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Background: Most health systems are insufficiently prepared to promote the participation of chronically ill patients in their care. Strong primary health care (PHC) strengthens patients' resources and thus promotes their participation. The tasks of providing continuous care to people with chronic diseases and promoting self‐management are the responsibility of PHC nurses. Recent research assessing enablers of or barriers to nurses' efforts to support patients' participation has mostly not considered the special situation of patients with chronic diseases or focused on the PHC setting. Objective: To investigate enablers of and barriers to PHC nurses' efforts to promote the participation of chronically ill patients in their care. Methods: We interviewed 34 practicing PHC nurses and 23 key informants with advanced knowledge of PHC nursing practice in Brazil, Germany and Spain. The data was analyzed using thematic coding. Results: We identified four categories of barriers and enablers. (1) Establishing bonds with patients: Interviewees emphasized that understanding patients' views and behaviours is important for PHC nurses. (2) Cooperation with relatives and families: Good relationships with families are fundamental, however conflicts within families could challenge PHC nurses efforts to strengthen participation. (3) Communication and cooperation within PHC teams: PHC nurses see Cooperative team structures as a potential enabler, while the dominance of a 'biomedical' approach to patient care is seen as a barrier. (4) Work environment: Interviewees agreed that increased workload is a barrier to patient participation. Discussion and Conclusions: Supporting patient participation should be acknowledged as an important responsibility for nurses by general practitioners and PHC planners. PHC nurses should be trained in communicative competence when discussing participation with chronically ill patients. Interprofessional education could strengthen other professionals' understanding of patient participation as a nursing task. Patient or Public Contribution: This study is part of a research project associated with the research network 'forges: User‐oriented care: Promotion of health in the context of chronic diseases and care dependency'. The study's focus and provisional results were discussed continuously with partners in health and social care practice and presented to and discussed with the public at two conferences in which patient representatives, professionals and researchers participated. [ABSTRACT FROM AUTHOR]

Objective This paper examines how negative experiences with the health-care system create a lack of confidence in receiving medical care in seven countries: Australia, Canada, Germany, the Netherlands, New Zealand, the United Kingdom, and the United States. Methods The empirical analysis is based on data from the Commonwealth Fund International Health Policy Survey 2007, with nationally representative samples of adults aged 18 and over. For the analysis of the experience of cost barriers and confidence in receiving medical care, we conducted pairwise comparisons of group percentages as well as country-wise multivariate logistic regression models. Results Individuals who have experienced cost barriers show a significantly lower level of confidence in receiving safe and quality medical care than those who have not. This effect is most pronounced in the United States, where people who have foregone necessary treatment because of costs are four times as likely to lack confidence as individuals without the experience of cost barriers (adjusted odds ratio 4.00). In New Zealand, Germany, and Canada, individuals with the experience of cost barriers are twice as likely to report low confidence compared with those without this experience (adjusted odds ratios of 1.95, 2.19 and 2.24, respectively). In the Netherlands and UK, cost barriers are only a marginal phenomenon. Conclusions The fact that the experience of financial barriers considerably lowers confidence indicates that financial incentives, such as private co-payments, have a negative effect on overall public support and therefore on the legitimacy of health-care systems. [ABSTRACT FROM AUTHOR]

Objectives: Decision aids (DAs) are promising tools to foster evidence‐based shared decision‐making between practitioners and service users. Nevertheless, it is still obscure how an evidence‐based DA for people with severe mental illness, especially psychosis, should look in an inpatient treatment setting to be useful and feasible. Therefore, we conducted focus groups with psychiatrists and service users to collect and assess their expectations and wishes regarding an evidence‐based DA. From these findings, we derived immediate recommendations for the future development of DAs. Methods: We held two group interviews with service users (n = 8) and three group interviews with psychiatrists (n = 10). We used an open, large‐scale topic guide. First, we presented data from a current meta‐analysis on antipsychotics to the interviewees and, in a second step, asked for their expectations and wishes towards a DA that integrates these data. Results: Our thematic analysis revealed six key themes addressed by the respondents: (1) general considerations on the importance and usefulness of such a DA, (2) critical comments on psychiatry and psychopharmacotherapy, (3) communicative prerequisites for the use of a DA, (4) form and content of the DA, (5) data input, data processing and output as well as (6) application of the DA and possible obstacles. Conclusions: Participants identified several important features for the development of DAs for selecting antipsychotics in inpatient psychiatric treatment. The digital format was met with the greatest approval. Especially the adaptability to different needs, users and psychopathologies and the possibility to outsource information dissemination via app seemed to be a decisive convincing argument. Further research is required to test specific features of DAs to be developed in clinical settings. Patient or Public Contribution: The entire project is supported by an advisory board, including also experienced users. The members are regularly updated about the process and give important feedback. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

Introduction: This mixed‐method study explores psychological needs, access and barriers in coronary heart disease (CHD) patients with and without mental health issues (MHI) within the German healthcare system. Methods: This study was conducted in three different healthcare settings: two hospitals, two rehabilitation clinics and three cardiology practices in Cologne, Germany. Patients were screened for angiographically documented CHD and other inclusion criteria. In total, 364 CHD patients took part in this study. It consisted of two parts: In the first part, participants filled in a newly developed questionnaire about their psychological needs, access and barriers within the healthcare system and their contact with their doctor in these matters. Then, patients were screened for MHIs with the help of the Hospital Anxiety and Depression Scale (HADS). When a score above seven was scored on the HADS, patients were additionally screened for specific MHIs using the Structured Clinical Interview for DSM‐IV Axis I Disorders. In the second part, 20 participants were subsequently interviewed in a semi‐structured interview to generate more in‐depth findings. Results: The interviews show that CHD patients with and without MHI experienced a cardiac event as life‐changing and had an urgent need to talk about CHD with their doctor, mostly the general practitioner (GP). When the GP spoke to the patient shortly after the cardiac event, patients experienced relief and were better able to cope with their illness. Only 9.1% reported being aided in their search for psychotherapeutic treatment or drug treatment (4.1%). Conclusion: The needs of CHD patients with and without MHI were not adequately satisfied within our sample. Psychological measures are necessary for sufficient improvement, such as training of doctors in doctor–patient communication (e.g., better support in coping with MHI/CHD), improvements in the procedure (more time for conversations during doctor contacts), and improvement of structural requirements (referring patients faster to psychotherapists). Patient or Public Contribution: We received input from patients during pretests and used the feedback to tailor our questionnaire and the interview guidelines. Afterwards, we disseminated the main results for the patient and public involvement (e.g., public lectures, leaflets for self‐help groups, etc.). [ABSTRACT FROM AUTHOR]

Introduction: To effectively foster patient‐centeredness (PC), it is crucial to measure its implementation. So far, there is no German measure to assess PC comprehensively. The aim of this study is to develop and select items for the Experienced Patient‐Centeredness (EPAT) Questionnaire, a patient‐reported experience measure (PREM). The EPAT intends to assess PC from the perspective of adult patients treated for different chronic diseases in inpatient and outpatient settings in Germany. Furthermore, we aim at providing a best‐practice example for developing PREMs from qualitative data. Methods: The development process comprised a three‐phase mixed‐method design: (1) preparation, (2) item generation and (3) item selection and testing of content validity. We generated items using qualitative content analysis based on information from focus groups, key informant interviews and literature search. We selected items using relevance rating and cognitive interviews. Participants were patients from four chronic disease groups (cancer, cardiovascular disease, mental disorder, musculoskeletal disorder) and healthcare experts (e.g., clinicians, researchers, patient representatives). Results: We conducted six focus groups with a total of 40 patients, key informant interviews with 10 experts and identified 48 PREMs from international literature. After team discussion, we reached a preliminary pool of 152 items. We conducted a relevance rating with 32 experts and 34 cognitive interviews with 21 patients. We selected 125 items assessing 16 dimensions of PC and showed high relevance and comprehensibility. Conclusions: The EPAT questionnaire is currently undergoing psychometric testing. The transparent step‐by‐step report provides a best practice example that other researchers may consider for developing PREMs. Integrating literature and experts with a strong focus on patient feedback ensured good content validity. The EPAT questionnaire will be helpful in assessing PC in routine clinical practice in inpatient and outpatient settings for research and quality improvement. Patient or Public Contribution: Patients were not involved as active members of the research team. While developing the funding proposal, we informally reached out to several patient organizations who all gave us positive feedback on the study aims, thereby confirming their relevance. Those patient organizations endorsed the funding proposal with formal letters of support and supported recruitment by disseminating advertisements for study participation. [ABSTRACT FROM AUTHOR]

Background: Involving patients and citizens in health care decision‐making is considered increasingly important in Germany. Participatory structures have been implemented, especially in rehabilitative care. However, it is unknown whether and to what extent German patients and citizens want to participate in decisions that exceed their own medical treatment. Objective: This study aimed to survey participation preferences and associated factors of health service users in decisions regarding rehabilitative care at micro, meso and macro levels. Methods: A questionnaire was sent to 3872 former rehabilitants. We collected participation preferences using the Control Preference Scale or an adapted form. Possible influencing factors were examined using logistic regression models. Results: The response rate was 5.7% (n = 217). At all decision‐making levels, joint decision‐making was preferred. At the macro level, preferences for actively participating were the highest. Preferences were significantly interrelated between decision‐making levels. At the micro level, an orthopaedic indication significantly decreased the desire for participation compared to psychosomatic indications (odds ratio = 0.44, p =.019). Discussion: Participants wanted to be equally involved in decision‐making as experts. Higher preferences for active participation at the macro level might be due to dissatisfaction with the current health care organisation and lack of trust in politicians. Compared to the general public, our study sample was older (73.3% between 50 and 69 years) and more often chronically ill—factors associated with increased participation preferences in the literature. Conclusion: Contrary to the identified preferences, participation opportunities in the German health care system are rare. Further research on participation preferences and structures that enable meaningful involvement are needed. [ABSTRACT FROM AUTHOR]

Background: Understanding peoples' evaluations of their health care is important to ensure appropriate health‐care services. Objectives: To understand what factors influence peoples' satisfaction with care and how interpersonal trust is established between doctors and cancer patients in Germany. Design: A narrative interview study that included women with a diagnosis of breast cancer and men with a diagnosis of prostate cancer. A question‐focused analysis was conducted. Setting and participants: Interviewees were sought across Germany through self‐help organizations, clinics, rehabilitation facilities, physicians and other health‐care professionals, in order to develop modules on experiencing cancer for the website krankheitserfahrungen.de (illness experiences.de). Results: Satisfaction was related to the perception of having a knowledgeable and trusted physician. Trust was developed through particular interactions in which 'medical expertise' and 'humaneness' were enacted by physicians. Humaneness represents the ability of physicians to personalize medical expertise and thereby to convey working in the individual's best interest and to treat the patient as an individual and unique human being. This was fostered through contextual and relational factors including among others setting, time, information transfer, respect, availability, profoundness, sensitivity and understanding. Conclusion: It was the ability to make oneself known to and know the patient in particular ways that allowed for satisfying care experiences by establishing interpersonal trust. This suggests the importance of conceptualizing the doctor‐patient relationship as a fundamentally reciprocal human interaction of caregiving and care‐receiving. At the core of the satisfying care experiences lies a doctor‐patient relationship with a profoundly humane quality. [ABSTRACT FROM AUTHOR]

Objective: To participate in shared decision making (SDM), patients need to understand their options and develop trust in their own decision‐making abilities. Two experiments investigated the potential of decision aids (DAs) in preparing patients for SDM by raising awareness of preference‐sensitivity (Study 1) and showing possible personal motives for decision making (Study 2) in addition to providing information about the treatment options. Methods: Participants (Study 1: N = 117; Study 2: N = 217) were put into two scenarios (Study 1: cruciate ligament rupture; Study 2: contraception), watched a consultation video and were randomized into one of three groups where they received additional information in the form of (a) narrative patient testimonials; (b) non‐narrative decision strategies; and (c) an unrelated text (control group). Results: Participants who viewed the patient testimonials or decision strategies felt better prepared for a decision (Study 1: P <.001, ηP2 = 0.43; Study 2: P <.001, ηP2 = 0.57) and evaluated the decision‐making process more positively (Study 2: P <.001, ηP2 = 0.13) than participants in the control condition. Decision certainty (Study 1: P <.001, ηP2 = 0.05) and satisfaction (Study 1: P <.001, ηP2 = 0.11; Study 2: P =.003, d = 0.29) were higher across all conditions after watching the consultation video, and certainty and satisfaction were lower in the control condition (Study 2: P <.001, ηP2 = 0.05). Discussion: Decision aids that explain preference‐sensitivity and personal motives can be beneficial for improving people's feelings of being prepared and their perception of the decision‐making process. To reach decision certainty and satisfaction, being well informed of one's options is particularly relevant. We discuss the implications of our findings for future research and the design of DAs. [ABSTRACT FROM AUTHOR]

Objective Patients making treatment decisions require understandable evidence-based information. However, evidence on graphical presentation of benefits and side-effects of medical treatments is not conclusive. The study evaluated a new space-saving format, CLARIFIG (clarifying risk figures), aiming to facilitate accuracy of comprehension. Methods CLARIFIG displays groups of patients with and without treatment benefits as coloured sectors of a proportional bar graph representing in total 100 patients. Supplementary icons indicate the corresponding group's actual condition. The study used an application showing effects of immunotherapy intended to slow disease progression in multiple sclerosis ( MS). In a four-arm web-based randomized controlled trial, CLARIFIG was compared to the reference standard, multifigure pictographs ( MFP), regarding comprehension (primary outcome) and processing time. Both formats were presented as static and animated versions. People with MS were recruited through the website of the German MS society. Results Six hundred and eighty-two patients were randomized and analysed for the primary end point. There were no differences in comprehension rates ( MFPstatic=46%, CLARIFIGstatic=44%; P=.59; MFPanimated=23%, CLARIFIGanimated=30%; P=.134). Processing time for CLARIFIG was shorter only in the animated version ( MFPstatic=162 seconds, CLARIFIGstatic=155 seconds; P=.653; MFPanimated=286 seconds, CLARIFIGanimated=189 seconds; P≤.001). However, both animated versions caused more wrong answers and longer processing time than static presentation ( MFPstatic vs animated: P≤.001/.001, CLARIFIGstatic vs animated: P=.027/.017). Conclusion Comprehension of the new format is comparable to MFP. CLARIFIG has the potential to simplify presentation in more complex contexts such as comparison of several treatment options in patient decision aids, but further studies are needed. [ABSTRACT FROM AUTHOR]

Background The importance of patient participation and involvement is now widely acknowledged; in the past, few systematic health-care institution policies existed to establish sustainable co-operation. In 2004, in Germany, the initiative 'Self-Help Friendliness ( SHF) and Patient-Centeredness in Health Care' was launched to establish and implement quality criteria related to collaboration with patient groups. Objectives The objective of this study was to describe (i) how patients were involved in the development of SHF by summarizing a number of studies and (ii) a new survey on the importance and feasibility of SHF. Setting and participants In a series of participative studies, SHF was shaped, tested and implemented in 40 health-care institutions in Germany. Representatives from 157 self-help groups ( SHGs), 50 self-help organizations and 17 self-help clearing houses were actively involved. The second objective was reached through a survey of 74 of the 115 member associations of the biggest self-help umbrella organization at federal level (response rate: 64 %). Results Patient involvement included the following: identification of the needs and wishes of SHGs regarding co-operation, their involvement in the definition of quality criteria of co-operation, having a crucial role during the implementation of SHF and accrediting health-care institutions as self-help friendly. The ten criteria in total were positively valued and perceived as moderately practicable. Conclusions Through the intensive involvement of self-help representatives, it was feasible to develop SHF as a systematic approach to closer collaboration of professionals and SHGs. Some challenges have to be taken into account involving patients and the limitations of our empirical study. [ABSTRACT FROM AUTHOR]

Objective To examine the psychometric properties of the German version of the 'observing patient involvement' scale (OPTION) by analysing video recordings of primary care consultations dealing with counselling in cardiovascular prevention. Design Cross-sectional assessment of physician-patient interaction by two rater pairs and two experts in shared decision making (SDM). Setting Primary care. Participants Fifteen general practitioners provided 40 videographed consultations. Measurements Video ratings using the OPTION instrument. Results Mean differences on item level between the four raters were quite large. Most items were skewed towards minimal levels of shared decision making. Measures of inter-rater association showed low to moderate associations on item level and high associations on total score level. Cronbach-α of the whole scale based on the data of all four raters is 0.90 and therefore on a high level. An oblique factor analysis revealed two factors, but both factors were highly correlated so we can confirm a one-dimensional structure of the instrument. ROC analyses between the rater total scores and dichotomized expert ratings (SDM yes/no) revealed a good discriminability of the OPTION total score. Physicians with more expertise in shared decision making received higher OPTION ratings. Conclusions The German version of the OPTION scale is reliable at total score level. Some items need further revision in the direction of more concrete, observable behaviour. We were only able to perform a quasi-validation of the scale. Validity issues need further research efforts. [ABSTRACT FROM AUTHOR]