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After a short hospital stay of just some days follows long-term outpatient care for breast cancer patients. The aim of the study is to describe the information needs of breast cancer outpatients and to get in touch with aspects of health literacy, as well as contact various health care workers. In a multicenter study, patients were asked about their information needs 10 weeks after surgery. The analysis on hand includes data about 1248 female patients. In addition to descriptive analyses identifying the most prevalent information needs, logistic regression analyses were calculated to identify factors associated with these. The results show that information needs of breast cancer outpatients are mainly in follow-up after acute treatment, coping with long-term side effects, and heredity of breast cancer. In addition to sociodemographic patient characteristics, perceived helpful contacts with various health care workers as well as a satisfactory patient's level of health literacy reduced the probability of unmet information needs. Breast cancer outpatients have numerous information needs. In addition to provide information at the right time regarding a specific disease phase, it is important that health professionals' support affected breast cancer patients in coping with the new situation.

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. (C) 2015 Elsevier Ireland Ltd. All rights reserved.

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. (C) 2016 Elsevier Ireland Ltd. All rights reserved.

Background and objectives: Health literacy denoted as the ability to search for, understand and use health related information in health care decision-making is becoming increasingly important for complex chronic diseases such as cancer. There is growing evidence that limited health literacy has a negative impact on individual cancer prevention and disease coping behavior suggesting that interventions for quality assurance in cancer care should consider the health literacy of the target population. This poses the question of how cancer literacy should be operationalized and measured. Methods: We conducted a systematic review on available instruments to measure cancer literacy. The review was performed according to the PRISMA guideline. Relevant instruments were categorized and evaluated in regard to construct definition, operationalization approach and psychometric properties. Results: Overall, N = 12 publications reporting on the development and validation of a cancer literacy instrument could be identified. Cancer literacy is defined as the ability to search for, understand and use health related information in health care decision-making (health literacy) or as the knowledge a layperson needs to understand the information and advice the health system offers with regard to preventing, diagnosing and treating cancerous conditions. In most cases, cancer literacy is operationalized by using cancer knowledge tests across distinct knowledge areas. The analysis of the psychometric properties yields the finding that only every second paper (N = 6) is reporting reliability and validity data. Altogether, reliability data is quite satisfactory whereas construct and criterion validity data demonstrates low to moderate correlations between the instruments developed and external criteria as well as comparative instruments. Conclusion: The aspect of cancer literacy is gaining relevance in terms of its contribution to quality assurance and patient safety. Currently, there are a

A common phenomenon among cancer patients is a fear of cancer recurrence or cancer progression (FOP). The aim of the present study was to analyze whether the oncologist is able to reduce patients' FOP at the initial clinical interview. A prospective, longitudinal study included patients who were consulting private-practice oncologists in Germany for the first time. Recruitment was carried out by 44 members of the Professional Organization of Office-Based Hematologists and Oncologists. In the patient surveys, data on colon cancer patients' perceptions of communications with their oncologist and on patient-reported outcomes were collected over a period of 6 months. The present study analyzed the patients' data before their first consultation (T (0)) and within 3 days after the first consultation (T (1)). A total of 169 patients agreed to participate in the study. Backwards multiple regression analysis was conducted to determine whether the change (T (0)-T (1)) in FOP is associated with demographic, medical, or psychosocial determinants, or with the physician-patient communication. A significant association was found between the change in FOP and interruptions to the conversation, the comprehensibility of the information provided, the extent of perceived empathy from the physician, and the patient's social support and family status. Private social support and the initial medical encounter can help reduce FOP. Particularly, oncologists should ensure that they facilitate the presentation of information in a comprehensible way while avoiding interruptions and that they take particular care of patients with poor social support.

Objective: Patients with Parkinson's disease (PD) can show impaired self-awareness of motor deficits (ISAm). We developed a new scale that measures ISAm severity of hyper- and hypokinetic movements in PD during medication on state and defined its psychometric criteria. Method: Included were 104 right-handed, non-depressed, non-demented patients. Concerning ISAm, 38 motor symptoms were assessed using seven tasks, which were performed and self-rated concerning presence of deficit (yes/no) by all patients. The whole procedure was videotaped. Motor symptoms were then evaluated by two independent experts, blinded for patient's ratings, concerning presence, awareness of deficit, and severity. Exploratory principal component analysis (promax rotation) was applied to reduce items. Principal axis factoring was conducted to extract factors. Reliability was examined regarding internal consistency, split-half reliability, and interrater reliability. Validity was verified by applying two additional measures of ISAm. Results: Of the initial 38 symptoms, 15 remained, assessed in five motor tasks and merged to a total severity score. Factor analysis resulted in a four factor solution (dyskinesia, resting tremor right hand, resting tremor left hand, bradykinesia). For all subscales and the total score, measures of reliability (values 0.64-0.89) and validity (effect sizes > 0.3) were satisfactory. Descriptive results showed that 66% of patients had signs of ISAm (median 2, range 0-15), with ISAm being most distinct for dyskinesia. Conclusions: We provide the first validation of a test for ISAm in PD. Using this instrument, future studies can further analyze the pathophysiology of ISAm, the psychosocial sequelae, therapeutic strategies and compliance with therapy.

Background: While research on individual health literacy is steadily increasing, less attention has been paid to the context of care that may help to increase the patient's ability to navigate health care or to compensate for their limited health literacy. In 2012, Brach et al. introduced the concept of health literate health care organizations (HLHOs) to describe the organizational context of care. This paper presents our effort in developing and validating an HLHO instrument. Method: Ten items were developed to represent the ten attributes of HLHO (HLHO-10) based on a literature review, an expert workshop, a focus group discussion, and qualitative interviews. The instrument was applied in a key informant survey in 51 German hospitals as part of a larger study on patient information and training needs (PIAT-study). Item properties were analyzed and a confirmatory factor analysis (CFA) was conducted to test the instrument's unidimensionality. To investigate the instrument's predictive validity, a multilevel analysis was performed that used the HLHO-10 score to predict the adequacy of information provided to 1,224 newly-diagnosed breast cancer patients treated at the sample hospitals. Results: Cronbach's a of the resulting scale was 0.89. CFA verified the one-factor structure after allowing for the correlation for four pairs of error terms. In the multilevel model, HLHO-10 significantly predicted the adequacy of information as perceived by patients. Conclusion: The instrument has satisfactory reliability and validity. It provides a useful tool to assess the degree to which health care organizations help patients to navigate, understand, and use information and services. Further validation should include participant observation in health care organizations and a sample that is not limited to breast cancer care.

Objective: People feeling severely affected by multiple sclerosis (MS) comprise a heterogeneous group, and this heterogeneity leads to very distinct needs and makes planning for needs difficult. To provide optimal care, it is important to identify specific needs in specific subgroups. Our objective was to identify the specific palliative care (PC) needs of patients who felt severely affected by the disease by analyzing their feeling (1) more or (2) less severely affected and their possible differences in expressed care needs. Method: A self-report questionnaire with 25 needs categories including 7 categories pertaining to carewas applied to patients who felt severely affected by MS. An additional single question identified patients feeling more (>= 7, median-split) and less (<7) severely affected. Differences were analyzed by chi-squared and Mann-Whitney U tests. The sample (N = 573) was composed of respondents who replied to an invitation by the German Multiple Sclerosis Society to participate in a survey on unmet needs of severely affected patients. Results: Of 573 patients (median age 51), 358 (62.48%) felt more severely affected. Compared to patients feeling less severely affected, they found the stress on their next of kin to be higher (p < 0.001), were in greater need of home visitation (p < 0.001), did not have permanent neurologists (p = 0.016), and felt that they visited them too rarely (p < 0.0001). They also needed more emotional support from their nursing care service (p = 0.006). Significance of results: A self-rating scale can identify two groups of patients with different care needs. These data may help shaping patient-centered support structures. Palliative care, with its multidisciplinary approach, might be one further option to meet the specific needs of patients and their relatives.

Objective: Reliable and validated instruments are needed in order to study the desire for hastened death (DHD). As there isno instrument in the German language to measure DHD, our aim was to validate a German version of the Schedule of Attitudes Toward Hastened Death (SAHD-D). Method: The SAHD was translated following guidelines promulgated by the European Organization for Research and Treatment of Cancer (EORTC). In eligible patients (clinical situation adequate, MMSE >= 21), the following instruments were employed: a symptom checklist (HOPE), the HADS-D (Hospital Anxiety and Depression Scale), the EORTC-QLQ-PAL15, and the SAHD-D, as well as an external estimation of DHD provided by the attending physician. A high level of DHD was defined as the mean plus one standard deviation (SD). Results: Of the 869 patients assessed, 92 were eligible for inclusion (66% females, mean age of 64.5 years). The SAHD-D total score ranged from 0 to 18, with a mean of 5 and a standard deviation (SD) of 3.7. A high level of DHD was found in 20% (n = 19). For discriminant validity, significant correlations were found between the SAHD-D and depression (r(rho) = 0.472), anxiety (r(rho) = 0.224), and clinical state (r(rho) = 0.178). For criterion validity, the external estimate of DHD showed a low significant correlation with patient score (r(rho) = 0.290). Factor analysis of the SAHD-D identified two factors. Significance of results: Validation of the SAHD-D illustrated good discriminant validity, confirming that a desire to hasten death is a construct separate from depression, anxiety, or physical state. The unidimensionality of the SAHD could not be reproduced. Our findings support the multifactorial interdependencies on DHD and suggest that the SAHD-D should be refined by considering actual wishes, general attitudes, and options of patients.

Breast cancer is the most frequent type of malignancy among women throughout Germany. The present analysis aimed to identify information needs and aspects of health literacy in women of working age newly diagnosed with breast cancer. PIAT is a prospective multicenter cohort study in which patients were asked about their information needs at 3 assessment points: postoperatively, after 10 weeks, and after 40 weeks. The present analysis includes data from 1,344 female patients after the first assessment point. In addition to descriptive analyses, logistic regression analyses were calculated. Results of the study show that, in addition to sociodemographic characteristics, the level of health literacy and the employment status of the women who responded to the inquiry influence specific unmet information needs. Most frequently mentioned unmet information needs relate to supplementary naturopathy, nutrition, health-promoting measures, and working during breast cancer. Patients with breast cancer are often provided with large amounts of information during their hospital stay indicating this information is not targeted to patient needs and may be overwhelming. The results show that information on everyday life needs such as supplementary naturopathy were important for the sample newly diagnosed with breast cancer. Employed women in particular have questions regarding working during cancer or tax relief.

Background: The needs of patients feeling severely affected by multiple sclerosis (MS) have rarely been investigated. However this is essential information to know before care can be improved, including adding palliative care (PC) services where helpful. Since it remains unclear at what point specialized palliative care should begin for this patient group, this study focuses on needs in general. Objective: The objective was to explore the subjectively unmet needs of patients feeling severely affected by MS. Methods: The study used a qualitative cross-sectional approach for needs assessment. Fifteen patients self-reporting feeling severely affected by MS were recruited and interviewed using a combination of purposive and convenience sampling (five were accompanied by a caregiver relative). Interviews were recorded and transcribed verbatim, followed by qualitative content analysis. Results: Unmet needs were identified in the main categories support of family and friends,'' health care services,'' managing everyday life,'' and maintaining biographical continuity.'' Patients expressed the desire for more support from their families and to be viewed as distinct individuals. They see a substantial deficit in the physician-patient relationship and in the coordination of services. A decrease in expressed unmet needs was found for patients more severely affected and less socially integrated. Conclusions: To address the unmet needs of severely affected MS patients, health care services need to be improved and linked with existing PC services. Special attention is required to form supporting professional-patient relationships. Multiprofessional services should be accessible for patients, while integrating relatives. All services should have an individual approach to provide needs-tailored support.

Objective: Research on determinants of a good patient-physician interaction mainly disregards systemic factors, such as the work environment in healthcare. This study aims to identify stressors and resources within the work environment of hospital physicians that enable or hinder the physicians' provision of social support to patients. Methods: Four data sources on 35 German breast cancer center hospitals were matched: structured hospital quality reports and surveys of 348 physicians, 108 persons in hospital leadership, and 1844 patients. Associations between hospital structures, physicians' social resources as well as job demands and control and patients' perceived support from physicians have been studied in multilevel models. Results: Patients feel better supported by their physicians in hospitals with high social capital, a high percentage of permanently employed physicians, and less physically strained physicians. Conclusion: The results highlight the, importance of the work environment for a good patient-physician interaction. They can be used to develop interventions for redesigning the hospital work environment, which in turn may improve physician satisfaction, well-being, and performance and consequently the quality of care. Practice implications: Health policy and hospital management could create conditions conducive to better patient-physician interaction by strengthening the social capital and by increasing job security for physicians. (C) 2014 Elsevier Ireland Ltd. All rights reserved.

Objectives: To identify (1) how frequently patients are invited to take part and actually do take part in multidisciplinary tumor conferences (MTCs), (2) which patient characteristics affect whether they are invited to MTCs and whether they decide to participate, (3) the extent to which invitation and participation depend on the specific hospital. Study design: Survey data from 4146 newly-diagnosed breast cancer patients treated in 83 hospitals in North Rhine-Westphalia, Germany, were analyzed using multilevel modeling. Results: 12% of the patients were offered participation in the MTC. More than half of these patients actually participated. Invitations to participate differed by patients' sociodemographic, disease, and treatment characteristics, whereas decisions to participate were largely independent of these characteristics. Invitation and participation are strongly dependent on the specific hospital. Conclusion: The practice of inviting cancer patients to MTCs requires further research, particularly on benefits and disadvantages for patients and ways of organizing MTCs. (C) 2014 Elsevier Ltd. All rights reserved.