The experience of postural orthostatic tachycardia syndrome (PoTS) Interviews in Phase 1 of Developing & feasibility testing a complex intervention: supportive self-management in PoTS study (SSPoTS)

Type of funding sources: Foundation. Main funding source(s): British Heart Foundation.

Crucial for future healthcare delivery is supporting people in self-management. POTS is underdiagnosed with impact on quality of life comparable to other long-term conditions.

An insight into the diverse experience of people with PoTS and health care practitioners with experience of PoTS.

University of Warwick sponsorship and NHS Health Research Authority ethical approval gained.

Sample

Purposive sampling of people with PoTS from 3 NHS clinics. Snowball sampling of health care professionals from PoTS UK charity network.

Inclusion Criteria

Able to provide informed consent, speak English, aged >18. People with PoTS require a recorded PoTS diagnosis. Health care practitioners require minimally six months PoTS experience

Thematic analysis was utilised and NVivo was used to manage the data.

In depth semi structured iterative interviews: average length 65 minutes (range 40-93) exploring the experience of PoTS and supportive self-management. Transcribed Verbatim and pseudo-anonymised.

44 interviews were conducted representing a diverse range of 25 Health Care Practitioners (HCPs) and 19 people with PoTS. Interviewing stopped when theoretical and meaning saturation was achieved.

HCP interviews are analysed first. A HCP framework was developed. Interview data from with people with PoTS data was then merged into the framework, whilst also identifying new emergent codes. A conceptual framework was developed.

Findings Four core themes and subthemes (see figure one)

PoTS is a challenging condition with often multifactorial impacts. People frequently experienced their symptoms being dismissed. Healthcare professionals and people with PoTS often took individual responsibility for PoTS management

“That sense of belonging and feeling accepted and understood is so fundamental …. we need to….dig deep to keep that compassion and to understand some of what might be playing out here and to be able to not take it personally… that can lead to that really rewarding engagement where ….improvement is significant, improvement happens, which is hugely rewarding for both parties” (HCP4)

There was a key need for support and understanding to be able to manage PoTS. A workshop will prioritise components for a supportive self-management programme for future feasibility testing.

Limitations: The sample of people with PoTS had no person from an African-Caribbean or Southeast Asian background.