Background There is a significant number of long-term breast cancer survivors in Germany. However, research on the psychological challenges of cancer survivors is limited. This analysis describes prevalence, development and determinants of depression and anxiety 5 to 6 years after diagnosis and identifies predictors for an increase of anxiety and depression over time. Methods Data from 164 women was collected by survey and tumour documentation during post-operative hospital stay, 40 weeks and 5 to 6 years after diagnosis. Anxiety and depression were measured by the Hospital Anxiety and Depression Scale. Sankey-diagrams were created for visual presentation of prevalence over time. Logistic and linear regression models were calculated to identify determinants of anxiety and depression. Results Respondents had higher levels of depression and anxiety 5 to 6 years than 40 weeks after the diagnosis. Lower vocational status and having children were associated with depression, surgery type was correlated with anxiety, and age, as well as comorbidities, were predictors for both anxiety and depression 5 to 6 years after diagnosis. An increase of depression over time was more likely when having children and comorbidities. An increase in anxiety was less likely after cancer recurrence. Conclusions Findings highlight that anxiety and depression are relevant burdens for breast cancer survivors in Germany. Several sociodemographic and clinical predictors are identified. There is need for psychosocial support after acute treatment and in the long-term. Research on psychological burdens of long-term breast cancer survivors in the identified vulnerable groups is needed.
Background Despite the progress of research and treatment for breast cancer, still up to 30% of the patients afflicted will develop distant disease. Elongation of survival and maintaining the quality of life (QoL) become pivotal issues guiding the treatment decisions. One possible approach to optimise survival and QoL is the use of patient-reported outcomes (PROs) to timely identify acute disease-related burden. We present the protocol of a trial that investigates the effect of real-time PRO data captured with electronic mobile devices on QoL in female breast cancer patients with metastatic disease. Methods This study is a randomised, controlled trial with 1:1 randomisation between two arms. A total of 1000 patients will be recruited in 40 selected breast cancer centres. Patients in the intervention arm receive a weekly request via an app to complete the PRO survey. Symptoms will be assessed by study-specific optimised short forms based on the EORTC QLQ-C30 domains using items from the EORTC CAT item banks. In case of deteriorating PRO scores, an alarm is sent to the treating study centre as well as to the PRO B study office. Following the alarm, the treating breast cancer centre is required to contact the patient to inquire about the reported symptoms and to intervene, if necessary. The intervention is not specified and depends on the clinical need determined by the treating physician. Patients in the control arm are prompted by the app every 3 months to participate in the PRO survey, but their response will not trigger an alarm. The primary outcome is the fatigue level 6 months after enrolment. Secondary endpoints include among others hospitalisations, use of rescue services and overall QoL. Discussion Within the PRO B intervention group, we expect lower fatigue levels 6 months after intervention start, higher levels of QoL, less unplanned hospitalisations and less emergency room visits compared to controls. In case of positive results, our approach would allow a fast and easy transfer into clinical practice due to the use of the already nationwide existing IT infrastructure of the German Cancer Society and the independent certification institute OnkoZert. Trial registration DRKS (German Clinical Trials Register) DRKS00024015. Registered on 15 February 2021
Background There has been increasing interest in integrating patient-reported outcomes (PROs) into routine oncological practice. To date, however, PROs have rarely been implemented in Germany. Currently, PROs are being used as performance measures in colorectal cancer centers in Germany. This content analysis identified factors that may inhibit or facilitate the additional use of PROMs for individual patient management. Methods The analysis follows an exploratory approach. Out of 103 centers that participated in a multicentric PRO quality management and benchmarking program in Germany, twelve oncological health-care providers from eight certified colorectal cancer centers were interviewed using a semi-structured interview guide. The interviewees were clinicians (physicians, nurses, psycho-oncologist and physician assistant) who care for colorectal cancer patients. This analysis evaluated whether and how PROs that are primarily collected for quality management/benchmarking reasons could also be used for the management of individual patients. The data was analyzed using a content-analysis approach. Results The interviewees were not using PRO in their routine clinical work, but they recognized its added value and pointed out potential example uses. Identified inhibiting factors for the use of PROs in clinical routine work were effortful access to PRO reports, lacking coordinating structures, time delays and time points of measurements as well as redundancy with other instruments. Facilitating factors for the use of PROs in clinical routine work that were identified included access via electronic patient records, implementation of coordinating structures for PRO processes in the center, clear PRO reports that are easy to interpret, and measurements at relevant time points. Discussion Clinicians had quite a positive attitude toward PROs and recognized their added value. Inhibiting and facilitating factors of an organizational and technical nature were identified. Conclusions These findings indicate how PROs used for quality management purposes may also be used for the management of individual patients. Therefore, existing structures and processes in the certified colorectal cancer centers, as well as lessons learned from the literature on the implementation of PROs monitoring individual patients need to be taken into account.
Background Cancer patients often suffer from psychological distress. Psycho‐oncological services (POS) have been established in some health care systems in order to address such issues. This study aims to identify patient and center characteristics that elucidate the use of POS by patients in prostate cancer centers (PCCs). Methods Center‐reported certification and patient survey data from 3094 patients in 44 certified PCCs in Germany were gathered in the observational study (Prostate Cancer Outcomes). A multilevel analysis was conducted. Results Model 1 showed that utilization of POS in PCCs is associated with patients’ age (OR = 0.98; 95%‐CI = 0.96‐0.99; P < .001), number of comorbidities (1‐2 vs 0, OR = 1.27; 95%‐CI = 1.00‐1.60; P=.048), disease staging (localized high‐risk vs localized intermediate risk, OR = 1.41; 95%‐CI = 1.14‐1.74; P < .001), receiving androgen deprivation therapy before study inclusion (OR = 0.19; 95%‐CI = 0.10‐0.34; P < .001), and hospital teaching status (university vs academic, OR = 0.09; 95%‐CI = 0.02‐0.55; P = .009). Model 2 additionally includes information on treatment after study inclusion and shows that after inclusion, patients who receive primary radiotherapy (OR = 0.05; 95%‐CI = 0.03‐0.10; P < .001) or undergo active surveillance/watchful waiting (OR = 0.06; 95%‐CI = 0.02‐0.15; P < .001) are less likely to utilize POS than patients who undergo radical prostatectomy. Disease staging (localized high‐risk vs localized intermediate risk, OR = 1.31; 95%‐CI = 1.05‐1.62; P = .02) and teaching status (university vs academic, OR = 0.08; 95%‐CI = 0.01‐0.65; P = .02) are also significant predictors for POS use. The second model did not identify any other significant patient characteristics. Conclusions Future research should explore the role of institutional teaching status and whether associations with therapy after study inclusion are due to treatment effects – for example, less need following radiotherapy – or because access to POS is more difficult for those receiving radiotherapy.
Objective This study explores rehabilitation processes in long‐term cancer survivors (CSs) and explains the causes, contexts, and consequences under which decisions related to rehabilitation are made. Methods Within the mixed‐methods Breast Cancer Patients' Return to Work (B‐CARE) project, conducted from 2018–2020, data were collected through a written survey and semi‐structured interviews with CSs 5–6 years after their diagnosis. In total, 184 female CSs participated in the survey, and 26 were interviewed. A qualitative grounded theory approach was applied. Results The 26 interviewees were 57 years old on average, 70% were married, and 65% had children. The participants experienced incompatibilities caused by the cancer disease in their areas of life and the demands that arose from it. To reconcile demands from the areas family, work, leisure time, household, and disease, the interviewed CSs used different coping mechanisms and adjusted their lives by prioritizing certain areas as a consequence. This prioritizing was often to the detriment of work and rehabilitation. Furthermore, it worked as a barrier for participation in rehabilitation programs and explains why CSs experienced job changes after their return to work. Conclusions Physical and mental long‐term effects were observed in the interviewees' lives 5–6 years into survival. The study results stress the importance of individualized and needs‐oriented survivorship care.
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