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Research Update & Results of the experience of PoTS interviews Helen Eftekhari British Heart Foundation PhD Nursing Fellow University of Warwick & BANCC (British Association of Nursing in Cardiovascular Care) PresidentMapping the Evidence Base The PoTS Research Studies (to Sept 2017) Theme in the PoTS research n=202 Observational studies in PoTS Total n= 146 18 4 32 64 42 38 8 14 casecontrol cross-sectional prospective cohort retrospective cohorsystematic review survey 28 51 Experimental studies In PoTS Total n=56 9 25 13 15 11 aetiologies biomedical 32 co-morbidities non-pharmacological management clinical management pharmacological intervention(no controlnon-randomised (healthy controlrandomised symptomology /QoL What does mapping the PoTS Evidence Base reveal Since 2012 increased diagnostic rate of PoTS Country of Research Team (proceeded by increased pubmed publications) § Small sample size: 27 studies >100 (4 intervention) 143 § Limited control of variables 1 9 24 16 9 § 98 studies measurements over 1 day; 16 3 2… N. ur U er studies over 1 week E oh § Commonly used outcome measure: tilt table Author Teams in the n=55 Research § Subjective measures used in 59 studies 92 Researchers own tool 26 31 30 17 16 9 7 (unvalidated) 15 studies used 2 – 4 tools Rj ow bb ar ie r… hr L Gru Stw Le Rob o 11 studies used ≥ 5 tools!!!Non-pharmacological management research • 4 fluid studies • 3 dietary studies (salt, gluten, effect of food intake) • 6 Compression studies • 12 exercise studies • Dysfunctional breathing intervention • Body positions & cognitive functioning Research Needs for PoTS Calls for Action § Administrative data to track PoTS diagnoses and the impact of the illness § Improve physician awareness about PoTS § To better understand the multiple pathophysiology § Effective treatments for PoTS § Need for collaborative research § For more research funding to study PoTSExploratory Data Collection Phase 1 SSPoTS Interviews October 2021-September 2022 Diverse sample of 44 §19 people with PoTS using purposive sampling 3 NHS Participant Identification Sites. Nurse-led Female (n=17), Caucasian (n=19) Geographical spread Northwest (n=6) Northeast (n=8) Southeast (n=5) §25 Health Care Professionals (PoTS UK network) using snowball sampling Consultants (n=6) Nurses & AHP’s (n= 14) General Practitioners (n=5) Geographical spread: England North (n=9) midlands (n=3) Southeast (n=11) outside England (n=2) Personal Experience of PoTS (n=4) Final Thematic Framework 1. A challenging condition 2. "Services by accident not design, few & far between" 1.1 Life Changing 1.2 Dismissals 3. Validating Experiences "Brushing me off" 2.1 Jumping through 1.3 Psychological matters "Diagnostic hoops" 4. Practical self-help 2.2 Paying for healthcare 3.1 "Human interactions" "a hand to get going" 1.4 Our current medical model "Boxes" 2.3 Whose responsibility 3.2"Learning on the job 1.5 Accessing Healthcare "the same fight" a bit of a mishmash" 4.1 Go & manage yourself "distinctly lacking diversity" 3.3 Interconnecting mind & "thrown in the deep end" 2.4 Knowledge and body "learning that dance" 4.2 "Key board warriors - awareness holding each other up" "opening up those 3.4 Movement & rest conversations" "being kind to yourself" 4.3 Moving forward "tools, techniques & challenges" 4.4 Research "dipping our toes in the water" Theme 1 A challenging condition “If I call out the elephant in the room on this, what we see with quite a lot of people “Most people with PoTS, their condition with PoTS is they can come across to is quite challenging, not the person, the healthcare practitioners as being very condition is quite challenging and for complex, very confrontational, very that it presents a big challenge” resistant….. what I see is people who've (HCP16) been repeatedly traumatized feeling so desperate, who are feeling so poorly, who have repeatedly been told that, there's “Do I think PoTS patients nothing wrong with them and they should are any more anxious than 1.1 Life Changing get back to work or they're letting their the general population? No, but does anxiety 1.2 Dismissals as, I expect it's just because you're in your sound like PoTS, it “Brushing me off” late 30s and you haven't had children” certainly can do. Lots of patients are labelled as 1.3 Psychological matters (HCP4) anxious…there’s a lot of anxiety associated with it, it’s not the cause” (HCP15) 1.4 Our current medical model “Boxes” 1.5 Accessing Healthcare “This patriarchal bloody society nonsense that goes on in medicine. They’re always ‘right women being hysterical’. If you can't treat it with a vibrator, well, we’ll just lock them up. This attitude is still passed down again and again. God forbid you’re a woman and a person of colour… the odds are stacked against you...whatever you do your damned. That's gotta go all the way back to medical schools and medical training and how we view women as a society in the medical world, we're always going to be up against it, unfortunately. No soapboxing.” (P12) Theme 2 "Services by accident not design, few & far between" “It's also a question of whether you find somebody who again has an interest, who then has somebody who can support that interest and 2.1 Jumping through develop it….it’s by accident rather than by design… therefore it develops into something but it's random. It's not by design.” "Diagnostic hoops" (HCP15 ) 2.2 Paying for healthcare 2.3 Whose responsibility “ I think people are exploited and I think people pay a lot of money for a lot of tests that don't move them any further forward…always they don't see one person, they "the same fight" end up seeing at least two or probably three people … told what treatment they need, which is often treatments that I might not choose to use. So that sets up a 2.4 Knowledge and awareness real problem in the relationship between the clinician and the patient ….they've "opening up those conversations" got their money, their patients gone, they've got no continuing duty of care or responsibility. They've written a nice letter, got their money, and sent them back.” (HCP17 ) “I was telling them till I was blue in the face that this was not a PoTS collapse …I don't use this word lightly, but the doctor mansplained POTS to me….(another health care practitioner) laughed at me and it was sort of quite humiliating, especially new symptoms stopped and I just think, what if I hadn't pushed, what if I hadn't kept going back and what would I have had to get to before they would take it seriously and stop saying it's POTS” (P10) Theme 3 Validating Experiences 3.1 "Human interactions" 3.2"Learning on the job - “Me and my mum burst into tears..she was literally in floods of tears. a bit of a mishmash" She had watched me suffer my entire life with being told I was mentally ill, but I was feeling poorly, faint, weak, shaky…to know that it wasn't in 3.3 Interconnecting mind & body - my head. I was bordering on ecstatic to be honest, and I wanted to hug "learning that dance" them, and yeah, I cried. It was life changing” (P8) 3.4 Movement & rest “Being kind to yourself” “I'm comfortable in my knowledge… in my limitations, if we don't speak openly about what we know and what we don't know we're not going to get anywhere… I use a lot of clinical reasoning. I have to read around the houses, apply what I read to what I see….make my own theories and a test them which is what I say to patients as well” (HCP10) “I prefer to accept that they (patients) know things that I don't know and then I could learn from them and maybe modify things a little bit to put them into better perspective (par.32). ….I was actually helped much by a few early patients who came to me with printed literature. And said please you read this, and I did, and I said I understand better” (HCP12)Theme 4 Practical self-help - “A hand to get going” “Most people, and even those highly activated people in the first instance, actually need a hand to kind of get going 4.1 Go & manage yourself with it. You know need to know, is this good information or "thrown in the deep end" is this bad information… if people have enough knowledge to know how to manage their condition when the 4.2 "Key board warriors – symptoms are worse… giving people the tools and the techniques that they need… it’s self-efficacy” (HCP11) holding each other up" 4.3 Moving forward "tools, techniques & challenges" “If you say to somebody who's struggled to get GPs to believe them, you've got this condition and what you're gonna do is 4.4 Research you're gonna manage it yourself. They'll generally think you're "dipping our toes in the water" fobbing them off and that's the balance. So, you do want to say there's lots of things you can do for yourself, but it is real… You have to be very careful” (HCP13) “You don’t get a lot of support from doctors because it’s not very well known and also a lot of the treatments for PoTS is like anecdotal. So, you just see other people who are like similar to you struggle and it’s like easy to identify with them. They know the struggle you’ve been through and being fobbed of and things like that. It’s just easy to relate to.” (P15)Conceptual model of the experience of PoTS • Historic gender inequalities may underpin PoTS experiences Social Structure • Medical model of care could impact PoTS management Interpersonal • PoTS care is driven by individual human agency • Key for PoTS is probably self-efficacy in clinical and self- Human agency management strategies underpinned by vicarious learning Physical •Physiological symptoms can impact functioning & quality of life. Bodies in nature • Need to retune into understanding their body • this in my head & could lose touch with mind bodyty, is Inner being connection • Health Care professionals: Clinical care often driven by clinical reasoning.