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.

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.

Patients' perceived challenges, competencies, and supportive care needs during acute clinical treatment of breast or gynecological cancer.

OBJECTIVE: This study aimed to examine challenges, competencies, and supportive care needs (SCN) of women with breast or gynecological cancer during acute cancer treatment and associations to other health-related variables. METHODS: We surveyed 120 patients with breast or gynecological cancer at the end of acute cancer treatment, either directly after surgery or during adjuvant chemotherapy. We assessed challenges, subjective competencies, and SCN using a self-developed measure comprising 25 items referring to coping tasks assigned to six domains. In addition, patients' competencies and health literacy (HL) were assessed. RESULTS: Most patients felt at least moderately challenged by coping tasks concerning psychological distress (e.g., dealing with fears and insecurities, 70.2%; coping with cancer diagnosis, 69.6%) and physical complaints (e.g., dealing with a reduced physical capacity, 56.6%). About 42.5%-71.4% of patients who evaluated coping tasks as highly challenging felt competent to deal with these challenges themselves. Less than half of patients reported SCN, mainly regarding psychological concerns. The extent of challenging coping tasks, patients' perceived ability to overcome challenges themselves, and SCN showed associations to patient competencies and HL. CONCLUSIONS: SCN regarding psychological concerns and health behavior should be addressed in acute cancer care and rehabilitation programs. In addition, promoting HL might be essential in strengthening patients' subjective competencies related to various coping tasks.

Longer-Term Effects of Remote Patient Management Following Hospital Discharge After Acute Systolic Heart Failure: The Randomized E-INH Trial.

BACKGROUND: The randomized INH (Interdisciplinary Network Heart Failure) trial (N = 715) reported that 6 months' remote patient management (RPM) (HeartNetCare-HF) did not reduce the primary outcome (time to all-cause death/rehospitalization) vs usual care (UC) in patients discharged after admission for acute heart failure, but suggested lower mortality and better quality of life in the RPM group. OBJECTIVES: The Extended (E)-INH trial investigated the effects of 18 months' HeartNetCare-HF on the same primary outcome in an expanded population (N = 1,022) and followed survivors up to 60 months (primary outcome events) or up to 120 months (mortality) after RPM termination. METHODS: Eligible patients aged ≥18 years, hospitalized for acute heart failure, and with predischarge ejection fraction ≤40% were randomized to RPM (RPM+UC; n = 509) or control (UC; n = 513). Follow-up visits were every 6 months during RPM, and then at 36, 60, and 120 months. RESULTS: The primary outcome did not differ between groups at 18 months (60.7% [95% CI: 56.5%-65.0%] vs 61.2% [95% CI: 57.0%-65.4%]) or 60 months (78.1% [95% CI: 74.4%-81.6%] vs 82.8% [95% CI: 79.5%-86.0%]). At 60 and 120 months, all-cause mortality was lower in patients previously undergoing RPM (41.1% [95% CI: 37.0%-45.5%] vs 47.4% [95% CI: 43.2%-51.8%]; P = 0.040 and 64.0% [95% CI: 59.8%-68.2%] vs 69.6% [95% CI: 65.6%-73.5%]; P = 0.019). At all visits, health-related quality of life was better in patients exposed to HeartNetCare-HF vs UC. CONCLUSIONS: Although 18 months' HeartNetCare-HF did not significantly reduce the primary outcome of death or rehospitalization at 60 months, lower 120-month mortality in patients previously undergoing HeartNetCare-HF suggested beneficial longer-term effects, although the possibility of a chance finding remains.

[Patient Competence for Coping with Disease - A Qualitative Analysis in Women with Breast and Gynaecological Cancer]. / Patientenkompetenz zur Krankheitsbewältigung ­ Eine qualitative Analyse bei Frauen mit Brustkrebs und gynäkologischen Tumoren.

OBJECTIVE: The study explores challenges, competencies, and helpful support in coping with the disease of patients with breast cancer and gynaecological cancer and how patient competence as an interaction of these factors might be promoted. METHODS: Semi-structured interviews were conducted with 19 patients in acute care, 20 patients undergoing rehabilitation, and 16 participants in a self-help group and evaluated using qualitative content analysis. RESULTS: The challenges are summarised in the main categories - diagnosis processing, treatment/recurrence fears, illness processing and adaptation, worries about relatives, reactions of the social environment, and worries about the workplace. The named personal competencies in dealing with these challenges were assigned to the following main categories: cognition-related coping, action-related coping, self-regulation illness processing, obtaining and accepting support, self-determined communication of the illness, identifying and applying helpful strategies, illness-related experience, favourable life circumstances, openness to offers of help. Helpful emotional, informational or instrumental support is perceived by relatives, friends, animals, colleagues/employers, treatment providers, rehabilitation, fellow patients, self-help, and counselling facilities. DISCUSSION: The women describe a variety of competencies, which corresponds to a needs-oriented, self-directed coping process. The individuality and complexity of the interaction of the components of patient competence underline the relevance of patient-oriented care. Empowerment and an active patient role are necessary to promote their coping skills according to their needs. Support from practitioners or the private environment can reduce challenges or promote competencies and application.

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.

Decreased mental health, quality of life, and utilization of professional help in cancer patients with unexpressed needs: A longitudinal analysis.

BACKGROUND: Cancer patients' mental health and quality of life can be improved through professional support according to their needs. In previous analyses of the UNSAID study, we showed that a relevant proportion of cancer patients did not express their needs during the admission interview of inpatient rehabilitation. We now examine trajectories of mental health, quality of life, and utilization of professional help in cancer patients with unexpressed needs. METHODS: We enrolled 449 patients with breast, prostate, and colon cancer at beginning (T0) and end (T1) of a 3-week inpatient rehabilitation and 3 (T2) and 9 (T3) months after discharge. We explored depression (PHQ-2), anxiety (GAD-2), emotional functioning (EORTC QLQ-C30), fear of progression (FoP-Q-SF), and global quality of life (EORTC QLQ-C30) using structuring equation models. Furthermore, we evaluated self-reports about expressing needs and utilization of professional help at follow-up. RESULTS: Patients with unexpressed needs (24.3%, n = 107) showed decreased mental health compared to other patients (e.g., depression: d T0 = 0.32, d T1-T3 = 0.39). They showed a significant decline in global quality of life at discharge and follow-up (d = 0.28). Furthermore, they had a higher need for support (Cramer's V T2 = 0.10, T3 = 0.15), talked less about their needs (Cramer's V T2 = 0.18), and made less use of different health care services at follow-up. CONCLUSION: Unexpressed needs in cancer patients may be a risk factor for decreased mental health, quality of life, and non-utilization of professional help in the long term. Further research should clarify causal relationships and focus on this specific group of patients to improve cancer care.

Patients' challenges, competencies, and perceived support in dealing with information needs - A qualitative analysis in patients with breast and gynecological cancer.

OBJECTIVES: This study aimed to investigate challenges, competencies, and support in breast and gynecological cancer patients when dealing with information needs and how health literacy as an interplay of these factors might be improved. METHODS: Semi-structured interviews were conducted with patients in acute care (n = 19), undergoing rehabilitation (n = 20) or attending self-help groups (n = 16). Interviews were analyzed using content analysis. RESULTS: Challenges: gain information according to own needs, internet as information source, information evaluation and decisions, doctor-patient communication, situationally limited information processing, difficult access to information. Competencies: self-regulation of information needs, media and social competencies, communication skills in the doctor-patient conversation, internet competencies, self-directed decisions according to own needs, interest/self-efficacy, previous knowledge, trust in the doctor. SUPPORT: by professionals (e.g., patient-centered communication), relatives (e.g., support during consultations), peers (e.g., exchange), facilities (e.g., clinics). CONCLUSIONS: Our findings provide insight into challenges and competencies relevant to patients' health literacy and the influence of support. The individuality of the interplay highlights the relevance of an active patient role and patient-centered care. PRACTICE IMPLICATIONS: Patients' health literacy should be improved in (psycho)oncological work by both reducing challenges (e.g., by communication skills training, involving relatives) and promoting competencies (e.g., by needs- and competence-oriented information offers).

[The Impact of Health literacy on Health Outcomes in Cancer Patients Attending Inpatient Rehabilitation]. / Health literacy bei onkologischen Rehabilitanden und deren Relevanz für den subjektiven Rehabilitationsverlauf.

PURPOSE: Health literacy (HL) entails people's knowledge, motivation, and competences to access, understand, appraise, and apply health information. Lower HL is associated with poorer psychosocial health. However, there are no studies so far evaluating the impact of HL within oncological rehabilitation in Germany. Therefore, we explored HL in cancer patients in inpatient rehabilitation and its association with rehabilitation outcome. METHODS: We conducted a secondary data analysis of a questionnaire survey with 449 cancer patients (breast, prostate, and colon cancer) at 3 measurement occasions (end of rehabilitation, 3- and 9 months follow-up). We assessed HL with the European Health Literacy Survey (HLS-EU-Q6). We evaluated rehabilitation outcomes by measuring fear of progression (FoP-Q-SF), need for psychosocial support, physical functioning and global quality of life (EORTC-QLQ-C30), and the work ability index (WAI). To explore the impact of HL on rehabilitation outcome, we used multiple regression analyses controlling for other factors. RESULTS: At the end of rehabilitation, up to 56% of the patients reported difficulties in HL dimensions. Better HL was significantly associated with lower fear of progression (ß=- 0,33) and need for psychosocial support (OR=0,28), higher physical functioning (ß=0,22), higher global health status (ß=0,23), and higher work ability (ß=0,21). Longitudinal analyses showed that improvement in HL was significantly accompanied by improvements in all rehabilitation outcomes (0,18 ≤ ß ≤ 0,24). CONCLUSION: HL is a relevant factor within cancer rehabilitation. More than half of the patients showed problematic HL at discharge. Furthermore, HL is a predictor of psychosocial, somatic, and work-related rehabilitation outcomes up to 9 months. Effective strategies to support patients in dealing with health information are essential and should be promoted within rehabilitation.

In-Patient Pulmonary Rehabilitation to Improve Asthma Control­A Randomized Controlled Study (EPRA, Effectiveness of Pulmonary Rehabilitation for Patients with Asthma).

BACKGROUND: Despite the availability of effective pharmaceutical treatment options, many patients with asthma do not manage to control their illness. This randomized trial with a waiting-list control group examined whether a 3-week course of inpatient pulmonary rehabilitation (PR) improves asthma control (primary endpoint) and other secondary endpoints (e.g., quality of life, cardinal symptoms, mental stress). The subsequent observational segment of the study investigated the long-term outcome after PR. METHODS: After approval of the rehabilitation´ by the insurance providers (T0), 412 adults with uncontrolled asthma (Asthma Control Test [ACT] score < 20 points) undergoing rehabilitation were assigned to either the intervention group (IG) or the waiting-list control group (CG). PR commenced 1 month (T1) after randomization in the IG and 5 months after randomization (T3) in the CG. Asthma control and the secondary endpoints were assessed 3 months after PR in the IG (T3) as an intention-to-treat analysis by means of analyses of covariance. Moreover, both groups were observed for a period of 12 months after the end of PR. RESULTS: At T3 the mean ACT score was 15.76 points in the CG, 20.38 points in the IG. The adjusted mean difference of 4.71 points was clinically relevant (95% confidence interval [3.99; 5.43]; effect size, Cohen's d = 1.27). The secondary endpoints also showed clinically relevant effects in favor of the IG. A year after the end of rehabilitation the mean ACT score was 19.00 points, still clinically relevant at 3.54 points higher than when rehabilitation began. Secondary endpoints such as quality of life and cardinal symptoms (dyspnea, cough, expectoration, pain) and self-management showed moderate to large effects. CONCLUSION: The trial showed that a 3-week course of PR leads to clinically relevant improvement in asthma control and secondary endpoints. Patients who do not achieve control of their asthma despite outpatient treatment therefore benefit from rehabilitation.

Endurance and avoidance response patterns in pain patients: Application of action control theory in pain research.

BACKGROUND: Identifying pain-related response patterns and understanding functional mechanisms of symptom formation and recovery are important for improving treatment. OBJECTIVES: We aimed to replicate pain-related avoidance-endurance response patterns associated with the Fear-Avoidance Model, and its extension, the Avoidance-Endurance Model, and examined their differences in secondary measures of stress, action control (i.e., dispositional action vs. state orientation), coping, and health. METHODS: Latent profile analysis (LPA) was conducted on self-report data from 536 patients with chronic non-specific low back pain at the beginning of an inpatient rehabilitation program. Measures of stress (i.e., pain, life stress) and action control were analyzed as covariates regarding their influence on the formation of different pain response profiles. Measures of coping and health were examined as dependent variables. RESULTS: Partially in line with our assumptions, we found three pain response profiles of distress-avoidance, eustress-endurance, and low-endurance responses that are depending on the level of perceived stress and action control. Distress-avoidance responders emerged as the most burdened, dysfunctional patient group concerning measures of stress, action control, maladaptive coping, and health. Eustress-endurance responders showed one of the highest levels of action versus state orientation, as well as the highest levels of adaptive coping and physical activity. Low-endurance responders reported lower levels of stress as well as equal levels of action versus state orientation, maladaptive coping, and health compared to eustress-endurance responders; however, equally low levels of adaptive coping and physical activity compared to distress-avoidance responders. CONCLUSIONS: Apart from the partially supported assumptions of the Fear-Avoidance and Avoidance-Endurance Model, perceived stress and dispositional action versus state orientation may play a crucial role in the formation of pain-related avoidance-endurance response patterns that vary in degree of adaptiveness. Results suggest tailoring interventions based on behavioral and functional analysis of pain responses in order to more effectively improve patients quality of life.

Unexpressed psychosocial needs in cancer patients at the beginning of inpatient rehabilitation: a qualitative analysis.

OBJECTIVE: Cancer patients often need professional help to alleviate their psychosocial distress. However, not all patients express their needs. In this study, we explored possible barriers to patients' expressing needs, contents of needs difficult to express, and conditions facilitating expressing needs. METHODS: We conducted semi-structured interviews with 29 oncological inpatient rehabilitation patients, 7 members of self-help groups, and 10 health professionals. We analyzed data with structuring content analysis. RESULTS: Fear of stigmatization and difficulties in the physician-patient-relationship were the most critical expression barriers reported. Sexuality deemed to be one of the most challenging themes for patients. Changes in the physician's behavior and sufficient resources were mentioned as the main facilitating conditions. Our results indicate a wide diversity within the barriers and topics, but a general consistency between patients and health professionals. CONCLUSION: This study provides evidence for the existence of a variety of barriers to cancer patients' expressing their needs. PRACTICE IMPLICATIONS: Health professionals should be aware of the different possible expression barriers to facilitate patient communication.

A Self-administered Version of the Functioning Assessment Short Test for Use in Population-based Studies: A Pilot Study.

BACKGROUND: The Functioning Assessment Short Test (FAST) is an interviewer-administered scale assessing functional impairment originally developed for psychiatric patients. OBJECTIVES: To adapt the FAST for the general population, we developed a self-administered version of the scale and assessed its properties in a pilot study. METHODS: The original FAST scale was translated into German via forward and backward translation. Afterwards, we adjusted the scale for self-administered application and inquired participants from two ongoing studies in Germany, 'STAAB' (Würzburg) and 'BiDirect' (Münster), both recruiting subjects from the general population across a wide age range (STAAB: 30-79 years, BiDirect: 35-65 years). To assess reliability, agreement of self-assessment with proxy-assessment by partners was measured via intraclass correlation coefficient (ICC) over the FAST score. Construct validity was estimated by conducting correlations with validated scales of depression (PHQ-9), anxiety (GAD-7), and health-related quality of life (SF-12) and regression analyses using these scales besides potentially disabling comorbidities (e.g. Chronic Back Pain (CBP)). RESULTS: Participants (n=54) had a median age of 57.0 years (quartiles: 49.8, 65.3), 46.3% were female. Reliability was moderate: ICC 0.50 (95% CI 0.46-0.54). The FAST score significantly correlated with PHQ-9, GAD-7, and the mental sub-scale of SF-12. In univariable linear regression, all three scales and chronic back pain explained variance of the FAST score. In multivariable analysis, only CBP and the SF-12 remained significant predictors. CONCLUSION: The German self-administered version of the FAST yielded moderate psychometric properties in this pilot study, indicating its applicability to assess functional impairment in the general population.

Risk and associated factors of depression and anxiety in men with prostate cancer: Results from a German multicenter study.

OBJECTIVE: In order to optimize psycho-oncological care, studies that quantify the extent of distress and identify certain risk groups are needed. Among patients with prostate cancer (PCa), findings on depression and anxiety are limited. METHODS: We analyzed data of PCa patients selected from a German multi-center study. Depression and anxiety were assessed with the PHQ-9 and the GAD-7 (cut-off ≥7). We provided physical symptom burden, calculated absolute and relative risk (AR and RR) of depression and anxiety across patient subsets and between patients and the general population (GP) and tested age as a moderator within the relationship of disease-specific symptoms with depression and anxiety. RESULTS: Among 636 participants, the majority reported disease-specific problems (sexuality: 60%; urination: 52%). AR for depression and anxiety was 23% and 22%, respectively. Significant RR were small, with higher risks of distress in patients who are younger (eg, RRdepression = 1.15; 95%-CI: 1.06-1.26), treated with chemotherapy (RRdepression = 1.46; 95%-CI: 1.09-1.96) or having metastases (RRdepression = 1.30; 95%-CI: 1.02-1.65). Risk of distress was slightly elevated compared to GP (eg, RRdepression = 1.13; 95%-CI: 1.07-1.19). Age moderated the relationship between symptoms and anxiety (Burination = -0.10, P = .02; Bsexuality = -0.11, P = .01). CONCLUSIONS: Younger patients, those with metastases or treatment with chemotherapy seem to be at elevated risk for distress and should be closely monitored. Many patients suffer from disease-specific symptom burden, by which younger patients seem to be particularly distressed. Support of coping mechanisms associated with disease-specific symptom burden seems warranted.

Prevalence and predictors of cancer patients' unexpressed needs in the admission interview of inpatient rehabilitation.

OBJECTIVE: The admission interview in oncological inpatient rehabilitation might be a good opportunity to identify cancer patients' needs present after acute treatment. However, a relevant number of patients may not express their needs. In this study, we examined (a) the proportion of cancer patients with unexpressed needs, (b) topics of unexpressed needs and reasons for not expressing needs, (c) correlations of not expressing needs with several patient characteristics, and (d) predictors of not expressing needs. METHODS: We enrolled 449 patients with breast, prostate, and colon cancer at beginning and end of inpatient rehabilitation. We obtained self-reports about unexpressed needs and health-related variables (quality of life, depression, anxiety, adjustment disorder, and health literacy). We estimated frequencies and conducted correlation and ordinal logistic regression analyses. RESULTS: A quarter of patients stated they had "rather not" or "not at all" expressed all relevant needs. Patients mostly omitted fear of cancer recurrence. Most frequent reasons for not expressing needs were being focused on physical consequences of cancer, concerns emerging only later, and not knowing about the possibility of talking about distress. Not expressing needs was associated with several health-related outcomes, for example, emotional functioning, adjustment disorder, fear of progression, and health literacy. Depression measured at the beginning of rehabilitation showed only small correlations and is therefore not sufficient to identify patients with unexpressed needs. CONCLUSIONS: A relevant proportion of cancer patients reported unexpressed needs in the admission interview. This was associated with decreased mental health. Therefore, it seems necessary to support patients in expressing needs.

Cancer patients' preferred and perceived level of involvement in treatment decision-making: an epidemiological study.

Background: We aimed to analyze preferred and perceived levels of patients' involvement in treatment decision-making in a representative sample of cancer patients.Material and Methods: We conducted a multicenter, epidemiological cross-sectional study with a stratified random sample based on the incidence of cancer diagnoses in Germany. Data were collected between January 2008 and December 2010. Analyses were undertaken between 2017 and 2019. We included 5889 adult cancer patients across all cancer entities and disease stages from 30 acute care hospitals, outpatient facilities, and cancer rehabilitation clinics in five regions in Germany. We used the Control Preferences Scale to assess the preferred level of involvement and the nine-item Shared Decision-Making Questionnaire to assess the perceived level of involvement.Results: About 4020 patients (mean age of 58 years, 51% female) completed the survey. Response rate was 68.3%. About a third each preferred patient-led, shared, or physician-led decision-making. About 50.7% perceived high levels, about a quarter each reported moderate (26.0%) or low (24.3%) levels of shared decision-making. Sex, age, relationship status, education, health care setting, and tumor entity were linked to preferred and/or perceived decision-making. Of those patients who preferred active involvement, about 50% perceived high levels of shared decision-making.Conclusion: The majority of patients with cancer wanted to be involved in medical decisions. Many patients perceived a high level of shared decision-making. However, many patients' level of involvement did not fit their preference. This study provides a solid basis for efforts to improve shared decision-making in German cancer care.

Development and proof-of-concept of a multicenter, patient-centered cancer registry for breast cancer patients with metastatic disease-the "Breast cancer care for patients with metastatic disease" (BRE-4-MED) registry.

BACKGROUND: Patients with metastatic breast cancer (MBC) are treated with a palliative approach with focus on controlling for disease symptoms and maintaining high quality of life. Information on individual needs of patients and their relatives as well as on treatment patterns in clinical routine care for this specific patient group are lacking or are not routinely documented in established Cancer Registries. Thus, we developed a registry concept specifically adapted for these incurable patients comprising primary and secondary data as well as mobile-health (m-health) data. METHODS: The concept for patient-centered "Breast cancer care for patients with metastatic disease" (BRE-4-MED) registry was developed and piloted exemplarily in the region of Main-Franconia, a mainly rural region in Germany comprising about 1.3 M inhabitants. The registry concept includes data on diagnosis, therapy, progression, patient-reported outcome measures (PROMs), and needs of family members from several sources of information including routine data from established Cancer Registries in different federal states, treating physicians in hospital as well as in outpatient settings, patients with metastatic breast cancer and their family members. Linkage with routine cancer registry data was performed to collect secondary data on diagnosis, therapy, and progression. Paper and online-based questionnaires were used to assess PROMs. A dedicated mobile application software (APP) was developed to monitor needs, progression, and therapy change of individual patients. Patient's acceptance and feasibility of data collection in clinical routine was assessed within a proof-of-concept study. RESULTS: The concept for the BRE-4-MED registry was developed and piloted between September 2017 and May 2018. In total n = 31 patients were included in the pilot study, n = 22 patients were followed up after 1 month. Record linkage with the Cancer Registries of Bavaria and Baden-Württemberg demonstrated to be feasible. The voluntary APP/online questionnaire was used by n = 7 participants. The feasibility of the registry concept in clinical routine was positively evaluated by the participating hospitals. CONCLUSION: The concept of the BRE-4-MED registry provides evidence that combinatorial evaluation of PROMs, needs of family members, and raising clinical parameters from primary and secondary data sources as well as m-health applications are feasible and accepted in an incurable cancer collective.

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.

Impact of Patient Beliefs on Blood Pressure Control in the General Population: Findings from the Population-Based STAAB Cohort Study.

Background. Effective antihypertensive treatment depends on patient compliance regarding prescribed medications. We assessed the impact of beliefs related towards antihypertensive medication on blood pressure control in a population-based sample treated for hypertension. Methods. We used data from the Characteristics and Course of Heart Failure Stages A-B and Determinants of Progression (STAAB) study investigating 5000 inhabitants aged 30 to 79 years from the general population of Würzburg, Germany. The Beliefs about Medicines Questionnaire German Version (BMQ-D) was provided in a subsample without established cardiovascular diseases (CVD) treated for hypertension. We evaluated the association between inadequately controlled hypertension (systolic RR >140/90 mmHg; >140/85 mmHg in diabetics) and reported concerns about and necessity of antihypertensive medication. Results. Data from 293 participants (49.5% women, median age 64 years [quartiles 56.0; 69.0]) entered the analysis. Despite medication, half of the participants (49.8%) were above the recommended blood pressure target. Stratified for sex, inadequately controlled hypertension was less frequent in women reporting higher levels of concerns (OR 0.36; 95%CI 0.17-0.74), whereas no such association was apparent in men. We found no association for specific-necessity in any model. Conclusion. Beliefs regarding the necessity of prescribed medication did not affect hypertension control. An inverse association between concerns about medication and inappropriately controlled hypertension was found for women only. Our findings highlight that medication-related beliefs constitute a serious barrier of successful implementation of treatment guidelines and underline the role of educational interventions taking into account sex-related differences.