This topic contains 0 replies, has 1 voice, and was last updated by  Kathleen Sheffer 3 months ago.

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     Kathleen Sheffer 
    Participant

    [embed]https://pulmonaryhypertensionnews.com/2019/04/15/ph-patients-uk-experience-diagnosis-delay-heavy-disease-burden-survey/[/embed]

    The Pulmonary Hypertension Association UK (PHA-UK) conducted a cross-sectional survey of patients with PH in the UK in 2017. The quantitative survey covered four key topics: time to diagnosis, quality of life, financial impact, and specialist treatment. The findings were published last month, titled “The patient experience of pulmonary hypertension: a large cross-sectional study of UK patients,” published in the journal BMC Pulmonary Medicine, are reported in the above article on our site.

    The survey found that patients with PH in the UK experience delays in diagnosis. Nearly half of the participants (48 percent) received a diagnosis one year or later after experiencing their first PH-related symptoms. 40 percent needed to undergo consultations with four or more healthcare professionals before diagnosis. Only 11 percent received the diagnosis after seeing one healthcare professional.

    A delay in diagnosis is not uncommon for patients with PH all over the world. I saw at least two cardiologists before they settled on a PH diagnosis, and the years of delay may have impacted the severity of my PH.

    Do you live in the UK? Did you experience a delay in diagnosis?

    Most of the participants felt that the disease had at least some effect on their financial situation. Most workers experienced reduced monthly incomes, with a mean decrease of 33.3 percent for full-time workers, and 13.4 percent for part-time workers. Have you experienced a similar financial burden?

    This is an impossible question for me to answer. I did not work before diagnosis (I was six years old!). However, I know the disease prevents me from earning the same wages my peers do. Is this true for you, too?

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