Pulmonary hypertension (PH) is a chronic and progressive disease. While prognoses have improved, PH patients still experience side effects and activity restrictions. Accordingly, the key questions asked by this study are ‘How many PH patients have depression/anxiety symptoms?’ and ‘Is there a difference in the symptoms and distress factors between pulmonary arterial hypertension (PAH) and chronic thromboembolic PH (CTEPH) patients, and how are they experiencing distress?’ A mixed-methods study was conducted to collect and analyse quantitative and qualitative data. We administered questionnaires (Patient Health Questionnaire (PHQ-9) and Generalised Anxiety Disorder-7) and then conducted interviews with participants who reported moderate to severe depressive symptoms (PHQ-9 ≥10). Seventy-four participants were enrolled in the study, 25 with idiopathic PAH and 49 with CTEPH. Their average age was 55.2 years (PAH 42.7 years, CTEPH 61.5 years). Overall, 44.6% of participants had mild or more severe depressive symptoms (PHQ-9 ≥5) and 17.6% had moderate or more severe depressive symptoms (PHQ-9 ≥10). PAH patients had particularly high depressive symptoms (PHQ-9 ≥5: PAH 64.0%, CTEPH 34.7%; PHQ-9 ≥10: PAH 24%, CTEPH 14.3%). We extracted four common themes from the qualitative interview data on participants’ experience of psychological distress: ‘Loss of myself,’ ‘Isolation from my surroundings,’ ‘Hassle associated with oxygen therapy,’ and ‘Fear of illness progression/deterioration.’ One theme— ‘Suffering from side effects’—was extracted only for PAH patients, while another—‘Rumination on illness due to breathlessness’—was extracted only for CTEPH patients. The study found that PH patients are prone to depression. The identification of factors and themes that influence the psychological distress of PH patients is important information that can be used to improve the support for the physical and mental health of these patients. Interventions for these distress may contribute to improving the mental status of PH patients.
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