Atience I can get them out”.Interaction with HCPs 3,5-Diiodothyropropionic acid Biological Activity patients regularly emphasised the importance of PH experts when describing their interactions with HCPs.One patient stated “At the beginning, well, I of course still had such problems and then we spoke to Dr X on the phone most days.He was really afraid for me”.Most patients had established a relationship with one key HCP who was usually an `expert’ in PH working in a specialist clinic or hospital (box).They had no preference for whether this `expert’ was a nurse or physician, so long as they PubMed ID:http://www.ncbi.nlm.nih.gov/pubmed/21438769,19120139,18057828,18000306,17135717,16820936,16278779,16012765,15896472,15885665,14840947,14268524,14223929,14205027,14194673,14177323,14168562,12868270,12855418,12586430,11943074,11918664,11810034,11376601,10921443,10789880,10343172,10101737,9804868,9503384,9446722,9430823,9349663,9283048,9192352,9023740,8903846,8873896,8801604,8597415,8413074,8387536,8383264,8382596,8284104,8203514,8159284,7951507,7827996,7790869,7753335,7700504,6983684,6602198,6601246,6317427,6317350,6315344,6307402,6289620,6276821,6264248,6263583,6260245,6258442,6258096,6253104,6248807,6246695,6244928,6243756,6116260,6097343,6089018,6087065,4376980,4375264,3037390,3036320,3031554,3018404,3015575,3010155,3005896,3005461,3004928,3002767,3002568,2999777,2991798,2987931,2985331,2984509,2983331,2620193,2559340,2555640,2554346,2548372,2541356,2178035,2177174,2161554,2157993,1846102,1661681,1654152,1488092,1333608,1087604,216429,215931,213859,201711,200694,195796,193065,190554,190553,189871,183962,183222,181937,181237,180443,173784,167319,165060 had expert knowledge and were easily accessible.”It was back in .I’ve been writing him an SMS message on every th October for years now.I write `thank you..you’ve made me live again’.” Many patients were unable to recall details of consultations and appeared to remember what they wanted to hear.In the absence of a good relationship with HCPs, PH associations were an additional valuable source of advice and guidance.Most patients were aware of PH associations but not all patients utilised them.Caregivers were also considered an important source for emotional and practical support, as well as helping with medication administration.Relationship with medication Access to medication was crucial to patients’ lives, and, as a result, a strong emotional attachment was evident.For example, one patient stated, “This is the most important drug, ever”.Compliance to treatment was high and was structured into patients’ daily routines.Noncompliance was often related to side effects, which patients recognised as different from the symptoms of PH “If I was to sum it up, I’d say my PH is worse when I leave the house, but when I’m at home the side effects are worse”.Patients tended to remember the `undiagnosed years’ as a benchmark, which reinforced how important medication was to them.Thus, the marked improvement in symptoms after initiation of therapy made further assessment of subtle disease progression more difficult.Patients rarely had knowledge of a `treatment plan’, or how their treatment would change over time.When patients were asked how their treatment made them feel at present, responses included “I can do everything I want and feel good!” and “to enjoy life and look at the bright side”.In terms of how they hoped their treatment would make them feel in months’ time, patients highlighted their desire to “have a good quality of life” and “be able to go on holiday”.Prognosis Patients reported receiving very different diagnoses and prognoses from different HCPs.They were often given a very negative outlook about their disease progression, but remained stable for longer than expected.This resulted in patients feeling `uncertain’ and `hopeless’, and some described their PH as being “always there”.Many had not discussed their future with an HCP and claimed to be unaware of how their disease was likely to progress.Few expected their medication to cure them.DISCUSSION Summary of main findings Despite the widespread use of QoL assessments in PH research, large gaps remain in our awareness of how patients perceive their disease.The present qualitative study used ethnography to gain a unique, reallife insight into PH from the patient’s perspective.It uncovered a number of important findings, including the selfconsciousness and secretive nature of PH, the difficulties that patients have in describing their disease, the emotional attachment to medication by patients and the challenges associated with assessing disease.
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