Parental COVID-19-related health information practises, sources, evaluations and needs: A qualitative interview study.

BACKGROUND: Parents of infants and young children may have specific health information needs and preferences, as they are responsible for their children's health. COVID-19 posed many challenges for families, not least in terms of the constantly updated disease-prevention guidelines. However, little is known about parents' experiences with this unprecedented situation, that is, how and where they seek, use and evaluate COVID-19 (child)-specific health information. We aimed to find out more about this to provide insights to health (information) providers when communicating pandemic information to parents. METHODS: We conducted semistructured telephone interviews (August to October 2020) with a purposively selected sample of 20 German-speaking and 10 Arabic-speaking parents of children up to 4 years old. Recruitment occurred through multiple channels, including childcare institutions and social media. Qualitative content analysis of the interview transcripts illustrates the main differences between the two groups. RESULTS: By the time the interviews were conducted (mid-2020), some parents reported to seek information less actively or not at all, compared to the beginning of COVID-19. German speakers frequently used Google to obtain information, whereas Arabic speakers mentioned social media (particularly Facebook) as a central source. However, medical providers were the most trusted source for child health. Though determining the credibility of online information was difficult for some parents, others, mostly German speakers (middle-high education), were aware of some author-related criteria. When deciding on information use, parents often rely on their own judgement and gut instinct. Besides the necessity to disseminate information via multiple outlets to reach all parents, Arabic speakers desired audio-visual and translation tools to facilitate understanding. DISCUSSION AND PUBLIC CONCLUSION: Apart from education, language and knowledge of the health system and of the attributes of credible information may determine its quality and consequent decisions. There seems to be a considerable need to foster knowledge about reliable information sources, a greater understanding of the range of quality criteria and specific support for nonnative speakers, not least to better inform parents' decision-making. PATIENT AND PUBLIC CONTRIBUTION: A parent panel (n = 7) contributed to gathering ideas regarding recruitment, discussing initial results and the choice of topics and questions for a second interview phase.

Public preferences for the allocation of donor organs for transplantation: Focus group discussions.

BACKGROUND: Deceased donor organs are scarce resources because of a large supply-and-demand mismatch. This scarcity leads to an ethical dilemma, forcing priority-setting of how these organs should be allocated and whom to leave behind. OBJECTIVE: To explore public preferences for the allocation of donor organs in regard to ethical aspects of distributive justice. METHODS: Focus groups were facilitated between November and December 2018 at Hannover Medical School. Participants were recruited locally. Transcripts were assessed with content analysis using the deductive framework method. All identified and discussed criteria were grouped according to the principles of distributive justice and reported following the COREQ statement. RESULTS: Six focus groups with 31 participants were conducted. Overall, no group made a final decision of how to allocate donor organ; however, we observed that not only a single criterion/principle but rather a combination of criteria/principles is relevant. Therefore, the public wants to allocate organs to save as many lives as possible by both maximizing success for and also giving priority to urgent patients considering the best compatibility. Age, waiting time, reciprocity and healthy lifestyles should be used as additional criteria, while sex, financial status and family responsibility should not, based on aspects of equality. CONCLUSIONS: All participants recognized the dilemma that prioritizing one patient might cause another one to die. They discussed mainly the unclear trade-offs between effectiveness/benefit and medical urgency and did not establish an agreement about their importance. The results suggest a need of preference studies to elucidate public preferences in organ allocation.

Involving patients and the public in medical and health care research studies: An exploratory survey on participant recruiting and representativeness from the perspective of study authors.

Research on patient and public involvement so far concentrates on defining involvement, describing its methods, and analyzing involvement practices in various individual research disciplines. There is little empirical data on the process of and aims for selecting (lay) PPI participants, and to what extend they can and should be representative of the population at large. To explore practices and perceptions on these issues and on future PPI conduct more generally, we sent an electronic survey to authors who published involvement activities as part of their studies in medical and social science journals. We identified such authors with a systematic search of five databases and applied descriptive statistics for analysis. Of those who returned the survey (n = 127 of 315; 40%), most had previously conducted involvement activities (73%). 45% reported more than one type of involvement, e.g. consultation and deliberation and participation (14%) and to have recruited more than one type of participant for their PPI activity (56%), e.g. 'lay publics' and 'expert publics' (33% of 71). Representativeness was often seen as a crucial objective when selecting PPI participants, while less than half found it very easy (9%) or rather easy (34%) to select participants. Many respondents considered achieving good representativeness difficult (52%) or very difficult (17%). They identified significant respective challenges and desired more guidance on various aspects of planning and conducting PPI (56%). 55% thought that the concept of "involvement" should be changed or improved. We conclude that recruiting lay people for PPI activities and deciding about and handling representativeness are controversial in current PPI practice, given the manifold challenges mentioned by the survey respondents. Our findings may inform further research particularly regarding-the potentially many cases of-unpublished PPI.

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

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

[Deliberations of the expert advisory council on innovation fund applications]. / Überlegungen des Expertenbeirats zu Anträgen im Rahmen des Innovationsfonds.

The "Innovation Fund" provides incentives for the development and testing of healthcare innovations in the area of the statutory health insurance with the aim to improve the quality of care in Germany. Over a period of initially four years (2016-19), 300 million Euro will be allocated annually to projects on "innovative forms of healthcare provision" and "health services research". Using a formalized procedure, the ten-member expert advisory board appointed by the German Federal Ministry of Health (BMG) assess all applications on the basis of various criteria for scientific quality, potential of innovation, relevance for health service delivery, and implementability. The present discussion paper sets out important considerations for submission and assessment and puts them up for discussion. (As supplied by the authors).

The long way of implementing patient-centered care and shared decision making in Germany.

The main focus of the paper is on the description of the development and current state of research and implementation of patient-centered care (PCC) and shared decision making (SDM) after fifteen years of substantial advances in health policy and health services research. What is the current state of SDM in health policy? The "Patients' Rights Act" from 2013 standardizes all rights and responsibilities within the framework of medical treatment for German citizens and legal residents. This comprises the right to informed decisions, comprehensive and comprehensible information for patients, and decisions based on a clinician-patient-partnership. What is the current state of SDM interventions and patient decision support tools? SDM training programs for healthcare professionals have been developed. Their implementation in medical schools has been successful. Several decision support tools - primarily with support from health insurance funds and other public agencies - are to be implemented in routine care, specifically for national cancer screening programs. What is the current state of research and routine implementation? The German government and other public institutions are constantly funding research programs in which patient-centered care and shared decision-making are important topics. The development and implementation of decision tools for patients and professionals as well as the implementation of CME trainings for healthcare professionals require future efforts. What does the future look like? With the support of health policy and scientific evidence, transfer of PCC and SDM to practice is regarded as meaningful. Research can help to assess barriers, facilitators, and needs, and subsequently to develop and evaluate corresponding strategies to successfully implement PCC and SDM in routine care, which remains challenging.

A geriatric assessment in general practice: prevalence, location, impact and doctor-patient perceptions of pain.

BACKGROUND: To investigate what a geriatric assessment in general practice adds towards previous findings of prevalence, location, impact and the dyadic doctor-patient perception of pain in this age group. METHODS: Cross-sectional study. Consecutive patients aged 70 and over underwent a comprehensive geriatric assessment in general practice that included a basic pain assessment (severity, sites and impact). Patients with pain and their doctors then independently rated its importance. Pain was correlated with further findings from the assessment, such as overall health, physical impairments, everyday function, falls, mood, health related lifestyle, social circumstances, using bivariate and multivariate statistics. Patient-doctor agreement on the importance of pain was calculated using kappa statistics. RESULTS: 219 out of 297 patients (73.7 %) reported pain at any location. Pain was generally located at multiple sites. It was most often present at the knee (33.9%), the lumbar spine (33.5%) as well as the hip (13.8%) and correlated with specific impairments such as restrictions of daily living (knee) or sleep problems (spine). Patients with pain and their physicians poorly agreed on the importance of the pain problem. CONCLUSIONS: A basic pain assessment can identify older patients with pain in general practice. It has resulted in a high prevalence exceeding that determined by encounters in consultations. It has been shown that a geriatric assessment provides an opportunity to address pain in a way that is adapted to older patients' needs - addressing all sites, its specific impact on life, and the patients' perceived importance of pain. Since there is little doctor-patient agreement, this seems a valuable strategy to optimize concrete treatment decisions and patient centered care. TRIAL REGISTRATION: This study is registered in the German Clinical Trial Register ( DRKS00000792 ).

[Patients' need for consultation after a geriatric assessment in family practice : Survey]. / Patientenseitiger Gesprächsbedarf nach einem geriatrischen Assessment in Hausarztpraxen : Survey.

BACKGROUND: During a doctor-patient consultation patients usually seek information by disclosing their reasons for requesting the encounter. Geriatric assessment allows a proactive examination of patients' overall health and function and provides an opportunity to broach issues beyond the initial purposes of the consultation. OBJECTIVES: The study aimed at investigating older patients' information seeking behavior following a geriatric assessment and the kind of topics they wished to discuss, taking a variety of patient and health-related factors into account. MATERIAL AND METHODS: A total of 317 patients (≥ 70 years) underwent a geriatric assessment in 40 general practices. Subsequently they obtained a list of the problems uncovered and rated the relevance and information needs for each problem. Analyses consisted of determining the prevalence of information need for each health topic and identifying predictors in a mixed model (multilevel regression analysis). RESULTS: The 317 patients presented with a median of 11 health problems (interquartile range, IQR 8-14) and 80 % of the patients had information needs concerning only a few of the problems. High information needs were present for physical complaints and for vaccination issues. Little information seeking behavior was evident for unhealthy lifestyles, falls, limitations in daily activities and psychosocial problems. In the mixed model the personal relevance and the type of health problem both had a significant and independent effect on information seeking behavior. CONCLUSION: A geriatric assessment generates a moderate need for information. It provides physicians with an opportunity to focus on those health problems that are important to older patients but not usually addressed in normal consultations. This particularly applies to limitations in daily activities and psychosocial problems.

Communicating the benefits and harms of colorectal cancer screening needed for an informed choice: a systematic evaluation of leaflets and booklets.

OBJECTIVE: Evidence-based health information (EBHI) can support informed choice regarding whether or not to attend colorectal cancer (CRC) screening. The present study aimed to assess if German leaflets and booklets appropriately inform consumers on the benefits and harms of CRC screening. METHODS: A systematic search for print media on CRC screening was performed via email enquiry and internet search. The identified documents were assessed for the presence and correctness of information on benefits and harms by two reviewers independently using a comprehensive list of criteria. RESULTS: Many of the 28 leaflets and 13 booklets identified presented unbalanced information on the benefits and harms of CRC screening: one-third did not provide any information on harms. Numeracy information was often lacking. Ten cross-language examples of common misinterpretations or basically false and misleading information were identified. DISCUSSION: Most of the CRC screening leaflets and booklets in Germany do not meet current EBHI standards. After the study, the publishers of the information materials were provided feedback, including a discussion of our findings. The results can be used to revise existing information materials or to develop new materials that provide correct, balanced, quantified, understandable and unbiased information on CRC screening.

Complex health care decisions with older patients in general practice: patient-centeredness and prioritization in consultations following a geriatric assessment.

OBJECTIVE: To examine to what extent general practitioners in consultations after a geriatric assessment set shared health priorities with older patients experiencing multimorbidity and to what extent this was facilitated through patient-centered behavior. METHODS: Observation of consultations embedded in a cluster randomized controlled trial,(1) in which 317 patients from 41 general practices received the STEP assessment followed by a care planning consultation with their GPs. GPs in the intervention group used a structured procedure for setting health (care) priorities in contrast to control GPs. A sample of 43 consultations (24 intervention; 19 control) were recorded, transcribed and analyzed with regard to priority setting and patient-centeredness. RESULTS: Patient-centeredness was only moderately apparent in consultations dealing with complex care plans for older patients with multimorbidity. The shared determination of health priorities seemed unusual for both doctors and patients and was rarely practiced, albeit more frequently in intervention consultations. CONCLUSION: Setting health care priorities with patients experiencing multimorbidity is ethically desirable and medically appropriate. Yet a short structured guide for doctors cannot easily achieve this. PRACTICE IMPLICATIONS: More research is needed in regard to handling complex health needs of older patients. It requires a professional approach and training in patient-centered holistic care planning.

Impact of a priority-setting consultation on doctor-patient agreement after a geriatric assessment: cluster randomised controlled trial in German general practices.

BACKGROUND: General Practitioners (GPs) often have to simultaneously tackle multiple health problems of older patients. A patient-centred process that engages the patient in setting health priorities for treatment is needed. We investigated whether a structured priority-setting consultation reconciles the often-differing doctor-patient views on the importance of problems. DESIGN: Cluster randomised controlled trial with 40 GPs and their 317 consecutively recruited older patients. PROCEDURE: Following a geriatric assessment, patients and doctors independently rated the importance of each uncovered problem. GPs then selected priorities with their patients in a consultation. Trained intervention GPs held a structured consultation and utilised the list of uncovered patient problems with their importance ratings to agree priorities. Untrained control GPs only used the patient's problem list without importance ratings. MAIN OUTCOME: Doctor-patient agreement on independent importance ratings two weeks after the priority-setting consultation. ANALYSIS: Weighted kappa (κw) and multilevel logistic regression model. RESULTS: Intervention GPs and their patients determined mutual priorities for 20% of individual problems. In this process, GPs often succeeded in convincing their patients of the importance of vaccinations, lifestyle and cognitive issues. Likewise, patients convinced their GPs to prioritise their social and functional problems. Further treatment plans ensued in 84% of these priority areas. The regression model adjusting for clusters and baseline characteristics did not demonstrate significant differences in doctor-patient agreement on problems between groups a two weeks later. CONCLUSION: Differing views on the importance of health problems between GPs and older patients were not sustainably reconciled. The special consultation facilitated identification of priority problems for treatment despite differences in perceived importance of problems between patients and GPs. German clinical trials register drks 00000792.

Patient satisfaction in pediatric outpatient settings from the parents' perspective - the Child ZAP: a psychometrically validated standardized questionnaire.

BACKGROUND: Patient surveys constitute a valuable source of information in patient-focused health care. The objective of this study was to develop and validate a standardized, patient centered, quantitative instrument to assess parent satisfaction in ambulatory pediatric care to be used in quality management and benchmarking activities, the Child-ZAP. METHODS: A preliminary version of the survey (38 items) was conducted in n = 19 pediatric practices. After psychometric testing a modified Child-ZAP was tested in a second survey (n = 20 new pediatric practices). Data from n = 979 patients were available for analysis. RESULTS: The final version of the Child-ZAP contains eight dimensions, three "Child-Scales" and five "Parent-Scales". Confirmatory factor analysis confirms the three hypothesized child dimensions as well as the five parent dimensions. The factorial structure is confirmed in subgroups of younger and older children. CONCLUSIONS: With satisfactory to good results for validity and reliability testing, the final Child-ZAP is applicable in pediatric ambulatory care for children of all age groups.

What is important, what needs treating? How GPs perceive older patients' multiple health problems: a mixed method research study.

BACKGROUND: GPs increasingly deal with multiple health problems of their older patients. They have to apply a hierarchical management approach that considers priorities to balance competing needs for treatment. Yet, the practice of setting individual priorities in older patients is largely unexplored. This paper analyses the GPs' perceptions on important and unimportant health problems and how these affect their treatment. METHODS: GPs appraised the importance of health problems for a purposive sample of their older patients in semi-structured interviews. Prior to the interviews, the GPs had received a list of their patients' health problems resulting from a geriatric assessment and were asked to rate the importance of each identified problem. In the interviews the GPs subsequently explained why they considered certain health problems important or not and how this affected treatment. Data was analysed using qualitative content analysis and quantitative methods. RESULTS: The problems GPs perceive as important are those that are medical and require active treatment or monitoring, or that induce empathy or awareness but cannot be assisted further. Unimportant problems are those that are well managed problems and need no further attention as well as age-related conditions or functional disabilities that provoke fatalism, or those considered outside the GPs' responsibility. Statements of professional actions are closely linked to explanations of important problems and relate to physical problems rather than functional and social patient issues. CONCLUSIONS: GPs tend to prioritise treatable clinical conditions. Treatment approaches are, however, vague or missing for complex chronic illnesses and disabilities. Here, patient empowerment strategies are of value and need to be developed and implemented. The professional concepts of ageing and disability should not impede but rather foster treatment and care. To this end, GPs need to be able to delegate care to a functioning primary care team. TRIAL REGISTRATION: German Trial Register (DRKS): 00000792.

Priority setting in general practice: health priorities of older patients differ from treatment priorities of their physicians.

AIM: To ascertain health priorities of older patients and treatment priorities of their general practitioners (GP) on the basis of a geriatric assessment and to determine the agreement between these priorities. METHODS: The study included a sample of 9 general practitioners in Hannover, Germany, and a stratified sample of 35 patients (2-5 patients per practice, 18 female, average age 77.7 years). Patients were given a geriatric assessment using the Standardized Assessment for Elderly Patients in Primary Care (STEP) to gain an overview of their health and everyday problems. On the basis of these results, patients and their physicians independently rated the importance of each problem disclosed by the assessment. Whereas patients assessed the importance for their everyday lives, physicians assessed the importance for patients' medical care and patients' everyday lives. RESULTS: Each patient had a mean ± standard deviation of 18 ± 9.2 health problems. Thirty five patients disclosed a total of 634 problems; 537 (85%) were rated by patients and physicians. Of these 537 problems, 332 (62%) were rated by patients and 334 (62%) by physicians as important for patients' everyday lives. In addition, 294 (55%) were rated by physicians as important for patients' medical care. Although these proportions of important problems were similar between patients and physicians, there was little overlap in the specific problems that each group considered important. The chance-corrected agreement (Cohen κ) between patients and physicians on the importance of problems for patients' lives was low (κ=0.23). Likewise, patients and physicians disagreed on the problems that physicians considered important for patients' medical care (κ=0.18, P<0.001 for each). CONCLUSION: The low agreement on health and treatment priorities between patients and physicians necessitates better communication between the two parties to strengthen mutual understanding.

The federal government commissioner for patient issues in Germany: initial analysis of the user inquiries.

BACKGROUND: The political objective in many countries worldwide is to give better consideration to the interests of patients within the health system. The establishment of a federal government commissioner for the issues of patients in the health system in Germany in 2004 is part of these endeavours. The structure and field of activities of this institution has been unique so far. This study investigates for the first time the inquiries the commissioner receives from the public. METHODS: A 33% sampling (n = 850) of the written inquiries (correspondence and e-mails) addressed to the commissioner in the first six months of the year 2005 (n = 2580) was investigated. In a procedure comprising combined qualitative and quantitative levels, the material was thematically encoded and the inquiries allocated to the resulting categories (multiple nominations). The results are presented in descriptive form and investigated especially with respect to sex and age-specific differences. The interdependences between the categorized criteria are analysed. RESULTS: The inquirers are equally spread out amongst the sexes (49% women, 51% men). Older persons outweigh the younger (69% over 60 years). In most cases the issues take the form of claims (72%, n = 609). In every fifth inquiry (n = 168) the personal financial burden for health services is considered as being too high; about equally high (n = 159) is the proportion of persons who criticize the communication with health professionals, especially hospitals and doctors' surgeries. Every third who mentions a medical practice uses terms such as "uncertainty" and "anxiety". It is conspicuous that men more often than women write that they feel unfairly treated in the health system (62% vs. 38%, p < 0.05). CONCLUSION: Predominantly older persons seek the assistance of the federal government commissioner for patient issues. Considerable uncertainty and anxiety with respect to services and charges within the system of the German health insurances become evident. It is not possible from the data to draw conclusions concerning the impact of the commissioner's work on the health system. Nor do we gain any knowledge about the usefulness of the service for the individual. Therefore, evaluation of the political impact and the user satisfaction should follow.

[Patient and consumer information centres according to 65b Social Security Code V--means for high-quality information exchange and counselling]. / Patienten- und Verbraucherberatungsstellen nach 65b SGB V--Wege zu einer qualitativ hochwertigen Informationsvermittlung und Beratung.

Counsellors of Independent Health Information Centres according to 65b Social Security Code V provide the public with comprehensive information on health and disease-related themes, as well as on their financial, service, and legal aspects; they also provide extensive counselling and psychosocial support. The counsellors mostly have a university background in educational, social, medical, or legal disciplines; they usually have long-term experience in counselling as well as additional professional qualifications. In addition to the provision of information, independent health information centres must also be active in assuring and promoting their own quality control. Different measures are applied for this purpose, however at this time there are no standardised, high-quality activities of the independent health information centres to ensure quality.