Experiences of ME/CFS Patients in the German Healthcare System - A Qualitative Study on a Very Special Doctor-Patient Relationship

Project description

To date, there has been no systematic scientific study that examines how doctors in Germany deal with ME/CFS patients based on the subjective reports of those affected and their close relatives. Many doctors are still unfamiliar with the disease, others view it as “dazzling” due to the wide range of symptoms and do not take the often seriously ill people seriously in their difficult situation. As a result, ME/CFS sufferers often do not receive the support they need.

The aim of the study is to describe and analyse the doctor-patient relationship between ME/CFS patients and their treating doctors (a) from the perspective of those affected and (b) from the perspective of their close relatives. The investigators would like to identify factors or criteria that negatively or positively influence this specific doctor-patient relationship. On this basis, recommendations for action should then be formulated that will contribute to better care for ME/CFS patients in Germany.

In this survey-based study, the investigators deliberately ask about subjective opinions, motives and attitudes. It is therefore a qualitative study that is carried out in a similar way to a focused, partially standardised guided interview. A written survey with so-called open questions forms the basis. The investigators also ask for basic information (e.g. age, gender) and whether a medical diagnosis of ME/CFS has already been received. People who have not yet been diagnosed with ME/CFS by a doctor will be asked to answer a few questions about their presenting symptoms (based on the DePaul Symptom Questionnaire) so that it can be ensured that only people with ME/CFS or their close relatives take part in the study. The data collected will then be interpreted as part of a qualitative content analysis

The survey is directed at children, adolescents and adults with ME/CFS who have had experience with the German healthcare system as well as close relatives of ME/CFS patients who have had experience in the German healthcare system (e.g. partners, parents or siblings).

(Description adapted from project website: see link above)