June 19, 2024

Psychological interventions to address pain and quality of life for people with Ehlers-Danlos syndrome (EDS) and related conditions are most effective when delivered alongside physiotherapy in an outpatient or community setting, according to a review study.

“The results confirmed the primary aim, in that psychological interventions are successful at making significant and sometimes even long-term improvements in the lived experiences of individuals with [EDS],” researchers wrote.

The study, “Psychological interventions to improve pain, fatigue, anxiety, depression, and quality of life in children and adults with hypermobility spectrum disorders and Ehlers-Danlos syndrome: a systematic review,” was published in the journal Rheumatology International.

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EDS symptoms can affect physical, social, and emotional health of patients

EDS is a group of genetic disorders affecting connective tissues, typically characterized by unusually mobile joints and soft, stretchy skin. Similar conditions marked by joint hypermobility that do not meet the EDS diagnostic criteria are referred to as hypermobility spectrum disorders (HSD).

Other symptoms include muscle pain, fatigue, digestive problems, and nausea. Patients are more likely to experience anxiety, depression, social isolation and limitations, and employment difficulties.

According to researchers in the U.K., “there appears to be limited evidence on how to effectively manage patients beyond the obvious physical manifestations of HSD/EDS.”

They conducted a systematic review of published studies to identify psychological interventions that may improve the lives of individuals with EDS or HSD.

The team selected six studies that matched their criteria, which included 343 evaluable participants, with a mean age ranging from 14-39 years, of whom most (77.8% to 96.2%) were female. Most patients were diagnosed with hypermobile EDS, while others had generalized HSD, joint hypermobility syndrome, classical EDS, vascular EDS, and other EDS types.

Psychological interventions included online psychology interventions that provided participants with positive topics to complete weekly and therapeutic patient education that involved workshops on disease management. A multidisciplinary rehabilitation that included physiotherapy was used, as well as three pain management programs, two of which included physiotherapy. A psychologist or a therapist delivered most interventions.

Outcome measures included psychological health, daily living, symptoms such as pain and fatigue, and patient satisfaction with an intervention.

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An illustration of a physical therapist stretching a patient's leg.

Family functioning unexpectedly improved for adolescents with EDS

One study assessed the impact of a pain management program for chronic pain in adolescents using the Bath Adolescent Pain Questionnaire, with subscales such as emotional, daily, family, and developmental functioning. Significant improvements in functioning were found following the intervention across most subscales. Family functioning unexpectedly improved for adolescents with EDS but not for those with joint hypermobility syndrome.

Pain intensity significantly eased in four studies with both adolescent and adult patients, with the multidisciplinary rehabilitation program reducing pain intensity in adolescents by 63%. The interventions were more effective at reducing pain intensity in adolescents than adults.

Four studies assessed pain interference, or the impact of pain on daily functioning, with mixed results. Psychological intervention was less effective in reducing pain interference in adults than multidisciplinary interventions, with one showing long-term improvements.

The rehabilitation for pain management program successfully reduced fear of movement in adolescents and adults with chronic lower back pain. Another program significantly lowered catastrophizing, or believing a situation is worse than it is, in adults with chronic pain, which was sustained for at least five months.

One pain management program for adults using a cognitive behavioral approach, delivered by a team of professionals, showed significant benefits in both anxiety and depression. Overall, however, the multidisciplinary interventions did not significantly reduce anxiety and depression in adults.

Two studies assessed daily living and quality of life in adults, and showed that a self-selected intervention led to higher satisfaction with life but did not significantly improve physical and mental functioning over a short timeframe.

One study used the Fatigue Impact Scale and found a difference in the relationships domain at the six-month follow-up, while another study used the Fatigue Severity Scale and showed a significant reduction in fatigue. Overall, a multidisciplinary intervention was more effective in easing fatigue compared to other interventions.

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An illustration of a physical therapist stretching a patient's leg.

Most participants satisfied with positive psychology intervention

In the study that assessed patient satisfaction with an intervention, most participants were satisfied with the positive psychology intervention, with no significant differences between intervention groups.

Three studies that involved adolescents also evaluated their parents’ perspectives on the success of interventions for chronic pain. Data showed benefits in depression, anxiety, self-blame and helplessness, child-related catastrophizing, relationship with a partner, leisure functioning, parental behavior, and parental strain.

“This finding is particularly important as it demonstrates the role of parents in the management of HSD/EDS in adolescent patients,” the researchers noted.

“Irrespective of the age of the patient, the most effective interventions for HSD/EDS were those that were multidisciplinary and targeted the physical and psychological impact of pain and physical disability,” the researchers concluded.

“It is important for healthcare professionals and patients to work in collaboration to ensure the intervention is designed and tailored appropriately for the patient and their presenting complaints,” they added.

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