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Health care competence of adolescents with chronic conditions in transition: Research data from the evaluation of a patient education program.

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Researchers

Name
Markwart, Henriette
Bomba, Franziska
Ernst, Gundula
Menrath, Ingo
Thyen, Ute
Schmidt, Silke

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Dataset Information

Title Health care competence of adolescents with chronic conditions in transition: Research data from the evaluation of a patient education program.
Original Title Gesundheitsversorgungs-Kompetenz von Jugendlichen mit chronischen Erkrankungen in der Transition: Forschungsdaten der Evaluation einer Patientenschulung.
Citation Markwart, H., Bomba, F., Ernst, G., Menrath, I., Thyen, U., & Schmidt, S. (2020). Health care competence of adolescents with chronic conditions in transition: Research data from the evaluation of a patient education program. [Translated Title] (Version 1.0.0) [Data and Documentation]. Trier: Center for Research Data in Psychology: PsychData of the Leibniz Institute for Psychology Information ZPID. https://doi.org/10.5160/psychdata.mthe14mo14
Language of variable documentation English
Responsible for Data Collection Thyen, Ute
Data Collection Completion Date 2014
Dataset Publication 2020
Dataset ID mthe14mo14
Study Description Two cooperating projects ModuS-T ("Growing up with ModuS: Fit for the transition") and Transition ("Promoting health care competence of adolescents with chronic diseases in the transition from paediatric to adult care systems") have combined their data in this dataset. The target group were adolescents with chronic conditions aged 13-24 years (and their parents). The goal of both projects was to develop and test a chronic-generic education program to prepare adolescents for the transition. The ModuS-T project also developed modules for parents. The result was a 1.5-day workshop for young people and their parents, which was evaluated. The workshop is based on the principles of the modular training programme ModuS, that consists of disease-specific and generic modules and strengthens the empowerment of the participants. Further information on the projects and their results can be found in Ernst et al (2017), Menrath et al (2018) and Schmidt et al (2016).
Hypotheses A 1.5-day transition workshop increases transition-oriented knowledge and competencies of adolescents with a chronic condition. Additionally, active patient participation and self-efficacy of the young people are increased. The workshop is applicable to a variety of diseases.
Keyphrase transition-specific patient education program; transition; adolescents and young adults with chronic conditions; transition competence; general self-efficacy; patient activation; patient empowerment
Funding Federal Ministry of Education and Research (BMBF; grant number: 01 GX1005) and Federal Ministry of Health (BMG; grant number: IA5–2512FSB121//314–123006/21).
Rating -

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PSYNDEX Classification and Controlled Terms

Classification Physical & Somatoform & Psychogenic Disorders
Promotion & Maintenance of Health & Wellness
Controlled Terms Disease Management
Physical Disorders
Client Education
Self-Efficacy
Empowerment
Illness Behavior
Data Collection
Data Sets

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Research Method Description

Research Method Description Experiment Data
Classification of Data Collection Quasi-experimental Design , Mixed Design, Field Experiment
Research Instrument In a prospective controlled intervention study, the feasibility, acceptance and effectiveness of the newly developed patient education program was examined. First, all eligible patients were invited to participate in the education program at a fixed date. Those who were interested in the program and had time on the specified date were assigned to the intervention group (IG). Those who were interested in the program in principle but were unable to attend the program for various reasons were assigned to the control group (KG). At two measurement dates (immediately before (T0) and after the training (T1), 4 weeks later (ModuS) and 6 months later (Transition; T2), the participants of the IG had to fill in questionnaires. In addition, focus group interviews were conducted separately with the young people and the parents in 10 training courses. These served to supplement the quantitative data and to evaluate the workshops with the greatest possible openness. The participants of the KG filled out the questionnaire battery at two points in time (T0 and T2) at intervals of 4 weeks and 6 months respectively. (Translated by DeepL)
Data Collection Method Data collection in the presence of an experimenter
- Individual Administration
- Paper and Pencil

Data collection in the absence of an experimenter
- Mail Survey
Time Points repeated measurements
Survey Time Period T0: Baseline before intervention
T1: Immediately after intervention (intervention group only)
T2: 1 or 6 month after intervention
Characteristics -
Population Adolescents with chronic condition aged 13-24 years
Experimental Pool Groups
Sample Convenience sample
Subject Recruitment Adolescents with chronic condition were contacted via participating special clinics. Participants of the intervention (Project Transition) received a 20-Euro Amazon-voucher.
Sample Size 723 individuals
Return/Drop Out 323 participants did not fill in the General Self-efficacy Scale as it was only applicated in the project "Transition"
Gender Distribution 50,9% female subjects
49,1% male subjects
Age Distribution 13-24 years
Special Groups -
Country Germany
Region -
City -
Variables Sociodemographic variables:
- Age
- Group (control vs. intervention)
- Dis (chronic condition)
- Sex (male or female)
- DD (duration of disease)
- Eduction (<12 years, >12 years, other)
- actual living situation

Outcomes:
- Transition Competence Scale for Adolescents
- Patient Activation Measure for adolescents
- General Self-efficacy Scale

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Data Status

Data Status Data Set Excerpt
Original Records Questionnaire filled out by either the subject or the experimenter containing closed and/or open answers
Transformation Transfer of the original records into a data matrix required more
complex steps.

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Description of the Provided Data

Description Research data file
File Name mthe14mo14_fd.txt
Data Content 723 subjects, 34 variables
Data Points 723*34=24582 data points
Variables Group (1 item), identification code (1 item), standardized age in months (1 item), chronic condition (1 item), age in years (1 item), 5 groups of different ages (1 item), sex (1 item), duration of chronic condition in years (1 item), participation of parents in health care of adolescents in percent (baseline, follow-up) (2 items), mean of YHC-SUN (1 item), transformed mean ranging from 0 to 100 of YHC-SUN (1 item), Baseline transition competence (3 items), Follow-Up transition competence (3 items), Baseline patient acitivity (3 items), Follow-Up patient acitivity (3 items), Baseline self-efficacy (3 items), Follow-Up self-efficacy (3 items), z-standardized age of the participants (1 item), education level of the participants (1 item), living situation (1 item), participants of project transition of modus (1 item)
MD5 Hash d8665ced9bdd58083fb5677b189f03b0
  

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Description of Additional Materials

Description File Name
Codebook of research data file mthe14mo14_fd.txt mthe14mo14_kb.txt

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Publications Directly Related to the Dataset

Publications Directly Related to the Dataset
Markwart, H., Bomba, F., Menrath, I., Brenk-Franz, K., Ernst, G., Thyen, U., Hildebrandt, A. & Schmidt, S. (submitted). Assessing empowerment as multidimensional outcome of a patient education program for adolescents with chronic conditions: A Latent Difference Score Model. PLOS ONE.

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Utilized Test Methods

Utilized Test Methods
Bomba, F., Markwart, H., Mühlan, 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
Herrmann-Garitz, C., Muehlan, H., Bomba, F., Thyen, U., & Schmidt, S. (2015). Konzeption und Erfassung der gesundheitsbezogenen Transitionskompetenz von Jugendlichen mit chronischen Erkrankungen [Conception and Measurement of Health-related Transition Competence for Adolescents with chronic condition]. Das Gesundheitswesen, 79(06), 491–496. https://doi.org/10.1055/s-0035-1549986
Schwarzer, R., & Jerusalem, M. (1995). Generalized Self-Efficacy scale. In J. Weinman, S. Wright, & M. Johnston, Measures in health psychology: A user’s portfolio. Causal and control beliefs (pp. 35-37). Windsor, UK: NFER-NELSON

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Further Reading

Further Reading
Blum, R. W. (1995). Transition to adult health care: Setting the stage. Journal of Adolescent Health, 17(1), 3–5. https://doi.org/10.1016/1054-139X(95)00073-2
Blum, R. W. (2002). Improving transition for adolescents with special health care needs from pediatric to adult-centered health care, 110.2002,6,2. Crowley, R., Wolfe, I., Lock, K., & McKee, M. (2011). Improving the transition between paediatric and adult healthcare: A systematic review. Archives of Disease in Childhood, 96(6), 548–553. https://doi.org/10.1136/adc.2010.202473
Ernst, G., Menrath, I., Lange, K., Eisermann, N., Staab, D., Thyen, U., & Szczepanski, R. (2017). Development and evaluation of a generic education program for chronic diseases in childhood. Patient Education and Counseling, 100(6), 1153–1160. https://doi.org/10.1016/j.pec.2017.01.001
Kennedy, A., Sloman, F., Douglass, J. A., & Sawyer, S. M. (2007). Young people with chronic illness: the approach to transition. Internal Medicine Journal, 37(8), 555–560. https://doi.org/10.1111/j.1445-5994.2007.01440.x
Menrath, I., Ernst, G., Szczepanski, R., Lange, K., Bomba, F., Staab, D., Muehlan, H. & Thyen, U. (2018). Effectiveness of a generic transition-oriented patient education program in a multicenter, prospective and controlled study. Journal of Transition Medicine, 0(0). https://doi.org/10.1515/jtm-2018-0001
Schmidt, S., Herrmann-Garitz, C., Bomba, F., & Thyen, U. (2016). 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, 99(3), 421–428. https://doi.org/10.1016/j.pec.2015.10.024

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