Project Description

Thorsten Langer, MD

E: thorsten.langer@uniklinik-freiburg.de
T: +49 (0)761 270-43442
F: +49 (0)761 270-44460

Medical Center – University of Freiburg
Center for Pediatrics
Department of Neuropediatrics and Muscle Disorders
Mathildenstraße 1
79106 Freiburg
Germany

The Pediatric Healthcare Research Group investigates how social and cultural factors, organizational processes and personal behaviors influence the quality of health care and quality of health. Our group focuses on four main thematic areas:

  • Integration of care across healthcare sectors
  • Patient involvement in treatment and research
  • Family coping strategies in chronic and rare diseases
  • Intersectional care for burdened families
  • Linguistic diversity
  • Interprofessional collaboration.

The goal of our research is to provide evidence on how to improve the quality of care for patients, how to support families and how to overcome inequalities for vulnerable populations.

RESEARCH THEMES

The Pediatric Healthcare Research Group is a multidisciplinary group representing researchers from the fields of pediatrics, psychology and nursing sciences. The group’s work focuses on care processes on the interpersonal and organizational levels (micro- and meso-level) in a variety of settings including children with chronic complex conditions and vulnerable populations.

A particular strength of our group is the combination of a vast experience of clinical care for patients and families with expertise in qualitative and quantitative methodologies. Collaborations with external partners such as the Section for Healthcare Research at the Freiburg University Medical Center, pediatricians in ambulatory settings and patient organizations ensure access to care processes and methodological rigor. We aim to include patients and caregivers in research projects as partners to ensure high levels of patient-centeredness in the research process.

CURRENT PROJECTS

SMA-C+: Development of an IT-supported Case Management for Children with Spinal Muscular Atrophy

We are developing a tailored Case-Management (CM) on the basis of a thorough descriptive study investigating the coordination activities and needs of caregivers and the respective indirect costs. An exploratory, comparative evaluation will be conducted to investigate the effect of the CM on the quality of care integration and health-related quality of life of caregivers.

This project is funded by the German Federal Innovation Fund (Gemeinsamer Bundesausschuss Innovationsfonds).

CARE-FAM-NET

The CARE-FAM-NET project comprises a total of 45 consortium partners from hospitals and scientific institutions working closely together with health insurance providers, self-help organizations and cooperation partners from youth welfare, the education system and federal policy. The common goal is cross-sectoral psychosocial care for children with rare diseases, their siblings and parents at 18 locations in 13 federal states and, ultimately, implementation of this approach as standard care. To this end, the children’s clinics will be networked with a psychosocial care unit and the regional Center for Rare Diseases.

This project is funded by the German Federal Innovation Fund (Gemeinsamer Bundesausschuss Innovationsfonds).

Pediatric Attention to Help

In P.A.T.H we evaluate an intervention to enhance the intersectional care for burdened families with a child aged 0-3 years. In well-child visits we explore the pediatricians´ clinical case finding of families who are exposed to psychosocial risk. By analyzing the motivational talk of trained pediatricians we analyze how the low rate of transference of vulnerable families to the early prevention network can be improved.

Patient Guide Program for Patients with Muscle Disorders

Evaluation of a patient guide program provided by the German Society for Muscle Diseases (Deutsche Gesellschaft für Muskelkranke, DGM) in five muscle centers in Germany. Patient guides are healthcare workers support organization and care for patients with muscle disorders when they visit a muscle center. We evaluate the impact of patient guides’ work on the workload of clinicians and patient satisfaction over 3 years using a mixed methods approach.

Interprofessional Collaboration with Medical Interpreters

Improving the collaboration between interprofessional clinicians and medical interpreters. We evaluate interprofessional educational intervention including an enactment (triad physician, interpreter, patient) using a pre-post survey among participants.

The Covid-19 Children’s Network Study –  a Longitudinal Comparative Online Survey

In the Covid-19 Children’s Network Study, we want to better understand the effects of measures to control the Covid-19 pandemic on children with chronic medical conditions and disabilities; in particular, we ask how control measures (“Lockdown”) affect the quality of care and the opportunities to participate in life for these children and their families over the course of the pandemic. The results will provide insight into which children and adolescents experience the strongest social and medical effects and which measures have the strongest impact on wellbeing. The study will inform policymakers, healthcare leaders and special education settings as they develop strategies which balance the need for infection control with children’s right to optimal medical care and opportunities to participate in life

Patient advisory panel for the Pediatric Healthcare Research Group

Funded by a grant from Freiburg University, we are currently developing a framework with patients and patient representatives for a patient advisory board. This group will eventually collaborate in our research on various levels including strategic planning, project development and implementation.

TEAM

Thorsten Langer, MD (Group leader)
Pediatric Neurologist

E: thorsten.langer@uniklinik-freiburg.de
T: +49 (0)761 270-43442
F: +49 (0)761 270-44460

Department of Neuropediatrics and Muscle Disorders
Center for Pediatrics and Adolescent Medicine
Mathildenstraße 1
79106 Freiburg
Germany

Dr. Anneke Haddad
Psychologist, Research Co-ordinator
Center for Pediatrics and Adolescent Medicine

Dr. Astrid Pechmann
Pediatric Neurologist
Department of Neuropediatrics and Muscle Disorders
Center for Pediatrics and Adolescent Medicine

Dr. Anne Geweniger
Department of General Pediatrics, Adolescent Medicine and Neonatology
Center for Pediatrics and Adolescent Medicine

Jana Willems
Psychologist
Section for Health Care Research and Rehabilitation Research

Christine Straub
Social Scientist (clinical research)

Simone Hock
Advanced Nurse Practitioner
Department of General Pediatrics, Adolescent Medicine and Neonatology (Eckstein)

Michael Barth, PhD (Co-Group leader)
Clinical Psychologist

E: michael.barth@uniklinik-freiburg.de
T: +49 (0)761 270-43950
F: +49 (0)761 270-44700

Department of General Pediatrics, Adolescent Medicine and Neonatology
Center for Pediatrics and Adolescent Medicine
Mathildenstraße 1
79106 Freiburg
Germany

Petra Kiefer
Health and Pediatric Nurse
Department of General Pediatrics, Adolescent Medicine and Neonatology (Palliative Care)

Simone Bürklin
Project Manager
Department of Neuropediatrics and Muscle Disorders (clinical research)

Susanne Dürr
Project Manager
Department of Neuropediatrics and Muscle Disorders (clinical research)

Julia Isabel Cascante
Student assistant
Department of Neuropediatrics and Muscle Disorders (clinical research)

Shrabon Insan
Student assistant
Department of Neuropediatrics and Muscle Disorders (clinical research)  

SELECTED RECENT PUBLICATIONS

A complete list of publications for Thorsten Langer is available here: https://www.researchgate.net/profile/Thorsten_Langer2/research

COLLABORATIONS, CO-OPERATIONS AND NETWORKS

FUNDING