Resources

A protocol describing the three phases of intervention development planned: 1) qualitative study and taxonomising components of self-management support, 2) co-creation workshops to examinine and prioritise what should be in a self-management support intervention and 3. initial testing of the intervention for feasibilty

Interviews with 44 people with POTS and healthcare professionals.

Three core themes were found: 1) A challenging condition, 2) POTS healthcare provision – services by accident not design, and 3) The need to validate experiences.

Measuring health-related quality of life in chronic headache: A comparative evaluation of the Chronic Headache Quality of Life Questionnaire and Headache Impact Test (HIT-6)

Core outcome set for preventive intervention trials in chronic and episodic migraine (COSMIG): an international, consensus-derived and multistakeholder initiative

Two online mixed-methods international surveys were completed by 955 childbearing people with hEDS/HSD and 307 maternity staff. This was followed by the co-creation of three tools with 17 co-creators and a design team.

This is a publication for a study that aimed to examine outcomes and complications in people childbearing with hEDS/HSD. A large online international survey was completed by 947 women with experience in childbearing and a diagnosis of hEDS/HSD.

The effectiveness of conservative interventions on pain, function, and quality of life in adults with hypermobile Ehlers-Danlos Syndrome/Hypermobility Spectrum Disorders and shoulder symptoms: A systematic review

This paper describes the process of co-creating a physical activity intervention for POTS and how to test its feasibility. People living with PoTS have been fully involved throughout the whole process to ensure that this research is meaningful and useful. This research is funded by British Heart Foundation.

This is a protocol for a systematic review examining non-pharmaological interventions to improve pain, function and quality of life for adults with hEDS/HSD and shoulder symptoms. This is part of Anna Higo’s Doctoral research.

A protocol for a systematic review examining the different potential components that could be included in an intervention to manage PoTS, and looking at whether the components are effectiveness in improving outcomes for people living with PoTS. This is part of Helen Eftekhari’s Doctoral research.

This is a case study examining the value of a type of functional support (dynamic elastomeric fabric orthoses) for a person with hypermobile Ehlers-Danlos Syndrome (hEDS). This was following a referral for physiotherapy with hip dysplasia, prior to a right periacetabular osteotomy.

This is a review that maps all of the literature that existed about Postural Tachycardia Syndrome (PoTS) up until submission for publication. It highlights where the gaps are in the field of research on PoTS.