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?
| Autor: | Raquel López Reyes, Teresa Elías Hernández, Ana Álvez Liste, Pedro Bedate Díaz, Pilar Escribano Subías, Manuel López Meseguer, Gonzalo Fernández, Isabel Blanco Vich, Amaya Martínez Meñaca, Ines Fernandez-Cuesta Peñafiel |
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| Rok vydání: | 2020 |
| Předmět: |
Health related quality of life
Adult medicine.medical_specialty business.industry Visual analogue scale Hypertension Pulmonary General Medicine Middle Aged medicine.disease Pulmonary hypertension Rheumatology Cross-Sectional Studies Quality of life Spain Internal medicine Surveys and Questionnaires Patient experience Health care medicine Quality of Life Humans Pharmacology (medical) Observational study business Aged |
| Zdroj: | Advances in therapy. 38(4) |
| ISSN: | 1865-8652 |
| Popis: | Self-perceived health-related quality of life (HRQoL) of patients with pulmonary arterial hypertension (PAH) and chronic thromboembolic pulmonary hypertension (CTEPH) and their experience with the care received are important for improving their management. We conducted a study to assess both patient-reported outcomes (PROs) and how they interrelate. This was a cross-sectional, observational study of consecutive patients with PAH and CTEPH attending pulmonary hypertension (PH)-specialized units at 25 hospitals in Spain. PRO measurements used included CAMPHOR/EQ-5D-5L questionnaires (HRQoL) and IEXPAC (healthcare experience). Patient characteristics were collected. Relationships were analysed with Pearson’s correlation coefficient and linear regression analyses. A total of 185 patients with PAH and 93 patients with CTEPH aged 54.4 ± 14.4 and 64.8 ± 13.4 years were included: 63.6% and 72% were functional class (FC) I–II; median time from diagnosis was 3 and 2 years, respectively. Most patients with PAH received combination oral therapy. CAMPHOR scores indicated moderate-to-high impairment in the “activity” scale (PAH 21.6 ± 6.8; CTEPH 21.0 ± 6.3). EQ-5D-5L index and visual analogue scale (VAS) score (PAH 0.59 ± 0.15 and 65.55 ± 21.54; CTEPH 0.59 ± 0.13 and 66.95 ± 18.71, respectively) indicated moderate HRQoL impairment. HRQoL was mostly affected by FC. IEXPAC scores (PAH 7.08 ± 1.56 and CTEPH 7.13 ± 1.61) indicated good healthcare experience. In patients with PAH, the CAMPHOR “symptom” and “QoL” domains inversely correlated with the IEXPAC “patient self-management” factor. In patients with long-standing PAH and CTEPH with good disease control, functional limitations greatly impact HRQoL while symptoms and generic QoL were less affected. Healthcare received was perceived as good; however, use of information and communication technologies, patient associations and promotion of self-management should improve for enhanced patient experience. |
| Databáze: | OpenAIRE |
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