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Dr. Iris Brandes, MPH
Institut für Epidemiologie, Sozialmedizin und Gesundheitssystemforschung
Medizinische Hochschule Hannover
Carl-Neuberg-Str. 1
30625 Hannover
Tel.: 0511/532-9834
Fax: 0511/532-5347
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Evaluation of a training program for patients with endometriosis (EVA study)

Iris Brandes, Beate Wunderlich
Institut für Epidemiologie, Sozialmedizin und Gesundheitssystemforschung, 
Medizinische Hochschule Hannover

 

Background:

There is evidence for the effectiveness of patient training programs for various indications. However, these are primarily offered in an inpatient setting. To be able to make training measures accessible to patients without an inpatient rehabilitation stay, outpatient training offers are required. Using the example of endometriosis – in addition to the actual evaluation of the training program – problems and obstacles inherent in the introduction of an outpatient training program are examined.

Endometriosis is the second most frequent gynaecological illness (AWMF 2006). Various aspects of the illness (complexity, lack of chances of a cure, therapies with many side effects, lack of patient knowledge, strong burdens on the physical, emotional and social level (Oehmke et al. 2007, Finas et al. 2005)) justify the necessity of a patient training program. The aim of the study funded in the framework of the research program “Chronic diseases and patient orientation” is an implementation of a standardised outpatient training program in routine care across the board.

 

Methods:

The outpatient training is being implemented in several locations in different settings (clinics of speciality and maximum care, outpatient rehab clinic, practice clinic, open conference room). Currently, gynaecologists and women from the area of self-help are acting as trainers, each of whom has extensive experiences with group work and with the disease of endometriosis.

 

Current status:

The patient training has been offered on an ongoing basis since May 2008 and the planned sample size of 150 participants has been reached.

In relation to the development and implementation of the training, various problems and obstacles have arisen both on the organisation and content-based level. In the framework of the organisation, the time planning represents a particular challenge (availability of rooms and trainers, job commitments of the women, duration of the event). Contrary to expectation, the recruitment of participants via newspapers and the internet has been more successful than through the cooperating clinics and practices. A specific homepage for endometriosis (www.mh-hannover.de/endometriose/) has been set up with the aim, besides providing information, of approaching and attracting further women interested in taking part in the training offer. The recruitment of the control group represents a particularly great challenge for the study.

The planned implementation of the training through a multidisciplinary team of more than two trainers has not been successful. It has become apparent that a strict orientation to a rigid process with alternating trainers – as is customary for other indications – does not fit the needs of women with endometriosis. In the short time available of one and half days, it is not possible to do justice to the complexity of the illness with its physical, emotional, professional and private consequences and the in part very different requirements of the women. It is necessary to focus on the particular needs of the respective participants while at the same time giving sufficient scope for an intensive exchange within the group. This works better with two trainers present simultaneously than with constantly changing trainers.

The feedback from the participants substantiates the wish for a further training appointment to consolidate the information and competencies. The evaluation of the questionnaires will show to what extent an extension of the training offer is necessary.

 

Conclusion:

In the framework of the study, it became apparent that in outpatient training programs, additional attention needs to be paid to the two thematic areas of access to patients and implementation of the training under consideration of the recommendations for patient training programs in rehabilitation. In terms of aspects of the study, the recruitment of the control group is a serious problem.

 

Literature

  1. Arbeitsgemeinschaft der Wissenschaftlichen Medizinischen Fachgesellschaften (AWMF). Diagnostik und Therapie der Endometriose. AWMF Leitlinien-Register Nr. 015/045; Erstellungsdatum 04/2006; http://www.uni-duesseldorf.de/AWMF/ll/015-045.htm
  2. Oehmke F, Suwandinata F, Deisting C, Tinneberg HR (2007) Datenlage zur Endometriose. Der Gynäkologe; Online-Publikation 21.06.2007; http://www.springerlink.com/content/9106uk14q070x274/
  3. Finas D, Hüppe M, Diedrich K, Kowalcek I (2005) Chronischer Unterbauchschmerz am Beispiel der Endometriose - Problempatientin in der Gynäkologie? Geburtsh Frauenheilk 65: 156-163



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