[DNVF Memorandum Health Literacy (Part 2) - Operationalisation and Measuring of Health Literacy from a Health Services Research Perspective]. / DNVF Memorandum Gesundheitskompetenz (Teil II) ­ Operationalisierung und Messung von Gesundheitskompetenz aus Sicht der Versorgungsforschung.

The "DNVF Memorandum Health Literacy (Part 2): Operationalization and Measurement of Health Literacy from the Perspective of Health Services Research" of the German Network for Health Services Research represents the continuation of the memorandum "DNVF Memorandum Health Literacy (Part 1): Background, Subject and Issues in Health Services Research". In addition to the general requirements for the measurement of health literacy, this memorandum also deals with the specific requirements, such as the differentiation of health literacy from related constructs, the differences between performance-based and self-assessment methods, the differences between generic and specific instruments, the use of screening instruments, and the measurement of health literacy in special populations. Furthermore, special considerations about the measurement of digital health literacy, potentials of qualitative and participatory research approaches as well as research ethics in the measurement of health literacy will be elaborated on. A special emphasis is placed on practical relevance for health services researchers. Finally, the authors will give an outlook on challenges and research desiderata in connection with the measurement of health literacy in the context of health services research.

Defense Mechanisms and Repressive Coping Among Male Breast Cancer Patients.

Objectives: The concept of defense mechanisms has undergone extensive revision and expansion since Freud first described these processes. Initially formulated as an unconscious repression of unpleasant memories, with further development focusing on the role of defense mechanisms in the regulation of internal conflicts, the concept shifted and evolved to incorporate the adaptation to external demands, including intrapsychic and interpersonal handling of burden of illness. In addition to defense mechanisms, coping provides another perspective on human adjustment to difficult life events. While there is substantial research on both coping and defense mechanisms in various psychiatric and somatic diseases, including cancer, little is known about defensive regulation, coping, and their interaction in male breast cancer patients. Methods: The present study is part of the N-Male project conducted between 2016 and 2018 in Germany (Male breast cancer: patients' needs in prevention, diagnosis, treatment, rehabilitation, and follow-up care). Semi-standardized interviews with 27 male breast cancer patients were analyzed with regard to defense mechanisms. In addition, fear of progression and repressive coping was assessed by self-report. Results: There was considerable variety in levels of defensive functioning as well as repressive coping in our sample. We found no difference in overall levels of defensive functioning between men with vs. without repressive coping. However, patients with repressive coping demonstrated a decopupled association between fear of progression and defensive functioning as compared to patients without repressive coping. Discussion: The study provides the first evidence of disease processing in male breast cancer patients Knowledge of patients' defense patterns and repressive coping seems promising for better planning targeted intervention strategies.

Comprehensive support for families with parental cancer (Family-SCOUT), evaluation of a complex intervention: study protocol for a non-randomized controlled trial.

BACKGROUND: Families with minor children affected by parental cancer are at risk of considerable emotional and organizational stress that can severely burden all family members. So far, there has been a lack of comprehensive support services for affected families. The aim of this project is to implement and evaluate a complex psychosocial intervention for these families by providing advice, information, and care on an emotional, psycho-social, and communicative level during and after the cancer experience and across healthcare sectors. METHODS: Family-SCOUT is a project supported by the German Innovation Fund ( https://innovationsfonds.g-ba.de/ ). The evaluation is based on a mixed-methods quasi-experimental design with the intervention and control groups. A standardized postal survey at three measurement points (T0: study enrollment; T1: 3 months of follow-up; T2: 9 months of follow-up), secondary data from the participating health insurance funds, and semi-structured qualitative interviews are used for summative and formative evaluation. The study aim is to include n=560 families. Data will be analyzed according to the intention-to-treat principle. The primary analysis is the comparison of the Hospital Anxiety and Depression Scale (HADS) response rates (minimal important difference (MID) ≥ 1.6 in at least one of the two parents) at T2 between the intervention and control group using Fisher's exact test. The conduct of the study as well as the development and implementation of the intervention will be accompanied by comprehensive study monitoring following the principles of an effectiveness-implementation hybrid study. DISCUSSION: The results will allow to test the effectiveness and efficiency of the intervention for the target group. The first experience with the implementation of the intervention in model regions will be available. The evaluation results will serve as the basis to assess the need of including the intervention in the catalog of services of the statutory health insurance funds in Germany. TRIAL REGISTRATION: ClinicalTrials.gov , NCT04186923. Retrospectively registered on 4 December 2019.

Occupational rehabilitation of male breast cancer patients: Return patterns, motives, experiences, and implications-A qualitative study.

OBJECTIVE: Knowledge regarding the occupational rehabilitation of male breast cancer patients (MBCPs) is currently scarce; however, there may exist unmet needs of men affected by this rare disease. Therefore, this exploratory study investigated the experiences of MBCPs in their return to work (RTW). METHODS: Interview data from 14 men with a breast cancer diagnosis were used for qualitative content analysis. Data were collected within the mixed-methods N-MALE project (Male breast cancer: patients' needs in prevention, diagnosis, treatment, rehabilitation, and follow-up care), conducted in Germany from 2016 to 2018. RESULTS: The eight identified motives for RTW were desire for normalcy, distraction, need for activity, social contacts, work as a source of pleasure, financial considerations, lack of self-perception of illness, and having a job requiring low physical effort. The participants reported positive experiences with their workplaces from diagnosis through RTW. However, stigmatisation occurred. The aftermath of the disease and treatment led to changes in the interviewees' productivity, for instance due to fatigue. CONCLUSION: The findings of this study contribute to a better understanding of RTW processes, as new insights were gained about motives and experiences particular to MBCPs. Support needs after return were apparent and may help to reduce long-term effects that limit productivity.

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

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

[Interactive Health Literacy, Sociodemographic Characteristics and the Uptake of Psychotherapeutic or Pharmacological Interventions - are there Social Inequalities in the Treatment of Social Anxiety Disorder?] / Interaktive Gesundheitskompetenz, soziodemografische Faktoren und der Zeitraum bis zur Inanspruchnahme psychotherapeutischer oder medikamentöser Behandlung ­ gibt es Hinweise auf soziale Ungleichheiten in der Therapie der Sozialen Angststörung?

AIM: The aim is to investigate the association between sociodemographic characteristics and the interactive health literacy and the time to treatment of social anxiety disorder. METHODS: An online survey of N = 311 patients was carried out (response rate 54.1 %). Descriptive statistical analysis and a logistic regression analysis were carried out. RESULTS: The respondents are on average 46 years old (20-81), 59 % are women. Older age (OR 2,579), not living in partnership (OR 1,963), fear of personal contact (OR 5,716) and low (OR 3,585) or moderate (OR 3,144) interactive health literacy were significantly associated with the time to treatment. CONCLUSION: The data suggest that social inequalities exist regarding the use of psychotherapeutic or pharmacological interventions in people with social anxiety disorder.

[DNVF Memorandum Health Literacy (Part 1) - Background, Relevance, Research Topics and Questions in Health Services Research]. / DNVF Memorandum Gesundheitskompetenz (Teil 1) ­ Hintergrund, Relevanz, Gegenstand und Fragestellungen in der Versorgungsforschung.

More than half of the German population has difficulties in dealing with health information. It is an important task of health services research to examine how healthcare professionals and health care organizations can meet this challenge. The DNVF Memorandum Health Literacy (Part 1) defines the terms of individual and organizational health literacy, presents the national and international state of research and ethical aspects of health literacy research in health care settings. The relevance of health literacy research is worked out in different phases of life, for different target groups and in different healthcare contexts. Central research topics and future research desiderata are derived.

[DNVF Memorandum Health Literacy (Part 1) - Background, Relevance, Research Topics and Questions in Health Services Research: Short Version]. / DNVF Memorandum Gesundheitskompetenz (Teil 1) ­ Hintergrund, Relevanz, Gegenstand und Fragestellungen in der Versorgungsforschung: Kurzfassung.

More than half of the German population has difficulties in dealing with health information. It is an important task of health services research to examine how healthcare professionals and health care organizations can meet this challenge. This short version of the DNVF Memorandum Health Literacy (Part 1) defines the terms of individual and organizational health literacy, presents the national and international state of research and ethical aspects of health literacy research in health care settings. Central research topics and future research desiderata are derived.

Male Breast Cancer Patients' Perspectives on Their Health Care Situation: A Mixed-Methods Study.

BACKGROUND: Male breast cancer is rare. No information was available on how male breast cancer patients (MBCPs) experience the health care they receive in Germany in a setting that is tailored to women. The aim of this study was to explore the health care situation of MBCPs from their perspectives. METHODS: The study follows a mixed-methods design, combining quantitative data from a standardized written questionnaire with qualitative data from personal interviews. Descriptive statistics (quantitative data) and qualitative content analysis (qualitative data) were used for data analysis. RESULTS: Questionnaires completed by 100 and personal interviews of 27 MBCPs were analyzed. Several men reported mainly positive experiences while others experienced shortcomings. These included delays in diagnosis, health care provider uncertainty about treatment (tamoxifen, radiation therapy), experiences of stigmatization, and issues of continuity of care including unclear responsibilities for aftercare and access challenges to breast-cancer-specific care in gynecology settings. CONCLUSIONS: The awareness of male breast cancer needs to be increased among the public, health care providers and researchers in order to avoid delays in diagnosis and reduce stigmatization and uncertainty about treatment. Health care structures ensuring access to gynecology care and clear responsibilities for aftercare need to be established.

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

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

[Breast Cancer in Men - Health Care Professionals' Perspectives on the Multidisciplinary Care of a Rare Disease]. / Brustkrebs beim Mann ­ die Sicht der beteiligten Berufsgruppen auf die multiprofessionelle Versorgung einer seltenen Erkrankung.

AIM OF THE STUDY: Male breast cancer is a rare disease, for which, however, available care is from highly specialized care structures intended for female patients. So far, it is unknown whether the focus of care structures for women leads to deficits in the care for men. Therefore, the aim of the present study was to identify possible deficits in male breast cancer care from the perspective of the health care professions involved. METHODS: Semi-structured interviews with n=23 participants and 2 focus group discussions with n=7 and n=9 participants were conducted. The transcripts of the interviews and focus group discussions were analyzed by qualitative content analysis using MAXQDA. RESULTS: Some participants felt insecure and uniformed in terms of treatment recommendations for men with breast cancer. Often, responsibilities were vague or unknown. Many participants felt a lack of interdisciplinary cooperation, especially in follow-up care. Some respondents complained of a lack of rehabilitation centers for men with breast cancer. CONCLUSION: Male breast cancer patients benefit from the advanced structures for breast cancer care. However, some health care problems were identified. Our results together with representative data can help develop practical recommendations for improving the quality of care of male breast cancer patients.

Social Support of Male Breast Cancer Patients-a Mixed-Methods Analysis.

The aim of this study is to explore the social support of male breast cancer patients (MBCP) in Germany. In particular, three aspects of social support focus on (a) the used resources within the social environment, (b) the received support, and (c) the differences of used social support between MBCP. A mixed-methods design is applied including data of qualitative interviews (N = 27 MBCP) and a written questionnaire (N = 100 MBCP). MBCP use different resources of support from their social environment like partners, family, friends, colleagues, other breast cancer patients, and medical experts. Mostly, MBCP receive emotional and informational support. They often receive emotional support from their partners and informational support from medical experts. Different types of social support usage can be identified dependent on age, occupation, and severity of disease. The older the patients and the less the disease severity, the less social support MBCP use. Within cancer care, partners and the closer social environment should be included more as they are a key resource for MBCP. As health-care professions might also be an important resource of support for MBCP, further research should examine this resource.

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

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

Men With a "Woman's Disease": Stigmatization of Male Breast Cancer Patients-A Mixed Methods Analysis.

Male breast cancer (MBC) is rare and known as a typical woman's disease. This study is part of the N-MALE project (Male breast cancer: patient's needs in prevention, diagnosis, treatment, rehabilitation and follow-up-care) and aims to investigate how MBC patients (MBCP) feel about suffering from a "woman's disease," what character the stigmatization has, and how it can be prospectively reduced. Therefore, a mixed methods design is applied including data of N = 27 qualitative interviews with MBCP and quantitative data of N = 100 MBCP. Findings identify a diverse picture, as stigmatization varies between contexts and patients: Most stigmatization concentrates on sexual stigmatization and ignorance of MBC and mostly occurs in cancer care systems and work-related contexts. The level of stigmatization varies with age and amount of treatment methods received, as reported within the created typology of different MBCP stigma types. To prospectively reduce stigmatization in MBCP, more publicity of MBC is needed, as well as gender-neutral communication and information material.

Correction to: Diabetes-related information-seeking behaviour: a systematic review.

CORRECTION: During the production process for this article [1] some errors were introduced into Table 2. The correct version of Table 2 can be found below; the original article [1] has also been updated with the correct version of Table 2. BMC apologises to the authors and to readers for this error.

Diabetes-related information-seeking behaviour: a systematic review.

BACKGROUND: Information-seeking behaviour is necessary to improve knowledge on diabetes therapy and complications. Combined with other self-management skills and autonomous handling of the disease, it is essential for achieving treatment targets. However, a systematic review addressing this topic is lacking. The aims of this systematic review were to identify and analyse existing knowledge of information-seeking behaviour: (1) types information-seeking behaviour, (2) information sources, (3) the content of searched information, and (4) associated variables that may affect information-seeking behaviour. METHODS: The systematic review follows the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) requirements. MEDLINE, CINAHL, EMBASE, ScienceDirect, PsycInfo, Cochrane Library, Web of Science, CCMed, ERIC, Journals@OVID, Deutsches Ärzteblatt and Karlsruher virtueller Katalog (KvK) databases were searched. Publications dealing with information-seeking behaviour of people with diabetes mellitus published up to June 2015 were included. A forward citation tracking was performed in September 2016 and June 2017. Additionally, an update of the two main databases (MEDLINE, CINAHL) was conducted, considering studies published up to July 2017. Studies published in languages other than English or German were excluded, as well as letters, short reports, editorials, comments and discussion papers. A study selection and the critical appraisal of the selected studies were performed independently by two reviewers. A third reviewer was consulted if any disagreement was found. Data extraction and content analysis were performed using selected dimensions of Wilson's 'model of information behaviour'. RESULTS: Twenty-six studies were included. Five 'types of information-seeking behaviour' were identified, e.g. passive and active search. The 'Internet' and 'healthcare professionals' were the most frequently reported sources. 'Diet', 'complications', 'exercise' and 'medications and pharmacological interactions' were the most frequently identified content of information. Seven main categories including associated variables were identified, e.g. 'socioeconomic', 'duration of DM', and 'lifestyle'. CONCLUSION: The systematic review provides a valuable overview of available knowledge on the information-seeking behaviour of people with diabetes mellitus, although there are only a few studies. There was a high heterogeneity regarding the research question, design, methods and participants. Although the Internet is often used to seek information, health professionals still play an important role in supporting their patients' information-seeking behaviour. Specific needs of people with diabetes must be taken into consideration. SYSTEMATIC REVIEW REGISTRATION: PROSPERO CRD42016037312.

Measuring attributes of health literate health care organizations from the patients' perspective: Development and validation of a questionnaire to assess health literacy-sensitive communication (HL-COM).

BACKGROUND: Studies addressing the organizational contexts of care that may help increase the patients' ability to cope with a disease and to navigate through the health care system are still rare. Especially instruments allowing the assessment of such organizational efforts from the patients' perspective are missing. The aim of our study was to develop a survey instrument assessing organizational health literacy (HL) from the patients' perspective, i. e., health care organizations' responsiveness to patients' individual needs. METHODS: A pool of 30 items was developed by a group of experts based on a literature review. The items were developed, tested and prioritized according to their importance in 11 semi-structured interviews and cognitive think-aloud interviews with cancer patients. The resulting 16 items were rated in a standardized postal survey involving a total of N=453 colon and breast cancer patients treated in cancer centers in Germany. An exploratory factor analysis, a confirmatory factor analysis and structural equation modelling were conducted. Item properties were analyzed. RESULTS: 83.2 % of the patients were diagnosed with breast cancer, 16.8 % had a diagnosis of colon cancer. The patients' mean age was 61 (26-88), 89.4 % were female. The most common comorbidities were hypertension (34.0 %) and cardiovascular disease (11.0 %). The final prediction model included nine items measuring the degree of health literacy-sensitivity of communication. The model showed an acceptable model fit. The nine items showed corrected item-total correlations between .622 and .762 and item difficulties between 0.77 and 0.87. Cronbach's α was .912. DISCUSSION: In a comprehensive development process, the original item pool comprising several aspects of organizational HL was reduced to a one-dimensional scale. The instrument measures an important aspect of organizational HL; i.e., the degree of health literacy-sensitivity of communication (HL-COM). HL-COM was found to impact patient enablement, mediated through the support by physicians. Future research will have to test these associations in the context of other diseases or institutions.

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

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

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

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

[How can we measure cancer literacy?--A systematic review on the quality of available measurement tools]. / Wie können krebsspezifische Gesundheitskompetenzen gemessen werden?--Ein systematischer Review über die Qualität vorhandener Messinstrumente.

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 limited number of cancer literacy instruments available. Definitions of constructs and instrument conceptions mostly rely on the aspect of cancer knowledge making it difficult to differentiate cancer literacy from cancer knowledge. Prospective studies should take greater account of more sophisticated measurement approaches used to assess health literacy.