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Hypermobility Delphi

A Delphi consensus study to determine the core outcome set and measurement with key stakeholders for patients with hypermobility spectrum disorders and Ehlers-Danlos syndrome.

Full title

Development of a core outcome set and measurement for hypermobility spectrum disorders and Ehlers-Danlos syndrome: a Delphi consensus study

Background

Hypermobility spectrum disorders (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) are predominantly recognised by joint hypermobility. As well as this, the conditions carry additional symptoms like pain, fatigue, dizziness, anxiety, social isolation behaviours, strained relationships, and financial problems due to employment restrictions.

What we are doing

This is a two-stage Delphi consensus study consisting of two stages with a maximum of three rounds each. The study aims to reach a consensus amongst key stakeholders on the most important and relevant symptoms (Stage 1) and how best these will be measured (Stage 2).

Key stakeholders will consist of:

  • Patients (16 years of age or older) with HSD/hEDS
  • Carers (including friends and family) of individuals with HSD/hEDS
  • Healthcare and allied health professionals who work with HSD/hEDS

Chief investigator

Natalie Clark

South Tees Hospitals NHS Foundation Trust

Funder

Small grant from Newcastle University for Stage 1

Current status

Stage 1 published

Stage 2 in preparation