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10. Kongress für Infektionskrankheiten und Tropenmedizin (KIT 2010)

Deutsche Gesellschaft für Infektiologie,
Deutsche AIDS-Gesellschaft,
Deutsche Gesellschaft für Tropenmedizin und Internationale Gesundheit,
Paul-Ehrlich-Gesellschaft für Chemotherapie

23.06. - 26.06.2010, Köln

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“PID-Schulung”: Development of a structured educational programme for patients with primary immunodeficiency (PID) diseases associated with antibody deficiency

"PID-Schulung": Patientenschulung für Patienten mit Antikörpermangelerkrankungen, gefördert durch das Bundesministerium für Bildung und Forschung

Meeting Abstract

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  • G. Schuermann - Medizinische Hochschule Hannover, Klinik für Immunologie und Rheumatologie, Hannover, Germany
  • PID-Schulungs-Gruppe

10. Kongress für Infektionskrankheiten und Tropenmedizin (KIT 2010). Köln, 23.-26.06.2010. Düsseldorf: German Medical Science GMS Publishing House; 2010. DocP23

doi: 10.3205/10kit079, urn:nbn:de:0183-10kit0792

Published: June 2, 2010

© 2010 Schuermann et al.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by-nc-nd/3.0/deed.en). You are free: to Share – to copy, distribute and transmit the work, provided the original author and source are credited.

Outline

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Objective: Structured educational programmes support patients and health care professionals to solve problems that arise from the disease. They have been shown to be beneficial for patients with common chronic diseases, such as asthma or atopic dermatitis. We hypothesise that this applies also to patients with rare diseases, such as antibody deficiency syndrome. This project aims to develope and implement a structured age-specific educational programme in co-operation with patient organisations for children and adults with antibody deficiency syndrome. It intents to empower patients for a higher level of self-management.

Methods: Survey on current practices in patient education of PID patients in Germany, formation of a nation-wide working group, identification of key-issues for PID patients and their patients, development of programme modules aided by specially designed internet platform “WIKI”. Schedule for scientific evaluation. Test courses.

Results: The overall aim of the working group has been to establish a structured age-specific educational programme that empowers patients to integrate their own goals with requirements of their disease in day to day life. The programme, developed in a series of workshops over the past 2 years, has been designed for 2 target groups so far: parents of patients ≤14 years and adult patients including adolescents ≥18 years. Starting in January 2010, it runs now as a serial of 6 weekend test courses with max. 10 patients each.The following items are covered:

  • Module 0, Getting acquainted, Warming-up
  • Module I, Basic medical knowledge (immune system, PID clinics, genetics, infections, therapy)
  • Module II, Life with PID (psychosocial aspects)
  • Module III, Practical knowledge (skills of subcutaneous immunoglobulin application)

Scientific monitoring includes standardised questionnaire (prior to and 3 months after the programme) documenting on health related quality of life, treatment satisfaction and knowledge about own disease. The evaluation of data so far shows that all participants confirmed the content of the educational programme as highly relevant in day to day life.

Conclusion: The nationwide working group aims to implement the structured age specific educational programme for patients with PID as part of the disease management programme, DMP. As the present test courses have been very successful this project may become the basis for the development of educational programmes for other rare diseases within and beyond PID.