N nonspecialised HCPs may stem from the long periods of time that some patients spend

N nonspecialised HCPs may stem from the long periods of time that some patients spend undiagnosed and the misdiagnoses that they may have received.Referral to a specialist PH centre may ease patients’ uncertainty as they will finally receive answers to longstanding questions.European treatment guidelines recommend that patients should always be referred to expert centres when PH is suspected, where support from a multidisciplinary team is Tilfrinib site available.The role of PH associations should also not be underestimated.In previous studies, patients have 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 expressed almost universal appreciation for the role of PH associations in providing support, allowing them to connect with their fellow patients and gain a greater understanding of how PH affects their body.Numerous clinical and qualitative studies have previously shown that PAHspecific medications improve QoL in patients with PAH ; however, the significant emotional attachment to medication reported in the present study is a novel finding.Although problems with tolerability and invasive administration methods have previously been reported to negatively impact QoL, tolerability and compliance were not reported to be major issues in this study.Nevertheless, the difficulty in assessing disease progression reported by patients and their lack of knowledge regarding longterm treatment plans has implications for longterm management.Such patients might be less likely to take a proactive approach to their illness, challenge treatment plans and discuss therapy escalation with their doctor.These difficulties may also delay the initiation of interventions to circumvent disease progression by physicians, which is key to successful disease management.Strengths and limitations To the best of our knowledge, this is the first ethnographic study to investigate the experiences of patients living with PH.In order to provide an international sample and a wide range of perspectives on living with the disease, purposive sampling was utilised, including patients with PAH or CTEPH of varying severities and with a wide range of demographic features.This sample aimed to improve the understanding of the lives of patients with PH, but it was not intended to be statistically representative of the PH population.In a healthcare setting, ethnography offers several advantages over other more commonly used qualitative techniques such as interviews and focus groups.By observing actual behaviour in the patient’s environment, for relatively long periods of time, the researcher gains unique insight into the patient’s perspective of their disease, observing the parts of life that are rarely considered by other qualitative techniques.Ethnography allows meaning to be created out of the mundane routines of everyday life, which may lead to the identification of solutions to improve QoL.Nevertheless, the study has a number of limitations that could be addressed in future studies.Certain aspects of the study relied on the patients’ retrospective analysis of their QoL during the prediagnosis and diagnosis phases of their illness.These accounts may benefit from hindsight and may or may not accurately reflect what actually happened.The sample size (n) was too small to allow any subanalyses to be undertaken according to demographic variables, country or disease type, and this was not a major aim of this study.Investigating the experiences of older versus younger patients may be of interest in future studies, as European registry data indicate.