Ute Goerling’s research while affiliated with Humboldt-Universität zu Berlin and other places

Purpose Stigmatization in cancer patients leads to poorer health-related outcomes. The effect of socioeconomic status (SES) on stigmatization has not been investigated. We therefore aim to investigate, which differences in stigmatization in cancer patients regarding SES exist up to one year after diagnosis and which medical and demographic characteristics are associated with stigmatization. Methods Patients with different solid cancer diagnoses were assessed within two months after diagnosis (t1) and at a 12-month follow-up (t2). Stigmatization was assessed using the Social Impact Scale (SIS), which comprises four dimensions: isolation, rejection, shame and financial insecurity. An SIS-total score can be computed. Bivariate and multiple regression analysis were performed. Results Six hundred-eighty patients completed the assessments (mean age 60.4; 51.2% male; most prevalent cancers: prostate (21.0%), skin (17.1%), breast (16.2%)). Stigmatization at t1 was moderate in all dimensions, independent of SES. It decreased at t2, especially in patients with middle or high SES (p < 0.001). Low SES was identified as a risk factor for stigmatization at t2 (p = 0.036 – p < 0.001). Other predictors include stigmatization at t1 as well as distress, disease stage and cancer diagnosis, e.g. lung cancer. The predictors explained 27–43% of the variance in stigmatization in the four dimensions resp. in the SIS-total score. Conclusion Stigmatization after cancer diagnosis was dependent of SES. Reasons may be fewer social and economic resources, lower health literacy and insufficient consideration of the specific needs of this patient group in the healthcare system. Implication for Cancer Survivors Patients with low SES should receive greater attention in the medical care system and in scientific research to identify and mitigate possible burdens and subsequent problems.

Background Organizing healthcare becomes ever more complex for people with chronic conditions. Additionally, a distinct separation of inpatient and outpatient care makes it even more difficult to provide coordinated and continuous care across sectors in Germany. Our interview study aimed to identify difficulties and unmet needs along the care continuum of patients with lung cancer and stroke in Germany. Methods Data were collected by qualitative interviews. A total of 40 participants with lung cancer (n=20) and stroke (n=20) were interviewed in the metropolitan region of Berlin, Germany. Data were interpreted through thematic analysis. Results We identified five main categories of difficulties and unmet needs: 1. Bureaucracy, 2. Unmet information needs, 3. Feeling left alone, 4. Difficulties and unmet needs in healthcare institution settings, and 5. Psychological and emotional stress. Results of our study show a high overlap between the experienced difficulties of both groups of patients. These include, in particular, bureaucratic obstacles, the lack of detailed information, poor coordination of care, and the feeling of being alone with the disease and its consequences. Conclusion Patients with complex care trajectories seem to have great need for coordinative, social, bureaucratic, and emotional support and these support topics are largely independent of the index disease. Hence, our research suggests that support offers focusing on social and coordination needs do not have to be disease-specific but can rather cover general needs of people with complex care situations.

Background and purpose: Dyadic coping (DC) considers the perception of both the individual and their partner’s coping behavior and influences various health outcomes. Given the paucity of research investigating the course of DC after a cancer diagnosis, we explored longitudinal data to find statistically distinct trajectories of DC and to characterize and predict those based on medical, psychological and sociodemographic characteristics. Materials and methods: In this prospective, multicenter study, we assessed patients with primary solid tumors at four measurement points using validated self-report questionnaires: first within 8 weeks of diagnosis, then at 6-month intervals. We measured DC using the Dyadic Coping Inventory (DCI). Clusters were identified via a feature-based clustering approach, characterized with t-tests and chi-squared tests and predicted with multinomial logistic regression. Results and interpretation: We analyzed data from 418 patients in a partnership (mean age 61 years, 55.3% men, 84.8% married). Most prevalent cancers were prostate cancer (25.6%), skin cancer (17.5%) and breast cancer (16.3%). One cluster (33.5%) reported a stable high trajectory of coping behavior, indicating good coping behavior. It had the following characteristics: male (62.9%), regularly employed (57.9%), prostate cancer (34.3%) and childless (27.1%). The remaining sample contained a cluster with increasing coping behavior (34.7%) and another with decreasing coping behavior (31.8%). Lack of regular employment, having children and generalized anxiety are significantly associated with worsening coping behavior. This study is one of the first to examine DC trajectories in a large sample of cancer patients in the early phase after diagnosis. It is essential to understand markers such as psychological stress or family and work-related issues to optimize clinical and psycho-oncological outcomes and facilitate the support or maintenance of couple-related disease management in the long term.

Relatives of cancer patients often experience a similar level of distress to the patients themselves; they too are confronted by the challenges of cancer and its treatment. Partnerships in particular can be affected by cancer. Couples can experience both positive (e.g., greater cohesion and strength) and negative challenges (especially in communicating about stressful topics such as fear, death, and dying). Strengthening couples to cope with the illness together increases the sense of togetherness and satisfaction with the partnership. Dyadic coping is particularly important here. The Dyadic Coping Inventory can help to record the processing of illness in couple relationships both at the behavioral level (what the partners do) and at the cognitive level (what the partners perceive in each case). A distinction can be made between positive and negative sub-forms and three discrepancy measures. The influence of coping on various outcomes, including illness-related outcomes, has been proven. Consideration of the psychosocial stress of relatives and the inclusion of relatives in care is therefore of great importance.

Purpose Due to the growing number of new oncological diagnosis and the accompanying psychosocial burden, needs-based psycho-oncological care is important. Adequate planning of psycho-oncological support services is therefore becoming increasingly important. In order to better implement psycho-oncological support services, we investigate psychosocial distress, perceived need and utilization of psycho-oncological support offers in newly diagnosed cancer patients. Methods Based on a multicenter prospective study, we assessed the cross-sectional data on psychosocial distress, perceived need and utilization of psycho- social support in patients with different tumor entities within 2 months after initial diagnosis. Psychosocial distress was assessed using the Distress Thermometer (DT). Results Of 1,003 eligible patients who completed the questionnaire (53.0% men, mean age 60.3 years) 39.7% (n = 390) showed above-threshold psychosocial stress (DT: scores ≥ 5) and 21% (n = 207) indicated a perceived need for psycho- social support. 13.5% (n = 136) showed both, psychosocial distress and perceived need for psycho- social support. 15.2% (n = 150) out of all participating patients used psycho-oncology service, 60.7% (n = 597) were willing to accept such an offer. Women were significantly more likely to be psychosocially distressed and to express a need for support. They were also significantly more likely to seek and be willing to accept psycho- social support. Conclusion Although most patients would accept a psycho- social service, regardless of whether there is psychosocial distress or a need is perceived, the actual utilization was relatively low. It can therefore be assumed that barriers, e.g. structural or personal ones, prevent access. These should be investigated in more detail in future studies.

Objective Individuals with low socioeconomic status (SES) exhibit higher rates of mental disorders; however, data in oncological populations are insufficient. This study investigated the course of DSM‐5 mental disorders in cancer patients, stratified by SES, over a period of 1.5 years following initial cancer diagnosis. Methods This multi‐center prospective longitudinal study assessed cancer patients within two months of cancer diagnosis (t1), and at 6‐, 12‐, and 18‐month follow‐up (t2–t4) using the SCID‐5 interview for mental disorders based on DSM‐5 criteria. Chi‐square‐tests were tested for frequency changes over time. A generalized linear mixed model (GLMM) was applied with fixed effects for SES and time on mental disorders. Results Out of 1030 patients with a SCID‐5 at baseline (53.2% men, 60 years), 821, 719 and 654 participated at respective follow‐ups. The most common diagnoses were skin and prostate cancer. Point prevalence of mental disorders was 20.9% at baseline, decreasing to 18.2%, 14.6%, and 15.0% (t2–t4; χ ² (3) = 15.3, p = 0.002). Patients with low SES consistently showed highest prevalence rates, whereas patients with high SES showed decreasing rates of mental disorders over time, with a main effect of time (χ ² (3) = 19.9, p < 0.001) and SES (χ ² (2) = 8.8, p = 0.01) in the GLMM. Two thirds never met diagnostic criteria for a mental disorder. Sensitivity analysis among study completers (n = 592) revealed a similar pattern to the main analysis. Conclusions Cancer patients with low SES exhibit impaired coping with cancer‐related stressors, increasing their risk for mental disorders. Social disparities affect physical and mental health, possibly via health behavior or health literacy, and need to be addressed by tailored survivorship care planning.

Objective Cancer places a psychological burden on both patients and their relatives. Perceived social support influences the extent of psychological distress. Our aim was to investigate associations between positive support, detrimental interactions, depression and anxiety in patient‐relative dyads in the initial period after diagnosis. Methods Patients with a solid tumor and their relatives participated in this prospective, multicenter observational study. Participants answered validated measures including the Illness‐specific Social Support Scale (SSUK‐8), the Patient Health Questionnaire (PHQ‐9) and the General Anxiety Disorder Scale (GAD‐7). We analyzed cross‐sectional data from the initial time following diagnosis with paired t‐tests and actor‐partner interdependence models. Results A total of 347 dyads of patients (mean age 59.9 years) and their relatives (mean age 56.7 years) participated. Compared to their relatives, patients reported significantly higher levels of depression (patients: M = 6.31, SD = 4.94; relatives: M = 5.44, SD = 4.77) and lower levels of anxiety (patients: M = 4.40, SD = 4.10; relatives: M = 4.98, SD = 4.47) as well as more positive support (patients: M = 14.31, SD = 2.07; relatives: M = 12.46, SD = 3.29) and a lower frequency of detrimental interactions (patients: M = 3.21, SD = 2.97; relatives: M = 3.66, SD = 2.93). Intrapersonal effects: Positive support was associated with lower distress only for relatives, whereas detrimental interactions were associated with higher distress for both patients and relatives (all p < 0.05). Interpersonal effects: More positive support and fewer detrimental interactions experienced by relatives were associated with lower patient distress (all p < 0.05). Conclusions Better support for relatives may not only reduce their own distress, but also patients' distress. Relatives experience similar levels of distress and poorer social support than patients.

Due to its poor prognosis, a diagnosis of gastric cancer represents a challenging situation for patients and healthcare providers, including psycho-oncological care. There has been little research about the extent to which patients experience distress and their use of support services. We aimed to examine (1) the distress and utilization of psychosocial support for patients with gastric cancer compared to other cancer types, (2) the evaluation of psychosocial support services in patients with gastric cancer, and (3) identify predictors of utilization behavior. The data analysis is based on pooled data of two multicenter research projects. The data of N = 89 gastric cancer patients and N = 1661 patients in the comparison group are analyzed (questionnaires included the distress thermometer with cutoff score ≥ 5 for over-threshold distress and our own questionnaire for the utilization/evaluation of psychosocial support services by patients). In addition to descriptive analysis methods, a binary-logistic regression is carried out to detect predictors of the utilization of psychosocial support. More than 40% of gastric cancer patients reported high levels of distress. Half of them use psychosocial support, most commonly social welfare/services advice and psychological support/psychotherapy. The latter was rated as the most helpful form of support. Younger age was found to be a significant predictor of utilization (odds ratio [OR] = 8.3; p < 0.01). There was weak evidence of an association between increased distress and use of psychosocial support (OR = 2.3; p = 0.19). In the face of high adjustment demands, psychosocial support can help patients with gastric cancer. Currently, this support is used less by older patients, although they report similarly high levels of distress. Providers should therefore make this group of people aware of the availability and content of psychosocial support, thus, facilitating access to psycho-oncological care.