Management komplexer Behandlungsbedarfe durch Patientenlotsen – eine qualitative Studie zur Erfassung des Status quo in der GKV

Brandt, Florian; Salm, Frederike

doi:10.1055/a-1652-9623

Cited by 4 publications

(3 citation statements)

References 16 publications

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“…This supports the need for establishing structures to unburden patients and caregivers from long distance travelling and being responsible for organizing their own healthcare [ 27 ]. This unmet need has already been recognized for some rare disease groups and resulted in pilot projects aiming to transfer patient guides to standard care in Germany [ 30 ]. The patient guides work as case managers and significantly improve the situation for people with the disease.…”

Section: Discussionmentioning

confidence: 99%

“…The patient guides work as case managers and significantly improve the situation for people with the disease. They act as contact persons, mediators and coordinators within the respective facility, organize interdisciplinary consultations, guide the patient to the appropriate services and take over interface communication with the outpatient sector [ 30 ]. Similarly, the project Innovcare ( https://innovcare.eu ) developed a holistic care pathway to enable coordination between “health, social and local services to improve care”, which has been piloted in Romania and showed particular impact on patient’s empowerment, information and self-confidence ( https://innovcare.eu/wp-content/uploads/2018/12/INNOVCare_WP7_Evaluation-report_final-version.pdf ).…”

Section: Discussionmentioning

confidence: 99%

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Patient experiences of interprofessional collaboration and intersectoral communication in rare disease healthcare in Germany – a mixed-methods study

Inhestern,

Otto,

Brandt

et al. 2024

Orphanet J Rare Dis

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Background Rare diseases are often complex, chronic and many of them life-shortening. In Germany, healthcare for rare diseases is organized in expert centers for rare diseases. Most patients additionally have regional general practicioners and specialists for basic medical care. Thus, collaboration and information exchange between sectors is highly relevant. Our study focuses on the patient and caregiver perspective on intersectoral and interdisciplinary care between local healthcare professionals (HCPs) and centers for rare diseases in Germany. The aims were (1) to investigate patients’ and caregivers’ general experience of healthcare, (2) to analyse patients’ and caregivers’ perception of collaboration and cooperation between local healthcare professionals and expert centers for rare diseases and (3) to investigate patients’ and caregivers’ satisfaction with healthcare in the expert centers for rare diseases. Results In total 299 individuals of whom 176 were patients and 123 were caregivers to pediatric patients participated in a survey using a questionnaire comprising several instruments and constructs. Fifty participants were additionally interviewed using a semistructured guideline. Most patients reported to receive written information about their care, have a contact person for medical issues and experienced interdisciplinary exchange within the centers for rare diseases. Patients and caregivers in our sample were mainly satisfied with the healthcare in the centers for rare diseases. The qualitative interviews showed a rather mixed picture including experiences of uncoordinated care, low engagement and communication difficulties between professionals of different sectors. Patients reported several factors that influenced the organization and quality of healthcare e.g. engagement and health literacy in patients or engagement of HCPs. Conclusions Our findings indicate the high relevance of transferring affected patients to specialized care as fast as possible to provide best medical treatment and increase patient satisfaction. Intersectoral collaboration should exceed written information exchange and should unburden patients of being and feeling responsible for communication between sectors and specialists. Results indicate a lack of inclusion of psychosocial aspects in routine care, which suggests opportunities for necessary improvements.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

Patient experiences of interprofessional collaboration and intersectoral communication in rare disease healthcare in Germany – a mixed-methods study

Inhestern,

Otto,

Brandt

et al. 2024

Orphanet J Rare Dis

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“…Die BMC-Lotsenlandkarte gibt hierüber eine Übersicht (BMC e. V., Online). In einer projektübergreifenden qualitativen Studie wurde gezeigt, dass diese Lotsenkonzepte sich in wesentlichen Aspekten unterscheiden können, die über die Modellregion und die krankheitsspezifische Zielgruppe hinausgehen (Brandt/Salm 2022)…”

Section: Keine Generalisierbarkeit Projektspezifischer Erkenntnisseunclassified

Projekttransfer auf Basis systematischer Übersichtsarbeiten – Konzept zur Weiterentwicklung des Innovationsfonds

Brandt¹

2022

MVF

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Patient information, communication and competence empowerment in oncology: Results and learnings from the PIKKO study

Schneider,

Bäcker,

Strauss

et al. 2023

Support Care Cancer

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Purpose Many concepts for accompanying and supporting cancer patients exist and have been studied over time. One of them was PIKKO (a German acronym for “Patient information, communication and competence empowerment in oncology”), which combined a patient navigator, socio-legal and psychological counseling (with psychooncologists), courses dealing with various supportive aspects, and a knowledge database with validated and easy-to-understand disease-related information. The aim was to increase the patients' health-related quality of life (HRQoL), self-efficacy as well as health literacy and to reduce psychological complaints such as depression and anxiety. Methods To this purpose, an intervention group was given full access to the modules in addition to treatment as usual, while a control group received only treatment as usual. Over twelve months, each group was surveyed up to five times. Measurements were taken using the SF12, PHQ-9, GAD, GSE, and HLS-EU-Q47. Results No significant differences were found in scores on the mentioned metrics. However, each module was used many times and rated positively by the patients. Further analyses showed a tendency higher score in health literacy with higher intensity of use of the database and higher score in mental HRQoL with higher intensity of use of counseling. Conclusion The study was affected by several limitations. A lack of randomization, difficulties in recruiting the control group, a heterogeneous sample, and the COVID-19 lockdown influenced the results. Nevertheless, the results show that the PIKKO support was appreciated by the patients and the lack of measurable effects was rather due to the mentioned limitations than to the PIKKO intervention. Trial registration This study was retrospectively registered in the German Clinical Trial Register under DRKS00016703 (21.02.2019, retrospectively registered). https://www.drks.de/drks_web/navigate.do?navigationId=trial.HTML&TRIAL_ID=DRKS00016703

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Management komplexer Behandlungsbedarfe durch Patientenlotsen – eine qualitative Studie zur Erfassung des Status quo in der GKV

Cited by 4 publications

References 16 publications

Patient experiences of interprofessional collaboration and intersectoral communication in rare disease healthcare in Germany – a mixed-methods study

Patient experiences of interprofessional collaboration and intersectoral communication in rare disease healthcare in Germany – a mixed-methods study

Projekttransfer auf Basis systematischer Übersichtsarbeiten – Konzept zur Weiterentwicklung des Innovationsfonds

Patient information, communication and competence empowerment in oncology: Results and learnings from the PIKKO study

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