A Structured Approach to Involve Stakeholders in Prioritising Topics for Systematic Reviews in Public Health.

Objectives: This study aimed to develop and apply a structured approach for prioritising topics for systematic reviews in public health, framed according to the readily applicable PICO format, which encourages the involvement of stakeholders' preferences in a transparent matter. Methods: We developed a multi-stage process, consisting of a scoping and two Delphi stages with web-based surveys and invited public health stakeholders in Switzerland to participate: First, respondents specified topics for different public health domains, which were reformulated in a PICO format by content analysis. Second, respondents rated the topics using five stakeholder-refined assessment criteria. Overall rankings were calculated to assess differences between stakeholder groups and rating criteria. Results: In total, 215 respondents suggested 728 topics altogether. The response rate in the two Delphi stages was 91.6% and 77.6%, respectively. Most top-rated review topics focused on the effectiveness of interventions providing education to different target groups, followed by interventions to increase access to specific healthcare services. Conclusion: Our approach encourages involvement of stakeholders in identifying priorities for systematic reviews and highlights disparities between stakeholders and between individual criteria.

Is this really Empowerment? Enhancing our understanding of empowerment in patient and public involvement within clinical research.

BACKGROUND: There has been a growing push to involve patients in clinical research, shifting from conducting research on, about, or for them to conducting it with them. Two arguments advocate for this approach, known as Patient and Public Involvement (PPI): to improve research quality, appropriateness, relevance, and credibility by including patients' diverse perspectives, and to use PPI to empower patients and democratize research for more equity in research and healthcare. However, while empowerment is a core objective, it is often not clear what is meant by empowerment in the context of PPI in clinical research. This vacancy can lead to insecurities for both patients and researchers and a disconnect between the rhetoric of empowerment in PPI and the reality of its practice in clinical trials. Thus, clarifying the understanding of empowerment within PPI in clinical research is essential to ensure that involvement does not become tokenistic and depletes patients' capacity to advocate for their rights and needs. METHODS: We explored the historical roots of empowerment, primarily emerging from mid-20th century social movements like feminism and civil rights and reflected the conceptual roots of empowerment from diverse fields to better understand the (potential) role of empowerment in PPI in clinical research including its possibilities and limitations. RESULTS: Common themes of empowerment in PPI and other fields are participation, challenging power structures, valuing diverse perspectives, and promoting collaboration. On the other hand, themes such as contextual differences in the empowerment objectives, the relationship between empowerment and scientific demands, research expertise, and power asymmetries mark a clear distinction from empowerment in other fields. CONCLUSION: PPI offers potential for patient empowerment in clinical trials, even when its primary goal may be research quality. Elements like participation, sharing opinions, and active engagement can contribute to patient empowerment. Nonetheless, some expectations tied to empowerment might not be met within the constraints of clinical research. To empower patients, stakeholders must be explicit about what empowerment means in their research, engage in transparent communication about its realistic scope, and continuously reflect on how empowerment can be fostered and sustained within the research process.

Developing and Evaluating Digital Public Health Interventions Using the Digital Public Health Framework DigiPHrame: A Framework Development Study.

BACKGROUND: Digital public health (DiPH) interventions may help us tackle substantial public health challenges and reach historically underserved populations, in addition to presenting valuable opportunities to improve and complement existing services. However, DiPH interventions are often triggered through technological advancements and opportunities rather than public health needs. To develop and evaluate interventions designed to serve public health needs, a comprehensive framework is needed that systematically covers all aspects with relevance for public health. This includes considering the complexity of the technology, the context in which the technology is supposed to operate, its implementation, and its effects on public health, including ethical, legal, and social aspects. OBJECTIVE: We aimed to develop such a DiPH framework with a comprehensive list of core principles to be considered throughout the development and evaluation process of any DiPH intervention. METHODS: The resulting digital public health framework (DigiPHrame) was based on a scoping review of existing digital health and public health frameworks. After extracting all assessment criteria from these frameworks, we clustered the criteria. During a series of multidisciplinary meetings with experts from the Leibniz ScienceCampus Digital Public Health, we restructured each domain to represent the complexity of DiPH. In this paper, we used a COVID-19 contact-tracing app as a use case to illustrate how DigiPHrame may be applied to assess DiPH interventions. RESULTS: The current version of DigiPHrame consists of 182 questions nested under 12 domains. Domain 1 describes the current status of health needs and existing interventions; domains 2 and 3, the DiPH technology under assessment and aspects related to human-computer interaction, respectively; domains 4 and 5, structural and process aspects, respectively; and domains 6-12, contextual conditions and the outcomes of the DiPH intervention from broad perspectives. In the CWA use case, a number of questions relevant during its development but also important for assessors once the CWA was available were highlighted. CONCLUSIONS: DigiPHrame is a comprehensive framework for the development and assessment of digital technologies designed for public health purposes. It is a living framework and will, therefore, be updated regularly and as new public health needs and technological advancements emerge.

Effectiveness of a peer-supported crisis intervention to reduce the proportion of compulsory admissions in acute psychiatric crisis interventions in an outreach and outpatient setting: study protocol for an exploratory cluster randomised trial combined with qualitative methods.

INTRODUCTION: Compulsory admissions are associated with feelings of fear, humiliation and powerlessness. The number of compulsory admissions in Germany and other high-income countries has increased in recent years. Peer support has been shown to increase the self-efficacy of individuals with mental health conditions in acute crises and to reduce the use of coercive measures in clinical settings. The objective of this study is to reduce the number of compulsory admissions by involving peer support workers (PSWs) in acute mental health crises in outreach and outpatient settings. METHODS AND ANALYSIS: This one-year intervention is an exploratory, cluster randomised study. Trained PSWs will join the public crisis intervention services (CIS) in two of five regions (the intervention regions) in the city of Bremen (Germany). PSWs will participate in crisis interventions and aspects of the mental health services. They will be involved in developing and conducting an antistigma training for police officers. The remaining three regions will serve as control regions. All individuals aged 18 and older who experience an acute mental health crisis during the operating hours of the regional CIS in the city of Bremen (around 2000 in previous years) will be included in the study. Semistructured interviews will be conducted with PSWs, 30 patients from control and intervention regions, as well as two focus group discussions with CIS staff. A descriptive comparison between all participants in the intervention and control regions will assess the proportion of compulsory admissions in crisis interventions during the baseline and intervention years, including an analysis of temporal changes. ETHICS AND DISSEMINATION: This study was approved by the Ethics Committee of the University of Bremen (file 2022-09) on 20 June 2022. The results will be presented via scientific conferences, scientific journals and communicated to policy-makers and practitioners. TRIAL REGISTRATION NUMBER: DRKS00029377.

Theories used to develop or evaluate social prescribing in studies: a scoping review.

OBJECTIVE: This scoping review aims to provide an overview of how theories were used in the development or evaluation of social prescribing (SP) intervention studies. BACKGROUND: SP describes a patient pathway where general practitioners (GPs) connect patients with community activities through referrals to link workers. This review seeks to understand the explanations provided for the outcomes and implementation process of SP. INCLUSION CRITERIA: Studies using a defined theory to develop or evaluate a specific SP intervention in primary care and the community sector. METHODS: This scoping review was conducted in accordance with JBI methodology. The following databases were searched on 8th of July 2022: PubMed, ASSIA, Cochrane, Cinahl, PsycINFO, Social Care Online, Sociological Abstracts, Scopus, and Web of Science. The search only considered English language texts. Additional literature was identified by searching relevant web pages and by contacting experts. The selection of sources and the data extraction was done by two reviewers independently. RESULTS: The search resulted in 4240 reports, of which 18 were included in the scoping review. Of these, 16 were conducted in the UK, one in Canada and one in Australia. The majority of reports employed a qualitative approach (11/18). Three were study protocols. 11 distinct theories were applied to explain outcomes (4 theories), differences in outcomes (3 theories), and the implementation of the intervention (4 theories). In terms of practical application, the identified theories were predominantly used to explain and understand qualitative findings. Only one theory was used to define variables for hypothesis testing. All theories were used for the evaluation and none for the development of SP. CONCLUSION: The theories influenced which outcomes the evaluation assessed, which causal pathway was expected to generate these outcomes, and which methodological approaches were used. All three groups of theories that were identified focus on relevant aspects of SP: fostering positive patient/community outcomes, addressing inequalities by considering the context of someone's individual circumstances, and successfully implementing SP by collaboratively working across professions and institutional boundaries. Additional insight is required regarding the optimal use of theories in practical applications.

Priority setting to support a public health research agenda: a modified Delphi study with public health stakeholders in Germany.

BACKGROUND: Research priority setting (RPS) studies are necessary to close the significant gap between the scientific evidence produced and the evidence stakeholders need. Their findings can make resource allocation in research more efficient. However, no general framework for conducting an RPS study among public health stakeholders exists. RPS studies in public health are rare and no such study has been previously conducted and published in Germany. Therefore, we aimed to investigate which research topics in public health are prioritised by relevant stakeholders in Germany. METHODS: Our RPS study consisted of a scoping stage and a Delphi stage each split into two rounds. Firstly, we invited members of the German Public Health Association to gather expert insights during two initial workshops. Next, we defined the relevant stakeholder groups and recruited respondents. Thereafter, we collected research topics and assessment criteria with the respondents in the first Delphi round and aggregated the responses through content analysis. Finally, we asked the respondents to rate the research topics with the assessment criteria in the second Delphi round. RESULTS: In total, 94 out of the 140 invited public health organisations nominated 230 respondents for the Delphi study of whom almost 90% participated in both Delphi rounds. We compiled a comprehensive list of 76 research topics that were rated and ranked by several assessment criteria. We split the research topics into two types, substantive research topics and methodological-theoretical research topics respectively, to ensure the comparability among the research topics. In both types of research topics-substantive research topics and methodological-theoretical research topics-the respective top five ranked research topics hardly differed between public health researchers and public health practitioners. However, clear differences exist in the priority ranking of many (non-top priority) research topics between the stakeholder groups. CONCLUSIONS: This research demonstrates that it is possible, with limited resources, to prioritise research topics for public health at the national level involving a wide range of pertinent stakeholders. The results can be used by research funding institutions to initiate calls for research projects with an increased relevance for health and/or scientific progress.

In Cochrane nutrition reviews assessment of dietary adherence varied considerably.

OBJECTIVES: Our aim was to investigate if and how Cochrane nutrition reviews assess dietary adherence to a specific dietary regimen. STUDY DESIGN AND SETTING: Cochrane nutrition reviews fulfilling the following criteria were included: systematic review of randomized controlled trials including adults and investigating the effect of caloric restriction, dietary pattern, foods, nutrients, supplements, or other nutrition-related-interventions. Extensive data extraction and descriptive statistics were conducted. RESULTS: Overall, 226 Cochrane reviews were included. Most reviews mentioned dietary adherence in the main text (n = 174), predominantly in the Methods and Results. Dietary adherence was assessed in 76 reviews and defined in 19. It was included in the risk of bias (RoB) assessment in 20 reviews with nine using a newly created RoB domain for dietary adherence, and considered as outcome in 37 reviews. Seventy-five reviews addressed degree of adherence and five treatment effects considering the degree of adherence. CONCLUSION: Dietary adherence was reported in a heterogeneous manner in Cochrane nutrition reviews. Due to its high importance, we suggest that systematic reviews report the assessment and degree of dietary adherence measured in primary studies. Dietary adherence can further be examined as outcome, evaluated within the RoB (deviations from intended interventions) and included in sensitivity analyses.

["Shifting the Curve": New Developments and Challenges in the Field of Public Mental Health]. / "Shifting the Curve": Neue Entwicklungen und Herausforderungen im Bereich der Public Mental Health.

In recent years, the field of public mental health has received increasing attention in national and international research. However, a key challenge remains to map this field in its interdisciplinarity across the entire spectrum of mental health and lead the discourse between public health, psychiatric epidemiology, mental health promotion, prevention, and health services research in order to realize more fully its innovative potential for improving mental health at the population level. In this interdisciplinary discourse, a number of fundamental conceptual and methodological issues arise, which will be discussed in this essay in relation to Geoffrey Rose's population strategy. In a national initiative across relevant learned societies that has recently been formed, these issues are currently starting to be addressed, also in relation to fundamental causes of social and health inequalities, which ultimately is geared towards more tangible strategies for improving mental health at the population.

The digital rainbow: Digital determinants of health inequities.

The widely used socioecological rainbow model from Dahlgren and Whitehead specifies determinants of health inequity on multiple hierarchical levels and suggests that these determinants may interact both within and between levels. At the time of its inception, digital determinants only played a minor role in tackling inequities in public health and were therefore not specifically considered. This has dramatically changed: From today's perspective, health inequities increasingly depend on digital determinants. In this article, we suggest adapting the Dahlgren-Whitehead model to reflect these developments. We propose a model that allows formulating testable hypotheses, interpreting research findings, and developing policy implications against the background of the global spread of digital technologies. This may facilitate the development of a new line of research and logic models for public health interventions in the digital age. Using the COVID-19 pandemic as a case study, we illustrate how the digitization of all aspects of life affects the different levels of determinants of health inequities in the Dahlgren-Whitehead model. In doing so, we deliberately argue for not introducing a separate digital sphere in its own right, but for understanding digitization as a phenomenon that permeates all levels of determinants of health inequities. As a result, we present a digital rainbow model that integrates Dahlgren and Whitehead's 1991 model with digital environments to identify current health promotion and research issues without changing the rainbow model's initial structure.

What Do We Know about Social and Non-Social Factors Influencing the Pathway from Cognitive Health to Dementia? A Systematic Review of Reviews.

The heterogeneous and multi-factorial nature of dementia requires the consideration of all health aspects when predicting the risk of its development and planning strategies for its prevention. This systematic review of reviews provides a comprehensive synthesis of those factors associated with cognition in the context of dementia, identifying the role of social aspects and evidencing knowledge gaps in this area of research. Systematic reviews and meta-analyses from 2009-2021 were searched for within Medline, PsycINFO, CINAHL Complete, Cochrane, and Epistemonikos. Reviewers independently screened, reviewed, and assessed the records, following the PRISMA-2020 guidelines. From 314 included studies, 624 cognitive-related factors were identified, most of them risk factors (61.2%), mainly belonging to the group of 'somatic comorbidities' (cardiovascular disease and diabetes) and 'genetic predispositions'. The protective factors (20%) were mainly related to lifestyle, pointing to the Mediterranean diet, regular physical activity, and cognitively stimulating activities. Social factors constituted 9.6% of all identified factors. Research on biological and medical factors dominates the reviewed literature. Greater social support and frequent contact may confer some protection against cognitive decline and dementia by delaying its onset or reducing the overall risk; however, overall, our findings are inconsistent. Further research is needed in the fields of lifestyle, psychology, social health, and the protective factors against cognitive decline and dementia.

Mapping the complexity of dementia: factors influencing cognitive function at the onset of dementia.

BACKGROUND: Dementia is a multi-factorial condition rather than a natural and inevitable consequence of ageing. Some factors related to dementia have been studied much more extensively than others. To gain an overview of known or suspected influential factors is a prerequisite to design studies that aim to identify causal relationships and interactions between factors. This article aims to develop a visual model that a) identifies factors related to cognitive decline that signal the onset of dementia, b) structures them by different domains and c) reflects on and visualizes the possible causal links and interactions between these factors based on expert input using a causal loop diagram. METHOD: We used a mixed-method, step-wise approach: 1. A systematic literature review on factors related to cognitive decline; 2. A group model building (GMB) workshop with experts from different disciplines; 3. Structured discussions within the group of researchers. The results were continuously synthesized and graphically transformed into a causal loop diagram. RESULTS: The causal loop diagram comprises 73 factors that were structured into six domains: physical (medical) factors (23), social health factors (21), psychological factors (14), environmental factors (5), demographic factors (5) and lifestyle factors (3). 57 factors were identified in the systematic literature review, additionally 16 factors, mostly of the social health cluster, were identified during the GMB session and the feedback rounds. CONCLUSION: The causal loop diagram offers a comprehensive visualisation of factors related to cognitive decline and their interactions. It supports the generation of hypotheses on causal relationships and interactions of factors within and between domains.

Contacts with general practitioners, dentists, and medical specialists among nursing home residents: a cross-sectional study in 44 German nursing homes.

BACKGROUND: Nursing home residents have high medical care needs. Their medical care utilization is, however, lower compared to community-dwelling elderly and varies widely among nursing homes. This study quantified the utilization of general practitioners (GPs), dentists, and medical specialists among nursing homes and residents, and investigated whether dentist utilization is associated with individual and nursing home characteristics. METHODS: Forty-four nursing homes invited 2124 residents to participate in a cross-sectional study. For 10 medical specialties, data on contacts in nursing homes, practices, and by telephone in the last 12 months were assessed at individual and nursing home level. The proportion of nursing homes and residents with any form of contact, and the median number and interquartile range (IQR) of contacts among individuals with contact were determined. Using multilevel logistic regression, associations between the probability of individual dental care utilization and sex, age, LTC grade, years of residence, sponsorship, number of nursing home beds, and transport and medical escort services for consultations at a practice were investigated. RESULTS: The proportion of nursing homes with any form of contact with physicians ranged from 100% for GPs, dentists, and urologists to 76.7% for gynecologists and orthopedists. Among the nursing homes, 442 residents participated (20.8% response). The proportion of residents with any contact varied from 97.8% for GPs, 38.5% for neurologists/psychiatrists, and 32.3% for dentists to 3.0% for gynecologists. Only for GPs, neurologists/psychiatrists, dentists, otorhinolaryngologists, urologists, and dermatologists, the proportion was higher for nursing home contacts than for practice and telephone contacts. Among residents with any contact, the median number of contacts was highest for GPs (11.0 [IQR 7.0-16.0]), urologists (4.0 [IQR 2.0-7.0]), and neurologists/psychiatrists (3.0 [IQR 2.0-5.0]). Dentist utilization varied widely among nursing homes (median odds ratio 2.5) and was associated with higher age. CONCLUSIONS: Almost all residents had regular contact to GPs, but only one third had contact with dentists. Lower proportions with contact were found for medical specialists, except for neurologists/psychiatrists. Reasons for the large variations in dental care utilization among nursing homes should be identified. TRIAL REGISTRATION: DRKS00012383 [2017/12/06].

[Medical specialist undertreatment in nursing home residents-Prevalence and extrapolation]. / Fachärztliche Unterversorgung bei Heimbewohnern ­ Prävalenzstudie und Hochrechnung.

BACKGROUND: Nursing home residents tend to have lower medical specialist utilization than other groups of older people; however, as yet there is little evidence whether nursing home residents obtain adequate medical specialist care. This study investigated whether nursing home residents receive adequate oral health care, ophthalmological care, otorhinolaryngologist care and neurological care. The unmet needs of the nursing home population in Germany was extrapolated. MATERIAL AND METHODS: Audiometry, eye examinations and oral visual inspection were performed in 409 residents from 44 nursing homes. Medical care in the previous 12 months as well as existing diagnoses were retrieved from the nursing documentation. Teams of physicians evaluated for each resident based on all collected data if the resident obtained specialist care that was adequate to the needs. RESULTS: Between 15% and 45% of the residents with need for medical specialist care did not receive adequate specialist care. Of all residents 27% had unmet need of specialist care in at least one of the investigated medical specialties. It is projected that up to 205,000 nursing home residents in Germany do not receive adequate medical specialist care. CONCLUSION: Given a considerable proportion of nursing home residents with unmet need of specialist care, interventions should be developed that help reduce the level of unmet needs.

[Dealing with Ethical Aspects in Student Research Projects - Results of a Survey of Health Sciences Faculties in Germany]. / Umgang mit der ethischen Bewertung bei studentischen Forschungsarbeiten ­ Ergebnisse einer Befragung an gesundheitsbezogenen Fachbereichen in Deutschland.

INTRODUCTION: Research projects in the health sciences often involve ethically sensitive areas. The rise in the number of empirically oriented theses and concepts such as research-based learning has led to an increasing need for ethics approvals also for student research projects. There is no standardised procedure for dealing with student research projects in Germany. This can lead to research projects being carried out without an ethics approval, even though this might have been necessary. This study aims to investigate how different universities deal with ethical aspects in students' research. In addition, we present examples of existing approaches. METHODS: An online-based questionnaire was sent to 132 departments offering degree programmes in public health, health and nursing science, and psychology at 112 universities. Additionally, telephone interviews were conducted with the coordinators of four such degree programmes. RESULTS: Coordinators of 55 such degree programmes participated in the survey; 84% of the participating of these offered support to students with ethical questions concerning their research. However, only 39% provided a structured procedure for dealing with ethical assessments of research projects led by students. Several approaches were presented in depth by the coordinators of four degree programmes, among them the use of checklists, the establishment of internal ethics committees, and ethics advisory services. All respondents agreed on a need to deal with ethics approvals related to students' research projects. CONCLUSION: Structured procedures exist at some but not all degree programmes, faculties, and universities. Some of these procedures can serve as models for other universities.

[Older patients' involvement in research (INVOLVE-Clin): a study protocol]. / Aktive Beteiligung von älteren Patient*innen an klinischer Forschung (INVOLVE-Clin): Ein Studienprotokoll.

INTRODUCTION: Patient involvement in health research is an integral part of health care in many countries. It promotes the relevance and quality of research and increases the meaningfulness of research results. Meanwhile, the value of patient involvement has also been recognised in Germany. The lack of a common understanding of patient involvement and appropriate methods make implementation difficult. In Germany, patients are still rarely involved in the planning and conduct of health research. Vulnerable patient groups such as the elderly and the very old are considered particularly challenging for researchers in active patient involvement due to their special needs, which is why they are often neglected. Especially nursing home residents suffer from a variety of health impairments which are accompanied by a high number of prescription drugs and adverse events and can therefore make patient involvement more difficult. The present project aims to test the method of patient advisory boards for the involvement of nursing home residents. Using the design of a clinical trial to optimise medication for nursing home residents as a case study, we will assess the feasibility of the method for this target group. We will also install a patient advocate as moderator of the advisory board. The study plan is described in the present study protocol. METHODS: Two patient advisory boards with nursing home residents will be established. With a patient advocate acting as moderator, the essential elements of a clinical trial to optimise medication will be discussed and passed on to the study planning team via the patient advocate. The overall topic of the clinical trial is the optimisation of medication in cardiovascular disease. The nursing home residents are informed about the contents and ideas of the study to be planned and the interests of the researchers, respectively, and will discuss the proposals of the study planning team. Nursing home residents', the patient advocate's and the researchers' expectations and experiences will be examined in individual interviews. DISCUSSION: The study will provide a potentially suitable method to involve nursing home residents in the research process. The jointly developed study design will be incorporated into a new project proposal. The results will be used to inform the development of a German handbook on active public and patient involvement.

[Patient and public involvement in clinical research: An introduction]. / Aktive Beteiligung von Patient*innen an klinischer Forschung ­ Eine Einführung.

Usually, patients participating in clinical trials have a passive role as test persons. This creates a risk that patients' needs and interests are not reflected in clinical research. The aim of the present paper is to give an introduction to patient involvement in clinical research. It is based on an exploratory literature research and our own experiences with patient involvement. By actively involving patients in the design, conduct and translation of clinical trials, research and healthcare can be better tailored to meet the patients' needs. Patient involvement has the potential to enhance the quality and relevance of research, support patient empowerment and contribute to the democratisation of research processes. There are different methods to involve patients in research, which are often differentiated as consultation, cooperation and user-led research. Methods, time of involvement and persons to be involved should be chosen to fit the aims of the involvement. While cultural, practical and personal barriers could hinder patient involvement, there are several strategies that enable effective involvement: defining the aims of the involvement, clarifying motivation and expectations as well as roles and the form of cooperation, offering training, planning sufficient resources, involving patients from the start and communicating the benefits of involvement.

[Contact-Tracing Apps in Contact Tracing of COVID-19]. / Contact-Tracing-Apps als unterstützende Maßnahme bei der Kontaktpersonennachverfolgung von COVID-19.

Contact tracing is currently one of the most effective measures to contain the COVID-19 pandemic. In order to identify persons that would otherwise not be known or remembered and to keep the time delay when reporting an infection and when contacting people as short as possible, digital contact tracing using smartphones seems to be a reasonable measure additional to manual contact tracing. Although first modelling studies predicted a positive effect in terms of prompt contact tracing, no empirically reliable data are as yet available, neither on the population-wide benefit nor on the potential risks of contact tracing apps. Risk-benefit assessment of such an app includes investigating whether such an app fulfils its purpose, as also research on the effectiveness, risks and side effects, and implementation processes (e. g. planning and inclusion of different participants). The aim of this article was to give an overview of possible public health benefits as well as technical, social, legal and ethical aspects of a contact-tracing app in the context of the COVID-19 pandemic. Furthermore, conditions for the widest possible use of the app are presented.

[Assessing the Benefit of Palliative Care in Germany - Perspective of Patients, Relatives and Professionals]. / Den Nutzen von Palliativversorgung bewerten ­ Was muss aus Patienten-, Angehörigen- und Versorgersicht beachtet werden?

BACKGROUND: The evaluation of complex interventions such as palliative care is challenging. Methods guidance such as the guidance documents of the Integrated Health Technology Assessment for the Evaluation of Complex Technologies (INTEGRATE-HTA) project help address specific challenges. The INTEGRATE-guidance was developed cooperatively by various international stakeholders and it was applied in a case study on palliative care. The presented study was part of the INTEGRATE-HTA project. ObjectivesThe objective was to identify important assessment aspects of palliative care in Germany from the perspective of patients, relatives and professional providers. METHODS: Applying the structured consensus method of the Improved Nominal Group Technique, we conducted interviews with two focus groups - one with relatives and one with professionals. Additionally, we conducted 4 interviews with patients. We used an open coding procedure to analyze the data and a dialogical approach to validate the results. RESULTS: 8 assessment aspects were found to be important. These are the definition and legitimacy of the term benefit, understanding of palliative care, patient-centered and holistic care approach, access to palliative care, continuity and flexibility of care, education of palliative care providers, and multidisciplinary approach. A central point was the need to address the intervention in its complexity and to include interactions between the different components. CONCLUSIONS: To be able to integrate various models and different perspectives of palliative care, it is important to have the involvement of different stakeholders. This also enhances the incorporation of important aspects during the development of assessment instruments.