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Survey Finds Unmet Needs Despite Good HRQOL for Patients With PAH


Despite patients with pulmonary arterial hypertension reporting good quality of life and low symptom severity, functional limitations persisted, suggesting improvements to the patient experience are needed, according to researchers.

Patients with well-managed chronic pulmonary arterial hypertension (PAH) or thromboembolic pulmonary hypertension (CTEPH) exhibited mild symptom severity and good quality of life (QOL), but still experienced a significant burden on functional capacity, according to a study published in Advances in Therapy.

The cross-sectional observational study leveraged patient perspectives on disease outcomes and quality of care to determine whether more effort is needed to improve patient experience.

“Involvement of patients in the control of their disease contributes to their engagement, a concept that goes beyond the active role in care decisions to include involvement in health organization decisions and in policymaking,” wrote the investigators.

Over the past 20 years, new therapies have led to better long-term prognosis for patients with pulmonary hypertension (PH), which includes both PAH and CTEPH. Although patient-perceived QOL is well documented in other pathologies, it has not been analyzed within the PH space. Additionally, the QOL assessments that have been done often do not include patient perceptions on the impact of the disease and therapies.

Gaining patient knowledge and experience from patients has been shown to increase treatment adherence and decrease use of health care resources for other conditions. Current approaches to achieving optimal disease management for chronic conditions recommend an active partnership between patients and health care providers.

“This patient empowerment and activation requires both education (practical and emotional) and support for self-management, with the latter including sources of high-quality information on the Internet,” wrote the investigators.

The study was conducted from November 16, 2017, to July 20, 2018, and included information from 278 patients recruited from 25 hospitals in Spain who were over the age of 18 and had a diagnosis of PAH or CTEPH.

Patients were asked to fill out 3 surveys: 2 (CAMPHOR and EQ-5D-5L surveys) that addressed health-related QOL (HRQOL) and 1 (IEXPAC survey) that assessed their experience with chronic illness care. Questions in the IEXPAC survey referred to patients’ experience for the previous 6 months and had an extra item for recently hospitalized patients, which extended to 3 years.

Of the included patients, 185 (66.5%) had PAH and 93 (33.5%) had CTEPH. The mean (SD) age was 54.4 (14.4) years for patients with PAH and 64.8 (13.4) years for patients with CTEPH. The percentage of patients classified as having a functional class (FC) 1 or 2 were 63.6% for PAH and 72.0% for CTEPH. The median time to diagnosis was 3 years and 2 years for patients with PAH and CTEPH, respectively. The CTEPH group had a smaller proportion of women than the PAH group (55.9% vs 69.2%).

The mean scores for the CAMPHOR survey were similar for both PH types and showed relatively low impairment for symptoms and QOL. However, the scores demonstrated a moderate-to-high impairment in activities capabilities. Investigators suggested that high symptom and QOL score may indicate a degree of adaptation or resignation to the functional limitations resulting from their disease.

“It is worth noting that in spite of this, functional limitations still have a profound impact on their lives which, not surprisingly, is greater among younger patients,” said the investigators.

The EQ-5D-5L survey also yielded similar results between PH types with regard to mean (SD) index (PAH, 0.59 [0.15]; CTEPH, 0.59 [0.13]) and visual analogue scale (PAH, 65.55 [21.54]; CTEPH, 66.95 [18.71]) scores, indicating moderate impairment in HRQOL (P = .958 and P = .595, respectively). HRQOL was most impacted by FC classification.

Pain and discomfort were identified as the domain with the lowest severity among patients, generating scores of 1.4 for PAH and 1.6 for CTEPH.

For the IEXPAC survey, similar overall mean scores were achieved for PAH (7.08 [1.56]) and CTEPH (7.13 [1.61]; P = .799), indicating a good health care experience. Additionally, 40% of patients who had recently been admitted to a hospital said that they felt that hospital staff “mostly” or “always” cared about them after they were discharged.

The investigators identified the nonrandomized selection of investigators and the varied pacing of inclusion periods between hospitals as study limitations.

“The overall experience of patients with PH with the care received is good, although an effort is needed to improve patient experience through better information and by educating patients using [information and communications technology], fostering relationships with others and, especially, by promoting their self-management,” the investigators suggested.


Meñaca AM, Vich IB, Meseguer ML, et al. From health-related quality of life (HRQoL) of patients with pulmonary hypertension to patient experience with the care received: should we be more aware of current patient needs? Adv Ther. Published online March 6, 2021. doi:10.1007/s12325-021-01625-w

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