Abstract
Patient education programs (PEPs) to improve disease management are part of standard and regular treatment in adolescents with diabetes. In Germany, youth with inflammatory bowel disease (IBD) receive individual counseling but not PEPs in group settings. Generic PEPs have been developed in order to improve transition from child-centered to adolescent health services. The aim of the study was to investigate the effects of a transition-oriented PEP on quality of life (QoL) and self-management in young patients with IBD (PEP naive), compared to patients with diabetes (familiar with PEPs). A 2-day transition workshop was oriented at improving psychosocial skills and addressed both generic as well as specific aspects of the condition. A controlled trial on the outcomes of a generic transition-oriented PEP was conducted in 14- to 20-year-old patients with IBD (n = 99) and diabetes (n = 153). Transition competence and QoL were assessed at baseline and 6-month follow-up. Results show that the intervention lead to a significant increase in QoL only in patients with IBD. The PEP significantly improved transition competence in both groups, however to a higher extent in subjects with IBD.
Conclusion: Transition-oriented PEPs can have differential effects in different patient groups. However, this needs further longitudinal investigations.
What is Known: • To date, evidence has accumulated concerning the effectiveness of patient education programs (PEPs) in pediatric health care for chronic conditions such as type 1 diabetes, asthma, atopic dermatitis, or obesity but is less documented in inflammatory bowel disease (IBD). In particular, PEPs in the transition period have not been investigated in youth with IBD. • The current study focuses on evaluating a PEP for transition preparation and management designed to be generically used across different chronic conditions since many aspects of managing chronic conditions share commonalities across conditions. The 2-day workshop included condition-specific modules adapted to the specific medical needs but was otherwise similar in quality and organization among different conditions. |
What is New: • The transition-oriented PEP was effective in enhancing self-management and transition management skills in both patients with IBD and diabetes; however, effects were higher in youth with IBD. A significant impact of the intervention on patients’ QoL compared to the control group was only identified in youth with IBD. • We recommend that patients with IBD have access to PEP as a standard treatment as well as to a transition program during the course of illness. |
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Abbreviations
- DCGM short-form:
-
DISABKIDS Chronic Generic Measure short-form
- IBD:
-
Inflammatory bowel disease
- ICD-10:
-
International Classification of Diseases, 10th Edition
- PEP:
-
Patient education program
- QoL:
-
Quality of life
- TCS:
-
Transition competence scale
- RMCVA:
-
Repeated measurement covariance analysis
- SPSS:
-
Statistical Package for the Social Sciences
References
Anderson BJ, Svoren B, Laffel L (2007) Initiatives to promote effective self-care skills in children and adolescents with diabetes mellitus. Dis Manag Health Out 15(2):101–108. https://doi.org/10.2165/00115677-200715020-00005
Beierlein V, Morfeld M, Bergelt C, Bullinger M, Brähler E (2012) Messung der gesundheitsbezogenen lebensqualität mit dem SF-8. Deutsche Normdaten aus einer repräsentativen schriftlichen Befragung. = measuring health-related quality of life with the SF-8: German norms from a representative self-administered survey. Diagnostica 58(3):145–153. https://doi.org/10.1026/0012-1924/a000068
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 Soc Care Commun EFirst 25(2):652–666. https://doi.org/10.1111/hsc.12356
Brähler E, Mühlan H, Albani C, Schmidt S (2007) Teststatistische Prüfung und Normierung der deutschen Versionen des EUROHIS-QOL Lebensqualität-Index und des WHO-5 Wohlbefindens-Index. Diagnostica 53(2):83–96. https://doi.org/10.1026/0012-1924.53.2.83
Buderus S, Scholz D, Behrens R, Classen M, De Laffolie J, Keller KM, Zimmer KP, Koletzko S (2015) Inflammatory bowel disease in pediatric patients: characteristics of newly diagnosed patients from the CEDATA-GPGE registry. Deutsches Arzteblatt Int 112(8):121–127. https://doi.org/10.3238/arztebl.2015.0121
Busse FP, Hiermann P, Galler A, Stumvoll M, Wiessner T, Kiess W, Kapellen TM (2007) Evaluation of patients’ opinion and metabolic control after transfer of young adults with type 1 diabetes from a pediatric diabetes clinic to adult care. Horm Res 67(3):132–138. https://doi.org/10.1159/000096583
Cicutto L, Murphy S, Coutts D, O'Rourke J, Lang G, Chapman C, Coates P (2005) Breaking the access barrier: evaluating an asthma center’s efforts to provide education to children with asthma in schools. Chest 128(4):1928–1935. https://doi.org/10.1378/chest.128.4.1928
diabetesDE – Deutsche Diabetes-Hilfe und Deutsche Diabetes Gesellschaft (2016) Deutscher Gesundheitsbericht Diabetes 2016. Kirchheim + Co GmbH, Mainz
Ellert U, Lampert T, Ravens-Sieberer U (2005) Measuring health-related quality of life with the SF-8. Normal sample of the German population. Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz 48(12):1330–1337. https://doi.org/10.1007/s00103-005-1168-5
Ersser SJ, Cowdell F, Latter S, Gardiner E, Flohr C, Thompson AR, Jackson K, Farasat H, Ware F, Drury A (2014) Psychological and educational interventions for atopic eczema in children. Cochrane Database Syst Rev 1:CD004054. https://doi.org/10.1002/14651858.CD004054.pub3
Faller H, Reusch A, Meng K (2011) Innovative concepts for patient education in medical rehabilitation. Bundesgesundheitsblatt, Gesundheitsforschung, Gesundheitsschutz 54(4):444–450. https://doi.org/10.1007/s00103-011-1237-x
Franklin VL, Waller A, Pagliari C, Greene SA (2006) A randomized controlled trial of sweet talk, a text-messaging system to support young people with diabetes. Diabet Med 23(12):1332–1338. https://doi.org/10.1111/j.1464-5491.2006.01989.x
Grey M, Boland EA, Davidson M, Li J, Tamborlane WV (2000) Coping skills training for youth with diabetes mellitus has long-lasting effects on metabolic control and quality of life. J Pediatr 137(1):107–113. https://doi.org/10.1067/mpd.2000.106568
Gustke M, Kosiol D, Bauer C-P, Baumann A, Stachow R, Farin E (2011) Die Fragebögen Disabkids und Kidscreen - Vergleich der Änderungssensitivität bei der Erfassung gesundheitsbezogener Lebensqualität von Kindern und Jugendlichen (the Disabkids and Kidscreen questionnaires—comparison of sensitivity to change in assessing children’s and adolescents’ health-related quality of life). Z Med Psychol 20(2):51–59
Hait EJ, Barendse RM, Arnold JH, Valim C, Sands BE, Korzenik JR, Fishman LN (2009) Transition of adolescents with inflammatory bowel disease from pediatric to adult care: a survey of adult gastroenterologists. J Pediatr Gastroenterol Nutr 48(1):61–65. https://doi.org/10.1097/MPG.0b013e31816d71d8
Herrmann-Garitz C, Muehlan H, Bomba F, Thyen U, Schmidt S (2015) [Conception and measurement of health-related transition competence for adolescents with chronic conditions—development and testing of a self-report instrument]. Gesundheitswesen (EFirst)
Hobolth L, Norgaard K (2005) Treatment of young patients with type 1 diabetes in an adult diabetes clinic. Ugeskr Laeger 167(41):3883–3886
Kennedy A, Sloman F, Douglass JA, Sawyer SM (2007) Young people with chronic illness: the approach to transition. Intern Med J 37(8):555–560. https://doi.org/10.1111/j.1445-5994.2007.01440.x
Muehlan H (2010) Developing the DCGM-12: a short-form of the DISABKIDS condition-generic module assessing health related quality of life in children and adolescents with chronic conditions. Dissertation, University of Hamburg,
Muehlan H, Bullinger M, Power M, Schmidt S (2008) Short forms of subjective quality of life assessments from cross-cultural studies for use in surveys with different populations. Clin Psychol Psychother 15(3):142–153. https://doi.org/10.1002/cpp.573
Neilson K, Ftanou M, Monshat K, Salzberg M, Bell S, Kamm MA, Connell W, Knowles SR, Sevar K, Mancuso SG, Castle D (2016) A controlled study of a group mindfulness intervention for individuals living with inflammatory bowel disease. Inflamm Bowel Dis 22(3):694–701. https://doi.org/10.1097/mib.0000000000000629
Oxelmark L, Magnusson A, Lofberg R, Hilleras P (2007) Group-based intervention program in inflammatory bowel disease patients: effects on quality of life. Inflamm Bowel Dis 13(2):182–190. https://doi.org/10.1002/ibd.20061
Pacaud D, Yale J, Stephure D, Dele-Davies H (2005) Problems in transition from pediatric care to adult care for individuals with diabetes. Can J Diabetes 40:29–35
Paine CW, Stollon NB, Lucas MS, Brumley LD, Poole ES, Peyton T, Grant AW, Jan S, Trachtenberg S, Zander M, Mamula P, Bonafide CP, Schwartz LA (2014) Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers. Inflamm Bowel Dis 20(11):2083–2091. https://doi.org/10.1097/mib.0000000000000136
Philpott JR (2011) Transitional care in inflammatory bowel disease. Gastroenterol Hepatol 7(1):26–32
Plevinsky JM, Greenley RN (2014) Exploring health-related quality of life and social functioning in adolescents with inflammatory bowel diseases after attending camp oasis and participating in a Facebook group. Inflamm Bowel Dis 20(9):1611–1617. https://doi.org/10.1097/mib.0000000000000120
Quittner AL, Espelage DL, levers-Landis C, Drotar D (2000) Measuring adherence to medical treatments in childhood chronic illness: considering multiple methods and sources of information. J Clin Psychol Med Settings 7(1):41–54. https://doi.org/10.1023/a:1009545319673
Rosen D, Annunziato R, Colombel JF, Dubinsky M, Benkov K (2016) Transition of inflammatory bowel disease care: assessment of transition readiness factors and disease outcomes in a young adult population. Inflamm Bowel Dis 22(3):702–708. https://doi.org/10.1097/mib.0000000000000633
Schmidt S, Muhlan H, Power M (2006) The EUROHIS-QOL 8-item index: psychometric results of a cross-cultural field study. Eur J Public Health 16(4):420–428. https://doi.org/10.1093/eurpub/cki155
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 Educ Couns 99(3):421–428. https://doi.org/10.1016/j.pec.2015.10.024
Singh SP, Paul M, Ford T, Kramer T, Weaver T, McLaren S, Hovish K, Islam Z, Belling R, White S (2010) Process, outcome and experience of transition from child to adult mental healthcare: multiperspective study. Br J Psychiatry 197(4):305–312. https://doi.org/10.1192/bjp.bp.109.075135
Strobl V, Kuffner R, Muller J, Reusch A, Vogel H, Faller H (2009) Patient education: quality criteria in its implementation. Rehabilitation 48(3):166–173. https://doi.org/10.1055/s-0029-1220749
Timmer A, Preiss JC, Motschall E, Rucker G, Jantschek G, Moser G (2011) Psychological interventions for treatment of inflammatory bowel disease. Cochrane Database Syst Rev 2:CD006913. https://doi.org/10.1002/14651858.CD006913.pub2
Watson WT, Gillespie C, Thomas N, Filuk SE, McColm J, Piwniuk MP, Becker AB (2009) Small-group, interactive education and the effect on asthma control by children and their families. Can Med Assoc J 181(5):257–263. https://doi.org/10.1503/cmaj.080947
Zimmerman MA (1995) Psychological empowerment: issues and illustrations. Am J Community Psychol 23(5):581–599. https://doi.org/10.1007/bf02506983
Funding
The study was funded by the Federal Ministry of Education and Research (BMBF, Grant Nr. 01 6x1005).
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Professor Schmidt has planned the study, supervised and analyzed the study, written the paper and reviewed the paper. Ms. Markwart and Dr. Muehlan have carried out analysis, interpreted analyses and reviewed the paper. Ms. Bomba has carried out the study in one of the study centers and contributed to writing the paper. Dr. Findeisen and Dr. Kohl have carried out the study from the clinical point of view and have reviewed the paper. Dr. Menrath has carried out the study in the clinical center and contributed to reviewing the paper. Professor Thyen has planned the study, supervised the study and reviewed the paper.
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All procedures performed in studies involving human participants were in accordance with the ethical standards of the institutional research committee and with the 1964 Helsinki declaration and its later amendments or comparable ethical standards. Ethical approval for the study was obtained by the Institutional Review Board at the University Medical Center of Greifswald.
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Informed consent was obtained from all individual participants included in the study.
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Schmidt, S., Markwart, H., Bomba, F. et al. Differential effect of a patient-education transition intervention in adolescents with IBD vs. diabetes. Eur J Pediatr 177, 497–505 (2018). https://doi.org/10.1007/s00431-017-3080-z
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DOI: https://doi.org/10.1007/s00431-017-3080-z