Patients with pulmonary hypertension (PH) living in the U.K. experience delayed diagnosis, which has important implications for their financial and emotional status, according to a survey conducted by the Pulmonary Hypertension Association UK (PHA-UK).
The results were described in an article, titled “The patient experience of pulmonary hypertension: a large cross-sectional study of UK patients,” published in the journal BMC Pulmonary Medicine.
Several factors can influence the wellbeing of patients with PH, including time of diagnosis, treatment strategies, and symptoms management.
Large-scale studies can provide insights on treatment and management needs in a particular population, but this study approach does not necessarily reflect patients’ individual responses or unmet daily needs.
Identifying patients’ disease-related concerns may help identify areas for improvement, such as population education, treatment strategies, and policies related to PH. Implementing changes in these areas can ultimately improve the wellbeing and quality of life (QoL) for these patients.
To assess unmet needs of PH patients, the PHA-UK — the only charity in the U.K. dedicated to those affected by PH — evaluated the opinions of patients about the treatment and management of their disease. Two sets of questionnaires were sent to members: a principal survey about time to diagnosis, QoL, financial impact, and specialist treatment, and a follow-up economic impact survey. The questionnaires were available through an online link, in the association’s magazine, or at specialist centers.
A total of 563 participants were included in the study (70% female; group mean age was 59 years), among whom 351 agreed to participate in a follow-up survey on financial impact — of these, 171 completed the survey.
Survey results showed that a vast majority of the participants felt that their PH had a “major impact” (60%), or “some impact” (38%) in their overall QoL. A majority of the participants also reported that their QoL either “improved a lot” (45%), or “improved a little” (42%) following their treatment and management of PH.
In addition, PH was found to have a negative impact on patients’ mental and emotional wellbeing due to concerns about life expectancy (reported by 90%), and their relationships and family stability (79% of cases).
Results also showed that, in general, patients often had delays in diagnosis. Nearly half of the participants (48%) were diagnosed one year or later after experiencing their first PH-related symptoms. Also, while a few of the participants (11%) received their diagnosis after seeing one healthcare professional, 40% needed to undergo consultations with four or more healthcare professionals before receiving a final PH diagnosis.
About 78% of the patients regularly attended PH specialist centers, and the majority (89%) reported positive experiences, stating that the support they received was “good” or “excellent.” Most of the patients felt that they were involved in their disease-related decisions, and that they received relevant information on disease progress and treatments. However, according to their responses, less than half (40%) stated that they had received information about financial support.
The team found that 63% of the participants felt that the disease had at least some effect on their financial situation. PH treatment and management did not improve patients’ financial status in 58% of cases, or their ability to attend work or education in 62.7% of patients.
Most workers experienced reduced monthly incomes, with a mean decrease of 33.3% for full-time workers, and 13.4% for part-time workers. In contrast, retired patients experienced slight increases in monthly income (mean increase of 1.5%).
These findings of delayed diagnoses and high financial burden associated with PH are in accordance with previous studies conducted in the U.K., as well as in other countries including Australia, France, and the U.S.
“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,” the researchers concluded. “Collecting patient responses, both through the survey and the qualitative answers provided by patients, is vital for understanding the full patient experience of the disease.”
According to the team, “by engaging with patient experiences, a full understanding of the patient journey can be put together and used for public healthcare advocacy, ensuring patient needs are reflected in treatment guidelines and legislation to improve health, wellbeing, and QoL of patients with PH.”