Self-reported quality of life, anxiety and depression in individuals with Ehlers-Danlos syndrome (EDS): a questionnaire study

Abstract

BackgroundMany individuals with Ehlers-Danlos Syndrome (EDS) are hypermobile, suffer from long term pain, and have complex health problems. Since these sometimes have no objective physical signs, individuals with EDS sometimes are referred for psychiatric evaluation. The aim was therefore to identify the level of anxiety and quality of life in a Swedish group of individuals with EDS.MethodsA postal survey in 2008 was distributed to 365 members over 18 years of the Swedish National EDS Association and 250 with EDS diagnosis responded. Two questionnaires, the Hospital Anxiety and Depression Scale (HADS) and SF-36, were used. A Swedish population study was used to compare results from SF-36. Independent Student’s t-test was used to compare differences between groups, possible relationships were tested using Spearman’s correlation coefficient and the General Linear Model was used for regression analyses. Higher scores on HADS represent higher levels of anxiety and depression and higher scores on SF-36 represent higher quality of health.ResultsOf the respondents 74.8% scored high on anxiety and 22.4% scored high on depression on the HADS. Age, tiredness and back pain was independently associated with the HAD anxiety score in a multiple regression analysis, When comparing the SF-36 scores from the EDS group and a Swedish population group, the EDS group scored significantly lower, indicating lower health-related quality of health than the general population (p < 0.001).ConclusionsIn comparison with a Swedish population group, a lower health-related quality of life was found in the EDS group. Also, higher levels of anxiety and depression were detected in individuals with EDS. The importance to explore the factors behind these results and what initiatives can be taken to alleviate the situation for this group is emphasized.

Obstructive sleep apnoea and quality of life in Ehlers-Danlos syndrome: a parallel cohort study

“…The high proportion of females in our registry databases is consistent with proportions reported by other EDS registers9–11 30 but ultimately may be considered as a limitation when it comes to the generalisability of the data.…”

“…Our data also suggest that OSA has a role in the development of fatigue, daytime sleepiness and impaired quality of life in patients with EDS. A large body of evidence has documented that these symptoms represent significant problems in day-to-day life in the EDS population 9 10 30. High-quality data about adverse effects of OSA in EDS are clinically crucial, because OSA is treatable and its therapy has been shown to effectively reduce daytime sleepiness, to increase quality of life and to successfully prevent other adverse consequences 31–33…”

The feasibility of a randomised controlled trial of physiotherapy for adults with joint hypermobility syndrome

“…Based on a review of titles and abstracts we found six papers 35,38,[91][92][93][94] reporting generic health-related quality of life in patients with JHS (Table 31). These studies typically were cross-sectional surveys with small numbers of patients with JHS (range 20-115).…”

Flexible bodies—Restricted lives: A qualitative exploratory study of embodiment in living with joint hypermobility syndrome/Ehlers‐Danlos syndrome, hypermobility type

“…The correlation of kinesiophobia with the severity of fatigue is strong (Celletti, Castori, La Torre, & Camerota, ) and is reflected in decision‐making processes with regard to pain and activity (Schmidt, Corcoran, Grahame, & de‐C‐Williams, ). Quality of life in these patients is often reduced because of chronic pain (Berglund, Pettersson, Pigg, & Kristiansson, ; Murray et al, ; Rombaut et al, ). Functional impairment in patients with JHS/EDS‐HT is similar to that in fibromyalgia (FMS) sufferers, and significantly worse than in patients with rheumatoid arthritis (Rombaut et al, ).…”