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This dynamic cohort was established to evaluate the targeted individual promotion of children affected by developmental risks as part of the German federal state law for child day-care and preschools in Mecklenburg-Western Pomerania. The project has been conducted in preschools in regions with a low socio-economic profile since 2011. Since 2017, the revision of the standardized Dortmund Developmental Screening for Preschools (DESK 3–6 R) has been applied. Developmental risks of 3 to 6-year-old children in the domains of motor, linguistic, cognitive and social competencies are monitored. The cohort is followed up annually. In 2020, n = 7,678 children from n = 152 preschools participated. At the baseline (2017), n = 8,439 children participated. Due to the defined age range of this screening, 3,000 to 4,000 5-6-year-old children leave the cohort annually. Simultaneously, an approximately equal number of 3-year-old children enters the cohort per survey wave. N = 702 children participated in all 4 survey waves. On the basis of DESK 3–6 R scores available from survey waves 2017 to 2019 it is possible to compute expected values for the survey wave 2020 and to compare those with the measured values to evaluate the effects of the COVID-19 pandemic (i.e. parental home care due to restrictions related to COVID-19).
Introduction
In response to the COVID-19 pandemic, a general lockdown was enacted across Germany in March 2020. As a consequence, patients with mental health conditions received limited or no treatment in day hospitals and outpatient settings. To ensure continuity of care, the necessary technological preparations were made to enable the implementation of telemedical care via telephone or video conferencing, and this option was then used as much as possible. The aim of this study was to investigate the satisfaction and acceptance with telemedical care in a heterogeneous patient group of psychiatric outpatients in Germany during the first COVID-19 lockdown.
Methods
In this observational study, patients in ongoing or newly initiated outpatient psychiatric therapy as well as those who had to be discharged from the day clinic ahead of schedule received telemedical treatment via telephone. Data collection to assess the patients’ and therapists’ satisfaction with and acceptance of the telemedical care was adjusted to the treatment setting.
Results
Of 60 recruited patients, 57 could be included in the analysis. 51.6% of the patients and 52.3% of their therapists reported that the discussion of problems and needs worked just as well over the phone as in face-to-face consultations. In the subgroup of patients who were new to therapy due to being discharged from hospital early, acceptance was higher and telemedicine was rated as equally good in 87.5% of contacts. Both patients and therapists felt that telemedicine care during lockdown was an alternative for usual therapy in the outpatient clinic and that the option of telemedicine care should continue for the duration of the coronavirus pandemic.
Discussion
The results show a clear trend towards satisfaction with and acceptance of telemedicine care in a heterogeneous group of unselected psychiatric patients. Although the number of patients is small, the results indicate that the mostly positive results of telemedicine concepts in research projects can probably be transferred to real healthcare settings.
Conclusions
Telemedicine can be employed in healthcare for psychiatric patients either an alternative treatment option to maintain continuity of care or as a potential addition to regular care.
Background
The Federal Ministry of Education and Research of Germany (BMBF) funds a network of university medicines (NUM) to support COVID-19 and pandemic research at national level. The “COVID-19 Data Exchange Platform” (CODEX) as part of NUM establishes a harmonised infrastructure that supports research use of COVID-19 datasets. The broad consent (BC) of the Medical Informatics Initiative (MII) is agreed by all German federal states and forms the legal base for data processing. All 34 participating university hospitals (NUM sites) work upon a harmonised infrastructural as well as legal basis for their data protection-compliant collection and transfer of their research dataset to the central CODEX platform. Each NUM site ensures that the exchanged consent information conforms to the already-balloted HL7 FHIR consent profiles and the interoperability concept of the MII Task Force “Consent Implementation” (TFCI). The Independent Trusted Third-Party (TTP) of the University Medicine Greifswald supports data protection-compliant data processing and provides the consent management solutions gICS.
Methods
Based on a stakeholder dialogue a required set of FHIR-functionalities was identified and technically specified supported by official FHIR experts. Next, a “TTP-FHIR Gateway” for the HL7 FHIR-compliant exchange of consent information using gICS was implemented. A last step included external integration tests and the development of a pre-configured consent template for the BC for the NUM sites.
Results
A FHIR-compliant gICS-release and a corresponding consent template for the BC were provided to all NUM sites in June 2021. All FHIR functionalities comply with the already-balloted FHIR consent profiles of the HL7 Working Group Consent Management. The consent template simplifies the technical BC rollout and the corresponding implementation of the TFCI interoperability concept at the NUM sites.
Conclusions
This article shows that a HL7 FHIR-compliant and interoperable nationwide exchange of consent information could be built using of the consent management software gICS and the provided TTP-FHIR Gateway. The initial functional scope of the solution covers the requirements identified in the NUM-CODEX setting. The semantic correctness of these functionalities was validated by project-partners from the Ludwig-Maximilian University in Munich. The production rollout of the solution package to all NUM sites has started successfully.
Background
Person-Centered-Care (PCC) requires knowledge about patient preferences. Among People-living-with-Dementia (PlwD) data on quantitative, choice-based preferences, which would allow to quantify, weigh and rank patient-relevant elements of dementia-care, and identify most/least preferred choices, are limited. The Analytic-Hierarchy-Process (AHP) may be one approach to elicit quantitative, choice-based preferences with PlwD, due to simple pairwise comparisons of individual criteria from a complex decision-problem, e.g. health care decisions. Furthermore, data on congruence of patient preferences with physicians’ judgements for PCC are missing. If patient preferences and physicians’ judgements differ, provision of PCC becomes unlikely. An understanding of patient preferences compared to physician’s judgements will support the implementation of truly PCC, i.e. state of the art dementia-care aligned with patient preferences.
Methods
This mixed-methods-study will be based on the results from a previous systematic review and conducted in three phases: (I) literature-based key intervention-categories of PCC will be investigated during qualitative interviews with Dementia-Care-Managers (DCMs) and PlwD to identify actually patient-relevant (sub) criteria of PCC; (II) based on findings from phase I, an AHP-survey will be designed and pre-tested for face- and content-validity, and consistency during face-to-face “thinking-aloud”-interviews with PlwD and two expert panels (DCMs and physicians); (III) the developed survey will elicit patient preferences and physicians’ judgements for PCC. To assess individual importance weights for (sub) criteria in both groups, the Principal-Eigenvector-Method will be applied. Weights will be aggregated per group by Aggregation-of-Individual-Priorities-mode. Descriptive and interferential statistical analyses will be conducted to assess congruence of importance-weights between groups. Subgroup-analyses shall investigate participant-heterogeneities, sensitivity of AHP-results shall be tested by inclusion/exclusion of inconsistent respondents.
Discussion
Little research is published on quantitative, choice-based preferences in dementia care. We expect that (1) PlwD have preferences and can express these, (2) that the AHP is a suitable technique to elicit quantitative, choice-based preferences among PlwD, and (3) to identify a divergence between patient preferences and physicians’ judgements for PCC. With the help of the AHP-technique, which supports systematic decision-making including multiple criteria, it may be possible to involve PlwD in future care decisions (patient participation) and ensure implementation of truly Person-Centered-Dementia-Care.
Trial registration
Approval of the study was granted by the Ethics Committee at the University Medicine Greifswald the 09Apr2021 (Reg.-Nr.: BB 018–21, BB 018-21a, BB 018-21b).
Background
Data collected during routine health care and ensuing analytical results bear the potential to provide valuable information to improve the overall health care of patients. However, little is known about how patients prefer to be informed about the possible usage of their routine data and/or biosamples for research purposes before reaching a consent decision. Specifically, we investigated the setting, the timing and the responsible staff for the information and consent process.
Methods
We performed a quasi-randomized controlled trial and compared the method by which patients were informed either in the patient admission area following patient admission by the same staff member (Group A) or in a separate room by another staff member (Group B). The consent decision was hypothetical in nature. Additionally, we evaluated if there was the need for additional time after the information session and before taking the consent decision. Data were collected during a structured interview based on questionnaires where participants reflected on the information and consent process they went through.
Results
Questionnaire data were obtained from 157 participants in Group A and 106 participants in Group B. Overall, participants in both groups were satisfied with their experienced process and with the way information was provided. They reported that their (hypothetical) consent decision was freely made. Approximately half of the interested participants in Group B did not show up in the separate room, while all interested participants in Group A could be informed about the secondary use of their routine data and left-over samples. No participants, except for one in Group B, wanted to take extra time for their consent decision. The hypothetical consent rate for both routine data and left-over samples was very high in both groups.
Conclusions
The willingness to support medical research by allowing the use of routine data and left-over samples seems to be widespread among patients. Information concerning this secondary data use may be given by trained administrative staff immediately following patient admission. Patients mainly prefer making a consent decision directly after information is provided and discussed. Furthermore, less patients are informed when the process is organized in a separate room.
Background
The care of palliative patients takes place as non-specialized and specialized care, in outpatient and inpatient settings. However, palliative care is largely provided as General Outpatient Palliative Care (GOPC). This study aimed to investigate whether the survival curves of GOPC patients differed from those of the more intensive palliative care modalities and whether GOPC palliative care was appropriate in terms of timing.
Methods
The study is based on claims data from a large statutory health insurance. The analysis included 4177 patients who received palliative care starting in 2015 and who were fully insured 1 year before and 1 year after palliative care or until death. The probability of survival was observed for 12 months. Patients were classified into group A, which consisted of patients who received palliative care only with GOPC, and group B including patients who received inpatient or specialized outpatient palliative care. Group A was further divided into two subgroups. Patients who received GOPC on only 1 day were assigned to subgroup A1, and patients who received GOPC on two or more days were assigned to subgroup A2. The survival analysis was carried out using Kaplan-Meier curves. The median survival times were compared with the log-rank test.
Results
The survival curves differed between groups A and B, except in the first quartile of the survival distribution. The median survival was significantly longer in group A (137 days, n = 2763) than in group B (47 days, n = 1424, p < 0.0001) and shorter in group A1 (35 days, n = 986) than in group A2 (217 days, n = 1767, p < 0.0001). The survival rate during the 12-month follow-up was higher in group A (42%) than in group B (11%) and lower in group A1 (38%) than in group A2 (44%).
Conclusions
The results of the analysis revealed that patients who received the first palliative care shortly before death suspected insufficient care, especially patients who received GOPC for only 1 day and no further palliative care until death or 12-month follow-up. Palliative care should start as early as necessary and be continuous until the end of life.
Background
A redistribution of tasks between specialized nurses and primary care physicians, i.e., models of advanced nursing practice, has the potential to improve the treatment and care of the growing number of people with dementia (PwD). Especially in rural areas with limited access to primary care physicians and specialists, these models might improve PwD’s quality of life and well-being. However, such care models are not available in Germany in regular healthcare. This study examines the acceptance, safety, efficacy, and health economic efficiency of an advanced nursing practice model for PwD in the primary care setting in Germany.
Methods
InDePendent is a two-arm, multi-center, cluster-randomized controlled intervention study. Inclusion criteria are age ≥70 years, cognitively impaired (DemTect ≤8) or formally diagnosed with dementia, and living in the own home. Patients will be recruited by general practitioners or specialists. Randomization is carried out at the physicians’ level in a ratio of 1:2 (intervention vs. waiting-control group). After study inclusion, all participants will receive a baseline assessment and a follow-up assessment after 6 months. Patients of the intervention group will receive advanced dementia care management for 6 months, carried out by specialized nurses, who will conduct certain tasks, usually carried out by primary care physicians. This includes a standardized assessment of the patients’ unmet needs, the generation and implementation of an individualized care plan to address the patients’ needs in close coordination with the GP. PwD in the waiting-control group will receive routine care for 6 months and subsequently become part of the intervention group. The primary outcome is the number of unmet needs after 6 months measured by the Camberwell Assessment of Need for the Elderly (CANE). The primary analysis after 6 months is carried out using multilevel models and will be based on the intention-to-treat principle. Secondary outcomes are quality of life, caregiver burden, acceptance, and cost-effectiveness. In total, n=465 participants are needed to assess significant differences in the number of unmet needs between the intervention and control groups.
Discussion
The study will provide evidence about the acceptance, efficacy, and cost-effectiveness of an innovative interprofessional concept based on advanced nursing care. Results will contribute to the implementation of such models in the German healthcare system. The goal is to improve the current treatment and care situation for PwD and their caregivers and to expand nursing roles.