zeitaufwand für das Screening und damit die Integration in den Arbeitsalltag wurde jedoch kritisch beurteilt. Im Rahmen der Pilotstudie konnte die Machbarkeit und Akzeptanz von Screen2Care bestätigt werden. Der größte Fortschritt des Systems liegt in der Anbindung an das KIS und damit in der Automatisierung von psychoonkologischen Konsilanforderungen.