Prevalence and determinants of anxiety and depression in long-term breast cancer survivors.

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.

Individual courses and determinants of fear of cancer recurrence in long-term breast cancer survivors with and without recurrence.

OBJECTIVE: This study investigated the prevalence, individual courses, and determinants of fear of cancer recurrence (FoR) in long-term breast cancer survivors (BCSs) with and without recurrence. METHODS: A total of 184 breast cancer survivors were surveyed at four measurement time points: during hospitalization (T1), 10 weeks (T2), 40 weeks (T3), and 5-6 years (T4) after hospital discharge. Descriptive statistics, chi-square tests, and logistic regression were performed. RESULTS: Respondents were females and 57 years old, on average. At T1, T3, and T4, 54.8%, 31.6%, and 29.7% of BCSs, respectively, were classified as having dysfunctional levels of FoR. Dysfunctional FoR decreased from T1 to T3 (χ2(1) = 17.11, p = 0.000; N = 163) and remained stable afterwards. Eight subgroups of individual courses of FoR over time could be described: (1) constant functional FoR; (2) constant dysfunctional FoR; (3) improving from dysfunctional to functional FoR from T1 to T3; (4) improving from dysfunctional to functional FoR from T3 to T4; (5) worsening from functional to dysfunctional FoR from T1 to T3; (6) worsening from functional to dysfunctional FoR from T3 to T4; (7) dysfunctional FoR at T1 and T4, and functional FoR in between; and (8) functional FoR at T1 and T4, and dysfunctional FoR in between. Logistic regression analysis revealed that being divorced/widowed, showing high levels of fatigue, being treated by chemotherapy, and having low confidence in treatment were associated with dysfunctional FoR 5 to 6 years after diagnosis (Nagelkerkes' Pseudo-R2 = 0.648). CONCLUSIONS: The findings reveal that FoR is a significant issue in long-term BCSs and has the potential to become a persistent psychological strain. We emphasize the need for increased awareness of FoR among BCSs and the need for support programs.

Health literacy, mental disorders and fear of progression and their association with a need for psycho-oncological care over the course of a breast cancer treatment.

This studyinvestigates the need for psycho-oncological care over the course of a breast cancer treatment and possible associated factors to develop such a need. The PIAT-Study was a longitudinal postal survey study conducted in Germany (2013 to 2014) with breast cancer patients (BCPs). Patients received a questionnaire at three-time points (T1: few days after surgery, T2: after 10 weeks; T3: after 40 weeks). This study considers information about patients' needs for psycho-oncological care, their breast cancer disease, social support, anxiety, health literacy (HL) and sociodemographic information. Data were analysed with descriptive statistics and logistic regression modelling to estimate the association between a need for psycho-oncological treatment and patient characteristics. N = 927 breast cancer patients reported their psycho-oncological need. 35.2% of patients report at least at one measuring point to be in need for psycho-oncological care. In a multiple logistic regression, noticeable determinants for developing such a need are an inadequateHL(OR = 1.97), fear of progression (FoP) (OR = 2.08) and psychological comorbidities (OR = 8.15) as well as certain age groups. BCPs with a low HL, suffering from a dysfunctional level of FoP or mental disorders are more likely to develop a need for psycho-oncological care.

Health literacy and patient participation in multidisciplinary tumor conferences in breast cancer care: a multilevel modeling approach.

BACKGROUND: Decisions made in multidisciplinary tumor conferences (MTC) that consider patient preferences result in better patient outcomes. Furthermore, it has been shown that in some breast cancer centers in Germany, patients participate in MTCs and that participation is associated with sociodemographic and breast cancer center-related factors. Health literacy (HL) has been shown to be predictive for individual health behavior and is an important prerequisite for patient participation in healthcare. However, so far nothing is known about the association between HL and MTC patient participation. To close this gap in research, we analyzed which patient characteristics affect participation in MTCs and whether participation varies between breast cancer centers. METHODS: In a prospective, multicenter cohort study, newly diagnosed breast cancer patients were surveyed directly after surgery (T1) as well as 10 weeks (T2) and 40 weeks (T3) after surgery. After descriptive analysis, t-tests were conducted, correlations for independent variables were run, and logistic multilevel regression analysis was applied to estimate the association between patient participation in MTCs at T1 and HL (HLS-EU-Q16 [1]), sociodemographic and disease-related characteristics (n = 863 patients) and the variation between breast cancer centers (n = 43 centers). RESULTS: Descriptive results show that 6.8% of breast cancer patients took part in a MTC. The logistic multilevel regression model revealed that patients with an inadequately HL are less likely to participate in MTCs (OR = 0.31, 95%-CI = 0.1-0.9, Pseudo-R2 = 0.06), and participation is dependent on the breast cancer center (ICC = 0.161). CONCLUSIONS: These findings are the first to show significant differences in HL and patient participation in MTCs in a large sample of breast cancer patients. In future research on patient participation in MTCs and HL, questions concerning the organization, communication and decision-making in MTCs with and without patient participation have to be addressed, and patient and provider perspectives must be equally considered. TRIAL REGISTRATION: Database Health Services Research, VfD_PIAT_12_001630 , registered prospectively on 01.03.2012.

Sociodemographic and disease-related determinants of return to work among women with breast cancer: a German longitudinal cohort study.

BACKGROUND: Return to work (RTW) is a key parameter of outcome quality that ensures social participation. Therefore, this study analyses the sociodemographic and disease-related determinants of RTW among newly diagnosed breast cancer patients. METHODS: In a prospective, multicentre cohort study, breast cancer patients were surveyed three times: directly after surgery, after 10 weeks, and after 40 weeks. Logistic regression analysis was applied to estimate the association of RTW at 40 weeks following discharge with sociodemographic and disease-related characteristics (n = 577). RESULTS: The sociodemographic variables "entrance certificate at a university of applied science" compared to "university entrance certificate" (OR = 3.1, 95%-CI = 1.2-8.1), age group "55-59 years" compared to "18-44 years" (OR = 3.2, 95%-CI = 1.2-8.4) and "having children" (OR = 2.8, 95%-CI = 1.2-6.2) as well as the disease-related variables "rehabilitation" (OR = 0.5, 95%-CI = 0.3-0.9), self-rated health "good" and "excellent" compared to "bad" (OR = 2.7, 95%-CI = 1.4-5.5; OR = 11.6, 95%-CI = 4.2-31.8) and the UICC-classification "stage II" and "stage III/IV" in comparison to "stage 0/I" (OR = 0.5, 95%-CI = 0.3-0.8; OR = 0.2, 95%-CI = 0.1-0.5) significantly affect RTW among breast cancer patients (Nagelkerke's Pseudo-R2 = 0.275). CONCLUSIONS: The findings show that significant differences in RTW exist between patient groups and suggest that RTW issues must be addressed more effectively before, during and after treatment. For future research on RTW in Germany, longitudinal studies with a follow-up of several years are necessary. Information and support deficits should be tackled by social services or breast care nurses. TRIAL REGISTRATION: Database Health Services Research, VfD_PIAT_12_001630 , registered 01.03.2012.

Does one size fit all? A qualitative study about the need for individualized information transfer for orthognathic patients.

AIMS: For any orthodontic-orthognathic treatment, it is crucial that patients are provided with enough and proper information in order to make evidence-based decisions- not only prior to treatment start, but also throughout the course of therapy. Thus, the objectives of this qualitative study were to identify information needs of patients undergoing combined orthodontic-orthognathic treatment. Additionally, professionals' perspectives were evaluated. METHODS: A qualitative research approach was chosen in order to determine crucial aspects of information needs before and throughout treatment. With respect to a purposive sampling strategy and thematic saturation, we conducted ten semi-structured interviews with patients who had finished their orthodontic-orthognathic surgery treatments (five women, five men; being 21 to 34 years old). The indications for the combination treatment were severe skeletal Class IIs to Class IIIs with various vertical and transverse discrepancies. In addition, a multidisciplinary focus-group with six professionals from the maxillofacial surgery and orthodontic department (three women, three men; being 30 to 38 years old) helped to reflect about the experts' point of views. After transcription, data was categorized and analyzed by Mayring's content analysis. RESULTS: We identified three key themes. During this analysis, we focused on theme (1) 'information transfer' with its corresponding categories 'information needs' - depending on different treatment stages -, 'source of information' and 'doctor-patient-communication'. The affected patients ranked individualized patient information and empathetic doctor-patient-communication high. This was mostly in line with the professionals' point of view. Verbal communication was seen as being the best way to communicate throughout treatment. The role of the internet as a source of information was seen diversely. CONCLUSION: This qualitative study highlights the need for individualized patient information and reveals both met and unmet information needs by patients. Although evidence-based written information is highly necessary for orthognathic patients and their families alike, it cannot replace an empathetic way of direct verbal doctor-patient-communication. It seems crucial to give specific individualized information at different treatment stages, starting at a thoroughly interdisciplinary screening at the very beginning.

Involuntariness of job changes is related to less satisfaction with occupational development in long-term breast cancer survivors.

PURPOSE: Considering that breast cancer survivors (BCSs) have been dealing with unwanted job changes after diagnosis, this study aimed to investigate involuntary job changes (unwanted modifications in employment since diagnosis) and explore the association between job changes, involuntariness, and occupational development satisfaction in BCSs 5-6 years after diagnosis. METHODS: Data were drawn from the mixed-methods breast cancer patients' return to work (B-CARE) study. We surveyed 184 female BCSs who were working at the time of study enrollment during hospitalization (T1), 10 weeks after discharge (T2), 40 weeks after discharge (T3), and 5-6 years after diagnosis (T4) and used descriptive measures and stepwise linear regression models for data analysis. RESULTS: The mean age of BCSs was 57 years. A total of 105 participants reported 410 job changes, of which 16.1% were reportedly (rather) involuntary. The most commonly reported involuntary changes were increased workload (15.2%) and increased scope of work (15.2%). In the final model, significant predictors of satisfaction with occupational development 5-6 years after diagnosis were age, state of health ΔT2-T3, state of health ΔT3-T4, and involuntariness of job changes. CONCLUSIONS: Although the number of job changes alone is not substantially associated with BCSs' satisfaction with occupational development, experiencing involuntary job changes is. Sociodemographic, disease-related, and work(place)-related factors may influence occupational satisfaction among BCSs. IMPLICATIONS FOR CANCER SURVIVORS: The findings indicate the importance of strengthening one's ability to work as desired to prevent involuntary job changes and enable desired work participation in long-term support. The significance of workplace characteristics highlights the need for employers to encourage satisfying work participation. TRIAL REGISTRATION NUMBER: German Clinical Trials Register (DRKS00016982), 12 April 2019.

Psycho-oncology care in breast cancer centres: a nationwide survey.

OBJECTIVE: To describe psycho-oncological care structures and processes in German breast cancer centres from the perspective of the centre administration. METHODS: The findings are based on a postal survey of a representative random sample of surgical sites of certified breast cancer centres in Germany. Data were collected in 2013 and 2014. The questionnaire included questions about infrastructure, patient information standards, psycho-oncological services and aspects of organisational culture. Data analyses included frequencies, means and bivariate relationships. RESULTS: The return rate was 88.3% (53 hospital sites). Psycho-oncological care is provided by permanent employees in 87%. The average number of full-time-equivalent employees (FTE) is 1.23. Most breast cancer centres engage the occupational group of psycho-oncologists for psycho-oncological care (90%), followed by the medical service (80%) and breast care nurses (78%) (multiple answers were possible). The correlation coefficient between FTEs and surgical treatments per year is not significant (r=0.292, p=0.051). Hospitals are screening every inpatient for the need of psycho-oncological support in 76% of all sites. Frequently used screening instruments are distress thermometer (19%), clinical interview (13%) and basic psycho-oncological documentation (11%). CONCLUSION: Our data provide insights into the self-reported structural and procedural quality of psycho-oncological care in German breast cancer centres. Further research should examine patient and caregiver perspective on the psycho-oncological services provided by breast cancer centres.

Health literacy and fear of cancer progression in elderly women newly diagnosed with breast cancer--A longitudinal analysis.

OBJECTIVE: This study aims to investigate the distribution of health literacy levels and the association of health literacy with fear of cancer progression (FoP) over the course of cancer treatment in a sample of elderly women newly diagnosed with breast cancer. METHODS: The analyses are part of a prospective, multicenter cohort-study (PIAT) that took place in Germany between 2013 and 2014. Elderly women (aged 65 years and older) newly diagnosed with breast cancer completed validated measures of health literacy and FoP directly after the breast cancer surgery and 40 weeks later. Multivariate random-effects regression analysis for longitudinal data was applied to estimate the association of health literacy with FoP considering socio-demographic, clinical and psychosocial characteristics of the patients. RESULTS: About half of the elderly breast cancer patients in our sample were classified as having limited health literacy (inadequate and problematic levels). Inadequate and problematic health literacy were significantly associated with higher levels of FoP in the elderly breast cancer patients. CONCLUSION: Limited health literacy is an independent risk factor for increased FoP. PRACTICE IMPLICATIONS: Enhancing health literacy could contribute to reducing patients' cancer-related fears.

Unmet information needs and limited health literacy in newly diagnosed breast cancer patients over the course of cancer treatment.

OBJECTIVE: To investigate unmet information needs in newly diagnosed breast cancer patients over the course of cancer treatment and its association with health literacy. METHODS: We present results from a prospective, multicenter cohort study (PIAT). Newly diagnosed breast cancer patients (N=1060) were surveyed directly after breast cancer surgery, 10 and 40 weeks later. Pooled linear regression modeling was employed analyzing changes in unmet information needs over time and its association with health literacy. RESULTS: Unmet information needs on side effects and medication and medical examination results and treatment options were high and increased during the first 10 weeks after breast cancer surgery. Considering health promotion and social issues, unmet information needs started high and decreased during post-treatment. Patients with limited health literacy had higher unmet information needs. CONCLUSION: Our results indicate a mismatch in information provision and breast cancer patients' information needs. Patients with limited health literacy may be at a distinct disadvantage in having their information needs met over the course of breast cancer treatment. PRACTICE IMPLICATIONS: Strategies are needed to reduce unmet information needs in breast cancer patients considering treatment-phase and health literacy and thereby enable them to better cope with their diseases.