Hip surgery seen to boost function, ease pain in young adults with EDS

Young adults with Ehlers-Danlos syndrome (EDS) who underwent surgery in the U.S. for an abnormally formed or unstable hip experienced clinically meaningful improvements in function and less pain, as well as benefits in mental health, a new study found.

Further, these patients — mostly in their late 20s — were as satisfied with the procedure’s outcomes as young adults without EDS, but of a similar age, who had the same surgery and saw better results, the researchers noted.

“Importantly, the current study reveals that patients with EDS can achieve meaningful improvements after [surgery], although their postoperative … scores [on assessments of patient-reported outcomes] remained lower than those of non-EDS patients,” the team wrote.

The researchers concluded that surgical correction, combined with other treatment, can “yield meaningful hip-specific improvements and high patient satisfaction.”

According to the researchers, “these findings offer valuable insight into the role and effectiveness of [this procedure] in the EDS population.”

The study, “Ehlers-Danlos Patients Achieve High Satisfaction and Clinically Meaningful Outcomes After Combined Hip Arthroscopy and Periacetabular Osteotomy: A Comparative Study With Non-Ehlers-Danlos Syndrome Patients,” was published in the journal Arthroscopy.

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March 8, 2024 News by Lindsey Shapiro, PhD

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A rare condition, EDS actually comprises a group of diseases that make the body’s connective tissues overly flexible and fragile. In many patients, the hip is not properly formed or stable, and it may not fit securely in its socket, causing pain and other symptoms.

Hip surgery has been reported as a “promising” treatment for EDS, according to the researchers, but its real-life benefits are unclear.

Study compared surgery outcomes in people with and without EDS

To better understand the potential advantages of hip surgery, this team of U.S. researchers compared clinically meaningful outcomes of a combination of hip arthroscopy (HA) and periacetabular osteotomy (PAO) in individuals with and without EDS. Hip arthroscopy is a minimally invasive procedure that uses a small camera to look inside and treat a joint. In PAO, surgeons cut and reposition the bone around the hip socket to make it more stable.

The study involved 26 patients previously diagnosed with EDS and 103 without the condition, who served as controls. Overall, the individuals with EDS were 3.6 years older than the controls, with a mean age of 28.7 versus 25.1. However, the EDS patients had been experiencing symptoms for about as long before surgery as those without the condition — 34.7 versus 42 months, or slightly less than three years compared with about 3.5 years.

More than 80% of patients in both groups reported “satisfaction” with their treatment after surgery, at one and two years of follow-up, the researchers noted.

To determine whether changes after surgery were clinically meaningful, the team used the Minimal Clinically Important Difference (MCID), which represents the smallest improvement that a patient is likely to notice as meaningful. The researchers also reviewed patient-reported outcomes: questionnaires that allowed those undergoing surgery to describe their symptoms, physical function, pain, and overall health.

Both groups showed significant improvements for as long as two years after surgery on the International Hip Outcome Tool-12 (iHOT-12), which measures symptoms and quality of life. Similar results were seen in the Patient-Reported Outcomes Measurement Information System (PROMIS), which measures physical function, physical health, mental health, and pain.

Thresholds were defined by the control group for both the Maximal Outcome Improvement (MOI) — which calculates how much a patient improved relative to how much the individual could possibly improve — and the Patient Acceptable Symptom State (PASS), indicating whether a patient’s symptoms and function have reached a level that the person considers acceptable.

The researchers noted that both thresholds were met by the individuals with EDS.

[While] clinically important outcome values are commonly used to quantify surgical success, patient satisfaction remains the ultimate metric. … EDS patients [undergoing hip surgery] achieved high satisfaction rates.

For the MCID, the results were generally similar between patients with and without EDS. However, differences appeared when looking at whether patients reached acceptable levels of function and symptoms. For example, a smaller proportion of patients with EDS reached the one-year PASS threshold for physical function compared with controls (43% vs. 78%), though the opposite was true for depression (87% vs. 58%).

“The most important finding of our study is that patients with EDS undergoing HA + PAO experienced significant improvements in functional outcomes, including iHOT-12 and PROMIS-PF, as well as quality of life,” the researchers wrote. Although EDS had lower absolute improvements in physical function, “satisfaction and clinically meaningful outcomes are comparable,” the researchers noted.

The researchers noted that the individuals with EDS who underwent surgery reported satisfaction on quality of life measures — which were also noted at the one- and two-year marks.

While “clinically important outcome values are commonly used to quantify surgical success, patient satisfaction remains the ultimate metric. … EDS patients achieved high satisfaction rates,” the team noted.