Patient experiences and needs in cancer care- results from a nationwide cross-sectional study in Germany.

BACKGROUND: Patient-centredness has become a central quality indicator for oncology care. Elements include shared decision-making, patient navigation and integration of psychosocial care, which impact patient-reported and clinical outcomes. Despite efforts to promote patient-centred care in Germany in recent decades, implementation remains fragmented. Further, research on patient experiences with cancer care and its determinants is limited. Therefore, this study examines which patient- and facility-specific factors are associated with patient-centred quality care delivery. METHODS: A cross-sectional study was conducted among 1,121 cancer patients in acute treatment, rehabilitation, and aftercare for different cancer entities across Germany. A participatory developed questionnaire was used. Outcome measures were the quality of physician-patient interaction and provision of psychosocial care during acute care. Predictors comprised patient-specific characteristics and treatment facility-specific factors. Multiple linear regression and multivariate binary logistic regression analyses were performed. In addition, a content analysis of open-ended comments on the patients' overall cancer care needs was applied. RESULTS: Multiple linear regression analysis showed recent diagnosis (ß=-0.12, p = < 0.001), being male (ß=-0.11, p = 0.003), and having a preference for passive decision-making (ß=-0.10, p = 0.001) to be significantly associated with higher interaction quality, but not age, education and health insurance type. An overall low impact of patient characteristics on interaction quality was revealed (adj. R2 = 0.03). Binary logistic regression analysis demonstrated the availability of central contact persons (OR = 3.10, p < 0.001) followed by recent diagnosis (p < 0.001), having breast cancer (p < 0.001) and being female (OR = 1.68, p < 0.05) to significantly predict offering psycho-oncological counselling to patients in acute care facilities. The availability of peer support visiting services (OR = 7.17, p < 0.001) and central contact persons (OR = 1.87, p < 0.001) in the care facility, breast cancer diagnosis (p < 0.001) and a higher level of education (p < 0.05) significantly increased the odds of patients receiving information about peer support in the treatment facility. Despite relatively satisfactory quality of physician-patient interactions in cancer care (M = 3.5 (± 1.1)), many patients expressed that better patient-centred communication and coordinated, comprehensive cancer care are needed. CONCLUSION: The findings reflect effective developments and improvements in cancer care and suggest that patients' social characteristics are less decisive for delivering patient-centred quality care than systemic factors surrounding the care facilities. They can serve to inform oncology care in Germany.

Self-help friendliness and cooperation with self-help groups among rehabilitation clinics in Germany (KoReS): a mixed-methods study protocol.

INTRODUCTION: Self-help is an important complement to medical rehabilitation for people with chronic diseases and disabilities. It contributes to stabilising rehabilitation success and further coping with disease and disability. Rehabilitation facilities are central in informing and referring patients to self-help groups. However, sustainable cooperation between rehabilitation and self-help, as can be achieved using the concept of self-help friendliness in healthcare, is rare, as is data on the cooperation situation. METHODS AND ANALYSIS: The KoReS study will examine self-help friendliness and cooperation between rehabilitation clinics and self-help associations in Germany, applying a sequential exploratory mixed-methods design. In the first qualitative phase, problem-centred interviews and focus groups are conducted with representatives of self-help-friendly rehabilitation clinics, members of their cooperating self-help groups and staff of self-help clearinghouses involved based on a purposeful sampling. Qualitative data collected will be analysed through content analysis using MAXQDA. The findings will serve to develop a questionnaire for a quantitative second phase. Cross-sectional online studies will survey staff responsible for self-help in rehabilitation clinics nationwide, representatives of self-help groups and staff of self-help clearinghouses. Quantitative data analysis with SPSS will include descriptive statistics, correlation, subgroup and multiple regression analyses. Additionally, a content analysis of rehabilitation clinics' websites will evaluate the visibility of self-help in their public relations. ETHICS AND DISSEMINATION: The University Medical Center Hamburg-Eppendorf Local Psychological Ethics Committee at the Center for Psychosocial Medicine granted ethical approval (reference number LPEK-0648; 10.07.2023). Informed consent will be obtained from all participants. Results dissemination will comprise various formats such as workshops, presentations, homepages and publications for the international scientific community, rehabilitation centres, self-help organisations and the general public in Germany. For relevant stakeholders, practical guides and recommendations to implement self-help friendliness will derive from the results to strengthen patient orientation and cooperation between rehabilitation and self-help to promote the sustainability of rehabilitation processes.

[Use of support and relief services for parents of children in need of care: Results of the FamBer observational study]. / Inanspruchnahme von Unterstützungs- und Entlastungsdiensten für Eltern pflegebedürftiger Kinder.

Use of support and relief services for parents of children in need of care: Results of the FamBer observational study Abstract: Background: Parents of children in need of care in Germany can fall back on a variety of relief and support services. So far, however, there has been a lack of systematic studies and quantitative data on the use of such offers at the individual level of parents and other legal guardians. Aim: The study on the compatibility of care and work for parents with a child in need of care (FamBer; funding: Federal Ministry for Family Affairs, Senior Citizens, Women and Youth, Germany) examines the knowledge of relief and support services, their use and the perceived benefits of these offers. Methods: 1070 parents answered a multidimensional online questionnaire in the cross-sectional study that was developed based on the Kindernetzwerk Study 2 from 2013 and the German socio-economic panel (SOEP). In addition to descriptive analyses, group comparisons were carried out using Chi2, Mann-Whitney U or Kruskal-Wallis H tests. Results: 43 to 58% of parents are aware of the respective legal options for taking time off work, but only very few families make use of them. The other support offers differ significantly in terms of the level of knowledge and utilization; these vary primarily with the education of the parents and the care needs of the child. They assessed the used services for consultation and advice as only little helpful. Conclusions: Due to the study design, we cannot rule out that the findings are also based on personal characteristics of the parents and their living conditions. Nevertheless, a large number of problems (e.g. a lack of information, low using, ineffectiveness of support services) can be identified that need to be overcome.

[Association of oral health literacy and behaviour with physical oral health. What role can dental education play?] / Zusammenhang von Mundgesundheitskompetenz und -verhalten mit physischer Mundgesundheit. Welche Rolle kann die zahnmedizinische Ausbildung spielen?

BACKGROUND: Oral health is an essential component of a person's general health and well-being. It is influenced by many factors. These include individual aspects such as oral health literacy and oral health behaviour. The aim of this study was to investigate the association between oral health literacy and behaviour with physical oral health. METHODS: In this population-based cross-sectional study, data of 5510 subjects enrolled in the Hamburg City Health Study (HCHS) from 2016 to 2018 with a mean age of 62.1 years and 50.7% women were evaluated. Physical oral health was assessed using the 14-item Physical Oral Health Index (PhOX). A newly developed 10-item questionnaire based on the Oral Health Literacy Adult Questionnaire and the 5th German Oral Health Study were used to determine oral health literacy and behaviour. RESULTS: The sum score of the 10 questions related to oral health literacy and behaviour significantly correlated with the PhOX sum score (r = 0.23; p < 0.001). An increase of one point in the total score of oral health literacy and behaviour was associated with an increase in the PhOX sum score of 1.45 points on average. This association decreased only marginally after integrating potential confounders such as age and education. CONCLUSION: Higher oral health literacy and better oral health behaviour are associated with better physical oral health. Oral health literacy and behaviour should be important targets in dental education to efficiently and sustainably improve the oral health of the general population.

An Evidence-Based Digital Prevention Program to Improve Oral Health Literacy of People With a Migration Background: Intervention Mapping Approach.

BACKGROUND: Studies in Germany have shown that susceptible groups, such as people with a migration background, have poorer oral health than the majority of the population. Limited oral health literacy (OHL) appears to be an important factor that affects the oral health of these groups. To increase OHL and to promote prevention-oriented oral health behavior, we developed an evidence-based prevention program in the form of an app for smartphones or tablets, the Förderung der Mundgesundheitskompetenz und Mundgesundheit von Menschen mit Migrationshintergrund (MuMi) app. OBJECTIVE: This study aims to describe the development process of the MuMi app. METHODS: For the description and analysis of the systematic development process of the MuMi app, we used the intervention mapping approach. The approach was implemented in 6 steps: needs assessment, formulation of intervention goals, selection of evidence-based methods and practical strategies for behavior change, planning and designing the intervention, planning the implementation and delivery of the intervention, and planning the evaluation. RESULTS: On the basis of our literature search, expert interviews, and a focus group with the target population, we identified limited knowledge of behavioral risk factors or proper oral hygiene procedures, limited proficiency of the German language, and differing health care socialization as the main barriers to good oral health. Afterward, we selected modifiable determinants of oral health behavior that were in line with behavior change theories. On this basis, performance objectives and change objectives for the relevant population at risk were formalized. Appropriate behavior change techniques to achieve the program objectives, such as the provision of health information, encouragement of self-control and self-monitoring, and sending reminders, were identified. Subsequently, these were translated into practical strategies, such as multiple-choice quizzes or videos. The resulting program, the MuMi app, is available in the Apple app store and Android app store. The effectiveness of the app was evaluated in the MuMi intervention study. The analyses showed that users of the MuMi app had a substantial increase in their OHL and improved oral hygiene (as measured by clinical parameters) after 6 months compared with the control group. CONCLUSIONS: The intervention mapping approach provided a transparent, structured, and evidence-based process for the development of our prevention program. It allowed us to identify the most appropriate and effective techniques to initiate behavior change in the target population. The MuMi app takes into account the cultural and specific determinants of people with a migration background in Germany. To our knowledge, it is the first evidence-based app that addresses OHL among people with a migration background.

Item distribution, scalability and internal consistency of the QUALIDEM quality of life assessment for patients with dementia in acute hospital settings.

BACKGROUND: Quality of life (QoL) of people with dementia (PwD) is an important indicator of quality of care. Studying the impact of acute hospital settings on PwD's QoL requires assessment instruments that consider environmental factors. Until now, dementia-specific QoL instruments have not yet demonstrated their feasibility in acute hospitals because their use takes up too much time or their validity depends on observation periods that usually exceed the average length of hospital stays. Therefore, validated instruments to study QoL-outcomes of patients with dementia in hospitals are needed. METHODS: Data stem from a study that analyzed the impact of a special care concept on the QoL of patients with dementia in acute hospitals. Total sample size consisted of N = 526 patients. Study nurses were trained in using an assessment questionnaire and conducted the data collection from June 2016 to July 2017. QoL was assessed with the QUALIDEM. This instrument consists of nine subscales that can be applied to people with mild to severe dementia (N = 344), while six of the nine subscales are applicable for people with very severe dementia (N = 182). Scalability and internal consistency were tested with Mokken scale analysis. RESULTS: For people with mild to severe dementia, seven out of nine subscales were scalable (0.31 ≤ H ≤ 0.75). Five of these seven subscales were also internally consistent (ρ ≥ 0.69), while two had insufficient reliability scores (ρ = 0.53 and 0.52). The remaining two (positive self-image, feeling at home) subscales had rather low scalability (H = 0.17/0.16) and reliability scores (ρ = 0.35/0.36). For people with very severe dementia, all six subscales were scalable (0.34 ≤ H ≤ 0.71). Five out of six showed acceptable internal consistency (ρ = 0.65-0.91). Only the item social relations had insufficient reliability (ρ = 0.55). CONCLUSIONS: In comparison with a previous evaluation of the QUALIDEM in a long-term care setting, the application in a hospital setting leads to very similar, acceptable results for people with mild to severe dementia. For people with very severe dementia, the QUALIDEM seems to fit even better in a hospital context. Results suggest either a revision of unsatisfactory items or a general reduction to six items for the QUALIDEM, for all PwD. In general, the QUALIDEM can be recommended as instrument to assess the QoL for PwD in the context of hospital research. Additionally, an investigation of the inter-rater reliability is necessary because the qualification of the nurses and the length of stay of the patients in the hospital differ from the previous investigations of the inter-rater reliability of QUALIDEM in the nursing home.

Do members of cancer peer support groups know more about cancer than non-members? Results from a cross-sectional study in Germany.

PURPOSE: This study aims to assess whether cancer-specific knowledge (CSK) is associated with membership in a cancer peer support group (PSG) and other factors. METHODS: A cross-sectional study investigated the CSK of 1121 cancer patients of various entities across Germany. CSK was measured with the BCKS-14, a 14-item knowledge instrument which was previously participatory developed with patient representatives and oncologists. Associations between CSK and PSG membership, sociodemographic factors, internet use, and preferences in medical decision-making were analysed with t-tests and multiple linear regressions. RESULTS: The t-test showed a statistically significant difference in CSK between members and non-members of PSGs. Knowledge for PSG members was on average 0.97 points higher (p < 0.001) and varied between 2 and 14 points compared to 0-14 points for non-members. Regression analysis revealed age, gender, time since diagnosis, education, internet use, and PSG activity to be statistically significant predictors. Younger (ß = - 0.15; p < 0.001), female (ß = 0.10; p = 0.001), higher educated patients (ß = 0.27; p < 0.001) with and a diagnosis longer ago (ß = 0.10; p = 0.002) who use the internet frequently for information seeking (ß = 0.20; p ≤ 0.001) and members of cancer PSGs (ß = 0.18; p ≤ 0.001) showed a higher CSK. CONCLUSION: Overall, CSK of the participants shows a high degree of variance. CSK should be promoted for all patients and especially for older, newly diagnosed patients with low educational levels and PSGs introduced early on as they contribute to improving CSK among other benefits.

Digitization in health-related self-help - Results of an online survey among self-help organizations in Germany.

Background: Nowadays, much hope and expectations are associated with digitization in the health sector. The digital change also affects health-related self-help. A nationwide survey of self-help organizations (SHOs) aimed to show chances and limitations in the use of interactive IT tools like webforums, online meetings or social media as well as digital infrastructures for their organizational management. In this survey, we also determined whether SHO staff themselves have support and qualification needs with regard to this topic. Design: The online survey was conducted between 14 November and 8 December 2019, i.e., immediately before the outbreak of the Covid-19 pandemic. The questionnaire consisted of 50 questions consisting of 180 single items which could be answered in 30-40 min. After two reminder letters, 119 questionnaires of the SHOs were gathered and analysed. Results: SHOs already have a lot of experience with digital media/tools (e.g., own homepage, social media, cloud computing). Some tools are attested a "high" or "very high" benefit by more than 80% of users. Perceived benefits, however, are also facing a number of problems, ranging from lack of resources to data protection issues. Despite, or even because of the limits of digitization, there is great desire and need for support and further training in SHOs (and self-help groups). Conclusions: At many points in the survey it was shown that digital media can be a useful extension of "traditional" collective self-help. Taking into account the risks and limitations associated with digital tools, SHOs can be central stakeholders in digitization in health-related self-help. Patient or Public Contribution: The study was financially supported by the Federal Ministry of Health, Germany. A detailed representation of the results is publicly available at: https://www.uke.de/dish.

Evidence from the Hamburg City Health Study - association between education and periodontitis.

OBJECTIVE: Large-scale population-based studies regarding the role of education in periodontitis are lacking. Thus, the aim of the current study was to analyze the potential association between education and periodontitis with state of the art measured clinical phenotypes within a large population-based sample from northern Germany. MATERIAL & METHODS: The Hamburg City Health Study (HCHS) is a population-based cohort study registered at ClinicalTrial.gov (NCT03934957). Oral health was assessed via plaque-index, probing depth, gingival recession and gingival bleeding. Periodontitis was classified according to Eke & Page. Education level was determined using the International Standard Classification of Education (ISCED-97) further categorized in "low, medium or high" education. Analyses for descriptive models were stratified by periodontitis severity. Ordinal logistic regression models were stepwise constructed to test for hypotheses. RESULTS: Within the first cohort of 10,000 participants, we identified 1,453 with none/mild, 3,580 with moderate, and 1,176 with severe periodontitis. Ordinal regression analyses adjusted for co-variables (age, sex, smoking, diabetes, hypertension and migration) showed that the education level (low vs. high) was significantly associated with periodontitis (OR: 1.33, 95% CI: 1.18;1.47). CONCLUSION: In conclusion, the current study revealed a significant association between the education level and periodontitis after adjustments for a set of confounders. Further research is needed to develop strategies to overcome education related deficits in oral and periodontal health.

Self-help friendliness in cancer care: A cross-sectional study among self-help group leaders in Germany.

BACKGROUND: Peer support is increasingly recognized as crucial for improving health and psychosocial outcomes in oncological care. The integration of cancer self-help groups (SHGs) into cancer care facilities has gained importance in recent years. Yet, there is a lack of knowledge of the extent and quality of cooperation between cancer care facilities and SHGs and their integration into routine care. The concept of self-help friendliness (SHF) provides a feasible instrument for the measurement of cooperation and integration. METHODS: A cross-sectional study across Germany investigates the experiences of 266 leaders of cancer SHGs concerning their cooperation with cancer care facilities based on the criteria for SHF. The participatory study was developed and conducted with representatives of the House of Cancer Self-Help and the federal associations of cancer self-help. RESULTS: According to the SHG leaders, about 80% of their members primarily find their way to an SHG via other patients and only less than 50% more or less frequently via hospitals or rehabilitation clinics. The quality of cooperation with cancer centres, hospitals and rehabilitation clinics, however, is rated as good to very good by more than 70% of the respondents. Nine out of 10 quality criteria for SHF are fully or at least partially implemented, the values vary between 53% and 87%. Overall, 58% of the SHG leaders feel well to be very well integrated into care facilities. CONCLUSIONS: The results show a positive assessment of the involvement of SHGs in oncological care, but differences between inpatient and outpatient care and low referrals to SHGs are prominent. The concept of SHF is a feasible solution for a systematic and measurable involvement of SHGs. PATIENT OR PUBLIC CONTRIBUTION: The perspectives and insight of patient representatives obtained through qualitative interviews were directly incorporated into this study. Representatives of cancer self-help organizations were involved in the development of the questionnaire, reviewed it for content and comprehensibility, and further helped to recruit participants.

Access Barriers to Dental Treatment and Prevention for Turkish Migrants in Germany - A Qualitative Survey.

Introduction: The worldwide migration movement is growing and thereby challenging the health care systems of immigration countries like Germany to make health care equally accessible for all people. Due to their low oral health status and low uptake rates of dental treatment and prevention, migrants were detected as a vulnerable group. Data regarding dental care access barriers of this group is limited. Therefore, the following study established a deeper understanding of unknown access barriers. Methods: Nine expert interviews and one focus group interview were conducted semi-structured via interview guideline in the period of August until October 2018. The experts were persons with strong vocational interactions and experiences with the sector oral health care and migration. The focus group participants had a Turkish migration background. Results: The expert and focus group interviews revealed a variety of barriers that exist toward dental treatment and prevention for migrants. Language, perceived significance of oral health, oral health knowledge, health socialization and patient-dentist interaction were detected to be the main barriers with underlying subthemes and interactions. Furthermore, a predominantly not precaution-oriented dental service utilization of migrants was underlined by the interviewees. Additionally, ways to reach a higher cultural sensitivity in oral health care were stated. Conclusion: With respect for research, there is a need for the integration of migrant-specific items when collecting health data from people. With respect for policy, there is a need for more structural and individual attention for promoting equal access to oral health care and prevention measures for people with a migrant background.

Experiences of persons with multiple sclerosis with rehabilitation-a qualitative interview study.

BACKGROUND: Managing multiple sclerosis (MS) includes different treatment approaches. Rehabilitation is a key strategy in MS for improving functioning, activity and participation. As part of a larger study on overall patient experiences with different treatment approaches, this study aims to give an overview of different patients' experiences and perspectives on inpatient rehabilitation in MS. METHODS: We conducted problem-centered interviews in 50 persons with MS in Germany, of whom most had relapsing-remitting MS. We used the maximum variation sampling method during recruitment. Data were analyzed thematically. RESULTS: As a result of the analysis, three major themes were identified: 1) factors contributing to the decision-making concerning rehabilitation, 2) experience with the rehabilitation setting, 3) benefits of rehabilitation treatments. The treating physicians' attitude had a major impact on the decision to either opt for rehabilitation or not. Setting goals prior to rehabilitation was given a high priority. Exchanging experiences with other persons with MS presented a major benefit from rehabilitation while for some being separated from regular daily life resulted in a more ambiguous attitude ranging from appreciation of escaping daily hassles to substantial behavioral change management. CONCLUSION: Patients reported various experiences in the process of decision-making with regard to rehabilitation. Physicians´ advice, goal setting and the selection of the most suitable rehabilitation clinic were considered most relevant.

Experiences of persons with Multiple Sclerosis with lifestyle adjustment-A qualitative interview study.

BACKGROUND: Persons with Multiple Sclerosis (pwMS) follow individual strategies to cope with this highly heterogeneous disease. As surveys show, lifestyle habits play an important role in pwMS. However, little is known about individual experiences of pwMS with different lifestyle adjustment strategies. OBJECTIVE: This study aims to describe and understand individual experiences of pwMS with lifestyle adjustments. METHODS: Semi-structured interviews were conducted with 50 pwMS in Germany. Criteria for inclusion were age ≥ 18 years and a diagnosis of relapsing-remitting Multiple Sclerosis. Data were analyzed inductively and deductively according to a six-step thematic analysis. RESULTS: The three main themes for experience-based lifestyle adjustments were: 1) nutrition and supplements, 2) exercise and physical activity, and 3) stress management. Influencing factors on the decision-making process such as active disease management, information and advice, desire for mental health and social support, and the wish for self-determination were identified. Impacts of starting or maintaining lifestyle habits included, for example, MS-specific, general, and mental health benefits, the development of coping strategies, social support, and barriers that led to a termination of lifestyle adjustments. CONCLUSION: This study provides a rich and nuanced amount of experiences of pwMS with lifestyle adjustments and leads to three important conclusions: 1) Further research is warranted to better describe the perceived effects of lifestyle habits on MS symptoms and progression, in particular with regard to nutrition and stress reduction; 2) patient education in MS should include the available evidence on lifestyle management and 3) patients need to be actively supported in changing their lifestyle behavior.

Development and evaluation of a website with patients experiences of multiple sclerosis: a mixed methods study.

BACKGROUND: A variety of management options (e.g., disease-modifying therapy, lifestyle interventions, rehabilitation) are available for persons with relapsing-remitting multiple sclerosis (MS). Besides coping with the diagnosis, persons with MS have to make complex decisions, e.g., regarding disease-modifying therapies. In addition to factual information, reports of patient experiences may support other patients in their decision-making. Therefore, we developed a website presenting patient experiences illustrated by video, audio and text files. This study aimed to test the acceptability and usability of a website with patient experiences with MS. METHODS: A mixed-methods approach was applied. A total of 69 participants visited the German "Patient Experiences with MS (PExMS)" website and among them, 50 persons with MS and 6 experts completed an online survey. In total, 18 participants took part in telephone interviews or focus groups. Data from the survey were analysed using descriptive statistics. Qualitative data were analysed using thematic analysis. RESULTS: Both quantitative and qualitative responses suggest that the PExMS website was viewed positively by patients and experts. 94% of persons with MS agreed that the information was comprehensible and reliable. 54% felt encouraged to share their health problems with others after having studied the website. 74% claimed to use the website if they had to make a decision regarding their health. Qualitative responses deduced from the website fell into 5 key themes: (1) web design, appearance, and functionality, (2) content, (3) usability, (4) satisfaction, and (5) loyalty. The search for persons of similar age and with comparable experiences was a major driving force to navigate the website. The material on the website was perceived as diverse, covering both positive and negative experiences in daily living with MS. All participants greatly appreciated having access to other people's experiences online and judged the material on the website as particularly helpful in decision-making for disease-modifying therapies. CONCLUSIONS: The findings suggest that the PExMS website might have the potential to be a useful source of audio-visual information for persons with MS. Given the lack of websites available to patients with experiential information, health care professionals may be encouraged to routinely inform patients about this website at regular appointments.

Personality and its association with self-management in multiple sclerosis.

BACKGROUND: In a healthcare system which aims to empower the patient, self-management becomes increasingly important. In Multiple Sclerosis, an effective self-management is associated with various favorable health-related outcomes like improvement in quality of life, the reduction of depression and anxiety symptoms, and reduced healthcare costs. This study investigates the association between the Big Five personality traits and self-management including activity in self-help groups. METHODS: People with MS were recruited via several paths within Germany (e.g. medical practices, social events and the German MS society). The final study sample consisted of 682 participants who answered a multidimensional questionnaire. This comprised the Big-Five-Inventory-10 for personality, the Health Education Impact Questionnaire (heiQ) for self-management competencies, questions for participation in self-help groups, and socio-demographic and clinical variables. RESULTS: Multivariate regression analyses showed that personality could explain a greater amount of variance of self-management than socio-demographic and clinical variables. Neuroticism was the strongest predictor and correlated negatively with all heiQ-dimensions of self-management. In contrast, in logistic regression analysis none of the Big Five traits became significant in predicting the activity in self-help groups. CONCLUSION: As expected, personality plays an important role regarding self-management. Ideally, a time-saving personality assessment should be considered in routine clinical practice to identify patients at risk; however, at a minimum, personality traits should be considered in consultations with their neurologists. They may need help to understand the benefits of effective self-management and should receive support to improve their self-management skills and to reduce their neuroticism to lower the risk of secondary complications.

Empowerment in cancer patients: Does peer support make a difference? A systematic review.

OBJECTIVE: Empowerment is critical for cancer patients to make informed choices, to manage medication, and to navigate through the oncological care system. Cancer peer support provides patients with information, emotional relief and may promote empowerment. This paper provides a systematic review of the literature examining the impact of cancer peer support interventions on psychological empowerment. METHODS: PubMed, Web of Science, CINAHL, Cochrane Library, PsycINFO and PSYNDEX databases were systematically searched from inception until December 2020. We included quantitative studies, published in English or German, which examined peer-led cancer support interventions and their impact on the three components of psychological empowerment (intrapersonal, interactional and behavioural) among participating cancer patients. RESULTS: Database searches and screening of relevant reference lists identified 2336 potentially relevant articles. A total of 29 studies were included in the review. Active coping, self-efficacy and knowledge were the most prominent dimensions of empowerment in these studies. The majority of studies revealed that peer support led to a small to medium, significant increase in psychological empowerment, and was associated with further patient-reported benefits. CONCLUSIONS: The existing evidence suggests a weak to moderate, positive association between cancer peer support and the three components of psychological empowerment among cancer patients. Peer support groups should be seen as an important element in cancer care and clinical practice and, thus, be more systematically involved in cancer care.

Patients experiences with multiple sclerosis disease-modifying therapies in daily life - a qualitative interview study.

BACKGROUND: Besides coping with a disease with many uncertainties, people with relapsing-remitting multiple sclerosis face complex decisions concerning disease-modifying therapies (DMTs). In an interview study, we aimed to assess patients' experiences with DMTs. METHODS: Problem-centred interviews were conducted with 50 people with relapsing-remitting multiple sclerosis in Germany using maximum variation sampling and covering all licensed DMTs. Data were analysed thematically using deductive and inductive categories. RESULTS: 47 of 50 patients had treatment with at least one of the approved DMTs. The main themes were: (1) starting a DMT, (2) switching to another DMT, (3) discontinuing a DMT, and (4) multiple sclerosis without starting a DMT. Different intercorrelated factors influenced the decision-making processes for or against a DMT. Individual experiences with DMTs in daily life contained the effort in administration, success, and failure of DMTs, coping strategies and well-being without DMTs. The decision-making process for or against a DMT and the use of those treatments can be understood as a constant, continually shifting process, complicated by different factors, which change over time. Experiences with DMTs were characterized by attempts to handle uncertainty and to (re)gain control and integrate adaptivity into one's life. CONCLUSIONS: The study provides a rich and nuanced amount of patients' experiences with DMTs. The findings demonstrate the importance for practitioners to look at current life circumstances of patients with multiple sclerosis when recommending a DMT and to promote and enable patients to make informed decisions.

Development of the Oral Health Literacy Profile (OHLP)-Psychometric properties of the oral health and dental health system knowledge scales.

OBJECTIVES: Current oral health literacy (OHL) instruments vary in focus, methodology, administration time and burden. The widely used word recognition tests fail to encompass important OHL domains, while others exceed time frames for use in practical settings, require an interviewer or mainly measure self-assessments. This paper describes the development of the Oral Health Literacy Profile (OHLP), introduces its components and evaluates the psychometric properties of its two core modules, the knowledge tests. METHODS: A preliminary version of the questionnaire was developed and assessed for content validity, relevance and redundancy by an expert panel. It was tested in a convenience sample (n = 95) leading to the creation of a 28-item questionnaire, which was afterwards tested in a second convenience sample (n = 193). Item difficulty, discrimination, internal reliability and construct validity were assessed for the oral health knowledge (OHK) and dental health system knowledge (DHSK) modules. RESULTS: The items showed acceptable range of difficulty (ideal: 7 items; easy: 5 items; and difficult: 3 items) and good to very good discriminatory power (the point-biserial index (PBI) > 0.30: all items). Construct validity was considered to be fulfilled when 75% of the hypotheses of expected group differences were met. Satisfactory internal reliability was observed. CONCLUSION: With all its components, the OHLP is a suitable short instrument to assess the most relevant dimensions of the multifaceted construct of OHL. PRACTICE IMPLICATION: The OHLP can be widely used in research, especially suitable in practical settings, and thereby identify patients who may benefit from oral health education.

[Oral health literacy of persons with migration background-first results of the MuMi study]. / Mundgesundheitskompetenz von Menschen mit Migrationshintergrund ­ Erste Auswertungen der MuMi-Studie.

BACKGROUND: First investigations indicate a migration background of residents in Germany as a discrete risk factor for poor oral health. A lower level of oral health literacy among people with a migration background is considered a reason worthy of being investigated. AIM: This article presents results on oral health literacy and oral health gained from the MuMi study (promoting oral health and oral health literacy of people with a migration background). METHODS: The oral health and oral health literacy as well as the sociodemographics of patients with and without migration background were examined in 40 dental surgeries in Hamburg, Germany. Associations between migrant status, oral health, and oral health literacy were analyzed with logistic regressions. Potential confounders were gradually integrated into the multivariate analyses. RESULTS: Patients with and without a migration background differed significantly in oral health literacy and clinical parameters of oral health (approximal plaque index and degree of caries restoration). The logistic regression analysis revealed highly significant associations between migration background, oral health literacy, and oral hygiene, while also accounting for education and socioeconomic status. DISCUSSION: Migration background constitutes a discrete risk factor for lower oral health and oral health literacy for these relevant population groups. This fact needs stronger reflection in further research and political decision-making in order to promote equality of oral health opportunities.