Patient and Parent Knowledge, Understanding, and Concerns After a New Diagnosis of Ehlers Danlos Syndrome

TL;DR

This study explores what patients and parents understand and need after a new diagnosis of Ehlers Danlos Syndrome.

Contribution

The study identifies gaps in knowledge and differing information-seeking behaviors between patients and parents post-EDS diagnosis.

Findings

Parents and patients seek EDS information differently and have distinct concerns.

Respondents desire well-structured, evidence-based educational materials in multiple formats.

Clinical guidelines are seen as essential for addressing post-diagnosis needs.

Abstract

After diagnosis of Ehlers Danlos Syndrome (EDS), it is unclear what information patients and parents need and understand about EDS. The objective of this study is to characterize patient and parent knowledge and concerns about EDS after a diagnosis of EDS is made to determine patient and parent concerns and identify barriers that cause discomfort with the diagnosis.

A convenience sample of patient and parent dyads were recruited after new diagnosis of EDS. Patients and parents completed questionnaires that assessed knowledge, comfort, and barriers of EDS before and after diagnosis, EDS education materials accessed, and additional clinical needs and concerns.

Seventy-two dyads completed the survey.

Many respondents actively seek information on the diagnosis and management of EDS. Parents and patients look for information about EDS differently. Parents have more concerns after diagnosis and both want well-constructed, empirically supported educational materials delivered via multiple modalities, which makes clinical guidelines more essential.

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