Abstract
BackgroundPulmonary Hypertension Association UK (PHA-UK) is the only charity in the UK especially for people affected by pulmonary hypertension (PH). To better understand the impact of PH on patients and carers beyond clinical symptoms, the PHA-UK carried out a cross-sectional survey on the effect of PH on daily living, along with a follow-up survey assessing the financial impact of PH.MethodsThis is a descriptive cross-sectional survey of adult patients with PH in the UK. A quantitative survey of four key topics (time to diagnosis, quality of life [QoL], financial impact and specialist treatment), was made available to PHA-UK members and patients on PH therapy, with a follow-up financial impact survey sent to those responders who agreed to be contacted further. Data collection was carried out in January and February 2017 for the main survey, and November and December 2017 for the financial impact survey.ResultsThe main survey was completed by 567 individuals, and the financial follow-up survey by 171. Mean age of responders was 69 ± 17 years with 70% female. 60% of respondents said PH had a major impact on their QoL, with 45% reporting that treatment and management improves their QoL ‘a lot’. The time between first experiencing symptoms and diagnosis was ≥1 year for 48% of patients, with 40% seeing 4+ doctors before diagnosis. 63% of patients reported financial worries. Patients in part-time and full-time work reported the greatest financial burden, with a 13 and 33% fall in monthly income respectively. Patients had positive experiences of treatment in specialist centres, with 62% rating their care ‘excellent’, and 92% saying they preferred travelling to a specialist centre rather than seeing a local non-specialist.ConclusionsThis study reports the largest UK survey exploring issues affecting patients with PH. The study shows that despite the availability of new therapies, patients are still experiencing delays prior to diagnosis, and experiencing both emotional and financial impacts from the disease. By identifying the areas patients find most important in their treatment, this research can inform future care policies and long-term management to support patients living with PH and their families.
Highlights
Pulmonary Hypertension Association UK (PHA-UK) is the only charity in the UK especially for people affected by pulmonary hypertension (PH)
The REVEAL Registry (Registry to EValuate Early And Long-term pulmonary arterial hypertension disease management) in the USA in 2006 [4] found that over 20% of patients waited more than 2 years from the onset of symptoms attributable to PAH and diagnosis [5]
Other registries used for PH research are the Giessen PH registry in Germany [7] and the ASPIRE (Assessing the Spectrum of Pulmonary hypertension Identified at a REferral centre) registry in the UK [8], which have both been used to explore factors linked with improved survival in patients with PH
Summary
Pulmonary Hypertension Association UK (PHA-UK) is the only charity in the UK especially for people affected by pulmonary hypertension (PH). One form of PH, pulmonary arterial hypertension (PAH), causes a progressive increase in pulmonary vascular resistance, leading to right ventricular failure and death. Estimates from large-scale national database studies suggest the global prevalence of any cause of PH is about 1% of the population, increasing to 10% in people over 65 years old [2]. The REVEAL Registry (Registry to EValuate Early And Long-term pulmonary arterial hypertension disease management) in the USA in 2006 [4] found that over 20% of patients waited more than 2 years from the onset of symptoms attributable to PAH and diagnosis [5]. Other registries used for PH research are the Giessen PH registry in Germany [7] and the ASPIRE (Assessing the Spectrum of Pulmonary hypertension Identified at a REferral centre) registry in the UK [8], which have both been used to explore factors linked with improved survival in patients with PH
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