Establishing a standing patient advisory board in family practice research: A qualitative evaluation from patients' and researchers' perspectives.

INTRODUCTION: Patient and public involvement is vital for high-quality research. Integrating patients' and providers' perspectives early in research enhances the feasibility and relevance of study results. Within our family practice-based research network ForN, we established a standing patient advisory board (PAB) to include patients with diverse conditions and experiences. In this paper, we aim to describe the establishment and functioning of a standing PAB in family medicine research from patients' and researchers' perspectives. METHODS: After each PAB meeting, patients and researchers were asked to name anonymously positive and challenging moments in a feedback form with open questions. Researchers were also asked to reflect on how they implemented the discussion content in their research projects. The responses from both groups were transferred to MAXQDA 2018 and analyzed separately using thematic analysis. RESULTS: We analyzed 40 feedback forms from patients and 14 feedback forms from researchers. The dominant theme in the patients' feedback was 'exchange': They positively emphasized the 'exciting and open discussions' and the exchange of perspectives with one another and researchers. The clarity of the researchers' presentations and the research topics were appreciated. Researchers also positively highlighted the open atmosphere of the discussions. Presenting their research to the PAB helped most researchers reflect on their research topics from patients' perspectives and implement changes. However, researchers also mentioned several barriers to the implementation of PAB members' feedback. CONCLUSION: The establishment of a standing PAB in family practice research is feasible and productive both from patients' and researchers' perspectives. PATIENT OR PUBLIC CONTRIBUTION: This study reports the evaluation of the establishment of a standing PAB in family practice research. Board members are involved in the design of studies, the co-production of interventions and information material, and the interpretation of data.

[Specialized outpatient palliative care for children, adolescents, and their families-the special needs of the target group. Results of the ELSAH study]. / Spezialisierte ambulante Palliativversorgung für Kinder, Jugendliche und ihre Familien ­ die besonderen Belange der Zielgruppe. Ergebnisse der ELSAH-Studie.

BACKGROUND AND AIM: Children and adolescents with life-limiting conditions and complex symptoms are eligible for specialized outpatient palliative care (SOPC). The SOPC guideline in Germany solely states: "The special needs of children and adolescents shall be considered." This study aims to identify these special needs and to develop recommendations for a revision of the SOPC guideline. METHODS: We used a sequential mixed-methods design including surveys, qualitative interviews, participant observations, and focus group discussions with relatives, patients, and team members of the SOPC in Hesse, Germany. Furthermore, we analyzed documentation data of the Hessian SOPC teams. RESULTS: Children and adolescents in SOPC suffer from complex and often rare diseases. They need elaborate palliative care delivered by a team with pediatric expertise. SOPC must include the whole family and coordinate healthcare providers that are stretched regionally. Furthermore, patients and relatives need elaborate psychosocial care. SOPC for children and adolescents is less well-known than SOPC for adults, and access for families is often difficult. There is a healthcare gap for children and adolescents with life-limiting diseases who need palliative care at home but not of the intensive kind provided by SOPC. CONCLUSIONS: SOPC for children, adolescents, and adults who have been diseased since their childhood and adolescence must be delivered within an independent structure, including a reimbursement scheme that takes the special care efforts for this patient group into consideration.

RubiN - continuous care in regional networks: a study protocol for a prospective controlled trial.

BACKGROUND: The health care situation of geriatric patients is often multifaceted, complex and often overlaps with social living conditions. Due to the lack of cross-sectoral and interprofessional health care geriatric patients often, receive insufficient care. Only a holistic view enables a comprehensive evaluation of the complex health risks, but also the potential to preserve the health of geriatric patients. The implementation of cross-sectoral, multi-professional case management could reduce the gaps in care, improve the autonomy of the geriatric patients in their own homes, and allow them to retain it as long as possible. The "RubiN" project examines the effects of multi-professional, cross-sectoral and assessment-based case management on the quality of the care of geriatric patients. The results of the study aim to show whether geriatric patients receive better care using case management than patients who receive standard health care. In addition, data on the effects of case management on practices of general practitioners (GP), the satisfaction with the care concept amongst the case managers, patients and relatives will be collected. Furthermore, a health economic analysis will be carried out. METHODS: The project is designed as a prospective controlled study and compares geriatric patients from practice networks in different regions in Germany. Inclusion criteria are: Age ≥ 70 years and care requirements from two different care complexes (identified with the screening instrument 'Angelina'-questionnaire). The intervention is the use of a geriatric case management, where health care is organised based on patient-specific care requirements. Five practice networks of physicians will implement the intervention (n = 3200 patients) and three practice networks will serve as the control group (n = 1200 patients). The primary endpoint is the ability to manage activities of daily living, measured using the Barthel Index. The patients in the intervention group receive geriatric case management and the patients in the control networks receive standard care ("care as usual"). The analysis of the primary data, which is pseudonymised, occurs according to the intention-to-treat principle. For this purpose, the endpoints will be analysed using a group comparison after 12 months. For the health economic analysis, secondary data from the statutory health insurance providers will be included in the analysis, in addition to the primary data. Data for the analysis of the effects the concept has on the GP practices as well as on the satisfaction of the project participants will be collected with questionnaires and interviews with experts. DISCUSSION: The implementation of cross-sectoral and interdisciplinary geriatric case management has been a topic of discussion for years, whereby positive effects have already been-shown. This planned study will be the first evaluation of the effect of case management for geriatric patients with a very large sample. In addition, the effects of case management on the GP practices and also on the relatives of the geriatric patients will be shown. It is intended that the study results pave the way for a widespread implementation of this concept. TRIAL REGISTRATION: German Clinical Trials Register, ID: DRKS00016642 . Registered on 29 October 2019 - Retrospectively registered.

[Coordinated primary care of older patients with complex needs. The perspective of family doctors in the light of a case management project within practice networks of independent physicians in Germany]. / Koordinierte Versorgung geriatrischer Patientinnen und Patienten aus ärztlicher Sicht: Erfahrungen aus einem kontrollierten Modellversuch in zertifizierten Praxisnetzen.

BACKGROUND: Cross-sectoral and interdisciplinary care and case management can contribute to an improved integration of the primary care for patients with geriatric characteristics. Following this approach, the pilot study RubiN (Regional ununterbrochen betreut im Netz / Continuous Care in Regional Networks) implemented a specific geriatric Care and Case Management (CCM) in five certified practice networks of independent physicians in different regions in Germany. As part of the accompanying process-based evaluation of the project, a survey was conducted among general practitioners and other specialists from these networks in order to find out how, in their view, collaboration with case managers can improve medical care of geriatric patients and contribute to closing possible gaps in primary care structures. METHODS: The overall project RubiN, which was designed as a pragmatic controlled trial, compared patients from five practice networks where CCM has been implemented (intervention networks), with patients from three networks where the intervention was not taking place (control networks). Physicians of all eight participating practice networks were included in the present survey. The survey was conducted via a self-developed questionnaire. RESULTS: A total of 111 physicians participated in the survey, 76 of whom were part of an intervention network and 35 part of a control network. The calculated response rate was 15.4% (networks reported a total of approx. 720 members). 91,1% of the participants from intervention networks, who had joined RubiN with their patients, reported satisfaction with their collaboration with case managers (n=41 of 45). 87.0% of the physicians from intervention networks stated that care for geriatric patients had improved as a result of their participation in the pilot study (n=40 of 46). When asked about the overall quality of care provided for their geriatric patients, the assessments of participants from intervention networks were more positive than those of the participants from control networks (MV 3.48 vs. 3.27 on a scale of 1=poor to 5=very good). Agreement with whether external case managers could provide certain services was higher among participants from intervention networks compared to participants from control networks. This was the case, in particular, of services related to medical data collection and test procedures. Overall, both comparison groups showed a high level of willingness to delegate tasks to a CCM. DISCUSSION: Delegation of tasks to geriatric case managers seems to be more readily accepted by physicians in intervention networks than by their colleagues from the control networks, especially as regards medical assessment methods and advanced advisory tasks. The results suggest that interventions in this domain were able to convince physicians of the value that case managers can bring to medical practice and help resolve reservations and skepticism. Especially, the implemented CCM seemed to be an effective way of generating geriatric anamnestic data and fostering the flow of general patient-centered information. CONCLUSION: From the point of view of general practitioners and other specialists participating in the intervention, CCM has been successfully implemented in their practice networks and seems to be a worthwhile approach that will help provide better coordinated and more team-oriented care to their geriatric patients.

[Implementing a secure instant messaging app in the COVID-19 pandemic: Usage experiences of primary care physicians and local health authorities]. / Implementierung einer Secure Instant Messaging-App in der COVID-19 Pandemie: Nutzungserfahrungen von Hausärzt*innen und Mitarbeiter*innen von Gesundheitsämtern.

BACKGROUND: At the onset of the COVID-19 pandemic general practitioners complained about feeling uninformed and lacking a sufficient flow of information from the local health authorities. Secure instant messaging describes a digital, chat-based form of communication enabling ambulatory care providers to connect in real-time and share information across medial sectors. KomPan, a proof-of-concept study, established a secure instant messaging structure in two model regions in Germany to improve communication between general practitioners and local health authorities via an additional communication pathway. This paper presents results of a qualitative user survey. METHODS: We recruited general practitioners (n = 43) and staff of local health authorities (n=10) in two Hessian model regions for using the secure instant messaging (SIM) app of the Famedly GmbH, starting in December 2020 (2nd COVID-19 wave). We asked participants to share their usage experiences after a usage time of multiple months. In guided telephone interviews, we primarily asked how communication between the two user groups had changed while using secure instant messaging. The interviews were transcribed verbatim and analysed using thematic analysis. RESULTS: We conducted ten interviews with general practitioners and two with staff of the participating local health authorities. Using our SIM-based platform promoted professional exchange between general practitioners. In contrast, the app had little impact on communication between local health authorities and general practitioners. Opposing expectations and usage patterns of the two user groups, among other reasons, probably led to a reduced direct trans-sectoral communication via secure instant messaging. CONCLUSION: Establishing local chat groups for general practitioners was welcomed, especially during the pandemic situation, to improve professional exchange while experiencing challenging working conditions. To use secure instant messaging effectively for trans-sectoral communication a more comprehensive approach seems to be needed, such as digitalisation of institutional communication structures and improved networks of local healthcare providers.

Specialised outpatient paediatric palliative care team-parent collaboration: narrative interviews with parents.

OBJECTIVE: In Germany, children with life-limiting conditions and complex symptoms are eligible for specialised outpatient palliative care (SOPC). In the federal state of Hesse, SOPC for children (SOPPC) is delivered by teams with paediatric expertise. While burdened by the life-limiting condition of their child, parents must also fulfill their roles as main care providers and decision makers. Collaboration between parents and SOPPC teams is important, as the intermittent care and uncertainty it entails often lasts for several months or years. We explored parents' experiences and their demands of collaboration with SOPPC teams. METHODS: We conducted nine narrative interviews with 13 parents of children and adolescents with life-limiting conditions and used a grounded theory approach to analyse interview data. RESULTS: Parents stressed the importance of paediatric expertise, honesty, psychosocial support, an individualised approach, experience of self-efficacy and the need to be recognised as experts for their children. The narrative interviews showed that collaboration between parents and SOPPC teams was characterised by parents' need for specialised professional assistance and their simultaneous empowerment by SOPPC teams. CONCLUSIONS: Parents' perceptions of what good collaboration with SOPPC teams entails are manifold. To meet these complex needs, SOPPC requires time and specialised expertise.

Parents' Perspectives on Hospital Care for Children and Adolescents with Life-Limiting Conditions: A Grounded Theory Analysis of Narrative Interviews.

Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care teams. However, teams with specific expertise for children are not available all over the country. Families without this support need to use the hospital to get specialists' assistance. Objective: To explore how parents of children and adolescents with life-limiting conditions think about the hospital as place of care. Design: We conducted narrative interviews with parents and analyzed these by using a grounded theory approach. Setting/Subjects: We interviewed 13 parents (4 fathers and 9 mothers) of 9 children with life-limiting conditions receiving or having received pediatric specialized outpatient palliative care (SOPPC) in Germany. Results: Parents reported feelings of vulnerability, heteronomy, and disablement associated with hospital care and were afraid that their children's needs were not adequately addressed. These perceptions resulted from hospitals' standardized care structures and over- and undertreatment, a lack of continuity of care, hospital pathogens, a lack of a palliative mindset, insensitive hospital staff, the exclusion of parents from the treatment and parental care of their children, the hospital stay as a permanent state of emergency, and a waste of limited life time. Conclusion: Pediatric hospital staff needs training in identifying and responding to palliative care needs. SOPPC structures should be expanded all over Germany to meet the needs of families of children with life-limiting conditions.