Search

Background people aged 80 and over frequently have diverse and complex health trajectories, which has been well studied. But their oral health is seldom included in care models. To realise comprehensive healthcare, both general and oral ambulatory (i.e. outpatient) healthcare need to be explored and conceptualised equally. Objective to elicit what matters to very old people regarding ambulatory health and oral healthcare. Methods interviews were conducted with non-institutionalised people aged 80 and over living in the area of Cologne, Germany. They were interviewed regarding their experiences of and views on ambulatory healthcare and oral healthcare care, respectively. Thematic analysis was performed to understand their motives and elicit relevant characteristics of desirable health services. Results from the interviews with 22 participants, 16 characteristics of good healthcare were described. These were generally similar for both general and oral healthcare and had a particular focus on patient-provider interaction and the organisation of care. However, regarding oral healthcare, the participants focused more strongly on the technical-medical skills of professionals and the perceptible treatment results and were more concerned about costs. It was noticeable that older people had the urge to differentiate themselves from 'others unnecessarily using health services'. They were unaware of possible future oral health deterioration and the resulting future needs. Conclusions characteristics of good health and oral healthcare from the perspective of older people should be incorporated to ensure patient-centredness in care models. Older patients, as well as healthcare providers, need to be sensitised to their oral health needs to realise comprehensive healthcare.

BackgroundPeople aged 80 and over frequently face complex chronic conditions and health limitations, including oral health problems, which are primarily addressed by ambulatory (i.e., outpatient) healthcare. This demographic development is expected to affect the provision of care. However, few studies have investigated physicians' and dentists' views across the various medical disciplines in non-institutional settings. This study investigated how healthcare providers perceive caring for very old people, and how they feel healthcare should be designed for this patient group. MethodsA qualitative online survey comprising nine open-ended items was conducted among physicians and dentists practicing in the ambulatory healthcare sector in North Rhine-Westphalia, Germany. Apart from child and adolescent healthcare, no medical specialties were excluded. The results were analysed using Kuckartz' approach of structuring qualitative content analysis. A descriptive codebook was developed first. After coding all the material, recurring patterns between the topics were investigated and compared between two groups of participants, physicians and dentists. ResultsN = 77 cases were included in the analysis, from which n = 21 originated from the field of ambulatory general practice care and internal medicine, n = 19 from specialties (e.g., neurology, urology), and n = 37 from dentistry. Caring for patients aged 80 and over was perceived as challenging because of complex health conditions and treatments such as multimorbidity and polypharmacy, and patients' cognitive and physical limitations. In characterizing good care in older age, both groups found individual care important, as well as empathetic interactions and good collaboration in networks of healthcare providers. Inadequate reimbursement and limited resources and time were the most important barriers to providing good care, while one of the most important facilitators was healthcare providers' attitude and motivation. Conclusi

Background Despite healthcare providers' goal of patient-centeredness, current models for the ambulatory (i.e., outpatient) care of older people have not as yet systematically incorporated their views. Moreover, there is no systematic overview of the preferable features of ambulatory care from the perspective of people aged 80 and over. Therefore, the aim of this study was to summarize their specific wishes and preferences regarding ambulatory care from qualitative studies. Methods The study was based on qualitative studies identified in a prior systematic review. Firstly, the findings of the qualitative studies were meta-summarized, following Sandelowski and Barroso. Secondly, a list of preferred features of care from the perspective of older people was derived from the included studies' findings through inductive coding. Thirdly, the review findings were appraised using the GRADE-CERQual tool to determine the level of confidence in the qualitative evidence. The appraisal comprised four domains: methodological limitations, coherence, data adequacy, and data relevance. Two reviewers independently evaluated every review finding in each domain. The final appraisals were discussed and ultimately summarized for the respective review finding (high, moderate, low, or very low confidence). Results The 22 qualitative studies included in the systematic review were mainly conducted in Northern and Western Europe (n = 15). In total, the studies comprised a sample of 330 participants (n = 5 to n = 42) with a mean or median age of 80 and over. From the studies' findings, 23 preferred features of ambulatory care were identified. Eight features concerned care relationships (e.g., Older people wish to receive personal attention), and 15 features concerned healthcare structures (e.g., Older want more time for their care). The findings emphasized that older people wish to build strong relationships with their care providers. The majority of the review findings reached a moderate or h

Purpose Healthcare systems are under pressure to improve their performance, while at the same time facing severe resource constraints, particularly workforce shortages. By applying resource-dependency-theory (RDT), we explore how healthcare organizations in different settings perceive pressure arising from uncertain access to resources and examine organizational strategies they deploy to secure resources. Design/methodology/approach A cross-sectional survey of key decision-makers in different healthcare settings in the metropolitan area of Cologne, Germany, on perceptions of pressure arising from the environment and respective strategies was conducted. For comparisons between settings radar charts, Kruskal-Wallis test and Fisher-Yates test were applied. Additionally, correlation analyses were conducted. Findings A sample of n = 237(13%) key informants participated and reported high pressure caused by bureaucracy, time constraints and recruiting qualified staff. Hospitals, inpatient and outpatient nursing care organizations felt most pressurized. As suggested by RDT, organizations in highly pressurized settings deployed the most vociferous strategies to secure resources, particularly in relation to personnel development. Originality/value This study is one of the few studies that focuses on the environment's impact on healthcare organizations across a variety of settings. RDT is a helpful theoretical foundation for understanding the environment's impact on organizational strategies. The substantial variations found between healthcare settings indicate that those settings potentially require specific strategies when seeking to address scarce resources and high demands. The results draw attention to the high level of pressure on healthcare organizations which presumably is passed down to managers, healthcare professionals, patients and relatives.

BackgroundLittle is known about the nature of patients' transitions between healthcare settings in the last year of life (LYOL) in Germany. Patients often experience transitions between different healthcare settings, such as hospitals and long-term facilities including nursing homes and hospices. The perspective of healthcare professionals can therefore provide information on transitions in the LYOL that are avoidable from a medical perspective. This study aims to explore factors influencing avoidable transitions across healthcare settings in the LYOL and to disclose how these could be prevented.MethodsTwo focus groups (n=11) and five individual interviews were conducted with healthcare professionals working in hospitals, hospices and nursing services from Cologne, Germany. They were asked to share their observations about avoidable transitions in the LYOL. The data collection continued until the point of information power was reached and were audio recorded and analysed using qualitative content analysis.ResultsFour factors for potentially avoidable transitions between care settings in the LYOL were identified: healthcare system, organization, healthcare professional, patient and relatives. According to the participants, the most relevant aspects that can aid in reducing unnecessary transitions include timely identification and communication of the LYOL; consideration of palliative care options; availability and accessibility of care services; and having a healthcare professional taking main responsibility for care planning.ConclusionsPreventing avoidable transitions by considering the multicomponent factors related to them not only immediately before death but also in the LYOL could help to provide more value-based care for patients and improving their quality of life.

Background Women with pathogenic BRCA1 and BRCA2 mutations possess a high risk of developing breast and ovarian cancer. They face difficult choices when considering preventive options. This study presents the development process of the first decision aids to support this complex decision-making process in the German healthcare system. Methods A six-step development process based on the International Patient Decision Aid Standards was used, including a systematic literature review of existing decision aids, a topical medical literature review, preparation of the decision aids, focus group discussions with women with BRCA1/2 mutations, internal and external reviews by clinical and self-help experts, and user tests. All reviews were followed by iterative revisions. Results No existing decision aids were transferable to the German setting. The medical research revealed a need to develop separate decision aids for women with BRCA1/2 mutations (A) without a history of cancer (previvors) and (B) with a history of unilateral breast cancer (survivors). The focus group discussions confirmed a high level of approval for the decision aids from both target groups. Additionally, previvors requested more information on risk-reducing breast surgery, risk-reducing removal of both ovaries and Fallopian tubes, and psychological aspects; survivors especially wanted more information on breast cancer on the affected side (e.g. biological parameters, treatment, and risk of recurrence). Conclusions In a structured process, two target-group-specific DAs for previvors/survivors with BRCA1/2 mutations were developed to support decision-making on risk-adapted preventive options. These patient-oriented tools offer an important addition to existing specialist medical care in Germany.

Health literacy plays a crucial role during pregnancy, as the mother's health behavior influences both her own health and that of her child. To the authors' best knowledge, no comprehensive overview on evidence of the health literacy of pregnant women and its impact on health outcomes during pregnancy exists. Therefore, this review aims to assess health literacy levels in pregnant women, whether health literacy is associated with outcomes during pregnancy and whether effective interventions exist to improve the health literacy of pregnant women. A systematic literature search was conducted in PubMed and EBSCO, resulting in 14 studies. The results show mixed levels of health literacy in pregnant women. Limited health literacy is associated with unhealthy behaviors during pregnancy. Mixed health literacy levels can be attributed to the recruitment site, the number of participants and the measurement tool used. Quality assessment reveals that the quality of the included studies is moderate to good. The review revealed that randomized controlled trials and interventions to improve health literacy in pregnant women are rare or do not exist. This is crucial in the light of the mixed health literacy levels found among pregnant women. Healthcare providers play a key role in this context, as pregnant women with limited health literacy rely on them as sources of health information.

Introduction Women with a pathogenic BRCA1/2 mutation have a markedly increased lifetime risk of developing breast and/or ovarian cancer. The current preventive treatment alternatives that are offered are an intensified breast cancer screening programme and risk-reducing operations. Before deciding on one option, medical and personal factors such as life situation and individual preferences must be weighed carefully. Decision aids are used internationally to support BRCA1/2 mutation carriers during their decision-making process. In this study these are analysed structurally for the first time and their applicability to the German context is examined. Material and Methods A systematic literature search in five electronic databases and a manual search were performed. The identified decision aids were evaluated with regard to formal criteria, medical content and quality. The qualitative assessment used the criteria of the International Patient Decision Aid Standards Collaboration (IPDASi v4.0), which examined various dimensions (e.g., information, probabilities, values). Results Twenty decision aids, which were published between 2003 and 2019 in Australia (n=4), the United Kingdom (n=3), Canada (n=2), the Netherlands (n=2) and the USA (n=9), were included. Nine focus on BRCA1/2 mutation carriers and eleven include other risk groups. Eighteen include risk-reducing operations as decision options, 14 list screening methods for breast and/or ovarian cancer, and 13 describe the possibility of pharmacological prevention by means of selective oestrogen receptor modulators or aromatase inhibitors. Nine of the 20 decision aids meet fundamental quality criteria (IPDASi v4.0 qualification criteria). Conclusion International decision aids can serve formally as a basis for a German decision aid for BRCA1/2 mutation carriers. Some of them differ markedly in content from the recommendations of German guidelines. Only a few achieve a high quality. Zusammenfassung Einleitung Frauen mit

Health literacy plays a crucial role during pregnancy, as the mother's health behavior influences both her own health and that of her child. To the authors' best knowledge, no comprehensive overview on evidence of the health literacy of pregnant women and its impact on health outcomes during pregnancy exists. Therefore, this review aims to assess health literacy levels in pregnant women, whether health literacy is associated with outcomes during pregnancy and whether effective interventions exist to improve the health literacy of pregnant women. A systematic literature search was conducted in PubMed and EBSCO, resulting in 14 studies. The results show mixed levels of health literacy in pregnant women. Limited health literacy is associated with unhealthy behaviors during pregnancy. Mixed health literacy levels can be attributed to the recruitment site, the number of participants and the measurement tool used. Quality assessment reveals that the quality of the included studies is moderate to good. The review revealed that randomized controlled trials and interventions to improve health literacy in pregnant women are rare or do not exist. This is crucial in the light of the mixed health literacy levels found among pregnant women. Healthcare providers play a key role in this context, as pregnant women with limited health literacy rely on them as sources of health information.

Introduction Women with a pathogenic BRCA1/2 mutation have a markedly increased lifetime risk of developing breast and/or ovarian cancer. The current preventive treatment alternatives that are offered are an intensified breast cancer screening programme and risk-reducing operations. Before deciding on one option, medical and personal factors such as life situation and individual preferences must be weighed carefully. Decision aids are used internationally to support BRCA1/2 mutation carriers during their decision-making process. In this study these are analysed structurally for the first time and their applicability to the German context is examined. Material and Methods A systematic literature search in five electronic databases and a manual search were performed. The identified decision aids were evaluated with regard to formal criteria, medical content and quality. The qualitative assessment used the criteria of the International Patient Decision Aid Standards Collaboration (IPDASi v4.0), which examined various dimensions (e.g., information, probabilities, values). Results Twenty decision aids, which were published between 2003 and 2019 in Australia (n=4), the United Kingdom (n=3), Canada (n=2), the Netherlands (n=2) and the USA (n=9), were included. Nine focus on BRCA1/2 mutation carriers and eleven include other risk groups. Eighteen include risk-reducing operations as decision options, 14 list screening methods for breast and/or ovarian cancer, and 13 describe the possibility of pharmacological prevention by means of selective oestrogen receptor modulators or aromatase inhibitors. Nine of the 20 decision aids meet fundamental quality criteria (IPDASi v4.0 qualification criteria). Conclusion International decision aids can serve formally as a basis for a German decision aid for BRCA1/2 mutation carriers. Some of them differ markedly in content from the recommendations of German guidelines. Only a few achieve a high quality. Zusammenfassung Einleitung Frauen mit

Purpose Healthcare systems are under pressure to improve their performance, while at the same time facing severe resource constraints, particularly workforce shortages. By applying resource-dependency-theory (RDT), we explore how healthcare organizations in different settings perceive pressure arising from uncertain access to resources and examine organizational strategies they deploy to secure resources. Design/methodology/approach A cross-sectional survey of key decision-makers in different healthcare settings in the metropolitan area of Cologne, Germany, on perceptions of pressure arising from the environment and respective strategies was conducted. For comparisons between settings radar charts, Kruskal-Wallis test and Fisher-Yates test were applied. Additionally, correlation analyses were conducted. Findings A sample of n = 237(13%) key informants participated and reported high pressure caused by bureaucracy, time constraints and recruiting qualified staff. Hospitals, inpatient and outpatient nursing care organizations felt most pressurized. As suggested by RDT, organizations in highly pressurized settings deployed the most vociferous strategies to secure resources, particularly in relation to personnel development. Originality/value This study is one of the few studies that focuses on the environment's impact on healthcare organizations across a variety of settings. RDT is a helpful theoretical foundation for understanding the environment's impact on organizational strategies. The substantial variations found between healthcare settings indicate that those settings potentially require specific strategies when seeking to address scarce resources and high demands. The results draw attention to the high level of pressure on healthcare organizations which presumably is passed down to managers, healthcare professionals, patients and relatives.

BackgroundLittle is known about the nature of patients' transitions between healthcare settings in the last year of life (LYOL) in Germany. Patients often experience transitions between different healthcare settings, such as hospitals and long-term facilities including nursing homes and hospices. The perspective of healthcare professionals can therefore provide information on transitions in the LYOL that are avoidable from a medical perspective. This study aims to explore factors influencing avoidable transitions across healthcare settings in the LYOL and to disclose how these could be prevented.MethodsTwo focus groups (n=11) and five individual interviews were conducted with healthcare professionals working in hospitals, hospices and nursing services from Cologne, Germany. They were asked to share their observations about avoidable transitions in the LYOL. The data collection continued until the point of information power was reached and were audio recorded and analysed using qualitative content analysis.ResultsFour factors for potentially avoidable transitions between care settings in the LYOL were identified: healthcare system, organization, healthcare professional, patient and relatives. According to the participants, the most relevant aspects that can aid in reducing unnecessary transitions include timely identification and communication of the LYOL; consideration of palliative care options; availability and accessibility of care services; and having a healthcare professional taking main responsibility for care planning.ConclusionsPreventing avoidable transitions by considering the multicomponent factors related to them not only immediately before death but also in the LYOL could help to provide more value-based care for patients and improving their quality of life.

Background Women with pathogenic BRCA1 and BRCA2 mutations possess a high risk of developing breast and ovarian cancer. They face difficult choices when considering preventive options. This study presents the development process of the first decision aids to support this complex decision-making process in the German healthcare system. Methods A six-step development process based on the International Patient Decision Aid Standards was used, including a systematic literature review of existing decision aids, a topical medical literature review, preparation of the decision aids, focus group discussions with women with BRCA1/2 mutations, internal and external reviews by clinical and self-help experts, and user tests. All reviews were followed by iterative revisions. Results No existing decision aids were transferable to the German setting. The medical research revealed a need to develop separate decision aids for women with BRCA1/2 mutations (A) without a history of cancer (previvors) and (B) with a history of unilateral breast cancer (survivors). The focus group discussions confirmed a high level of approval for the decision aids from both target groups. Additionally, previvors requested more information on risk-reducing breast surgery, risk-reducing removal of both ovaries and Fallopian tubes, and psychological aspects; survivors especially wanted more information on breast cancer on the affected side (e.g. biological parameters, treatment, and risk of recurrence). Conclusions In a structured process, two target-group-specific DAs for previvors/survivors with BRCA1/2 mutations were developed to support decision-making on risk-adapted preventive options. These patient-oriented tools offer an important addition to existing specialist medical care in Germany.

Introduction: Matching available mental health services to patients' preferences, as well as is possible, may increase patient satisfaction and help increase adherence to certain treatments. This study systematically reviewed discrete-choice experiments (DCEs) on patients' preferences for treatment of depressive and anxiety disorders and assessed the relative importance of outcome, process and cost attributes to improve the current and future treatment situations. Methods: A systematic literature review using PubMed, EMBASE and PsychInfo was conducted to retrieve all relevant DCEs published up to 15 April 2019, eliciting patient preferences for treatment of depressive and anxiety disorders. Data were extracted using an extraction sheet, and attributes were classified into outcome, process and cost attributes. The relative importance of each attribute category was then assessed, and studies were evaluated according to their reporting quality, using validated checklists. Results: A total of 11 studies were identified for qualitative analysis. All studies received an aggregate score of 4 on the five-point PREFS checklist (Purpose, Respondents, Explanation, Findings and Significance). Most attributes were outcome related (52%), followed by process (42%) and cost (6%) attributes. Comparing the attribute categories and summing up the relative importance weights for each category within the studies, process attributes were ranked as most important, followed by cost and outcome attributes. Conclusions: In this systematic review, heterogeneous results were observed regarding the inclusion and framing of different attributes across studies. Overall, patients considered process and cost attributes to be more important than outcome attributes. Outcomes and process are important for patients, and thus clinicians should be particularly aware of this and take patients' preferences into account, although the attribute importance may depend on chosen attributes and related levels.

Health and social care organizations are under pressure of organizing care around patients' needs and preferences while complying with regulatory frameworks and constraint resources. To implement patient-centered care in health and social care organizations successfully, particular organizational preconditions need to be considered. Findings on the implementation of patient-centered care and its preconditions are rare and insufficiently account for the organizational context to explain differences. This study examines the implementation status of patient-centered care in diverse health and social care organizations and analyzes the communication climate as a precondition of successful implementation. In a cross-sectional postal key informant survey, decision makers in the highest leading positions from six different types of health and social care organizations in Cologne, Germany, were surveyed using a paper-pencil questionnaire. Patient-centered care implementation was operationalized by three categories (principles, activities, and enablers) including 15 dimensions. Organizational communication climate was operationalized by aspects of open and constructive communication, cooperation, and inclusion. Out of 1790 contacted organizations, 237 participated. In the analyses, 215 complete datasets were included. Descriptive analyses, Kruskal-Wallis test, post hoc pair-wise test, and linear regression modeling were performed. Results show that the implementation status of patient-centered care was perceived as high but differed between the various types of organizations and in terms of patient-centered care categories. Organizational communication climate was significantly associated with the implementation of patient-centered care. Especially in organizations with a higher number of employees, strategies to create a positive communication climate are needed to create a precondition for patient-centered care.

Introduction: When making medical care more patient-centered, surveys on patients' and their relatives' experiences can be helpful in identifying opportunities for improvement. In cases where the targeted patients are unable to express their own perspective, for example, due to them being too young or suffering from severe impairments, proxies can serve as substitutes. Proxies are frequently used in care planning and consent. Nevertheless, it is unclear whether patients' assessments of how patient-centered their medical care is are similar to those of their proxies. This study aims to assess the level of consistency between patients' and their proxies' assessments using an adapted version of the Patient Assessment of Chronic Illness Care (PACIC) short form questionnaire. Methods: In a cross-sectional study, patients with coronary heart disease were recruited at cardiologists' offices, rehabilitation clinics and hospitals. Participants were surveyed with regard to the perceived level of patient-centeredness during their care using an adapted version of the German PACIC short form (PACIC-S11.1). Correlations in the assessments made by each patient and their respective proxy were analyzed. On the level of the patients group and the relatives group differences between mean ratings for each item were compared using paired t-tests. Results: In total, 74 pairs of patients and proxies submitted the completed questionnaire. On the level of the individual patient/proxy pairs, no correlation, or significant but low correlation, was found between the ratings. On the group level, patients' and their proxies' item ratings were similar in the interpretation of averages, but still demonstrated statistically significant differences. Overall, patients rated their care as more patient-centered than their proxies did. Conclusion: The study shows that, on the individual level, proxies' ratings do not necessarily reflect the patients' assessment of PCC. On the group level, the assessment

Background: Providing patient-centered care (PCC) during the last year of life (LYOL) can be challenging due to the complexity of the patients' medical, social and psychological needs, especially in case of chronic illnesses. Assessing PCC can be helpful in identifying areas for improvements. Since not all patients can be surveyed, a questionnaire for proxy informants was developed in order to retrospectively assess patient-centeredness in care during the whole LYOL. This study aimed to evaluate the feasibility and validity of an adapted version of the German Patient Assessment of Chronic Illness Care (PACIC) for surveying bereaved persons in order to assess PCC during the decedents' LYOL. Methods: The German PACIC short form (11 items) was adapted to a nine-item version for surveying bereaved persons on the decedent's LYOL (PACIC-S9-Proxy). Items were rated on a five-point Likert scale. The PACIC adaptation and validation was part of a cross-sectional survey in the region of Cologne. Participants were recruited through self-selection and active recruitment by practice partners. Sociodemographic characteristics and missing data were analyzed using descriptive statistics. An exploratory factor analysis was conducted in order to assess the structure of the PACIC-S9-Proxy. Internal consistency was estimated using Cronbach's alpha. Results: Of the 351 informants who participated in the survey, 230 (65.52%) considered their decedent to have suffered from chronic illness prior to death. 193 of these informants (83.91%) completed >= 5 items of the questionnaire and were included in the analysis. The least answered item was item (74.09%) was item 4 (encouragement to group & classes for coping). The most frequently answered item (96.89%) was item 2 (satisfaction with care organization). Informants rated the item Given a copy of their treatment plan highest (mean 3.96), whereas encouragement to get to a specific group or class to cope with the condition (mean 1.74) was rated

Introduction: Matching available mental health services to patients' preferences, as well as is possible, may increase patient satisfaction and help increase adherence to certain treatments. This study systematically reviewed discrete-choice experiments (DCEs) on patients' preferences for treatment of depressive and anxiety disorders and assessed the relative importance of outcome, process and cost attributes to improve the current and future treatment situations. Methods: A systematic literature review using PubMed, EMBASE and PsychInfo was conducted to retrieve all relevant DCEs published up to 15 April 2019, eliciting patient preferences for treatment of depressive and anxiety disorders. Data were extracted using an extraction sheet, and attributes were classified into outcome, process and cost attributes. The relative importance of each attribute category was then assessed, and studies were evaluated according to their reporting quality, using validated checklists. Results: A total of 11 studies were identified for qualitative analysis. All studies received an aggregate score of 4 on the five-point PREFS checklist (Purpose, Respondents, Explanation, Findings and Significance). Most attributes were outcome related (52%), followed by process (42%) and cost (6%) attributes. Comparing the attribute categories and summing up the relative importance weights for each category within the studies, process attributes were ranked as most important, followed by cost and outcome attributes. Conclusions: In this systematic review, heterogeneous results were observed regarding the inclusion and framing of different attributes across studies. Overall, patients considered process and cost attributes to be more important than outcome attributes. Outcomes and process are important for patients, and thus clinicians should be particularly aware of this and take patients' preferences into account, although the attribute importance may depend on chosen attributes and related levels.

Health and social care organizations are under pressure of organizing care around patients' needs and preferences while complying with regulatory frameworks and constraint resources. To implement patient-centered care in health and social care organizations successfully, particular organizational preconditions need to be considered. Findings on the implementation of patient-centered care and its preconditions are rare and insufficiently account for the organizational context to explain differences. This study examines the implementation status of patient-centered care in diverse health and social care organizations and analyzes the communication climate as a precondition of successful implementation. In a cross-sectional postal key informant survey, decision makers in the highest leading positions from six different types of health and social care organizations in Cologne, Germany, were surveyed using a paper-pencil questionnaire. Patient-centered care implementation was operationalized by three categories (principles, activities, and enablers) including 15 dimensions. Organizational communication climate was operationalized by aspects of open and constructive communication, cooperation, and inclusion. Out of 1790 contacted organizations, 237 participated. In the analyses, 215 complete datasets were included. Descriptive analyses, Kruskal-Wallis test, post hoc pair-wise test, and linear regression modeling were performed. Results show that the implementation status of patient-centered care was perceived as high but differed between the various types of organizations and in terms of patient-centered care categories. Organizational communication climate was significantly associated with the implementation of patient-centered care. Especially in organizations with a higher number of employees, strategies to create a positive communication climate are needed to create a precondition for patient-centered care.

Introduction: When making medical care more patient-centered, surveys on patients' and their relatives' experiences can be helpful in identifying opportunities for improvement. In cases where the targeted patients are unable to express their own perspective, for example, due to them being too young or suffering from severe impairments, proxies can serve as substitutes. Proxies are frequently used in care planning and consent. Nevertheless, it is unclear whether patients' assessments of how patient-centered their medical care is are similar to those of their proxies. This study aims to assess the level of consistency between patients' and their proxies' assessments using an adapted version of the Patient Assessment of Chronic Illness Care (PACIC) short form questionnaire. Methods: In a cross-sectional study, patients with coronary heart disease were recruited at cardiologists' offices, rehabilitation clinics and hospitals. Participants were surveyed with regard to the perceived level of patient-centeredness during their care using an adapted version of the German PACIC short form (PACIC-S11.1). Correlations in the assessments made by each patient and their respective proxy were analyzed. On the level of the patients group and the relatives group differences between mean ratings for each item were compared using paired t-tests. Results: In total, 74 pairs of patients and proxies submitted the completed questionnaire. On the level of the individual patient/proxy pairs, no correlation, or significant but low correlation, was found between the ratings. On the group level, patients' and their proxies' item ratings were similar in the interpretation of averages, but still demonstrated statistically significant differences. Overall, patients rated their care as more patient-centered than their proxies did. Conclusion: The study shows that, on the individual level, proxies' ratings do not necessarily reflect the patients' assessment of PCC. On the group level, the assessment

Background: Providing patient-centered care (PCC) during the last year of life (LYOL) can be challenging due to the complexity of the patients' medical, social and psychological needs, especially in case of chronic illnesses. Assessing PCC can be helpful in identifying areas for improvements. Since not all patients can be surveyed, a questionnaire for proxy informants was developed in order to retrospectively assess patient-centeredness in care during the whole LYOL. This study aimed to evaluate the feasibility and validity of an adapted version of the German Patient Assessment of Chronic Illness Care (PACIC) for surveying bereaved persons in order to assess PCC during the decedents' LYOL. Methods: The German PACIC short form (11 items) was adapted to a nine-item version for surveying bereaved persons on the decedent's LYOL (PACIC-S9-Proxy). Items were rated on a five-point Likert scale. The PACIC adaptation and validation was part of a cross-sectional survey in the region of Cologne. Participants were recruited through self-selection and active recruitment by practice partners. Sociodemographic characteristics and missing data were analyzed using descriptive statistics. An exploratory factor analysis was conducted in order to assess the structure of the PACIC-S9-Proxy. Internal consistency was estimated using Cronbach's alpha. Results: Of the 351 informants who participated in the survey, 230 (65.52%) considered their decedent to have suffered from chronic illness prior to death. 193 of these informants (83.91%) completed >= 5 items of the questionnaire and were included in the analysis. The least answered item was item (74.09%) was item 4 (encouragement to group & classes for coping). The most frequently answered item (96.89%) was item 2 (satisfaction with care organization). Informants rated the item Given a copy of their treatment plan highest (mean 3.96), whereas encouragement to get to a specific group or class to cope with the condition (mean 1.74) was rated

Objectives Health and social care systems, organisations and providers are under pressure to organise care around patients' needs with constrained resources. To implement patient-centred care (PCC) successfully, barriers must be addressed. Up to now, there has been a lack of comprehensive investigations on possible determinants of PCC across various health and social care organisations (HSCOs). Our qualitative study examines determinants of PCC implementation from decision makers' perspectives across diverse HSCOs. Design Qualitative study of n=24 participants in n=20 semistructured face-to-face interviews conducted from August 2017 to May 2018. Setting and participants Decision makers were recruited from multiple HSCOs in the region of the city of Cologne, Germany, based on a maximum variation sampling strategy varying by HSCOs types. Outcomes The qualitative interviews were analysed using an inductive and deductive approach according to qualitative content analysis. The Consolidated Framework for Implementation Research was used to conceptualise determinants of PCC. Results Decision makers identified similar determinants facilitating or obstructing the implementation of PCC in their organisational contexts. Several determinants at the HSCO's inner setting and the individual level (eg, communication among staff and well-being of employees) were identified as crucial to overcome constrained financial, human and material resources in order to deliver PCC. Conclusions The results can help to foster the implementation of PCC in various HSCOs contexts. We identified possible starting points for initiating the tailoring of interventions and implementation strategies and the redesign of HSCOs towards more patient-centredness.

Background: Female BRCA1 and BRCA2 mutation carriers have an increased lifetime risk of developing breast and/or ovarian cancer. Hence, they face the difficult decision of choosing a preventive strategy such as risk-reducing surgeries or intensified breast screening. To help these women during their decision process, several patient decision aids (DA) were developed and evaluated in the last 15years. Until now, there is no conclusive evidence on the effectiveness of these DA. This study aims 1) to provide the first systematic literature review about DA addressing preventive strategy decisions for female BRCA1 and BRCA2 mutation carriers, 2) to analyze the quality of the existing evidence, 3) to evaluate the effects of DA on decision and information related outcomes, on the actual choice for preventive measure and on health outcomes. Methods: A systematic literature review was conducted using six electronic databases (inclusion criteria: DA addressing preventive strategies, female BRCA1 and BRCA2 mutation carriers, 18 to 75years, knowledge of test result). The quality of the included randomized controlled trials (RCT) was evaluated with the Cochrane Collaboration's risk of bias tool. The quality of included one-group pretest-posttest design studies was evaluated with the ROBINS-I tool. Outcomes of included studies were extracted and qualitatively summarized. Results: A total of 2093 records were identified. Six studies were included for further evaluation (5 RCT, 1 one-group pretest-posttest design study). One RCT was formally included, but data presentation did not allow for further analyses. The risk of bias was high in three RCT and unclear in one RCT. The risk of bias in the one-group pretest-posttest study was serious. The outcome assessment showed that the main advantages of DA are linked to the actual decision process: Female BRCA1 and BRCA2 mutation carriers using a DA had less decisional conflict, were more likely to reach a decision and were more satisfied

Objectives Health and social care systems, organisations and providers are under pressure to organise care around patients' needs with constrained resources. To implement patient-centred care (PCC) successfully, barriers must be addressed. Up to now, there has been a lack of comprehensive investigations on possible determinants of PCC across various health and social care organisations (HSCOs). Our qualitative study examines determinants of PCC implementation from decision makers' perspectives across diverse HSCOs. Design Qualitative study of n=24 participants in n=20 semistructured face-to-face interviews conducted from August 2017 to May 2018. Setting and participants Decision makers were recruited from multiple HSCOs in the region of the city of Cologne, Germany, based on a maximum variation sampling strategy varying by HSCOs types. Outcomes The qualitative interviews were analysed using an inductive and deductive approach according to qualitative content analysis. The Consolidated Framework for Implementation Research was used to conceptualise determinants of PCC. Results Decision makers identified similar determinants facilitating or obstructing the implementation of PCC in their organisational contexts. Several determinants at the HSCO's inner setting and the individual level (eg, communication among staff and well-being of employees) were identified as crucial to overcome constrained financial, human and material resources in order to deliver PCC. Conclusions The results can help to foster the implementation of PCC in various HSCOs contexts. We identified possible starting points for initiating the tailoring of interventions and implementation strategies and the redesign of HSCOs towards more patient-centredness.

Background: Female BRCA1 and BRCA2 mutation carriers have an increased lifetime risk of developing breast and/or ovarian cancer. Hence, they face the difficult decision of choosing a preventive strategy such as risk-reducing surgeries or intensified breast screening. To help these women during their decision process, several patient decision aids (DA) were developed and evaluated in the last 15years. Until now, there is no conclusive evidence on the effectiveness of these DA. This study aims 1) to provide the first systematic literature review about DA addressing preventive strategy decisions for female BRCA1 and BRCA2 mutation carriers, 2) to analyze the quality of the existing evidence, 3) to evaluate the effects of DA on decision and information related outcomes, on the actual choice for preventive measure and on health outcomes. Methods: A systematic literature review was conducted using six electronic databases (inclusion criteria: DA addressing preventive strategies, female BRCA1 and BRCA2 mutation carriers, 18 to 75years, knowledge of test result). The quality of the included randomized controlled trials (RCT) was evaluated with the Cochrane Collaboration's risk of bias tool. The quality of included one-group pretest-posttest design studies was evaluated with the ROBINS-I tool. Outcomes of included studies were extracted and qualitatively summarized. Results: A total of 2093 records were identified. Six studies were included for further evaluation (5 RCT, 1 one-group pretest-posttest design study). One RCT was formally included, but data presentation did not allow for further analyses. The risk of bias was high in three RCT and unclear in one RCT. The risk of bias in the one-group pretest-posttest study was serious. The outcome assessment showed that the main advantages of DA are linked to the actual decision process: Female BRCA1 and BRCA2 mutation carriers using a DA had less decisional conflict, were more likely to reach a decision and were more satisfied

Background and purpose: The German Institute for Quality and Efficiency in Health Care (IQWiG) previously tested two preference elicitation methods in pilot projects and regarded them as generally feasible for prioritizing outcome-specific results of benefit assessment. The present study aimed to investigate the feasibility of completing a discrete choice experiment (DCE) within 3 months and to determine the relative importance of attributes of periodontal disease and its treatment. Patients and methods: This preference elicitation was conducted alongside the IQWiG benefit assessment of systematic treatments of periodontal diseases. Attributes were defined based on the benefit assessment, literature review, and patients' and periodontologists' interviews. The DCE survey was completed by patients with a history of periodontal disease. Preferences were elicited for the attributes tooth loss within next 10 years, own costs for treatment, follow-up visits, re-treatment, complaints and symptoms, and frequency of follow-up visits. Patients completed a self-administered questionnaire including 12 choice tasks. Data were analyzed using a random parameters logit model. The relative attribute importance was calculated based on level ranges. Results: Within 3 months, survey development, data collection among 267 patients, data analysis, and provision of a study report could be completed. The analysis showed that tooth loss (score 0.73) was the most important attribute in patients' decisions, followed by complaints and symptoms (0.22), frequency of follow-up visits (0.02), and costs (0.03) (relative importance scores summing up to 1). Conclusion: A preference analysis performing a DCE can be generally feasible within 3 months; however, a good research infrastructure and access to patients is required. Outcomes used in benefit assessments might need to be adapted to be used in preference analyses.

Introduction Health and social care systems are under pressure to organise care around patients' needs with constrained resources. Several studies reveal that care is constantly challenged by balancing economic requirements against individual patients' preferences and needs. Therefore, value-based health and social care aims to facilitate patient-centredness while taking the resources spent into consideration. The OrgValue project examines the implementation of patient-centredness while considering the health and social care organisations' resource orientation in the model region of the city of Cologne, Germany. Methods and analysis First, the implementation status of patient-centredness as well as its facilitators and barriers-also in terms of resource orientation-will be assessed through face-to-face interviews with decision-makers (at least n=18) from health and social care organisations (HSCOs) in Cologne. Second, patients' understanding of patient-centredness and their preferences and needs will be revealed by conducting face-to-face interviews (at least n=15). Third, the qualitative results will provide the basis for a quantitative survey of decision-makers from all HSCOs in Cologne, which will include questions on patient-centredness, resource orientation and determinants of implementation. Fourth, qualitative interviews with decision-makers from different types of HSCOs will be conducted to develop a uniform measurement instrument on the cost and service structure of HSCOs. Ethics and dissemination For all collected data, the relevant data protection regulations will be adhered to. Consultation and a positive vote from the ethics committee of the Medical Faculty of the University of Cologne have been obtained. All personal identifiers (eg, name, date of birth) will be pseudonymised. Dissemination strategies include a feedback report as well as research and development workshops for the organisations with the aim of initiating organisational learning and orga

Vera Vennedey,1 Sonja HM Derman,2 Mickaël Hiligsmann,3 Daniele Civello,1 Anja Schwalm,4 Astrid Seidl,4 Fülöp Scheibler,5 Stephanie Stock,1 Michael J Noack,2 Marion Danner1,5 1Institute for Health Economics and Clinical Epidemiology, University Hospital Cologne (AöR), Cologne, Germany; 2Department of Operative Dentistry and Periodontology, University Hospital Cologne (AöR), Cologne, Germany; 3Department of Health Services Research, CAPHRI Care and Public Health Research Institute, Maastricht University, Maastricht, the Netherlands; 4Department of Health Care and Health Economics, Institute for Quality and Efficiency in Health Care (IQWiG), Cologne, Germany; 5Department of Paediatrics, University Hospital Schleswig-Holstein (UKSH), Kiel, Germany Background and purpose: The German Institute for Quality and Efficiency in Health Care (IQWiG) previously tested two preference elicitation methods in pilot projects and regarded them as generally feasible for prioritizing outcome-specific results of benefit assessment. The present study aimed to investigate the feasibility of completing a discrete choice experiment (DCE) within 3 months and to determine the relative importance of attributes of periodontal disease and its treatment.Patients and methods: This preference elicitation was conducted alongside the IQWiG benefit assessment of systematic treatments of periodontal diseases. Attributes were defined based on the benefit assessment, literature review, and patients’ and periodontologists’ interviews. The DCE survey was completed by patients with a history of periodontal disease. Preferences were elicited for the attributes “tooth loss within next 10 years”, “own costs for treatment, follow-up visits, re-treatment”, “complaints and symptoms”, and “frequency of follow-up visits”. Patients completed a self-administered questionnaire

Background and purpose: The German Institute for Quality and Efficiency in Health Care (IQWiG) previously tested two preference elicitation methods in pilot projects and regarded them as generally feasible for prioritizing outcome-specific results of benefit assessment. The present study aimed to investigate the feasibility of completing a discrete choice experiment (DCE) within 3 months and to determine the relative importance of attributes of periodontal disease and its treatment. Patients and methods: This preference elicitation was conducted alongside the IQWiG benefit assessment of systematic treatments of periodontal diseases. Attributes were defined based on the benefit assessment, literature review, and patients' and periodontologists' interviews. The DCE survey was completed by patients with a history of periodontal disease. Preferences were elicited for the attributes tooth loss within next 10 years, own costs for treatment, follow-up visits, re-treatment, complaints and symptoms, and frequency of follow-up visits. Patients completed a self-administered questionnaire including 12 choice tasks. Data were analyzed using a random parameters logit model. The relative attribute importance was calculated based on level ranges. Results: Within 3 months, survey development, data collection among 267 patients, data analysis, and provision of a study report could be completed. The analysis showed that tooth loss (score 0.73) was the most important attribute in patients' decisions, followed by complaints and symptoms (0.22), frequency of follow-up visits (0.02), and costs (0.03) (relative importance scores summing up to 1). Conclusion: A preference analysis performing a DCE can be generally feasible within 3 months; however, a good research infrastructure and access to patients is required. Outcomes used in benefit assessments might need to be adapted to be used in preference analyses.

Introduction Health and social care systems are under pressure to organise care around patients' needs with constrained resources. Several studies reveal that care is constantly challenged by balancing economic requirements against individual patients' preferences and needs. Therefore, value-based health and social care aims to facilitate patient-centredness while taking the resources spent into consideration. The OrgValue project examines the implementation of patient-centredness while considering the health and social care organisations' resource orientation in the model region of the city of Cologne, Germany. Methods and analysis First, the implementation status of patient-centredness as well as its facilitators and barriers-also in terms of resource orientation-will be assessed through face-to-face interviews with decision-makers (at least n=18) from health and social care organisations (HSCOs) in Cologne. Second, patients' understanding of patient-centredness and their preferences and needs will be revealed by conducting face-to-face interviews (at least n=15). Third, the qualitative results will provide the basis for a quantitative survey of decision-makers from all HSCOs in Cologne, which will include questions on patient-centredness, resource orientation and determinants of implementation. Fourth, qualitative interviews with decision-makers from different types of HSCOs will be conducted to develop a uniform measurement instrument on the cost and service structure of HSCOs. Ethics and dissemination For all collected data, the relevant data protection regulations will be adhered to. Consultation and a positive vote from the ethics committee of the Medical Faculty of the University of Cologne have been obtained. All personal identifiers (eg, name, date of birth) will be pseudonymised. Dissemination strategies include a feedback report as well as research and development workshops for the organisations with the aim of initiating organisational learning and orga

Introduction Health and social care systems are under pressure to organise care around patients’ needs with constrained resources. Several studies reveal that care is constantly challenged by balancing economic requirements against individual patients’ preferences and needs. Therefore, value-based health and social care aims to facilitate patient-centredness while taking the resources spent into consideration. The OrgValue project examines the implementation of patientcentredness while considering the health and social care organisations’ resource orientation in the model region of the city of Cologne, Germany. Methods and analysis First, the implementation status of patient-centredness as well as its facilitators and barriers—also in terms of resource orientation— will be assessed through face-to-face interviews with decision-makers (at least n=18) from health and social care organisations (HSCOs) in Cologne. Second, patients’ understanding of patient-centredness and their preferences and needs will be revealed by conducting face-to-face interviews (at least n=15). Third, the qualitative results will provide the basis for a quantitative survey of decision-makers from all HSCOs in Cologne, which will include questions on patient-centredness, resource orientation and determinants of implementation. Fourth, qualitative interviews with decision-makers from different types of HSCOs will be conducted to develop a uniform measurement instrument on the cost and service structure of HSCOs. Ethics and dissemination For all collected data, the relevant data protection regulations will be adhered to. Consultation and a positive vote from the ethics committee of the Medical Faculty of the University of Cologne have been obtained. All personal identifiers (eg, name, date of birth) will be pseudonymised. Dissemination strategies include a feedback report as well as research and development workshops for the organisations with the aim of initiating organisational learning and orga

Introduction Health and social care systems are under pressure to organise care around patients’ needs with constrained resources. Several studies reveal that care is constantly challenged by balancing economic requirements against individual patients’ preferences and needs. Therefore, value-based health and social care aims to facilitate patient-centredness while taking the resources spent into consideration. The OrgValue project examines the implementation of patientcentredness while considering the health and social care organisations’ resource orientation in the model region of the city of Cologne, Germany. Methods and analysis First, the implementation status of patient-centredness as well as its facilitators and barriers—also in terms of resource orientation— will be assessed through face-to-face interviews with decision-makers (at least n=18) from health and social care organisations (HSCOs) in Cologne. Second, patients’ understanding of patient-centredness and their preferences and needs will be revealed by conducting face-to-face interviews (at least n=15). Third, the qualitative results will provide the basis for a quantitative survey of decision-makers from all HSCOs in Cologne, which will include questions on patient-centredness, resource orientation and determinants of implementation. Fourth, qualitative interviews with decision-makers from different types of HSCOs will be conducted to develop a uniform measurement instrument on the cost and service structure of HSCOs. Ethics and dissemination For all collected data, the relevant data protection regulations will be adhered to. Consultation and a positive vote from the ethics committee of the Medical Faculty of the University of Cologne have been obtained. All personal identifiers (eg, name, date of birth) will be pseudonymised. Dissemination strategies include a feedback report as well as research and development workshops for the organisations with the aim of initiating organisational learning and orga

This review summarizes evidence regarding the effects of patient education in osteoporosis prevention and treatment. The included studies reveal mixed results on a variety of endpoints. Methodological improvement of future RCTs (e.g. with regard to randomization and duration of follow-up) might yield more conclusive evidence on the effects of patient education in osteoporosis Introduction This review aims to evaluate the effects of patient education on osteoporosis prevention and treatment results. Methods Multiple databases including PubMed and Embase were searched until February 2016. Randomised controlled trials (RCTs) were eligible if they included adults diagnosed with or at risk of osteoporosis and assessed patient education interventions (group-or individual-based). Outcomes regarding osteoporosis management including initiation of and adherence to pharmacological therapy, physical activity, calcium and vitamin D intake, changes in smoking behaviour, fractures, quality of life (QoL) and osteoporosis knowledge were evaluated. The Cochrane collaboration's tool for assessing the risk of bias was used to assess the internal validity of included trials. Results Fifteen articles (13 different studies) published between 2001 and 2013 were included (group-based education = 7, individual-based education = 5, both = 1). The general risk of bias was considered as moderate to high. The effects on 'bone mineral density (BMD) testing and/or pharmacological therapy' (composite endpoint), 'calcium intake' and 'vitamin D intake' as well as 'osteoporosis knowledge' were statistically significant in favour of the intervention in >= 50% of the studies analysing these outcomes. Differences between the intervention and the control group regarding 'pharmacological therapy', 'medication adherence', 'physical activity', 'fractures' and 'QoL' were found to be statistically significant in <50% of the trials. Conclusions This review indicates that it is still unclear whether patient edu

Introduction As several studies have been conducted to elicit patients' preferences for cancer treatment, it is important to provide an overview and synthesis of these studies. This study aimed to systematically review discrete choice experiments (DCEs) about patients' preferences for cancer treatment and assessed the relative importance of outcome, process and cost attributes. Methods A systematic literature review was conducted using PubMed and EMBASE to identify all DCEs investigating patients' preferences for cancer treatment between January 2010 and April 2016. Data were extracted using a predefined extraction sheet, and a reporting quality assessment was applied to all studies. Attributes were classified into outcome, process and cost attributes, and their relative importance was assessed. Results A total of 28 DCEs were identified. More than half of the studies (56%) received an aggregate score lower than 4 on the PREFS ( Purpose, Respondents, Explanation, Findings, Significance) 5-point scale. Most attributes were related to outcome (70%), followed by process (25%) and cost (5%). Outcome attributes were most often significant ( 81%), followed by process (73%) and cost (67%). The relative importance of outcome attributes was ranked highest in 82% of the cases where it was included, followed by cost (43%) and process (12%). Conclusion This systematic review suggests that attributes related to cancer treatment outcomes are the most important for patients. Process and cost attributes were less often included in studies but were still (but less) important to patients in most studies. Clinicians and decision makers should be aware that attribute importance might be influenced by level selection for that attribute.

This review summarizes evidence regarding the effects of patient education in osteoporosis prevention and treatment. The included studies reveal mixed results on a variety of endpoints. Methodological improvement of future RCTs (e.g. with regard to randomization and duration of follow-up) might yield more conclusive evidence on the effects of patient education in osteoporosis Introduction This review aims to evaluate the effects of patient education on osteoporosis prevention and treatment results. Methods Multiple databases including PubMed and Embase were searched until February 2016. Randomised controlled trials (RCTs) were eligible if they included adults diagnosed with or at risk of osteoporosis and assessed patient education interventions (group-or individual-based). Outcomes regarding osteoporosis management including initiation of and adherence to pharmacological therapy, physical activity, calcium and vitamin D intake, changes in smoking behaviour, fractures, quality of life (QoL) and osteoporosis knowledge were evaluated. The Cochrane collaboration's tool for assessing the risk of bias was used to assess the internal validity of included trials. Results Fifteen articles (13 different studies) published between 2001 and 2013 were included (group-based education = 7, individual-based education = 5, both = 1). The general risk of bias was considered as moderate to high. The effects on 'bone mineral density (BMD) testing and/or pharmacological therapy' (composite endpoint), 'calcium intake' and 'vitamin D intake' as well as 'osteoporosis knowledge' were statistically significant in favour of the intervention in >= 50% of the studies analysing these outcomes. Differences between the intervention and the control group regarding 'pharmacological therapy', 'medication adherence', 'physical activity', 'fractures' and 'QoL' were found to be statistically significant in <50% of the trials. Conclusions This review indicates that it is still unclear whether patient edu

Background: In this study, we conducted an analytic hierarchy process (AHP) and a discrete choice experiment (DCE) to elicit the preferences of patients with age-related macular degeneration using identical attributes and levels. Objectives: To compare preference based weights for age-related macular degeneration treatment attributes and levels generated by two elicitation methods. The properties of both methods were assessed, including ease of instrument use. Methods: A DCE and an AHP experiment were designed on the basis of five attributes. Preference-based weights were generated using the matrix multiplication method for attributes and levels in AHP and a mixed multinomial logit model for levels in the DCE. Attribute importance was further compared using coefficient (DCE) and weight (AHP) level ranges. The questionnaire difficulty was rated on a qualitative scale. Patients were asked to think aloud while providing their judgments. Results: AHP and DCE generated similar results regarding levels, stressing a preference for visual improvement, frequent monitoring, on-demand and less frequent injection schemes, approved drugs, and mild side effects. Attribute weights derived on the basis of level ranges led to a ranking that was opposite to the AHP directly calculated attribute weights. For example, visual function ranked first in the AHP and last on the basis of level ranges. Conclusions: The results across the methods were similar, with one exception: the directly measured AHP attribute weights were different from the level-based interpretation of attribute importance in both DCE and AHP. The dependence/independence of attribute importance on level ranges in DCE and AHP, respectively, should be taken into account when choosing a method to support decision making.

Introduction As several studies have been conducted to elicit patients' preferences for cancer treatment, it is important to provide an overview and synthesis of these studies. This study aimed to systematically review discrete choice experiments (DCEs) about patients' preferences for cancer treatment and assessed the relative importance of outcome, process and cost attributes. Methods A systematic literature review was conducted using PubMed and EMBASE to identify all DCEs investigating patients' preferences for cancer treatment between January 2010 and April 2016. Data were extracted using a predefined extraction sheet, and a reporting quality assessment was applied to all studies. Attributes were classified into outcome, process and cost attributes, and their relative importance was assessed. Results A total of 28 DCEs were identified. More than half of the studies (56%) received an aggregate score lower than 4 on the PREFS ( Purpose, Respondents, Explanation, Findings, Significance) 5-point scale. Most attributes were related to outcome (70%), followed by process (25%) and cost (5%). Outcome attributes were most often significant ( 81%), followed by process (73%) and cost (67%). The relative importance of outcome attributes was ranked highest in 82% of the cases where it was included, followed by cost (43%) and process (12%). Conclusion This systematic review suggests that attributes related to cancer treatment outcomes are the most important for patients. Process and cost attributes were less often included in studies but were still (but less) important to patients in most studies. Clinicians and decision makers should be aware that attribute importance might be influenced by level selection for that attribute.

Background: Age-related macular degeneration (AMD) is the leading cause of visual impairment and blindness in industrialized countries. Currently, mainly three treatment options are available, which are all intravitreal injections, but differ with regard to the frequency of injections needed, their approval status, and cost. This study aims to estimate patients' preferences for characteristics of treatment options for neovascular AMD. Methods: An interviewer-assisted discrete choice experiment was conducted among patients suffering from AMD treated with intravitreal injections. A Bayesian efficient design was used for the development of 12 choice tasks. In each task patients indicated their preference for one out of two treatment scenarios described by the attributes: side effects, approval status, effect on visual function, injection and monitoring frequency. While answering the choice tasks, patients were asked to think aloud and explain the reasons for choosing or rejecting specific characteristics. Quantitative data were analyzed with a mixed multinomial logit model. Results: Eighty-six patients completed the questionnaire. Patients significantly preferred treatments that improve visual function, are approved, are administered in a pro re nata regimen (as needed), and are accompanied by bimonthly monitoring. Patients significantly disliked less frequent monitoring visits (every 4 months) and explained this was due to fear of deterioration being left unnoticed, and in turn experiencing disease deterioration. Significant preference heterogeneity was found for all levels except for bimonthly monitoring visits and severe, rare eye-related side effects. Patients gave clear explanations of their individual preferences during the interviews. Conclusion: Significant preference trends were discernible for the overall sample, despite the preference heterogeneity for most treatment characteristics. Patients like to be monitored and treated regularly, but not too frequently

Patients suffering from age-related macular degeneration (AMD) are rarely actively involved in decision-making, despite facing preference-sensitive treatment decisions. This paper presents a qualitative study to prepare quantitative preference elicitation in AMD patients. The aims of this study were (1) to gain familiarity with and learn about the special requirements of the AMD patient population for quantitative data collection; and (2) to select/refine patient-relevant treatment attributes and levels, and gain insights into preference structures. Semi-structured focus group interviews were performed. An interview guide including preselected categories in the form of seven potentially patient-relevant treatment attributes was followed. To identify the most patient-relevant treatment attributes, a ranking exercise was performed. Deductive content analyses were done by two independent reviewers for each attribute to derive subcategories (potential levels of attributes) and depict preference trends. The focus group interviews included 21 patients. The interviews revealed that quantitative preference surveys in this population will have to be interviewer assisted to make the survey feasible for patients. The five most patient-relevant attributes were the effect on visual function [ranking score (RS): 139], injection frequency (RS: 101), approval status (RS: 83), side effects (RS: 79), and monitoring frequency (RS: 76). Attribute and level refinement was based on patients' statements. Preference trends and dependencies between attributes informed the quantitative instrument design. This study suggests that qualitative research is a very helpful step to prepare the design and administration of quantitative preference elicitation instruments. It especially facilitated familiarization with the target population and its preferences, and it supported attribute/level refinement.

Background In this study, we tested the feasibility of an interviewer-assisted analytic hierarchy process (AHP) in a special patient population with age-related macular degeneration (AMD). Objectives One aim was to generate preference weights regarding AMD treatment characteristics. A secondary aim was to explore the consistency of preference judgments and reasons for inconsistency. Methods We generated quantitative importance weights for decision criteria using the matrix multiplication method. A qualitative study component in the form of asking patients to think aloud throughout their judgments was implemented to facilitate understanding of quantitative findings. Consistency ratios were calculated as a measure of logical judgment performance within AHP. If consistency ratios exceeded 0.2, we explored reasons for inconsistency. Results We interviewed 86 patients and generated preference weights for criteria. Patients rated the injection's effect on visual function the highest (0.44), followed by the frequency of monitoring visits (0.18), approval status (0.13), injection frequency (0.13), and side effects (0.12). Inconsistency in judgments was prevalent at the subcriteria level. Whereas much of the observed inconsistency was due to an excessive use of high/extreme value judgments, these judgments seemed to result from patients reasonably trying to highlight their strong preferences. Conclusion Our study combines quantitative with qualitative data to explore patients' preference weights and decision processes using the AHP. It suggests that the type of inconsistency observed in judgments of AMD patients mostly results from rational decision making, not from error or lack of understanding. Further research should address which type and extent of inconsistency might be acceptable in different AHP settings.

Vera Vennedey,1 Marion Danner,1 Silvia MAA Evers,2,3 Sascha Fauser,4 Stephanie Stock,1 Carmen D Dirksen,5 Mickaël Hiligsmann2 1Institute for Health Economics and Clinical Epidemiology, Cologne University Hospital, Cologne, Germany; 2Department of Health Services Research, School for Primary Care and Public Health (CAPHRI), Maastricht University, Maastricht, the Netherlands; 3Department of Public Mental Health, Trimbos Institute, Netherlands Institute of Mental Health and Addiction, Utrecht, the Netherlands; 4Department of Vitreo-Retinal Surgery, Center of Ophthalmology, Cologne University Hospital, Cologne, Germany; 5Department of Clinical Epidemiology and Medical Technology Assessment, CAPHRI, University Hospital Maastricht, Maastricht, the Netherlands Background: Age-related macular degeneration (AMD) is the leading cause of visual impairment and blindness in industrialized countries. Currently, mainly three treatment options are available, which are all intravitreal injections, but differ with regard to the frequency of injections needed, their approval status, and cost. This study aims to estimate patients’ preferences for characteristics of treatment options for neovascular AMD. Methods: An interviewer-assisted discrete choice experiment was conducted among patients suffering from AMD treated with intravitreal injections. A Bayesian efficient design was used for the development of 12 choice tasks. In each task patients indicated their preference for one out of two treatment scenarios described by the attributes: side effects, approval status, effect on visual function, injection and monitoring frequency. While answering the choice tasks, patients were asked to think aloud and explain the reasons for choosing or rejecting specific characteristics. Quantitative data were analyzed with a mixed multinomial logit model. Results: Eighty-six patients completed the questionnaire. Patients significantly preferred treatments that improve visual functio

Background: Age-related macular degeneration (AMD) is the leading cause of visual impairment and blindness in industrialized countries. Currently, mainly three treatment options are available, which are all intravitreal injections, but differ with regard to the frequency of injections needed, their approval status, and cost. This study aims to estimate patients' preferences for characteristics of treatment options for neovascular AMD. Methods: An interviewer-assisted discrete choice experiment was conducted among patients suffering from AMD treated with intravitreal injections. A Bayesian efficient design was used for the development of 12 choice tasks. In each task patients indicated their preference for one out of two treatment scenarios described by the attributes: side effects, approval status, effect on visual function, injection and monitoring frequency. While answering the choice tasks, patients were asked to think aloud and explain the reasons for choosing or rejecting specific characteristics. Quantitative data were analyzed with a mixed multinomial logit model. Results: Eighty-six patients completed the questionnaire. Patients significantly preferred treatments that improve visual function, are approved, are administered in a pro re nata regimen (as needed), and are accompanied by bimonthly monitoring. Patients significantly disliked less frequent monitoring visits (every 4 months) and explained this was due to fear of deterioration being left unnoticed, and in turn experiencing disease deterioration. Significant preference heterogeneity was found for all levels except for bimonthly monitoring visits and severe, rare eye-related side effects. Patients gave clear explanations of their individual preferences during the interviews. Conclusion: Significant preference trends were discernible for the overall sample, despite the preference heterogeneity for most treatment characteristics. Patients like to be monitored and treated regularly, but not too frequently

Patients suffering from age-related macular degeneration (AMD) are rarely actively involved in decision-making, despite facing preference-sensitive treatment decisions. This paper presents a qualitative study to prepare quantitative preference elicitation in AMD patients. The aims of this study were (1) to gain familiarity with and learn about the special requirements of the AMD patient population for quantitative data collection; and (2) to select/refine patient-relevant treatment attributes and levels, and gain insights into preference structures. Semi-structured focus group interviews were performed. An interview guide including preselected categories in the form of seven potentially patient-relevant treatment attributes was followed. To identify the most patient-relevant treatment attributes, a ranking exercise was performed. Deductive content analyses were done by two independent reviewers for each attribute to derive subcategories (potential levels of attributes) and depict preference trends. The focus group interviews included 21 patients. The interviews revealed that quantitative preference surveys in this population will have to be interviewer assisted to make the survey feasible for patients. The five most patient-relevant attributes were the effect on visual function [ranking score (RS): 139], injection frequency (RS: 101), approval status (RS: 83), side effects (RS: 79), and monitoring frequency (RS: 76). Attribute and level refinement was based on patients' statements. Preference trends and dependencies between attributes informed the quantitative instrument design. This study suggests that qualitative research is a very helpful step to prepare the design and administration of quantitative preference elicitation instruments. It especially facilitated familiarization with the target population and its preferences, and it supported attribute/level refinement.

Background In this study, we tested the feasibility of an interviewer-assisted analytic hierarchy process (AHP) in a special patient population with age-related macular degeneration (AMD). Objectives One aim was to generate preference weights regarding AMD treatment characteristics. A secondary aim was to explore the consistency of preference judgments and reasons for inconsistency. Methods We generated quantitative importance weights for decision criteria using the matrix multiplication method. A qualitative study component in the form of asking patients to think aloud throughout their judgments was implemented to facilitate understanding of quantitative findings. Consistency ratios were calculated as a measure of logical judgment performance within AHP. If consistency ratios exceeded 0.2, we explored reasons for inconsistency. Results We interviewed 86 patients and generated preference weights for criteria. Patients rated the injection's effect on visual function the highest (0.44), followed by the frequency of monitoring visits (0.18), approval status (0.13), injection frequency (0.13), and side effects (0.12). Inconsistency in judgments was prevalent at the subcriteria level. Whereas much of the observed inconsistency was due to an excessive use of high/extreme value judgments, these judgments seemed to result from patients reasonably trying to highlight their strong preferences. Conclusion Our study combines quantitative with qualitative data to explore patients' preference weights and decision processes using the AHP. It suggests that the type of inconsistency observed in judgments of AMD patients mostly results from rational decision making, not from error or lack of understanding. Further research should address which type and extent of inconsistency might be acceptable in different AHP settings.

The growing percentage of the population aged 80 and over is challenging for healthcare systems, as frailty and other complex health issues are common in this age group. In order to provide patient-centered ambulatory healthcare, their preferences and expectations need to be explored. Therefore, the aim of this study was to systematically search for and synthesize qualitative evidence on how people aged 80 and over believe ambulatory healthcare (medical and nursing care) should be delivered to them. Medline, PsycINFO, CINAHL, Web of Science Core Collection and Google Scholar were searched for full research reports of qualitative studies focusing on the preferences, wishes, needs, expectations and experiences of people aged 80 and over regarding ambulatory medical and nursing care. The results were screened by two independent reviewers using a two-step approach. The included studies were meta-synthesized using Thomas and Harden's 'thematic synthesis' approach in order to gain a new, second-order interpretation of the findings of the primary studies. In the intermediate synthesis step, 14 aspects of healthcare structures and care relationships were identified as relevant. Based on these, three underlying wishes were found: feeling safe, feeling like a meaningful human being, and maintaining control and independence. The results of this review are in line with other research, such as reviews focusing on the preferences of the younger age group (65-80). However, the importance of aspects of care relationships as an integral part of favorable ambulatory healthcare and the wish to be strengthened as a meaningful human being are emphasized more strongly.

The growing percentage of the population aged 80 and over is challenging for healthcare systems, as frailty and other complex health issues are common in this age group. In order to provide patient-centered ambulatory healthcare, their preferences and expectations need to be explored. Therefore, the aim of this study was to systematically search for and synthesize qualitative evidence on how people aged 80 and over believe ambulatory healthcare (medical and nursing care) should be delivered to them. Medline, PsycINFO, CINAHL, Web of Science Core Collection and Google Scholar were searched for full research reports of qualitative studies focusing on the preferences, wishes, needs, expectations and experiences of people aged 80 and over regarding ambulatory medical and nursing care. The results were screened by two independent reviewers using a two-step approach. The included studies were meta-synthesized using Thomas and Harden's 'thematic synthesis' approach in order to gain a new, second-order interpretation of the findings of the primary studies. In the intermediate synthesis step, 14 aspects of healthcare structures and care relationships were identified as relevant. Based on these, three underlying wishes were found: feeling safe, feeling like a meaningful human being, and maintaining control and independence. The results of this review are in line with other research, such as reviews focusing on the preferences of the younger age group (65-80). However, the importance of aspects of care relationships as an integral part of favorable ambulatory healthcare and the wish to be strengthened as a meaningful human being are emphasized more strongly.