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.

[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.

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.

[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.

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.

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.

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.

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.

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.

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.

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.

Do postponed dental visits for financial reasons reduce quality of life? Evidence from the Survey of Health, Ageing and Retirement in Europe.

BACKGROUND: There is a lack of studies investigating the impact of postponed dental visits due to financial constraints on quality of life. AIMS: The aim of this study was to identify whether these factors are associated longitudinally. METHODS: Data were derived from waves 5 and 6 of the "Survey of Health Ageing and Retirement in Europe" (SHARE). The analysis focused on Germany (n = 7506). The widely used CASP-12 was used to quantify the quality of life. Postponed dental visits for financial reasons in the preceding 12 months (no, yes) were used as the main explanatory variable. Socioeconomic and health-related covariates were included in regression analysis. RESULTS: Gender stratified regression analysis showed that quality of life decreased with the presence of postponed dental visits due to financial reasons in men. Furthermore, quality of life decreased with the worsening of self-rated health in both men and women. The outcome measure was not associated with age, marital status, income, and chronic diseases in both sexes. DISCUSSION: Study findings suggest that postponing dental visits due to financial constraints contributes to a decreased quality of life among older men. CONCLUSION: Efforts to avoid these circumstances might help to maintain the quality of life in older men.

[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.

[Use of sedating medication and physical restraints for patients with dementia in acute care hospitals : A non-randomized case control study]. / Einsatz von sedierenden Medikamenten und bewegungseinschränkenden Maßnahmen bei Patienten mit Demenz im Akutkrankenhaus : Eine nichtrandomisierte Fall-Kontroll-Studie.

BACKGROUND: The majority of acute care hospitals are not prepared for people with dementia with acute diseases in need of treatment. This results in an increased likelihood of the personnel being overtaxed. Dementia is the most frequent reason that hospital personnel administer sedating medication and use restraining measures. OBJECTIVE: The aim of this study was to investigate factors that influence the (inappropriate) use of sedating medication and physical restraints for patients with dementia in acute care hospitals. METHODS: A non-randomized case control study, including two internal medicine wards was conducted in Hamburg, Germany. In the intervention group a special care concept was implemented focussing on patients with dementia, while the control group received regular care without a special dementia care concept. Logistic regression models were conducted to investigate associations between factors, such as age, severity of dementia, conspicuous behavior, Barthel index and type of treatment and the use of sedating medication and physical restraint measures. RESULTS: Challenging behavior (odds ratio, OR = 1.32) and treatment in the control group (OR=1.94) were significantly associated with the use of sedating medication. A low Barthel index, longer periods of hospitalization and treatment in the control group were significantly associated with a higher probability of the implementation of physical restraining measures. DISCUSSION: The use of sedating medication as well as physical restraining measures varied greatly between the intervention and control groups. This is in line with other studies that came to similar results and suggests that multiple components of special care concepts can explain these differences. These include architectonic design and spatial aspects as well as dementia-specific training of employees and an appropriate personnel complement. Such interventions can also reduce agitation and behavioral problems of patients. The avoidance of sedation and restraining measures is also positively associated with an increase in the quality of life of patients with dementia.

[Collective patient centeredness and patient involvement through self-help groups]. / Kollektive Patientenorientierung und Patientenbeteiligung durch gesundheitsbezogene Selbsthilfe.

Over the last decades, health-related collective mutual aid, such as self-help groups, support groups and patient organizations, has become an important player in Germany's healthcare system. As autonomous collectives of patients and their relatives in manifold indication areas, they act and organize themselves on a voluntary basis. Increasingly, they have a greater say and are turning into collaborators in the development of the healthcare system. Self-help representatives are involved in committees as patient representatives on all political levels, national as well as federal state and local. In these roles they are also spokespersons for the interests of patients and their relatives.Self-help groups (SHGs) and self-help organizations (SHOs) are forming specific patient collectives that are seeking cooperation with the healthcare system. This article is about different forms and possibilities of inpatient and ambulatory healthcare institutions to achieve collective patient centeredness and patient involvement over and above individual patient centeredness. Furthermore, activities of SHGs and SHOs to promote their integration in healthcare structures are discussed.

[The role of self-help groups and self-help organisations in promoting health literacy in the public]. / Die Rolle der gemeinschaftlichen Selbsthilfe in der Weiterentwicklung der Gesundheitskompetenz der Bevölkerung.

Health literacy has recently been put on the health policy agenda in Germany, triggered by several recent studies that show that more than half of the German population has difficulties in finding, understanding, appraising and applying health information. Respective statistics reflect these individual difficulties and point at user preferences and competencies being inadequately considered and responded to by the healthcare system. Among other measures to improve this situation, a national action plan on health literacy was launched in 2018, which explicitly addresses self-help groups and self-help organisations repeatedly as an important player in promoting health literacy on individual and organisational levels.This article discusses the relevance of the underlying and guiding concept of empowerment in mutual self-help and concludes that fostering health literacy was and still is a cornerstone in health-related self-help from the very beginning - just without using this term. Based on results from surveys, we show how those participating members of self-help groups increase their health literacy, and how educative, supportive and advisory tasks for self-help groups and organisations emerge from these developments. Thereupon, the specific role of mutual self-help becomes evident for, specifically, the individual daily life dimensions of health literacy.

[Participation in self-help groups: impact on self-management and knowledge]. / Teilnahme an Selbsthilfegruppen: Wirkungen auf Selbstmanagement und Wissenserwerb.

BACKGROUND: Self-help groups (SHGs) are an inherent part of patient involvement and play an important role in the healthcare system. Until now, however, there has been a lack of systematic investigations and quantitative data about the individual impact of self-help for patients and relatives. OBJECTIVES: This study presents the results of a comparison between members of SHGs and non-members. Thereby, the effects of self-help shall be described in terms of empowerment and self-management. The study is part of the project "Health-related Collective Self-Help in Germany" (Gesundheitsbezogene Selbsthilfe in Deutschland-SHILD) funded by the Federal Ministry of Health. MATERIALS AND METHODS: The study was conducted with patients from five therapeutic areas (diabetes mellitus type 2, prostate cancer, multiple sclerosis, tinnitus, relatives of dementia patients). Participants administered a multidimensional questionnaire (paper-and-pencil or online). Of the 2870 participants in this analysis, 49% were active members of SHGs. RESULTS: Statistical analysis showed some significant, but small differences between the two groups in five out of seven scales of the Health Education Impact Questionnaire (heiQ) in favour of the SHG members. Furthermore, SHG members performed better in specific knowledge tests. Members see the importance of their group especially in social inclusion, psychosocial relief, coping with the disease and new insights in dealing with the disease. CONCLUSIONS: With respect to the study design we cannot rule out that differences might be based on personal characteristics influencing the decision to participate in a SHG or not. But as the results are controlled for confounders, the hypothesis that SHG participation has a positive impact on the outcomes rather than vice versa seems supported.

Participation in a prostate cancer support group and health literacy.

BACKGROUND: To cope with prostate cancer (PC) and its consequences and to be certain about therapeutic alternatives, some patients seek mutual help in prostate cancer support groups (PCSGs), where they share information and find social support. Our study was intended to assess whether group participation is associated with health literacy (HL). METHODS: We compared PCSG members (n = 441) with PC patients without support group experiences (n = 135) in a cross-sectional design. For this purpose, HL was operationalized through PC-specific knowledge, noncancer-specific knowledge about health care, guideline awareness, and skills needed to apply health information to meet own needs. Binary logistic regression models were calculated. Socio-demographic data and disease-related characteristics were used as control variables. RESULTS: Knowledge about PC (OR, 2.2; CI, 1.3-3.7), the fact of having heard of guidelines (OR, 3.7; CI, 2.1-6.8) and having read one (OR, 5.1; CI, 2.8-9.4), and competencies regarding health service navigation (OR, 1.8; CI, 1.0-3.1) are associated with PCSG membership. No statistically significant associations could be found between PCSG membership and further skills questioned, as well as between membership and knowledge about noncancer-specific health care. CONCLUSION: PCSG membership is associated with HL in some areas only. In particular, the groups seem to provide an important platform for information exchange in the field of PC. The potentially conflicting results on PC knowledge and the application skills may arise from the different forms of measurement-knowledge was tested; skills were self-assessed.

Oral health-related quality of life of children and adolescents with and without migration background in Germany.

OBJECTIVES: To compare oral health-related quality of life (OHRQoL) in children and adolescents with and without migration background, and to assess whether potential differences in OHRQoL can be sufficiently explained by oral health characteristics. MATERIALS UND METHODS: A consecutive sample of 112 children and adolescents was recruited in a German university-based orthodontic clinic, and a convenience sample of 313 children and adolescents of German public schools was enrolled in the study (total N = 425, age range 7-17 years). However, 29 participants were excluded due to insufficient information regarding migration background. Accordingly, the non-migrant group consisted of 262 participants (61.6%). For children with migration background, two groups were classified: (i) one parent born in a foreign country (N = 41, 9.6%, single-sided migration background), and (ii) both parents and/or child born in a foreign country ( N= 93, 21.9%, double-sided migration background). OHRQoL was assessed using the German 19-item version of the Child Oral Health Impact Profile (COHIP-G19). Additionally, physical oral health of 269 children with classified migration background was determined in a dental examination. RESULTS: Overall, OHRQoL was significantly lower in the group with double-sided migration background indicated by lower COHIP-G19 summary scores (mean: 58.6 points) than in the group with single-sided migration background (mean: 63.3 points) or the non-migrant group (mean: 63.2 points). Likewise, the summary scores of the subscale "oral health well-being" and the subscale "social/emotional, school, and self-image" were also lower in the double-sided migrant group than in the other two groups. Linear regression analysis showed an association between double-sided migration background and impaired OHRQoL, even after statistically controlling for demographic, socioeconomic, and oral health characteristics. CONCLUSION: Children and adolescents with double-sided migration background have poorer OHRQoL than comparably aged migrants with single-sided migration background or non-migrations. Between-group differences in OHRQoL could not be sufficiently explained by effects of socioeconomic status or physical oral health characteristics. Thus, other methodological, cultural, or immigration-related factors might also play an important role for the observed effects.

Oral health and access to dental care - a comparison of elderly migrants and non-migrants in Germany.

OBJECTIVES: To compare oral health, access barriers to dental care, oral health behavior and oral hygiene behavior of elderly German residents with and without immigration background. DESIGN: In this cross-sectional explorative study, a convenience sample (N = 112, age ≥ 60 years, 54% immigrants) was recruited in four dental practices in Hamburg, Germany. Oral health was assessed with Decayed/Missing/Filled Teeth (DMFT), Papillary Bleeding Index (PBI), and Approximal Plaque Index (API). Dental health was operationalized as number of decayed teeth, and poor oral hygiene based on a PBI ≥ 40%. Access barriers and oral health behavior were assessed with a standardized questionnaire. RESULTS: While caries experience was similar in migrants and non-migrants (DMFT mean: 24.8 vs. 23.4, n.s.), significantly more teeth were decayed (5.3 vs. 2.1, p < 0.001), and API (55.3% vs. 33.0%, p = 0.002) and PBI (46.3% vs. 30.5%, p = 0.016) were significantly higher in migrants. After adjusting for age, sex, income, education, and number of teeth, migrants still had on average 3 decayed teeth more than non-migrants. However, impact of migration background on poor oral health changed from OR = 3.61 (p = 0.007) to OR = 1.05 (n.s.) after adjusting for confounders, mainly due to lower income in migrants. Fewer migrants had visited a dentist within the past 12 months, and migrants were less likely to have a regular dentist that they visit and more often indicated language or cost barriers than non-migrants. CONCLUSION: Elderly German migrants have higher treatment needs than non-migrants. Likely causes are poorer oral hygiene and lower utilization of dental care services. Specific prevention programs targeting migrants are warranted to improve oral health in this disadvantaged group.