THE LARGEST UK SURVEY EXPLORING ISSUES AFFECTING PATIENTS WITH PULMONARY HYPERTENSION
The Pulmonary Hypertension Association (PHA UK) is the only charity in the UK dedicated to supporting those affected by pulmonary hypertension (PH). PHA UK provides information and support to people with PH, delivers educational programmes and funds research. Click here to learn more about PHA UK.
To better understand the impact of PH on patients, in 2017 the PHA UK carried out a cross-sectional survey on the effect of PH on daily living in 567 individuals. This was followed by a further survey assessing the financial impact of PH in 171 patients. The results were published in the BMC Pulmonary Medicine journal in 2019.
The ‘Living with PH’ questionnaire was completed by 567 patients and explored four key topics:1
- Time to diagnosis
- Quality of life (QoL)
- Financial impact
- Patient experience of specialist treatment
TIME TO DIAGNOSIS
Early signs of PH, such as breathlessness, dizziness and fatigue, are common to many other conditions.2 The non-specific nature of these symptoms, coupled with the rarity of the disease means that PAH is frequently misidentified and many patients experience significant delays prior to diagnosis.1,2
The study revealed that 48% of patients waited more than a year after first experiencing symptoms before receiving a diagnosis.1
Delays occurred at several levels:1
- Patient level – Time between noticing symptoms and seeing a doctor
- Primary care – Time between seeing a GP and referral to a hospital
- Secondary care – Time between hospital appointment and referral to specialist PH centre
Time from first noticing symptoms to diagnosis with PH (n=545). Adapted from Armstrong et al., 20191
In the 12 months after first noticing symptoms, 30% of patients did not discuss these symptoms with a physician. A definite PH diagnosis was received by 11% of patients who saw only one physician, while 40% of patients saw ≥4 physicians and 9% saw ≥7 physicians prior to receiving a diagnosis.1
Sadly, the average time to diagnosis does not differ between those diagnosed in 2015–2017 and those diagnosed pre-2015.1 Click here to read about how PH is diagnosed.
IMPACT OF THE DISEASE
The symptoms of PH can affect patients’ abilities to carry out basic tasks, however the results of the survey demonstrate that PH has a much wider impact on patients’ lives.
Impact of PH on quality of life measures (n=567). Adapted from Armstrong et al., 20191
The results showed that 98% of patients considered that PH had either ‘some impact’ or a ‘major impact’ on their overall QoL.1
Nearly 90% reported that PH had an impact on their mental and emotional wellbeing and resulted in concerns about life expectancy. Nearly 80% of patients also reported that PH had an impact on their relationships and family.1
More than half of the patients (63%) felt that PH had at least some impact on their financial situation, including their ability to attend work or education. On average, patients who were in full-time employment at the time of their diagnosis lost a third of their monthly income.1
Percentage change in monthly income following PH diagnosis (n=116). Adapted from Armstrong et al., 20191
Findings from a follow-up survey on the financial impact of PH, completed by 171 patients, indicates that patients may struggle with:3
The symptom burden of PH can make it difficult or even impossible to work. Results revealed that following diagnosis, only 15.2% of patients were able to continue working as before (15.2% had to give up work, 12.3% had long-term sick leave, 11.7% had reduced hours and 44.4% were not working at the time of diagnosis).
Difficulty accessing benefits
Many patients are struggling to access benefits; 52% of applicants are turned down the first time they apply. Of these, 78% were then eventually awarded their benefits following the appeal process.
Additional cost of living with the disease
Patients reported spending, on average, £50 visiting the local GP, £90 visiting the specialist centre and £35 visiting other healthcare professionals each year. Patients also spent more money on help around the house, household bills, special diets and healthcare insurance.
This study reports the largest UK survey exploring the issues affecting patients with PH. It showed that patients are still experiencing lengthy delays in receiving a diagnosis, as well as emotional and financial impact from the disease. Evidence suggests that early diagnosis and intervention can improve patient outcomes,4–7 therefore it is imperative to try and promote these measures through education and awareness-raising initiatives. By identifying these areas, research can inform future care policies and long-term management to support patients living with PH.
- Armstrong I, et al. BMC Pulm Med 2019;21;19:67
- Galiè N, et al. Eur Heart J 2016;37:67–119
- PHA UK (2019). Beneath the Surface: The True Financial Impact of Pulmonary Hypertension
- Humbert M, et al. Circulation 2010;122:156–163
- Humbert M, et al. Eur Respir J 2010;36:549–555
- Condliffe R, et al. Am J Respir Crit Care Med 2009;179:151–157
- Dimopoulos K, et al. Circulation 2010;121:20–25