Pathways to experiencing mental problems and need for mental support in patients with pulmonary arterial hypertension

Pulmonary arterial hypertension (PAH) affects the physical and emotional wellbeing of patients. More information is needed regarding mental problems and preferences for support. Qualitative interviews were used to explore mental problems and preference for support of PAH patients. Additionally, a survey was used to assess the presence of mental problems (Problem List), distress (Distress Thermometer) and the need for mental support. In 24 semi-structured interviews, the following problem themes were identified: energy balance; loss of abilities; feeling misunderstood; and handling of worries and emotions. Need for support was based on an interplay between resilience to psychological distress, additional life problems, age, disease status, attitude towards professional help, and experienced support from significant others. The results from the survey highlight the need for professional support, as 50.8% of the 67 patients who completed the survey would consider support when offered, specifically when offered by a pulmonary hypertension (PH) professional. Younger age (odds ratio [OR] = 0.97, P = 0.04), depression (OR = 11.435, P = 0.001) and possibly anxiety (OR = 3.831, P = 0.069) were related to need for support. In conclusion, many patients with PAH are in need of mental support, which should be offered by a PH professional and tailored to phase of the disease and personal characteristics.