Caring for dependent children impacts practical and emotional problems and need for support, but not perceived distress among cancer patients.

OBJECTIVE: More than one in 10 cancer patients care for dependent children. It is unclear whether this status makes a difference in terms of the distress and associated problems they experience, or whether it is linked to differences in the need for or utilization of psychosocial support. METHODS: Secondary analysis of a cross-sectional German study in National Comprehensive Cancer Centers using self-report standardized questionnaires administered to inpatients. Patients living with dependent children (n = 161) were matched by age and sex with a subsample of 161 cancer patients not living with dependent children. The resulting sample was tested for between-group differences in Distress Thermometer (DT) scores and the corresponding DT Problem List. Additionally, between-group differences in measures of the need for and utilization of psychosocial support were examined. RESULTS: More than 50% of all patients suffered from clinically relevant distress. Patients living with dependent children reported significantly more practical (p < 0.001, η2 p = 0.04), family (p < 0.001, η2 p = 0.03), and emotional problems (p < 0.001, η2 p = 0.01). Although reporting a greater need for psychological support, parents with cancer were not found to more frequently utilize any type of psychosocial support. CONCLUSIONS: The specific problems and needs of parents with cancer who care for dependent children are currently not sufficiently addressed in the clinical care pathways. All families should be helped to establish open and honest communication as well as understand the available support systems and what they can provide. Tailored interventions should be implemented for highly distressed families.

A psycho-oncological online intervention supporting partners of patients with cancer (PartnerCARE): Results from a randomized controlled feasibility trial.

OBJECTIVE: Partners of cancer patients are the primary supporters and burdened at the same time. Support for partners is hitherto scarce and existing offers are rarely used. The PartnerCARE online intervention was specifically developed to address the caregiving partners' needs. This two-arm parallel randomized controlled trial (RCT) evaluates the feasibility, acceptability, and potential efficacy of PartnerCARE. METHODS: Sixty German-speaking partners of patients with various cancer entities were randomized into two conditions: intervention group (IG) with PartnerCARE (N = 30) or waitlist-control group (N = 30). Participants completed online questionnaires at baseline (T0), post-treatment (T1) and 4-months follow-up (T2). Feasibility and acceptability outcomes included dropout rates, use and acceptance of PartnerCARE, individual user/e-coach feedback as well as negative effects. Relevant efficacy outcomes were assessed to test for potential intervention effects. RESULTS: Recruitment success illustrates demand for and acceptability of PartnerCARE. Satisfaction with the intervention was high (Client Satisfaction Questionnaire adapted to Internet-based interventions, T1: M = 24.66, SD = 6.42) and 73.3% of participants completed the intervention. Study dropout rate was low (T1: 17%, T2: 29%). More positive than negative side effects of the intervention were identified, and negative ones were mainly related to "intrapersonal change". For efficacy outcomes we found effects over time, with strongest effects within the IG from T0 to T1 in psychological distress (d = 0.73, 95%-CI: [0.34; 1.12]) and anxiety (0.66, [0.26; 1.04]), but no group effects were significant at T1 and T2. CONCLUSIONS: PartnerCARE is feasible, acceptable and potentially efficacious. Based on received feedback, PartnerCARE is currently undergoing further development and subsequently efficacy will be investigated in a RCT. TRIAL REGISTRATION: German Clinical Trial Registration: DRKS00017019. Registered on 08 April 2019.

Return to work after cancer: Improved mental health in working cancer survivors.

OBJECTIVE: Aim of the study was to compare working and non-working patients over a period of 12 months regarding socio-demographic, cancer-specific and mental health parameters. METHODS: This study was conducted as part of a Germany-wide longitudinal survey among 1398 patients in 13 national Comprehensive Cancer Centers. The sample used for analysis consisted of n = 430 cancer patients younger than 65 years (age M = 52.4 years, SD = 8.1; 67.0% females). Socio-demographic, cancer-specific and mental health parameters (Depression: Patient Health Questionnaire, Anxiety: Generalized Anxiety Disorder Scale, Distress: Distress Thermometer) were assessed at baseline during hospitalization and at 12 months follow-up. RESULTS: 73.7% of all patients (n = 317) have returned to work after one year. While working and non-working patients did not differ in socio-demographic parameters, there were significant differences in the presence of metastases, tumor and treatment status. Mixed analysis of variances revealed significant interactions between working status and time for depression (p = 0.009), anxiety (p = 0.003) and distress (p = 0.007). Non-working patients reported higher levels of depression, anxiety and distress than working patients over time. A logistic regression showed significant associations between lower depression (p = 0.019), lower distress (p = 0.033) and the absence of a tumor (p = 0.015) with working status. CONCLUSIONS: The majority of cancer survivors returned to work. Non-working patients had higher levels of depression, anxiety and distress than working patients. After controlling for cancer-specific factors, mental health parameters were still independently associated with working status. Return to work can thus be associated with an improved mental health in cancer survivors. In order to establish causality, further research is necessary.

Dyadic coping and social support: Various types of support in hematooncological patients and their spouses-Associations with psychological distress.

OBJECTIVE: Patients and spouses use various support strategies to deal with cancer and its associated burden. Support can be perceived within the dyad [perceived dyadic coping (PDC)] or from others [perceived social support (PSS)]. The present study investigates the association of PDC and PSS with depression and anxiety symptoms experienced by hematooncological dyads. METHODS: A total of 330 hematooncological dyads participated in the study. Dyadic Coping Inventory (DCI) including perceived stress communication and four PDC strategies (supportive, negative, delegated, common), ENRICHED Social Support Instrument (ESSI) and Patient Health Questionnaire-4 (PHQ-4) are used for assessment. To take nonindependence of patient's and spouse's variables into account, data are analyzed with the Actor-partner-interdependence model (APIM). RESULTS: Hematological cancer patients and their spouses reported a similar level of depression and anxiety symptoms. Perceived negative dyadic coping (DC) was adversely related with both patient's and spouse's outcomes (all p < 0.01) and perceived positive DC was adversely related with depression symptoms in both and anxiety symptoms in spouses (all p < 0.05). More PSS was associated with less depression and anxiety symptoms in both (all p < 0.05), and spouse's PSS (b = -0.04, p < 0.05) was significantly associated with patient's depression symptoms. CONCLUSIONS: This study highlights the association between perceived negative DC, perceived positive DC and PSS with depression and anxiety symptoms. Focus should be on enhancement of PSS especially in spouses, as they experience a comparable amount of psychosocial distress and have considerable impact on the patient's wellbeing.

Impact of social support on psychosocial symptoms and quality of life in cancer patients: results of a multilevel model approach from a longitudinal multicenter study.

Background: This prospective multicenter study aimed to investigate the courses of positive support (PS) and detrimental interaction (DI), two different aspects of social support, and the relation between social support and psychosocial distress and/or health-related quality of life (HRQOL) in a large sample of patients with different cancers. Methods: For this observational study, we enrolled adult patients with cancer from 13 comprehensive cancer centers (CCCs) in Germany. We included a total of 1087 patients in our analysis. We assessed the outcomes via standardized self-report questionnaires at three measurement points: at admission for acute care (T1), 6 (T2) and 12 months (T3) thereafter. Our outcome variables included PS and DI, depression and anxiety symptoms, distress, mental quality of life (MQoL) and physical QoL (PQoL). Data were analyzed using three-level hierarchical linear modeling (HLM) and group-based trajectory modeling. Results: During the first year after the cancer diagnosis, both PS and DI decreased in our sample. Baseline depression symptom severity was a significant predictor of PS and DI. Further analyses revealed significant associations between PS, DI and the course of depression and anxiety symptoms, and MQoL. PS buffered the negative effects of DI with regards to these variables. Low DI was associated with better PQoL, whereas PS was not. In general, the impact of social support on psychosocial outcomes was weak to moderate. Conclusions: Our findings provide evidence for the influence of PS and DI on psychosocial symptoms and HRQOL, and emphasize the importance of psycho-oncological interventions that strengthen PS and prevent or reduce DI for patients with cancer and their relatives.

Psychosocial distress and utilization of professional psychological care in cancer patients: An observational study in National Comprehensive Cancer Centers (CCCs) in Germany.

OBJECTIVE: The study aimed to assess cancer patients' use of psychological care and its correlates in a large sample of cancer patients in Comprehensive Cancer Centers (CCCs) in Germany. METHODS: In a multicenter study in Germany, cancer patients with various diagnoses were evaluated for self-reported use of psychological support. We measured psychological distress, depression and anxiety, quality of life, and social support with standardized questionnaires and analyzed its association with the utilization of psychological care using multivariable logistic regression. This paper focuses on a cross-sectional analysis of the data assessed during inpatient care. RESULTS: Three thousand fifty-four (50%) of hospitalized patients were asked for participation, and n = 1632 (53.6%) participated. We were able to analyze n = 1,398 (45.9%) patients. Three hundred ninety-seven (28.4%) of the sample utilized psychological support. Users of psychological care were significantly younger than nonusers (odds ratio [OR]: 0.967, P < 0.001) and were more often female (OR: 1.878, P < 0.001), whereas educational level was not associated with the use of psychological care. In the multivariable analysis, effects on the use of psychological care were observed for Hospital Anxiety and Depression Scale (HADS) anxiety (OR: 1.106, P = 0.001) and both subscales of the 12-item Short Form Health Survey (SF-12) quality of life measure (mental, OR: 0.97, P = 0.002; physical, OR: 0.97, P = 0.002). CONCLUSION: Psychological distress and anxiety are higher, and quality of life is lower in users of psychological care in comparison with nonusers during inpatient cancer treatment. Although psychooncological services should be provided to all patients who need them, special efforts should be made to reach populations that report low utilization.

[Dyadic Coping of Patients with Haemato-Oncological Diseases and their Partners: Discrepancy Indexes and Association with Social Support and Psychological Distress]. / Dyadisches Coping von hämatoonkologischen Patienten und ihren Partnern: Übereinstimmungsmaße und Zusammenhänge mit sozialer Unterstützung und psychischer Belastung.

BACKGROUND: Cancer is often associated with negative psychosocial consequences not only for patients but also for their partners. These consequences are also influenced by the applied coping strategies. OBJECTIVE: The study examines the influence of Dyadic Coping (DC) on social support and psychological distress (symptoms of depression and anxiety) in haemato-oncological patients and their partners. Of particular interest is the significance of dyadic accordance (conformity) of the assessment of DC ("discrepancy indexes"). METHODS: The study investigates 330 couples (haemato-oncological patients and their partners, average age patient 57.0 years, 63.3 percent male, 25.8 percent acute leukemia). In addition to Dyadic Coping Inventory (DCI), standardized instruments are used. Research data is being analyzed with t-tests, partial correlation and regression. RESULTS: Patients and partners use similar dyadic coping strategies, whereby partners assess coping behaviors of patients more accurately than vice versa. Regarding social support, the DC total score plays a more decisive role than discrepancy indexes, in particular with patients (R2=20.4%). Conversely, discrepancy indexes explain a large part of the patients' variance (R2=10.2%); regarding psychological stress, the DC total score shows no effects in this model. DISCUSSION: The results demonstrate the relevance of the DC discrepancy indexes as a measure for interpersonal accordance for psychosocial outcomes, especially for psychological distress. Further application-related research is necessary to generate reliable statements about these associations.

Associations between dyadic coping and supportive care needs: findings from a study with hematologic cancer patients and their partners.

PURPOSE: The way couples mutually cope with hematologic cancer is likely to influence their levels of supportive care needs (SCN). Therefore, this study evaluated the levels of dyadic coping (DC) and SCN and the concurrent associations between both variables. METHODS: Three hundred thirty patients with a hematologic malignancy (63% male) and their partners completed the dyadic coping inventory (DCI) and the supportive care needs survey (SCNS-SF-34-G). The levels of dyadic coping (DC) and supportive care needs (SCN) were compared with representative validation samples. Correlational analyses and actor-partner interdependence models (APIM) were calculated to estimate the association between DC and SCN. RESULTS: Partners' stress communication of cancer patients (as part of DC) was decreased in contrast to that of a non-cancer sample. The perception of partners' delegated DC was higher (both with a moderate effect size of g ≥ |0.50|). SCN of patients and partners were lower in the dimensions health system/information and physical problems/daily living in contrast to those of a cancer patients' validation sample (both with a small effect of g ≥ |0.20|). Higher perceptions of partners' negative DC were associated with higher SCN for both patients and partners. The same was true for patients' own stress communication and SCN, but only for the patients. Sociodemographic and illness-related factors were only partially related with the SCN of patients and partners. CONCLUSIONS: In order to diminish SCN of patients and partners, a possible way is to strengthen the quality of the dyadic relation. Due to its associations with elevated SCN, stress communication and negative dyadic coping behaviours may be useful targets for psychosocial interventions.

Digital psychosocial interventions for individuals with spinal cord injury: a scoping review.

Objective: To provide an overview of the digital mental health care landscape for individuals with spinal cord injury (SCI). Methods: PubMed, PsycInfo, and PSYNDEX were searched for articles meeting the following criteria: (1) article written in English or German; (2) digital psychosocial intervention; (3) SCI only; (4) treatment of individuals with SCI and not their relatives or caregivers. Records were screened by title and abstract and records meeting the inclusion criteria were obtained for full text screening. The references of identified articles were screened to find further relevant articles. The literature search was updated before submission. Risk of Bias was assessed by using the Cochrane risk-of-bias tool for randomized trials (RoB 2) and a narrative synthesis was conducted. Results: Ten randomized-controlled trials (RCT) and ten non-randomized-controlled trials were identified and compared in this review, evaluating twelve internet- and mobile-based interventions, five smartphone apps, and three virtual reality applications. The interventions were primarily used as stand-alone aftercare programs. While some were not based on any theory, cognitive behavioral therapy mostly served as the theoretical basis for the online interventions. The extent of human support also varied greatly between the studies. The number of intervention modules ranged between 2 and 72. There were also major differences in outcome variables and effects. A meta-analytical evaluation of the data was not conducted due to heterogeneity of studies. Conclusion: Digital applications to promote the psychosocial health of individuals with SCI are an emerging field of research with many treatment approaches still to come. First high quality RCT studies report promising results. Unfortunately, not all studies are of high quality or the interventions have been insufficiently adapted to the needs of people with SCI. Therefore, more research is needed to further develop applications, and to generalize and test the effects found in the long term.

12-Month Trajectories of Health-Related Quality of Life Following Hospitalization in German Cancer Centers-A Secondary Data Analysis.

Patient-reported outcomes (PROs) offer a diverse array of potential applications within medical research and clinical practice. In comparative research, they can serve as tools for delineating the trajectories of health-related quality of life (HRQoL) across various cancer types. We undertook a secondary data analysis of a cohort of 1498 hospitalized cancer patients from 13 German cancer centers. We assessed the Physical and Mental Component Scores (PCS and MCS) of the 12-Item Short-Form Health Survey at baseline (t0), 6 (t1), and 12 months (t2), using multivariable generalized linear regression models. At baseline, the mean PCS and MCS values for all cancer patients were 37.1 and 44.3 points, respectively. We observed a significant improvement in PCS at t2 and in MCS at t1. The most substantial and significant improvements were noted among patients with gynecological cancers. We found a number of significant differences between cancer types at baseline, t1, and t2, with skin cancer patients performing best across all time points and lung cancer patients performing the worst. MCS trajectories showed less pronounced changes and differences between cancer types. Comparative analyses of HRQoL scores across different cancer types may serve as a valuable tool for enhancing health literacy, both among the general public and among cancer patients themselves.

Predictors of cancer patients' utilization of psychooncological support: Examining patient´s attitude and physician´s recommendation.

PURPOSE: Patients with cancer suffer from a wide range of psychological distress. Nevertheless, in the literature low utilization rates of psychooncological services are reported. Various factors may influence the utilization of professional support during inpatient care. Up to now it is unclear to what extent patients' attitude towards psychooncological support and physicians' recommendation for psychooncological care may influence the utilization. METHODS: In a multicenter longitudinal observational study in Comprehensive Cancer Centers Germany, 1398 patients with mixed cancer diagnoses were assessed at baseline during their hospital stay with respect to psychooncological distress and the need for and use of psychooncological services. RESULTS: Psychooncological support was used by almost 28.4% of patients up to this time. A positive attitude towards psychooncological support was reported by 41.6%. A recommendation of psychooncological support by a physician was received by 16.2%. These patients reported a significant higher level of distress compared to patients who did not received a recommendation. Multivariable logistic regression detected that the utilization rate was 3.79 times higher among patients with positive attitude towards psychooncological support (OR, 3.79; 95% CI 2.51-5.73, p < 0.001). Utilization was 4.21 times more likely among patients who received a physician´s recommendation (OR, 4.21; 95% CI 2.98-5.95, p < 0.001). CONCLUSION: The results of the study provide evidence of the relevance of giving more attention to psychooncological distress and attitudes towards psychooncological care. To reduce reservations, patients need low-threshold information about the psychooncological services offered.

Couples Coping With Hematological Cancer: Support Within and Outside the Couple - Findings From a Qualitative Analysis of Dyadic Interviews.

Objective: Cancer affects the patients as well as their partners. Couples use different strategies to cope with cancer and the associated burden: individual coping, dyadic coping, and support from the social network and from professional health care. The aim of this qualitative dyadic interviews is to gain a deeper and more differentiated understanding of the support system inside and outside of the couple. Methods: Ten heterosexual couples (patients: seven men and three women) with different ages (patients: range = 22-75; spouses: range = 22-74), different hematological cancer (e.g., acute myeloid leukemia, non-Hodgkin's lymphoma) and cancer stages (initial diagnosis or relapse) participated in the study. Semi-structured dyadic interviews were conducted. Data of the verbatim transcripts were systematically coded and analyzed following structuring content analysis. Results: Three main categories (individual coping, dyadic coping, and outside support) and ten subcategories about coping and support strategies in hematological cancer patients and their spouses could be identified. All couples described cohesion in relationship as an essential common dyadic coping strategy. Most strategies were focused on the patient's wellbeing. Furthermore, couples reported different common plans for the future: while some wanted to return to normality, others were reaching out for new goals. Conclusion: Couples used various coping and support strategies, that differed in type and frequency between patients and spouses. Most of the strategies were perceived as beneficial, but some also triggered pressure. Overall, spouses seem to need more psychological support to improve their own wellbeing.

Information needs in cancer patients across the disease trajectory. A prospective study.

OBJECTIVE: As satisfaction with information received is an important precondition of adherence to treatment in cancer patients, we aimed to examine the level of perceived information, information satisfaction and information needs, and examine the prospective association between information satisfaction and anxiety. METHODS: In a multicenter study in Germany, 1398 cancer patients were evaluated in terms of this at baseline, after 6 and 12 months. RESULTS: At baseline, the majority of patients reported to feel well-informed. Nevertheless, a considerable proportion reported to wish more information. The proportion of patients reporting unmet information needs declined over time (p < 0.001). Anxiety at baseline is negatively associated with information satisfaction after 6 months (ß = -0.10, p < 0.01). Conversely, information satisfaction at baseline is negatively associated with anxiety after 6 months (ß = -0.10, p < 0.01). At 12 months, only the negative path leading from anxiety to information satisfaction was significant (ß = -0.12, p < 0.01). CONCLUSION: We found high levels of information received and high information satisfaction. Nevertheless, there was a considerable quantity of unmet information needs. A bidirectional relationship between information satisfaction and anxiety symptoms emerged after 6 months. PRACTICE IMPLICATIONS: These results underline the priority of providing information and emotional support to cancer patients to improve satisfaction with information.

Psychological interventions targeting partners of cancer patients: A systematic review.

PURPOSE: Cancer patients' intimate partners often experience levels of psychological burden that are comparable to or even exceed that of the patients, making it imperative that they too be provided with appropriate psychological support. This review aimed to present the content and the effects of interventions delivered to caregiving partners of cancer patients on both partners and patients. Furthermore, we provide information about the acceptability of the interventions and study quality. METHODS: An initial search in Web of Science, PsycINFO, and PubMed databases was conducted. We included RCTs as well as pre-post studies that focused on enhancing partners' wellbeing or diminishing partners' distress. To be included, interventions had to have been offered to partners either only or predominantly. We included studies published until December 2017. The methodological quality of the trials was assessed with the EPHPP assessment tool. RESULTS: Nine studies met the inclusion criteria. Intervention topics included social support, short-term problem solving, the marital relationship quality, role expectations, emotional resilience, and coping strategies. Positive intervention effects were found with regard to social support, emotional distress, improved communication, posttraumatic growth, self-efficacy, and coping. Despite considerably low response rates, the interventions were generally well accepted. Most of the studies suffer limitations because of methodological flaws, the lack of randomization, and small sample sizes. CONCLUSION: Interventions delivered to partners of cancer patients may have positive effects on both partners and patients. We derive several implications for future research: Intervention programs should be tailored to the specific needs of caregiving partners with regard to the cancer trajectory and gender. Effort has to be made to increase sample sizes as well as to include particularly burdened individuals. Selected measurement instruments should be sensitive to specific intervention effects. Finally, information on both statistical as well as clinical relevance of research findings should be provided.

Dyadic coping of patients with hematologic malignancies and their partners and its relation to quality of life - a longitudinal study.

Coping with cancer can potentially modify couples' quality of life (QoL). The predictive impact of dyadic coping (DC) on QoL was investigated within patients with hematological cancer and their partners. Data were collected in a multi-centre longitudinal study (N = 208 couples). We use the SF-12 questionnaire (QoL) and the Dyadic Coping Inventory. Data were mainly analyzed with actor-partner interdependence models (APIM). Within the APIM, baseline QoL was the most significant predictor for QoL (t2). Regarding DC, there were partner effects on physical QoL (t2) and actor and partner effects on mental QoL at t2. Different subtypes of DC have intra- and/or interpersonal impact on patient's or partner's QoL. In a clinical setting, patients as well as partners should be seen as both a source of support for each other and as individuals in need of support themselves. Such awareness and targeted intervention may help couples adapt to and cope with cancer.