Health of youth with chronic diseases
Key aspects
- Patient-relevant outcomes in paediatrics (self/proxy report)
- Outpatient assessment & computer-adaptive tests in paediatrics
- Behavioural indicators for quality of life and well-being in children
- Prevention programmes for adolescents
- Transition programmes & research
Collaborations
- Dr. Willyane Alvarenga, University of São Paulo
- Prof. Dr. Catherine Arnaud, University of Toulouse
- Prof. Dr. Monika Bullinger, University Hospital Hamburg-Eppendorf
- Prof. Dr. John Chaplin, University of Gothenburg
- Prof. Dr. Jérôme Fauconnier, University of Grenoble
- Prof. Dr. Nicole von Steinbuechel, University Medicine Goettingen
- Prof. Dr. Ute Thyen, University Medicine Luebeck
Projects
Planned Projects
Patient-Reported Outcome Measurement in Pediatric Telemedicine
Current Projects
CAT: Child to Adult Transitions
In the research and innovation project ‘CAT: Child to Adult Transitions’, scientists from Denmark and Germany are working together to find solutions to better prepare the transition from child to adult treatment. The aim is to provide young people with more support during this process in order to reduce the risk of treatment being interrupted or discontinued during this transition phase.
A total of ten German and Danish institutions are involved. The ‘CAT’ project is receiving almost 2.6 million euros in funding from the Germany-Denmark Interreg programme. The project is being led by the University Hospital of the Danish region of Zealand. Our chair is responsible for the scientific implementation of a transition training course that aims to improve the skills of adolescents and young adults in coping with the transition from paediatric to adult medicine.
CAT will further develop and implement research-based transition programmes based on the experiences and needs of young patients in cross-border cooperation. With the help of transition teams, workshops and digital solutions, young people will be prepared for their transition process. The targeted improvements in the treatment of young patients in the transition to adulthood will thus benefit those affected throughout the region. They can then be treated with new methods and health technologies.
The project is particularly focussed on cross-border cooperation, sharing experiences and expanding the capacity of the healthcare institutions involved. In this way, Germany and Denmark are making a valuable joint contribution to supporting young patients.
Intelligent, chatbot-assisted aftercare for depression in adolescents and young adults. Project management: Prof Dr Eva-Lotta Brakemeier
Privileg-M - Sub-project: Ambulatory assessment. Funded by the European Social Fund (funding of young scientists in excellent research networks). Project duration: 01.10.2018 - 31.03.2022
Completed Projects
Overcoming the challenges of a successful transition of young adults with disabilities: participation, health and quality of life in the life span approach
funded by the DFG (FKZ: SCHM 2683/6-1)
Duration: 01.03.2017 - 28.02.2020
The research project focuses on the needs of young people with disabilities who are in the transition phase from adolescence to adulthood and investigates the influence of physical, social and psychological environmental factors on participation in society and the quality of life of young adults with cerebral palsy.
Young people with disabilities form a growing group of fellow citizens who can achieve an inclusive lifestyle thanks to increasingly better healthcare, new communication technologies and changing social attitudes in society. They have both the right and the desire to participate in society on an equal footing. However, barriers and limitations remain due to fragmented healthcare provision beyond childhood and adolescence, lack of integration of health, social, educational and vocational care services, barriers in the physical living environment and the community and stigmatising attitudes. These factors result in isolation, increased vulnerability, restricted access and reduced participation. Due to lower employment rates and poorer educational qualifications, the poverty rate of 70% is significantly higher compared to non-disabled young people.
The aim of the project is to analyse the determinants of a successful transition to adulthood for young people with cerebral palsy living in different regions in France and Germany. Cerebral palsy will be analysed as a characteristic example of a disability with a broad spectrum of manifestations. Supportive, positive influencing factors as well as barriers will be identified, focussing on factors of the physical environment and health care that can be influenced. Comparisons with the general population at the same stage of life allow an assessment of the areas of life in which restrictions are most common. In a longitudinal cohort, data is already available from the childhood and adolescence of the participants with cerebral palsy, so that the influencing factors can be analysed in a life-span approach. The primary endpoint is participation as defined by the WHO's International Classification of Functioning, Disability and Health (ICF) (2001). The endpoint is measured as the quantity of social, age-appropriate activities as well as the subjective perception of participation. Secondary endpoints are health status and health-related quality of life, a multidimensional concept of the positive and negative aspects of life. Predictors are social and physical environmental factors, social status, health care and employment, which take regional variation into account.
funded by the Federal Ministry of Education and Research (BMBF) - FKZ 01 GX 1005
Duration: 04/2011 - 11/2014
Background
The transition from child-centred to adult-centred care systems poses a particular challenge for young people with chronic illnesses. It is known that after discharge from paediatric care, the number of regular visits to the doctor and the course of the disease can worsen.
Transition programmes vary in quality and transitional consultations have only been introduced very occasionally in Germany to date. In paediatrics and adolescent medicine, there are quality-assured patient training programmes for relatively common illnesses, but many questions of care are still clarified with the parents and not the affected chronically ill young people. The aim of the project is to develop a cross-disease, patient-centred training course for young people to increase their self-competence in dealing with care issues that are particularly relevant for transitional care.
Aim and research question
The transitional care of chronically ill adolescents is analysed from their own perspective and that of their doctors. The aim is to develop a transition training programme for chronically ill adolescents and thus improve self-management of the illness, strengthen motivation and autonomy, assume personal responsibility in health care and make meaningful and efficient use of health care services (empowerment).
Methodology
In preparation for the intervention study, focus groups and individual interviews with chronically ill adolescents (N=28) with type 1 diabetes, cystic fibrosis and chronic inflammatory bowel disease and expert interviews with doctors/psychologists will be conducted and analysed in a structured manner using qualitative content analysis in order to be able to take into account the needs and wishes of chronically ill adolescents in transitional care from their subjective perspective in the further course of the study and in the development of the training module.
At the same time, psychometric testing of questionnaires on satisfaction with medical care (CHC-SUN, adapted version for young adults) and on the self-perceived health literacy of chronically ill adolescents will be carried out in various paediatric clinics and rehabilitation facilities and as an online survey.
In cooperation with the ModuS project group of the Competence Network for Patient Education in Childhood and Adolescence (KomPaS), a transition training programme is being developed to support young people in the transition process and make them competent for the transition. The transition training deals with the transfer to adult medicine, i.e. the change of care institutions and treating doctors, as well as growing up with a chronic illness in terms of work, living alone, partnership and separation from parents. It is designed to be low-threshold and resource-orientated and includes specialist input from the management and affected young adults as experts, small group work (e.g. research exercises on the internet), sharing experiences in the group, moderated discussions and self-reflection exercises.
As part of a controlled intervention study, the transition training programme will be evaluated on a sample of 240 young people (15-19 years old). The adolescents (with type 1 diabetes, cystic fibrosis and chronic inflammatory bowel disease) will be recruited via special outpatient clinics in specialist hospitals, special consultation hours in GP practices (diabetology, pneumology, gastroenterology) and via cooperating paediatricians and general practitioners.
In addition to self-management, motivation and autonomy, the project also aims to improve patient and doctor satisfaction, the clinical course of illnesses and quality of life.
The project will run for three years (04/2011 - 04/2014). The project is headed by Prof Silke Schmidt from the Chair of Health and Prevention, Institute of Psychology at the University of Greifswald. The cooperation partners of the project are the University Hospitals for Children and Adolescents Greifswald, the University Hospital Schleswig-Holstein, Campus Lübeck and Kiel in cooperation with specialist outpatient clinics in private practice; paediatricians and adolescent physicians in private practice; adult medical specialists, the Competence Network for Patient Training in Childhood and Adolescence (KomPaS) with the ModuS working group headed by Dr Rüdiger Szczepanski. Rüdiger Szczepanski; the mobile diabetes training programme in Schleswig-Holstein and the cystic fibrosis self-help group.
funded by the Federal ministry of Education and Research (BMBF)
Duration: 02/12 - 10/14
Qualification Theses
- Psychometric and conceptual analysis of patient-oriented, health-psychological constructs in children and adolescents with chronic diseases in a developmental perspective (Henriette Markwart, 2019)
- The potential of behavioural data as indicators of well-being in childhood - an intensive longitudinal study design in a naturalistic setting (Marie Bischoff, in progress, doctoral thesis for Dr. rer. nat.)
- Course of and factors influencing prenatal and postpartum maternal attachment - a longitudinal study in a naturalistic setting (Marie Bischoff, in progress, doctoral thesis for the Dr. rer. med. degree)
Publications
Chaplin, J., Muehlan, H., & Arbuckle, R. (2020). Registered reports and pediatric research. Quality of Life Research.(OnlineFirst) https://doi.org/10.1007/s11136-020-02702-3
Bischoff, M., Schmidt, S., & Muehlan, H. (2020). Development and Validation of the Child Humor Orientation Scale Short‐Form. Humor. (OnlineFirst) https://doi.org/10.1515/humor-2020-0020
Alvarenga, W.A., Nascimento, L.C., dos Santos, C.B., Biaggi Leite, A.C.A., Muehlan, H., Schmidt, S., Bullinger, M., de Carvalho, E.C., Bredle, J., Arnold, B., Coelho, R.C., Vieira, M. (2019). Measuring spiritual well‐being in adolescents with chronic illness using the Brazilian FACIT‐Sp‐12: Age adaptation of the self‐version, development and validation of the proxy‐version. Journalof Religion & Health. (OnlineFirst) https://doi.org/10.1007/s10943-019-00901-y
Klein, M.O., Barthel, D., Thyen, U., Otto, C., Nolte, S., Meyrose, A.‐K., Fischer, F., Schmidt, S., Devine, H., Muehlan, H., Walter, O., Mierke, A., Fischer, K.I., Ankermann, T., Rose, M., Ravens‐ Sieberer, U. (2018). Der Kids‐CAT. Eine Übersicht zu Validität, Praktikabilität, Akzeptanz und klinischer Relevanz eines neuentwickelten Instruments zur Messung der gesundheitsbezogenen Lebensqualität von Kindern und Jugendlichen. Pädiatrische Praxis, 90, 283‐292.
Menrath, I., Ernst, G., Szcuepanski, R., Lange, K., Bomba, F., Stab, D., Muehlan, H., & Thyen, U. (2018). Effectiveness of a generic transition‐oriented patient education program in a multicenter, prospective and controlled study. Journalof Transition Medicine. (Online First) https://doi.org/10.1515/jtm-2018-0001
Thyen, U., Ittermann, T., Flessa, St., Muehlan, H., Birnbaum, W., Rapp, M., Marshall, L., Szarras‐ Capnik, M., Bouvattier, Cl., Kreukels, B.P.C., Nordenstroem, A., Roehle, R. & Koehler, B. on behalf of the dsd‐LIFE group. (2018.). Quality of health care in adolescents and adults with disorders/differences of sex development (DSD) in six European countries (dsd‐LIFE). BMC Health Services Research, 18, 527. https://doi.org//10.1186/s12913-018-3342-0
Bomba, F., Markwart, H., Muehlan, H., Menrath, I., Ernst, G., Thyen, U., & Schmidt, S. (2018). Adaptation and validation of the German Patient Activation Measure for adolescents with chronic conditions in transitional care: Pam® 13 for Adolescents. Research in Nursing & Health, 41(1), 78–87. https://doi.org/10.1002/nur.21831
Schmidt, S., Markwart, H., Bomba, F., Muehlan, H., Findeisen, A., Kohl, M., . . . Thyen, U. (2018). Differential effect of a patient-education transition intervention in adolescents with IBD vs. Diabetes. European Journal of Pediatrics, 177(4), 497–505. doi.org/10.1007/s00431-017-3080-z
Barthel, D., Fischer, K., Nolte, S., Otto, C., Reisinger, S., Dabs, M., Thyen, U., Klein, M., Muehlan, H., Ankermann, T., Walter, O., Rose, M. & Ravens‐Sieberer, U., for the Kids‐CAT Study Group (2016.). Implementation of the Kids‐CAT in clinical settings: A newly developed computer‐ adaptive test to facilitate the assessment of patient‐reported outcomes of children and adolescents in clinical practice in Germany. Quality of Life Research, 25, 585‐594.
Bomba, F., Herrmann-Garitz, C., Schmidt, J., Schmidt, S. & Thyen, U. (2016). An assessment of the experiences and needs of adolescents with chronic conditions in transitional care: a qualitative study to develop a patient education programme. Health & Social Care in the Community, EFirst. https://doi.org/10.1111/hsc.12356
Kietzmann, D., Wiehn, S., Kehl, D., Knuth, D. & Schmidt, S. (2016). Migration background and overall satisfaction with pre-hospital emergency care. Applied Nursing Research, 29, 96-100. http://dx.doi.org/10.1016/j.apnr.2015.05.009
Schmidt, S., Thyen, U., Herrmann-Garitz, C., Bomba, F. & Muehlan, H. (2016). The Youth Health Care measure-satisfaction, utilization, and needs (YHC-SUN)-development of a self-report version of the Child Health Care (CHC-SUN) proxy-measure. BMC Health Services Research, 16(1), 1-12. https://doi.org/10.1186/s12913-016-1419-1
Thyen, U., Bomba, F., Menrath, I., Schmidt, J., Szczepanski, R., Ernst, G. & Schmidt, S. (2016). Patientenschulungen in der Transition: Empowerment für Jugendliche mit chronischen Erkrankungen. Pädiatrie & Pädologie, 1-6. https://doi.org/10.1007/s00608-016-0347-y
Devine, J., Otto, C., Rose, M., Barthel, D., Fischer, F., Mülhan, H., Nolte, S., Schmidt, S., Ottova-Jordan, V. & Ravens-Sieberer, U. (2015). A new computerized adaptive test advancing the measurement of health-related quality of life (HRQoL) in children: the Kids-CAT. Quality of Life Research, 24(4), 871-884. https://doi.org/10.1007/s11136-014-0812-7
Herrmann-Garitz, C., Muehlan, H., Bomba, F., Thyen, U. & Schmidt, S. (2015). Konzeption und Erfassung der gesundheitsbezogenen Transitionskompetenz von Jugendlichen mit chronischen Erkrankungen – Entwicklung und Prüfung eines Selbstbeurteilungsinstrumentes. Gesundheitswesen(EFirst).https://doi.org/10.1055/s-0035-1549986
Schmidt, S., Herrmann-Garitz, C., Bomba, F. & Thyen, U. (2015). A multicenter prospective quasi-experimental study on the impact of a transition-oriented generic patient education program on health service participation and quality of life in adolescents and young adults. Patient Education and Counseling. https://dx.doi.org/10.1016/j.pec.2015.10.024
Devine, J., Otto, C., Rose, M., Barthel, D., Fischer, F., Mühlan, H., Nolte, S., Schmidt, S., Ottova-Jordan, V., Ravens-Sieberer, U. (2014). A new computerized adaptive test advancing the measurement of health-related quality of life (HRQoL) in children: the Kids-CAT. Quality of Life Research, 1-14. https://doi.org/10.1007/s11136-014-0812-7
Thyen, U., Herrmann-Garitz, C., Bomba, F., Schmidt, S. (2014). Förderung der Gesundheitsversorgungs-Kompetenz von Jugendlichen mit chronischen Erkrankungen in der Transition von pädiatrischen zu Erwachsenenversorgungsystemen. vffr-news, 15, 16-20.
Muehlan, H. & Schmidt, S. (2013). Versorgungsbezogene E-Health-Anwendungen und Lebensqualität: Empirische Befunde und konzeptuelle Perspektiven. Psychiatrische Praxis, 40, 307-312. https://doi.org/10.1055/s-0033-1349489
Kamp‐Becker, I., Schröder, J., Muehlan, H., Remschmidt, H., Becker, K. & Bachmann, Chr. .J. (2011). Health‐related quality of life in children and adolescents with autism spectrum disorders. Zeitschrift für Kinder‐ und Jugendpsychiatrie, 39, 123‐131. https://doi.org/10.1024/1422-4917/a000098
Bachmann, Chr., Lehr, D., Janhsen, E., Sambach, H., Muehlan, H., von Gontard, A. & Bachmann, H. (2009). Health Related Quality of Life of a Tertiary Referral Center Population With Urinary Incontinence Using the DCGM‐10 Questionnaire. TheJournalof Urology, 182, 2000‐2006. https://doi.org/10.1016/j.juro.2009.03.065
Fava, L., Muehlan, H. & Bullinger, M. (2009). Content comparison of DISABKIDS instruments based on the international classification of functioning, disability and health (ICF). Disability & Rehabilitation, 31, 1943‐1954.
Bullinger, M., Schmidt, S., Petersen, C., Erhart, M., & Ravens-Sieberer, U. (2007). Methodische Herausforderungen und Potentiale der Evaluation gesundheitsbezogener Lebensqualität für Kinder mit chronischen Erkrankungen im medizinischen Versorgungssystem. Medizinische Klinik, 102(9), 734–745.
https://doi.org/10.1007/s00063-007-1092-6
Ravens-Sieberer, U., Schmidt, S., Gosch, A., Erhart, M., Petersen, C., & Bullinger, M. (2007). Measuring subjective health in children and adolescents: results of the European KIDSCREEN/DISABKIDS Project. Psycho-Social Medicine, 4, Doc08.
Simeoni, M.‐C., Schmidt, S., Muehlan, H., Debensason, D., Bullinger, M. & The European DISAB‐ KIDS Group (2007). Field testing of a European quality of life instrument for children and ado‐ lescents with chronic conditions: the 37‐item DISABKIDS Chronic Generic Module. Quality of Life Research, 16, 881‐893. https://doi.org/10.1007/s11136-007-9188-2
Pollak, E., Muehlan, H., Mackensen, S. von, Bullinger, M. & the Haemo‐QoL Group (2006). The Haemo‐QoL Index. Developing a short measure for health‐related quality of life assessment in children and adolescents with haemophilia. Haemophilia,12, 384‐392. https://doi.org/10.1111/j.1365-2516.2006.01292.x
Schmidt, S., Debensason, D., Petersen, C., Muehlan, H., Simeoni, M.C., Bullinger, M. & the European DISABKIDS group (2006). Cross‐cultural performance of the DISABKIDS condition generic measure. Journalof Clinical Epidemiology, 59, 587‐598
Schmidt, S., Petersen, C., Muehlan, H., Simeoni, M.C., Debensason, D., Thyen, U., Müller‐ Godeffroy, E., Vidalis, A., Tsanakis, J., Hatziagorou, E., Karagianni, P., Koopmann, H., Baars, J., Chaplin, J., Power, M., Atherton, C., Hoare, P., Quittan, M., Schuhfried, O. & Bullinger, M. (2006). TheDISABKIDS Questionnaires ‐ Quality of life questionnaires for children with chronic conditions. Handbook. Lengerich: Pabst Science Publishers.
Petersen, C., Schmidt, S., Power, M., Bullinger, M., & DISABKIDS Group (2005). Development and pilot-testing of a health-related quality of life chronic generic module for children and adolescents with chronic health conditions: a European perspective. Quality of Life Research,14(4), 1065–1077. https://doi.org/10.1007/s11136-004-2575-z
Petersen, C., Schmidt, S., Bullinger, M., & DISABKIDS Group (2004). Brief report: Development and pilot testing of a coping questionnaire for children and adolescents with chronic health conditions. Journal of Pediatric Psychology, 29(8), 635–640. https://doi.org/10.1093/jpepsy/jsh066
Schmidt, S., Thyen, U., Petersen, C., & Bullinger, M. (2004). The performance of the screener to identify children with special health care needs in a European sample of children with chronic conditions. European Journal of Pediatrics, 163(9), 517–523. https://doi.org/10.1007/s00431-004-1458-1
Schmidt, S., Petersen, C., & Bullinger, M. (2003). Coping with chronic disease from the perspective of children and adolescents--a conceptual framework and its implications for participation. Child: Care, Health and Development, 29(1), 63–75. https://doi.org/10.1046/j.1365-2214.2003.00309.x
Bullinger, M., Schmidt, S., Petersen, C., & DISABKIDS Group (2002). Assessing quality of life of children with chronic health conditions and disabilities: a European approach. International Journal of Rehabilitation Research, 25(3), 197–206. https://doi.org/10.1097/00004356-200209000-00005