Patient concerns should guide hEDS, HSD treatment planning: Study
Researchers call patient perspectives 'essential' for developing interventions
Including the experiences and needs of people with hypermobile Ehlers-Danlos syndrome (hEDS) or generalized hypermobility spectrum disorder (HSD) in treatment planning could lead to better care, and this could translate into better quality of life for these patients, the findings of a new U.S. survey study suggest.
“The current approach to physical therapy often relies on expert opinions rather than evidence-based practices,” the researchers wrote. “Patients’ perspectives are essential for developing appropriate treatment plans and improving outcomes.”
The study, “Hypermobile type Ehlers-Danlos syndrome and generalized hypermobile spectrum disorder treatment preferences – a cross-sectional survey of patients,” was published in the journal Rheumatology International by two researchers from the University of South Florida in Tampa.
The team surveyed hundreds of adults via a research platform from the Ehlers-Danlos Society. From nearly 400 patient responses, the duo determined that pain, fatigue, walking issues, and interference with activities of daily living were the topics of most concern to people living with both hEDS and HSD.
“Our results will hopefully inform the development of new interventions to impact outcomes that matter to individuals with hEDS and … HSD,” the researchers wrote.
Treatment planning based on expert opinion, not patient concerns, per study
Both hEDS and generalized HSD are conditions of the connective tissue that share many symptoms. The two manifest as hypermobile joints, or bone junctures that bend beyond the range of motion that’s expected or normal. People with these diseases often experience long-lasting pain. HSD is characterized by similar symptoms to those of hEDS though it does not fulfil the same diagnostic criteria.
While physical therapy can make for more stable joints and milder pain, current practices “[lead] to inconclusive outcomes” and reveal “a need for more effective … interventions,” the researchers wrote. According to the team, taking into account what patients think and want could lead to better care.
To learn more about the experiences and goals of people living with these conditions, and how satisfied they are with treatment, the researchers conducted a survey that included a patient-centered outcome questionnaire. That questionnaire looked at pain, fatigue, emotional distress, and hindrances to daily activities, and asked patients additional questions about their concerns.
Identifying pain, fatigue, interference with daily activities, and walking as the most critical concerns [highlights] the urgent need for improved outcomes in this patient population. … [These findings] will hopefully inform the development of new interventions.
The researchers received answers from 483 adults on the research platform — an 82% completion rate. Among the 396 participants whose responses were analyzed, 316 (80%) had hEDS and 80 (20%) generalized HSD. The majority were women (90%) living in North America (76%).
On a scale from zero, indicating no pain, to 10, for the worst imaginable pain, respondents rated their usual pain at a median of seven points. Patients with hEDS reported higher levels of pain compared with those with generalized HSD. Those with hEDS also expected to experience more pain and challenges with daily activities even after treatment.
While the respondents would like their levels of pain to drop to a median of 2.5 points, they expected a median score of five points after treatment. Many said they’d considered a treatment successful if their levels of pain reached a median of four points.
Both groups had overlapping concerns, such as pain, fatigue, difficulty with daily activities, and trouble walking.
“Interestingly, generalized joint hypermobility and proprioception were rated last,” the researchers wrote. Proprioception refers to awareness of one’s own body position and movement.
The data showed that “fatigue as a standard characteristic associated with functional impairment” was a key concern for patients, with the researchers noting that fatigue is linked to “impaired quality of life.”
“Identifying pain, fatigue, interference with daily activities, and walking as the most critical concerns [highlights] the urgent need for improved outcomes in this patient population,” the researchers concluded, noting that the findings of this survey study “will hopefully inform the development of new interventions.”
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