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

Rheumatol Int. 2024 Jan;44(1):41-55. doi: 10.1007/s00296-023-05503-2. Epub 2023 Dec 13.

Abstract

Hypermobility spectrum disorders (HSD) affect individuals across physical, psychological and social domains, making assessment and management difficult. Management for this condition primarily focuses on addressing the musculoskeletal complaints using physiotherapy rather than the additional manifestations such as fatigue, anxiety and depression. This systematic review aims to identify psychological interventions and assess whether they improve the lived experiences of individuals with HSD. It also aims to assess which psychological interventions were most effective, which symptoms were most effectively managed by a psychological intervention, and whether there were differences between children and adults. Studies were included if they were a randomised controlled trial or pre/post-test design, a sample of any age and clinical diagnosis of HSD (including Ehlers-Danlos syndrome), used a psychological intervention and assessed the effect of the intervention on lived experiences using appropriate outcome measures. Risk of bias was assessed using the Mixed Methods Appraisal Tool. The results were narratively synthesised. Six studies were included in the review, one isolated psychological intervention and five incorporated a psychological intervention within a multidisciplinary programme. The interventions predominantly aimed to reduce pain including intensity, interference, pain-related fear and catastrophising, with anxiety and depression, affect, daily living, fatigue also being evaluated. The most beneficial psychological interventions were those delivered alongside physiotherapy in an outpatient or community setting, improving both the physical and psychological aspects of pain, subsequently improving quality of life. However, there lacks randomised controlled trials with larger samples to definitively confirm the significant findings discussed in this review.

Keywords: Ehlers-Danlos syndrome; Hypermobility; Lived experiences; Psychological intervention; Systematic review.

Publication types

  • Systematic Review

MeSH terms

  • Adult
  • Anxiety / therapy
  • Child
  • Depression / therapy
  • Ehlers-Danlos Syndrome* / complications
  • Ehlers-Danlos Syndrome* / psychology
  • Ehlers-Danlos Syndrome* / therapy
  • Fatigue / etiology
  • Fatigue / therapy
  • Humans
  • Pain
  • Psychosocial Intervention*
  • Quality of Life
  • Randomized Controlled Trials as Topic

Supplementary concepts

  • Phobia, Specific