Health system support among patients with ME/CFS in Switzerland
JournalArticle (Originalarbeit in einer wissenschaftlichen Zeitschrift)
ID
4663713
Author(s)
Tschopp, R.; König, R. S.; Rejmer, P.; Paris, D. H.
Author(s) at UniBasel
Tschopp, Rea Paris, Daniel Henry
Year
2023
Title
Health system support among patients with ME/CFS in Switzerland
Journal
J Taibah Univ Med Sci
Volume
18
Number
4
Pages / Article-Number
876-885
Abstract
Objectives: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex chronic and debilitating multifactorial disease. Adequate patient care is challenged by poor knowledge among health care professionals and the historical misconception that the disease is psychological in nature. This study assessed the health-related challenges faced by patients with ME/CFS in Switzerland and examined whether they receive adequate health care. Methods: Quantitative and qualitative data were collected through a self-administered questionnaire between June and September of 2021, among 169 patients with ME/CFS in Switzerland. Results: The mean age at diagnosis was 38.8 years. Only one-third of ME/CFS affected children and youth were correctly diagnosed before their 18th birthday. The mean time from disease onset to diagnosis was 6.7 years, and patients had an average of 11.1 different appointments and 2.6 misdiagnoses. A poor diagnosis rate and insufficient disease knowledge among health professionals in Switzerland led 13.5% of the patients to travel abroad to seek a diagnosis. Most patients (90.5%) were told at least once that their symptoms were psychosomatic. Swiss patients expressed high dissatisfaction with the health system and indicated that physicians lacked knowledge regarding ME/CFS. Therapies prescribed by physicians or tried by patients, as well as their perceived efficacy, were described. Graded Exercise Therapy (GET) was perceived as harmful by patients, whereas pacing, complementary/alternative medicine, and dietary supplements and medications to alleviate symptoms were reported to be helpful to varying degrees. Conclusion: This study highlights that poor disease knowledge among health care providers in Switzerland has led to high patient dissatisfaction, and delays in ME/CFS diagnoses and prescription of inappropriate therapies, thus adding to patient distress and disease burden. © 2023 [The Author/The Authors]
ISSN/ISBN
16583612
URL
https://doi.org/10.1016/j.jtumed.2022.12.019
edoc-URL
https://edoc.unibas.ch/93873/
Full Text on edoc
Available
Digital Object Identifier DOI
10.1016/j.jtumed.2022.12.019
PubMed ID
http://www.ncbi.nlm.nih.gov/pubmed/36852237
Document type (ISI)
Journal Article
MCSS v5.8 PRO. 0.357 sec, queries - 0.000 sec
©Universität Basel | Impressum
|
29/04/2024
Research Database / FORSCHUNGSDATENBANK
